Insulinoma & Whipple triad – Surgery (update)

Sunday, 15th January 2006

Insulinoma

Insulinoma is the most common functioning tumor of the pancreas, and affected patients present a tableau of symptoms referable to hypoglycemia (symptoms of catecholamine release), mental confusion and obtundation. Many patients have symptoms for years. Some have been greatly troubled by emotional instability and fits of rage, often followed by somnolence.

Incidence: This tumors are so rare. Probably the best series of insulinomas is from the Olmsted County (Mayo Clinic). This study (cohort) was seen over a sixth decade period (‘27 to ‘86). The incidence there was 0.4 per 100,000 person-years (or four cases per million per year).

The diagnostic hallmark of the syndrome is the so-called Whipple triad, wich consists in symptoms of hypoglycemia (catecholamine release), low blood glucose level (40 to 50 mg/dL), and relief of symptoms after intravenous administration of glucose. The triad is not entirely diagnostic, because it may be emulated by factitious administration of hypoglycemic agents, by rare soft tissue tumors, or occasionally by reactive hypoglycemia. The clinical syndrome of hyperinsulinism may follow one of two patterns or sometimes a combination of both.

The symptom complex may be due to autonomic nervous overactivity, expressed by fatigue, weakness, fearfulness, hunger, tremor, sweating, and tachycardia, or alternatively, a central nervous system disturbance with apathy (or irritability or anxiety), confusion, excitement, loss of orientation, blurring of vision, delirium, stupor, coma, or convulsions.

Because cerebral tissue metabolize only glucose, prolonged profound hypoglycemia may cause permanent brain damage. Clinicians need to be alert to this when attempting to induce hypoglycemia by fasting.
Preoperative NPO orders must be accompanied by intravenous administration of glucose.

The diagnosis: Is established by demonstrating inappropriately high serum insulin concentrations during a spontaneous or induced episode of hypoglycemia. Then imaging techniques are used to localize the tumor. The available procedures include spiral CT, arteriography, ultrasonography (transabdominal and endoscopic), and 111-In-pentetreotide imaging. Transabdominal ultrasonography is our preferred initial test.

Insulinomas are small (usually <1.5 cm), usually single (only 10% are multiple and those are usually associated with MEN 1 syndrome), usually benign (only 5% to 10% are malignant), and usually hard to find. Success in localization often parallels the degree of invasiveness of the study.

Its treatment:
Treatment for insulinoma is surgical. At operation, the incision is dictated by operator preference, either a midline incision from the xiphoid to below the umbilicus or a bilateral subcostal incision. Exposure should be generous, and mechanical ring retractors are an asset. The entire abdomen should be explored, with particular attention being paid to possible liver metastases.

The head of the pancreas should be palpated carefully and examined anteriorly and posteriorly; the body and tail of the pancreas should be palpated, dividing any ligamentous attachments to the spleen, delivering the spleen into the wound, and rotating the tail anteriorly to allow palpation and visualization.

Anyone operating patients with pancreatic islet adenomas should be familiar with techniques for, and limitations of, intraoperative ultrasonography. The higher-resolution (7.5-to 10-MHz) transducers are used in the pancreas; because of its greater depth of penetration. Islet tumors are detected as sonolucent masses, usually of uniform consistency. Several reports attest to the high degree of accuracy of intraoperative ultrasound.

Review of current literature leads to the almost startling conclusion that nearly all syndromes of hyperinsulinism are due to insulinomas and that nearly all insulinomas can now be detected before or during surgery. Having said this, there appears to be scant justification for an empirical (“blind”) partial pancreatectomy except in patients with insulinoma plus MEN 1.

Most insulinomas are benign and can be enucleated. Nutrient vessels in the bed of the adenoma should be cauterized.

The 10% of patients with hyperinsulinism who have MEN 1 syndrome have multiple islet tumors, one of which is usually dominant and responsible for the excessive insulin output.

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1,538 Responses to “Insulinoma & Whipple triad – Surgery (update)”

Angie

Friday, 1st December 2006 at 5:46 am

I am suffering from an insulinoma (I am not a ferret or a dog) and have just elected for surgery in feb 07. I would like to hear from other people who suffer or who have had the surgery or/and their experiences. All i keep finding is experiences from ferrets not people, so glad I have something in common with them!

It seems I have been living with low blood sugar for years and have put up with it thinking this is a peculiar part of me. It was only after a blood test this year that deduced my glucose levels were particularly low that started the ball rolling – and baby has that ball rolled!

After a 72 hr fast – I lasted 30 hrs with two hypos, an MRI and CT scan i then had a calcium catheter test and recently and endoscopy, all confirming what they thought and what it was doing. I have been prescribed Diazoxide tablets to control the insulin and now a diuretic to control the odema from the diazoxide.

Now, I am booked in for surgery and freaking! The medication really helps but not all the time so really at 40 I really dont want to live like this, however scared of the surgery. I actually dont know what it will be like to be normal again and just hope that I dont suffer more complications from the surgery that will make me question whether it was worthwhile having the operation or sticking with the medication.
JonMikel, M.D.

Saturday, 2nd December 2006 at 1:55 pm

I wish you luck with the surgery. I think that everything is going to be o.k.
Get well,

Dr. Jon Mikel Iñarritu-Castro
Helen Bruce

Friday, 5th January 2007 at 6:03 am

Hi Angie,

I am a 36 year old that had insulinoma and had the tumor removed last April and all is well.

It was a very big and scary decision to make, however as you I did not want to live with this condition. I am pretty sure that the decision would of been taken out of my hands anyway as I had a reaction to diazoxide (which I believe I was my consultants first patient to have a reaction). I then went onto injecting myself 3 times a day with octreotide which got quite depressing at 10 o’clock at night when you’re tired. Anyway whilst on octreotide I was still having hypos not as often though, therefore I think I was heading towards the surgery.

My op went well with no complications and was in hospital for 2 weeks. I had an excellent surgeon with whom I had a lot of confidence and trust in, he is a top consultant surgeon of Hepatobiliary and Pancreatic Surgery. I can suggest (if you have not already done this) that you do some research on your surgeon and most importantly ensuring he/she is experienced in doing this procedure.

Are you going to have an epidural during and after the op? If you do I would suggest that when they want to take you off the epidural you go onto the patient control morphine then onto the oral morphine. They took me off the epidural and straight onto the oral morphine which did not work, I was in terrible pain. I think you need to go down the different level of pain relief evenly. They did this as they thought I was doing very well and would cope with just the oral pain relief.

I would say that the first two months after surgery is difficult in getting back on your feet and sleeping was a nightmare for me as I like to sleep on my side/tummy. Besides the little hurdles during recovery I am happy that I went with my feelings of getting the tumor removed and trust me I had loads of questions and doubts but my gut feeling was to do this.

I hope that my words have helped you and only you can decide what route you take. I will check this website in case you have any more questions. Wishing you the best for a successful operation and speedy recovery.

Take care
Helen
Angie

Monday, 8th January 2007 at 12:31 pm

Dear Helen
Thank you for taking the trouble to reply to me with your experiences. February is looming up quite quickly.

i would be interested to know where you had your surgery, Im going to be going to the Royal London, Whitechapel.

Since writing the above I have done a bit more reading and have looked into things a little deeper and although at one point I felt it was a very drastic option I now see that having the surgery eliminates any danger of the tumour turning malignant and suffering any more major complications. I have the occaisional hypo, for no reason as I can see, and I know my blood sugar is still low a lot of the time. I have also read that the hypos can turn more severe without warning and this was something to really think about.

The largest worry I have over the surgery is the whipple procedure and the complications resulting from that. As far as having an epidural, I havent discussed it at all, in fact it hasnt even been mentioned. I am going for my pre-admission in the next two weeks so I am hopefully going to find out a little more about the whole thing.

Thank you again for writing and am very glad to hear everything went so well for you. Anything else you think of would be very much appreciated.

Best Wishes
Angie
Helen

Monday, 8th January 2007 at 4:34 pm

Hi Angie,

I think it may be better if we talk if you would like to that is. If so email me at helen.bruce@swessexpct.nhs.uk.

I would like to mention names etc and would prefer not to do it via the website.

Looking forward to hearing from you.

Best wishes
Helen
Brendan

Wednesday, 17th January 2007 at 1:30 am

Angie,

I’m a 31 year old who had an insulinoma removed laparoscopically last year. My life was severely impacted by hypoglycemia – confusion, blackouts, disorientation were a daily occurrence – and the surgery has made all the difference in the world. I spent a month on a glucose PICC line prior to surgery, but because it was done via laparoscope, I was out of the hospital and mostly mobile three days after surgery. I had to have a drain in my abdomen for a further four days, but following that I was able to go to work and function normally. Had I not had it, my hypoglycemic episodes were getting worse and worse, so I’m sure I would’ve eventually gone comatose had it not been treated.

If you have any questions, let me know, but I would very much recommend surgical treatment. It has returned my quality of life to me.

Brendan
Homa

Thursday, 18th January 2007 at 9:53 am

I am a 38 year old who has had insulinoma for the past four years. I had surgery four month a go which was uncussful. They were not able to find the tumor. It was an extensive surgery and it took me more than a month to get back on my feet.
I am going to another hospital in the near future to start all over again. Since surgery is the only cure for insulinoma, I know I will have another surgery eventually. I am not worried about that part. I am more ready for it this time. Since I know what to expect. It would be a little easier. I just hope they can find it this time.

I have had more hypo episodes since the surgery and they have gotten more intense with blackouts. I would like to know if anyone had to go through second surgery to find the tumor and if anyone experineced the hypo episodes suddently getting worse. It is hard to have something that not many people have. Nice to see how other people who have insulinoma are coping with it.

good luck to everyone
Homa
myriah

Thursday, 18th January 2007 at 4:04 pm

I have been going to the doctor since I was a 1 yr. old. I have had my thyroid and blood sugar level checked every other year of my life. I am 28 yrs old and have insulinoma. I am meeting with a doctor in a few days to go over treatment and surgery stuff. At one years old I sneaked out of my room and got up on the kitchen counter and found the sugar bowl. My mom found me shoveling straight sugar in my mouth. From then on out I have needed sugar like crazy. A pound a day, and now I am up to two pounds a day. Once again I went to the doctor and had more blood taken. Then they found this. I have all the side effects listed. Blackouts and all. I wish the best for all of you. So wierd. Myriah
Angie

Tuesday, 23rd January 2007 at 4:37 am

It is certainly interesting getting a few more opinions and experiences….

Dear Brendan
It sounds like the laparoscopy is obviously a successful option if possible but so far my surgeon has decided it can not be done this way with mine.

I do feel that my hypo episodes are not nearly as severe as those of you who have blacked out but feel that going on the information they could easily become as worse with out warning. Many of my symptoms have only come to light and made sense since being diagnosed, the severe night sweats, fuddled speech and distorted sight! I have had a one weird episode recently, when I felt disorientated and a bit “out of it” almost like a lapse in time, seconds I’m sure, but I have definitely been confused once or twice! (Mind you that may be normal!!!)

Best of luck!

Dear Homa
I’m very shocked that you had to go through such serious surgery when they couldn’t find the tumour! Did you have scans and tests? I went through extensive procedures, MRI & CT scans then the calcium infusion test, which can be a full body or just pancreas and liver area and finally the surgeon requested an endoscopy before he would even consider an operation.

I wish you luck in the future.

Dear Myriah

It seems terrible that is has taken such a long time for you to be diagnosed!
Unfortunately for you such a huge ingestion of sugar will only raise your insulin levels which in turn lowers your blood glucose. I have read a lot about diet and insulin. The more sugar you eat the worse you will be. Such a sugar intake creates huge fluctuations in your body with severe lows. Try and resist your cravings and eat cereal bars or fruit instead, even if you eat a lot of small low sugar snacks it surely must be better than such a huge sugar based diet.

I would imagine your doctor should advise you of this so dont take my word for it, read up on diabetes as it has very similar advice for keeping a balance to help diabetics control their symptoms.

An interesting book to read is the Greek Doctors Diet Book by Dr Fedon Alexander Lindberg. He carefully looks at the effect of insulin on the body which I found quite interesting as many times my problems with keeping my weight under control have been ignored even after diagnosis. He says that too much insulin makes you fat!!! Im only part way through so bear with me!!

Ive got two weeks to go now and just want to get it over and get on with recovering!

Thank you for adding to this page it makes really interesting reading and hopefully more people will find it the more goes on!!

Look forward to hearing more!!

Angie
Myriah

Tuesday, 23rd January 2007 at 3:45 pm

Hey Angie, thanks for the reply! I am leaving a site I found about what I have. Almost the same story except she only had her syptoms for two years. I guess the show “house” took after this story! As for the sugar levels, I know!!! I also eat fruit like a mad lady. PER DAY I eat a full Safeway bag of green grapes and 2-3 grapefruits. I even have them sent to my house! OUt of control. The weird part is that my glucose levels are PERFECT! Even a regular blood sugar test, perfect! I wake up in the night all night long eat a grapefruit first and then all the candy! I of COURSE struggle with my weight because it is so bad. That is a huge side effect of insulinoma. For me I am huge. I change on an average of 5 pounds a day. Yesterday I was at 122 and the day before I was 116. A few months ago I was 107. I feel like one of the toy capsules you put in the water and watch them turn into an animal! I had to go to the doctor both days and they laughed right out loud. THey weren’t going to weigh me on the seconds visit, so I told them too. They were shocked! Of course all the swelling hurts like mad, but what can I do? I am only 28 years old and feel like I am 180. The Endocrinogist is now running a ton more labwork and I have to keep pricking myself like diabetics do. I am so jelous you have surgery soon. I want this thing out of me in the worst way!!!! I have a three year old and I want to try to keep up! I am so glad someone has this(not to be rude) because it’s hard to talk to a Ferret! :) I am excited for you to see this site, you will LOVE IT! Talk to you soon hopefully, and I wish you the best of luck! Everyone the best of luck! This thing is so debilitating!!!!!!!!!!!!!!! grrrrrrrrrrr
Myriah

http://cancer.stanford.edu/features/patient_care_news/insulinoma.html
Myriah

Tuesday, 23rd January 2007 at 3:56 pm

Angie,

Oh yeah one more thing. I did try the small snacks thing and resisted the cravings. Unfortunately that’s when the blackouts started to happen. I got so shaky and ate something that wasn’t fruit or candy and then I blacked out about 30 seconds later. Same thing the rest of the times I have tried. I have showed my family and it’s almost like a comedy.(of course it’s not funny)
Thank you for the book advise as well I will be sure to check it out. I was a HEALTH nut before this because of some modeling and traveling I use to do. I am just glad I still have some hair left on my head. Thank you so much for your advice. I have been researching this on my own for years! You have no idea to know how good it feels to not be so alone.

myriah
Myriah
JonMikel, M.D.

Tuesday, 23rd January 2007 at 4:32 pm

Kind patients and readers,

If anyone here wants more detailed information or even illustration of the surgical procedures, please don’t hesitate and contact me here.

Best of all,

Jon
Angie

Tuesday, 23rd January 2007 at 5:27 pm

Dear Myriah

You seem like you are going through such a nightmare, and I can not begin to imagine how bad this is for you. I hope I didnt sound demeaning, but the amount of sugar you have to get through is just so horrific. It is easy with a little knowledge to make quick judgements and I hope your doctors start taking you more seriously!

Insulinoma obviously has many far reaching effects on our bodies and I suppose as it is so rare all the answers probably are just unknown. I hope you find a way through this quickly and wish you well! I will look up your site!
Angie
Myriah

Thursday, 25th January 2007 at 3:00 am

Oh no! You absolutely did not sound demeaning! If I didn’t want to hear your opinions or input, I would NOT have even written!!! As sick as this sounds I am so excited for your surgery. When you are all ready and better I would love to hear all about it! I know your surgery will be a success and I am so glad you are on your way to feeling much better! Thank you for all your insite. The picture on this site makes me glad I am not a surgeon. The whole thing doesn’t look right to me! :) Take care and I hope you liked that site! Myriah
Homa

Thursday, 25th January 2007 at 2:22 pm

Dear Angie
I did go through some tests before surgery. I had a CT and endoscopy, but there were not able to find the tumor on either one of the tests. My doctor decided to go ahead and have an exploratory surgery, Since it appeared that the tumor was very small, instead of doing the calcium infusion test. Surgery does have a high success rate in finding the tumor.I am going to another hospital in the next couple of month and start all over again with diagnosis. I am sure they will do the Calcium infusion test this time. I have heard that it was an invasive test. I know you mentioned that you had it done. How was it? was it really invasive?

I wish you luck with your surgery. The good news is that they had found your tumor so it eliminates the guessing game. they can just go in and remove it. I am sure you won’t have any complications afterwards. My only advice is to take it easy. don’t push yourself and just let your body heal. It takes a while, To not have to deal with insulinoma, is very much worth the trouble of recovering after surgery. It sounds like that your surgery is fast approaching. I wish you the best and good luck

Homa
Myriah

Friday, 26th January 2007 at 5:07 pm

Angie,
I am SO bummed I could cry. Just got more blood work back and the Endocrynologist told me I did NOT have insulinoma. He said I was hypoglycemic and only 70% chance that my symptoms improve. Also my sweating and my average 10 pound weight gain/loss isn’t a part of this. He said it is not hormone related and that he doesn’t know what to do. I have been to EVERY specialist and have all my symptoms personally documented. I went to my son’s school today and had to walk around for an hour. I just about passed out. Providence misdiagnosed me and told me I had insulinoma for sure and that they needed to give me an MRI and or CT scan to find it. WEll just wanted to give you the heads up. You take care and I will be thinking of you. I know your surgery will go great and I still want to hear all about it when you get back energy to write.
Sincerely,
Myriah
Jon Mikel Iñarritu

Saturday, 27th January 2007 at 12:18 am

Angie: I wish you luck in your surgery

Myriah: WHAT? How did he figure that you don’t have insulinoma? Do you have the results of your last blood work?

Anyway, you have the right to ask for a second opinion.

Several insulinoma cases are diagnosed at surgery with transoperatory ultrasonography, like the case of Homa.

Best of all,

Jon
Angie

Saturday, 27th January 2007 at 7:02 am

Myriah

How can they say you dont have insulinoma from blood work alone? With all your symptoms and already one opinion you have whay reasons do they have?

My hospital confirmed the insulinoma after the fasting test. You probably know that normal peoples pancreas stops producing insulin when the body does not have any food intake but the insulinoma continues to secrete insulin so our blood sugar continues to drop. Surely this is the test beyond blood work that they need to take account of.

I seem to have been so lucky that my doctor had a colleague in endocrinology and just happened to be on the ball. All I can do is wish you luck and keep positive that someone will get to grips with this for you. Dont loose hope!! Give them hell!!

PS I wish I was 120lbs!!!! (Im 5ft 7 and weigh 160 lbs which is at least 14 -21lbs more than I want to be, 14lbs of that Ive put on in the last 2 years and thats trying to lose every week)

Best of Luck
Angie
Angie

Saturday, 27th January 2007 at 7:23 am

Dear Homa

You asked about my infusion test…. well I didnt find it bad at all really.
The worst part was the local anaesthetic injection into my groin. Then there was a lot of pressure as they put in the tubes with the wires in. This may not be exactly correct but I will describe it as I remember and going by what I was told – probably in lay mens terms. I didn’t feel anything much as the wires were pushed through the artery, I think I had one in a vein as well.

I watched on the monitor as the wires appeared and as they directed them into the various arteries that they wanted to test. I find things like this very interesting. As the calcium infusion was released I could see a slight fog rising on the monitor and felt an odd warm flush go through my body – wierd!

That was it really! I had to lay flat for four hours afterwards as the vein or artery could rupture. Eating soup horizontally is a real challenge!

I believe they test the hepatic artery going into the liver as well so that they can pick up any rogue cells that may have found themselves an escape route. I think, but may be wrong that this gives one indication of whether the tumour has possibly matastisized.

I hope this helps a bit – I honestly found it fairly routine in the general scheme of things.

Good luck, keep me informed!!

Angie
Angie

Saturday, 27th January 2007 at 7:32 am

Dear Jon

I have been wondering if you know anything about the need for enzyme supplements if you have the whipple procedure? I imagine that when part of the intestine and the gall bladder are removed you lose those areas that secrete such enzymes?
Do you have to take them in tablet form?
Do you take them before every meal?
What happens if you dont?

I just like to be pre-warned!

Oh yes do you know anything about the effects of Diazoxide?
Ive developed increased hair growth from literally my head to my TOES!!! Will this fall out when, as I have, stopped taking it?

Thanks for any info you can give.

Ps Are you using this blog for research? I think its excellent to be able to read and discuss all this and not feel stupid.
Michelle

Saturday, 27th January 2007 at 2:55 pm

I have been suffering with hypo ‘episodes’ for the past three years and recently did a 72 hour fast in the hospital, which confirmed that I have insulinoma. The next step for me is to have the various imaging tests to localize the tumour. I am terrified of having surgery, but am also relieved to know that it can be removed and I will hopefully lead a normal life again. Everyone’s experiences have been helpful to read. I wish you all luck and hope you can live a normal life again soon. I am anxious to hear how your surgery goes Angie. It sounds like you have done your research and I am sure that everything will be fine. Best of luck.

Michelle
Myriah

Saturday, 27th January 2007 at 3:10 pm

Hey Jon it’s Myriah,
Providence said I had it and to go see this guy Dr.Liao that they recommended. Then I went to see him and right then and there said just from the blood work he didn’t think I had insulinoma. He had more blood taken for tests and he said it would show if I did in fact have insulinoma. He called me yesterday and said that no way I have it. He said that he would get me on a medicine that could help the hypoglycemia. However it was only a 70% chance that it would help. HE said all my swelling and hair loss are not going to help with this medicine and to go back to my regular doctor. Apparentely, my blood sugar levels are PERFECT and nothing unusual. IF that were the case then why would he say I even have “severe hypoglycemia”?

I am stuck. I can’t even wear jeans anymore. IT literally rips my skin. You can see every imprint and make of jeans. I have bought the top 5 designer jeans out there and now am over a thousand dollars in the hole hoping they would not hurt somehow. I am so tired. I am struggling to keep my weight off and I can NOT work out what-so-ever. I will come back from the gym with my body swollen and little blood specs on my ankles where my socks were. (Not actual blood out on my sock just little blood vessels all over) I gain a minimum of 5 pounds of solid fluid after the gym. That’s with a low impact workout.

My hair is barely on my head. My skin is WHITE as a ghost. I am Italian and I have never been anything but olive skinned. Obviously, something is not right. I use to model before my son was born and now I look and feel like I am a corpse. The circles under my eyes are so bad it looks like someone hit me.

Apparently the specialist, (David Liao of Western Washington Medical Group) got his training from Harvard and University of Washington. I have no reason to believe he is wrong in his diagnosis.

I have no one else to talk to about this. I am working only 3 hours a week to keep my job. I am on bed rest the next day because of the toll it takes on my body.

I am willing to hear any opinions you may have. I am stuck and I feel like a freak show. My husband doesn’t understand and I think he just wants his wife back. I don’t complain because he works 60 hours a week and he himself has undergone 2 open heart surgeries by the age of 25. His next surgery is next year and he will be 33. I want to be well so that I can be super strong after his surgery. Thanks for listening and I hope to trust you are a Medical Doctor.

I can handle pain, but the pressure of this is unbareable. I am 118 pounds now and feel bigger right now than I did before I delievered my son. I was at 172 pounds when I delivered. THat feeling that I am going to pop is scary. I am like a bad zit that needs to just go away. I am scared if I fall or something all this fluid is going to come out and drown us all. ha ha :)

Well that’s all my rambling for now. Hope I didn’t bore you.

Is there any way I can have the blood work released? I also agree about the scan like in Homa’s case. Dr. Liao said that wouldn’t need to be done and there was NO WAY I have insulinoma. None of the blood work indicated any abnormalities. Grrrrrrrrrrrrr I’m not making this up!!!! IF I were at least I would keep the hair on my head! :)
Toni

Thursday, 1st February 2007 at 6:58 pm

I am so glad I found this website. I am going inpatient next week to do the 72 hour test etc. to determine the cause of my almost daily hypoglycemic episodes.

My episodes have been going on for over three years (now that I think about it); however, I didn’t find a doctor who gave any concern to them until November 2006 when I went to an Endocrinologist associated with Vanderbilt Hospital in Nashville.

The following is a summary of my symptoms and experiences:

1. My blood sugar levels go as low as 27 and stay in the high 50’s and 60’s “on a good day.” Of course, my head feels as if I’m intoxicated and often feel “hung over” for many days.

2. I work 8-5 in an office and can barely make it through the day without wanting to take a nap. There are many days I have to take one or I feel like I’m going to fall out from exhaustion.

3. I have days when I am starving and want to eat every 2 hours. However, eating often doesn’t seem to keep the blood sugars at anywhere near a normal level.

4. Most recently I’ve been experiencing night sweats so bad that I will actually have sweat running down the middle of my back and chest. I wake up with my pajamas wet and damp. (Until 2 weeks ago I blamed this on pre-menopause as I am almost 47; however, at my annual exam in January I had labs done which indicated my hormone levels were normal.) I talked to the Endo who confirmed this was another symptom of hypoglycemic episodes.

5. I have a history of depression which is controlled by medication. (Genetic predisposition and some pretty poor life choices don’t help!) However, I find that I get so angry at times that I want to scream and will have to let whoever it is who has upset me know exactly what they’ve done to upset me. In doing so, I don’t spare ANY words. I’d describe them as more of honest outbursts than just plain hurtful ones. In any case, we all know that doesn’t get you very far in this life! Most people don’t like to hear what they are doing that is so wrong!

6. I have had a problem with blurred vision for the last several years. This hasn’t been attributed to the hypoglycemia by a doctor but I wonder if it could be.

I have undergone major abdominal surgery in the past 6 1/2 years and am really scared to find out whether I have in insulinoma because then I will have to make a decision to have it removed. I just don’t know if I can handle being cut again. I’m not scared of surgery and actually am a very good patient who is compliant and heals quickly but am tired of being the person who is ALWAYS having some kind of surgery.

I’d love some feedback from others regarding this post. No one around here understands what I’m going through and I feel they think I’m just exagerating my symptoms but if they only knew how bad I felt most days.

Just like now, I’m lightheaded and dizzy. I’m not feeling like I do when my sugar is low but feel this way sometimes. Go figure.

Thanks for letting me vent.
Brendan

Friday, 2nd February 2007 at 1:05 am

Toni,

Those symptoms sound very familiar. It’s miserable (and life changing) and it’s impossible to explain the severity to other people.

When I did the 72-hour test (which actually only took four hours to complete, as my blood sugar dropped from my post-breakfast 64 to 35 in 3 hours of inpatient care), and was succesfully diagnosed, my endocrinologist had a PICC line inserted into my arm with a glucose infusion. I had the PICC line all the way through surgery a month later, and while it was somewhat of a hassle, it kept my blood sugar at a stable level during the entirety of my post-diagnosis/pre-operative phase. I was lucky enough that my health insurance covered the whole thing, as they shipped me glucose every couple of days in huge boxes.

Oh, other tips that helped me: I bought a blood glucose test kit (like diabetics use), and tested my blood sugar levels every one to two hours. If I went below 60, I’d eat something that’d help raise my level without spiking it too high. Orange juice is a classic choice, of course, but I found some protein sources (like nuts) to be valuable as well.

I know it’s frightening to think about the surgery, but it can completely resolve the problem, and it’s life-threatening to just try to cope with a case that severe. I’m lucky that I didn’t get into a car accident or walk in front of a bus prior to understanding what was going on. My mental state is much improved, and perhaps it’ll have the same effect for you.

Good luck,

Brendan
Jon Mikel Iñarritu

Friday, 2nd February 2007 at 1:38 am

Dear Angie,

The start of enzyme replacement therapy depends in the type of procedure for insulinoma resection. Since insulinomas are small (usually <1.5 cm), usually single (only 10% are multiple and usually associated with MEN 1 syndrome) and usually benign, the first procedure to perform (if possible) is the enucleation of the tumor wich will return your funcionts as normal without need of oral pancreatic replacement therapy.

In some kinds of procedures (like Whipple procedure or total pancreatectomy -God forbid-) you should start ORAL pancreatic replacement therapy. In this cases you should take this replacement therapy.

Insulinomas are often on the surface of the pancreas. Most of this tumors have a lining around them that separates them from the pancreas.

Diazoxide adverse effects are,
*1% to 10% of patients will develop:
Hypotension, dizziness, nausea, vomiting and weakness.
*less than 1% of patients will develop:
Angina, anorexia, burning, cellulitis, cerebral infarction, constipation, extrapyramidal symptoms and development of abnormal facies with chronic oral use, flushing, headache, hirsutism, hyperglycemia, hyperuricemia, inhibition of labor, ketoacidosis, leukopenia, MI, pain, phlebitis upon extravasation, rash, seizure, sodium and water retention, tachycardia and thrombocytopenia.

I think that your new hair growth will fall as soon as you stop taking that drug.

This blog is just for educational purposes (patients and medstudents). I’m glad to help in anything.

Best of all with your surgery. Please let us know how was it.
Jon Mikel Iñarritu

Friday, 2nd February 2007 at 1:46 am

Dear Myriah,

You don’t bore me at all.

All this symptoms you have are consistent with insulinoma.

I would like to know what are the results of the bloodwork (insulin and C-peptide).

Maybe you could have high insulin levels when you have hypoclycemic episodes.

Why don’t you look for a second opinion?

Remember, It’s not normal at all to have hypoglycemic episodes and if you really don’t have insulinoma the differential diagnosis should be done with:
Jon Mikel Iñarritu

Friday, 2nd February 2007 at 1:59 am

Toni,

I agree with Brendan, your symptoms are consistent with insulinoma.

Remember that the symptom complex is due to autonomic nervous overactivity, that could be FATIGUE, WEAKNES, HUNGER, SWEATING, IRRITABILITY, CONFUSION, BLURRING OF VISION and DEPRESSION.

Please write us as soon as you get the results of the 72 hours fast test.
Homa

Friday, 2nd February 2007 at 1:17 pm

Dear Angie
Thank you very much for answering my question about the calcium fusion test. It eases my mind knowing that it is not that intrusive. I wanted to wish you luck on your upcoming surgery next week. Keep us posed as to how you are doing once you are feeling better.
Best of luck
Homa
Phil

Tuesday, 6th February 2007 at 6:04 am

Angie,

Presently my wife Susie is in UCSD Thornton Hospital in La Jolla, CA recovering from an insulinoma removal/pancreas resection surgery that took place last Friday Feb 2. Boy, I could write a book telling you about what we have been through the past year trying to diagnose her hypoglycemia! She is presently in the difficult phase of her post-op period, just having come off the pain medication. However she was walking around yesterday and I am happy to report that even though she hasn’t had anything to eat or drink since Friday morning (midnight Thursday), her blood sugar has remained in the 80 – 90 range. Pre-op, she would have been totally hypoglycemic (20 – 30 range) by later in the day on Friday.

Her hypoglycemia started last February with a couple of really strange episodes of behavior. However, we really noticed it for sure a few days later when, after getting off a ride at Disneyland, she was walking sideways and acting in a very bizarre manner. After taking her to the emergency room at a local hospital, they told us her blood glucose was down to 35. As she drank a sugary drink and a white bread sandwich, we could see her returning to her normal self. Her uncle, who was the formal Chief of Medical Services at Kaiser and a practicing physician for over 50 years, told us he suspected she might have an insulinoma (he only saw 2 cases of it in his entire career!!). However, for close to a year, she went from doctor to doctor, and each told her her blood chemistry tests simply indicated that either she was diabetic or had reactive hypoglycemia. In the meantime, she had several very scary episodes and a 20 lb weight gain, though she eats healthily and exercises regularly.

This all came to a head at the beginning of 2007 when on two consecutive days, she experienced episodes so bad that she wasn’t responding to anything we gave her to eat or drink. We had to call EMS two days in a row, they infused her with glucose and took her to the ER (her blood sugar readings on those days were 27 and 30). On the second day, they admitted her to the hospital. She was in two different hospitals for 2-1/2 weeks while they did three supervised fasts, a CAT scan and MRI. They finally found a 13 x 10 mm insulinoma on an endoscopy and she had the surgery last Friday. It was difficult for the surgeon to find it, but he did and my wife is finally on the road to recovery. There was a 10 day period (between diagnosis and surgery) in which she was discharged, had to use a glucose monitor and keep her blood sugar up. Like you, she was absolutely terrified about the surgery, but finally had it. She’s now in her difficult post-op period, but once she’s past that, she’ll be cured.

So keep your chin up and go bravely! You don’t want to live with this horrifying hypoglycemia stuff!!
Lacey

Saturday, 24th February 2007 at 9:29 pm

My mom has been reading this website every day, increduously, because she can’t believe that she has finally found somebody — more than one somebody — that has gone through what she has been going through for the past 12 years. She’s particularly jealous of Phil’s story about his wife, Susie — so good to hear she is doing well, by the way — because it sounds like the diagnosis and surgery has all happened relatively quickly. This hasn’t been the case for my mom.

For the past 12 years, doctors have peformed tests, suspected insulinoma, and yet have not been able to find the tumor. She has had three “72-hour fasts,” which is a funny name because it only takes her two or three hours to drop really low. (She does not have reactive hypoglycemia, as her sugar usually stays between 30-60.) The tests found that insulin levels remained high when glucose was low. This is why they think she has insulonoma, but they haven’t found a tumor. She has had MRIs, CTs, endoscopy, and an angiogram (she thinks that was when they were looking for a tumor?).

My mom has increasing trouble waking up, and my dad has made a habit of waking up in the middle of the night to make her drink something. Relatively often, she has episodes where we need to call the EMTs. She doesn’t have the energy to exercise (walking up a set of stairs drops her sugar so low that she has avoided exercise.) Strangely, she has only gained 15 pounds over the years, even though she eats constantly. And she only weighs 120 now (though she only weighed 105 before, even after having two kids. She’s 5′4″). My mom is 48 years old now.

She has been on diazoxide, on and off, since the beginning of all of this. It’s not working anymore for her. She’s wondering how long it’s supposed to work … ?

My mom kind of hopes there is insulinoma, if that means it can be removed. The tumors can be really tiny, she’s been told. But shouldn’t they have grown over time? She is not interested in having exploratory surgery, but even after all these years, we’re really hoping they find something so she can return to a normal life. After having so many seizures she has lost the ability to organize, plan, and create. Has anyone else experienced this?

Her blood sugar gets much lower during her menstrual cycle. Is this normal for insulinoma? And are there symptoms of insulinoma that are exclusive to insulinoma (as opposed to just too many pancreatic cells, like “hyperplasia”)? How common is hyperplasia? How big do insulinomas have to be in order to be seen?

Toni: My mom had night sweats, outbursts and blurred vision during the first couple of years, but no longer. How did your 72-hour fast go?

Angie: We hope you’re doing well.

Michelle: Did they ever find the tumor?

Everybody: My mom thinks it’s so important for people who have these rare cases to find each other like this, and to communicate. So please continue.
Brendan

Monday, 26th February 2007 at 12:03 am

Lacey,

Your mother’s symptoms sound very similar to what I was feeling – and all of the test results you’ve described are consistent with a possible insulinoma.

When using imaging tests to find it, you’re at the mercy of the analyst who reads the results. They have a protocol they’re told to follow, but it’s a rare enough tumor that not many have experience finding them. Ultimately, I had both an MRI and a CT when they were looking for mine. The CT scan finally showed it to their satisfaction, but my surgeon actually used the MRI result when planning the surgery – it showed up there, but the analyst missed it.

If they really can’t localize it with either of those methods, I think they typically fall back to ultrasound. I would highly recommend your mother consider the additional options, even if they’re surgical. if it’s an insulinoma, her life would be so much different if the tumor can be removed. My blood sugar went to normal levels immediately post-operative.

As for your question about “organizing, planning and creating,” that’s also very familiar. My job and home life were a wreck because of the mysterious, frequent, and unpredictable bouts of confusion and exhaustion. I’ve very fortunate that my wife was so supportive. I had incidents where I couldn’t even succesfully buy groceries.

Good luck to both of you…

Brendan
Angie

Wednesday, 28th February 2007 at 7:37 am

Hi Everyone!

I’m back! Three weeks after surgery and Im back on my computer – just!

The operation went well – the tumor was removed ‘easily’ according to my surgeon and I avoided having the dreaded whipple operation. This I think has really helped my mental outlook and I am so relieved not to have had that done.

I was in surgery altogether for 6 hours but this included being brought up to the ward. I had an epidural through out surgery and into the following two days – it failed to block after two days and was replaced by a morphine pca, (which was great!)

I had no real problems from the actual surgery, was ‘uncomfortable’ and ’sore’. It felt like an iron bar was resting across my stomache but not in any real pain! I did have problems with trapped air which was really painful and ended up with a water infection from my catheter. I developed a temperature of 39.7 which held up me going home but left hospital two weeks after the op. My blood sugars have been totally normal almost straight after the operation itself and I feel completely relieved its over and has been a success.

I’m now recovering at home and have more mobility than I expected, sleeping is uncomfortable. Laying flat was a problem as I couldnt sit up but as the days have gone passed I am stronger and able to roll up a lot better.

I was so afraid of having the surgery its the most frightening thing I have ever done but my doctors were brilliant and the care I received especially at first was excellent.

I’m still here, I’m recovering, I feel normal, looking forward to getting back on my feet and back into routines – I cant quite believe it yet!!

Anything I can do to help anyone or any questions, I want to help as I have been!

Good luck to all
Angie
peggy

Wednesday, 28th February 2007 at 1:08 pm

Hi Angie!
I am Lacey’s mom, Peggy. I’m so happy to hear that your surgery was successful and all hypoglycemic episodes are in your past. What a relief! And thank God you did not have to have the whipple procedure. I don’t know a lot about it but I assume the tumor would have to be in the right place in order to avoid that. I also wonder about the laparoscopic technique. Does the insulinoma have to be in the right place in order to have it done laparoscopically? Or is it more a matter of finding a doctor that has the experience?

I really do have a lot of questions. Some of them are keeping me from moving forward with this. I don’t have very good insurance and that is the reason it has gone on for so long. The good news is that our bodies are amazing in that my brain has learned to adapt to the low sugar. I hardly have any symptoms at all anymore. The bad news is of course I could fall to dangerously low levels at anytime without warning, which I do quite often.

Maybe Jon could answer some of these questions for me-like what are the chances of this not being an insulinoma, but something else like nesidioblastosis? Is that more common, or less?
And what is the average size of an insulinoma? 13×10mm seemed rather large.
Angie, how big was yours?

Phil, I hope your wife, Susie, is recovering well. I would like to hear more about how it went for her, since UCSD is somewhat in my area.

If I wasn’t hesitant to leave my e-mail address,(I was advised not to by my daughter) I would love to hear about other hospitals as well as doctors.

This is such a difficult disease for anyone to understand that has not personally gone through it. I am so grateful for the opportunity to discuss some of these issues with all of you.
Phil

Thursday, 1st March 2007 at 5:42 am

Hi Everyone,

Its been interesting reading some of the more recent postings, especially those of Lacey and Angie (Brendan – your’s were great too!). My wife Susie was the one who had the pancreas resection/insulinoma removal at UCSD Thornton Hospital on Feb 2. I thought I might respond to a couple of things.

Lacey – I have to tell you that Susie’s recovery has been no where near as quick as you might think it was. Tomorrow marks one month since the surgery, and she is no where near back to her normal health. Since her particular surgery was so difficult, she’s had to deal with an incredible amount of site drainage of digested fats and dead pancreatic fluid. They had such a hard time locating the actual insulinoma that they had to take out the part of the pancreas they thought it was in. The assistant surgeon told us that she thought the lead surgeon was “bold” and she wouldn’t have been able to locate the tumor on her own. So yes, even though it a little more than a year from her first hypoglycemic episode to resolution, its still been difficult. Her episodes during that year drove her nuts and upset her life so much, she told me she couldn’t understand how anyone could put up with it for that long, let alone 12 years!! Susie really thinks that your mom should get exploratory surgery if they can’t locate the tumor by the 72 hour fast or by more conventional imaging methods.

Angie – We are envious of how easily your surgery went and how well your recovery seems to be progressing! I can tell you, its been, and continues to be, a very difficult road to recovery for Susie, given how difficult her surgery was. You sound like you’re experiencing some of the same post-surgical issues, like the uncomfortability when sitting up. You’re like Susie was – she dreaded the surgery, but went through with it (eliminating the hypoglycemia), and looks forward to her full recovery in the next month or two.

Best of luck to you and to Lacey’s mom!!

Phil
Amanda

Thursday, 1st March 2007 at 11:38 am

Hi everyone,

I came across this site while researching insulinoma, and figured that I would join the pancreatic tumor club and leave a message. I’m a 23 year old female who was just diagnosed with insulinoma yesterday. I’m lucky in that it has been a really fast process. From reading some of your experiences, that does not sound like the norm. I started having serious hypoglycemic episodes about 5 months ago with all of the typical symptoms: confusion, dizziness, lack of coordination, blurred vision, etc. The best way I’ve been able to describe the episodes is feeling as if I’m drunk. Once I “come to” after eating or drinking something, I often have a blurred memory of the episode. Has anyone else experienced that?

Anyway, I scheduled an appointment last week at Sansum Clinic in Santa Barbara (GREAT place!) to try to figure out what’s been going on. After fasting for 12 hours and having blood work done, they saw that my blood sugar was very low (37) but that my insulin was high. Apparently, that is a classic sign of insulinoma. I met with an endocrinologist two days ago, and he scheduled an emergency CT scan for yesterday. I met with the endocrinologist again after the scan, and he showed me that I do have a small, single tumor right on my pancreas, and presto! I have insulinoma.

I’ll be meeting with a surgeon in the next week or so to start getting ready for the next step. I’m not too worried about surgery, but am terrified about what kind of scar I’ll end up with. Can anybody tell me what kind of souvenir they were left with?

It has been great reading everybody’s stories and experiences with this. We are a rare bunch!

Thanks,
Amanda
Amanda

Thursday, 1st March 2007 at 7:04 pm

Hi again,

I wanted to say a quick thanks to Myriah for posting the link about the specialist at Stanford. I actually have an appointment scheduled with him next week! I’m glad to have found somebody that has a lot of experience with this surgery. When only 1-4 people out of a million get insulinoma, it is hard to find a surgeon with specific experience. For those of you who missed the link, here it is again:

http://cancer.stanford.edu/features/patient_care_news/insulinoma.html

I will keep you posted with how everything goes. Hope all is going well!
Amanda
Jon Mikel Iñarritu

Thursday, 1st March 2007 at 11:40 pm

Angie: It’s awesome to have you right back!!! I told you that everything will be ok.

Lacey and Peggy (Lacey’s mom): Welcome to this forum. I hope that this page could help you in the hard way of diagnosis and treatment of insulinoma.

Phil: Please give Susie my best wishes. I know she will be fine.

Amanda: Best of all in this “adventure” and thank you for sharing again the link. I wish you the best of all and please come back again and post about your experiences.
Peggy

Friday, 2nd March 2007 at 12:34 pm

Amanda,

Welcome to the club! You’re my daughters age, I think you are our youngest member. That’s a good thing because you will come through surgery well. Hopefully, your case will allow and your surgeon will have the experience to perform the laparoscopic procedure as they did on Brendan. What a difference it would make in recovery time, and – with the souvenir you were left with! It sounds like Stanford is that place for you. Isn’t it great to have this information available. I’m glad that your diagnosis came relatively quick. Take it from me, this is not something you would want to deal with for very long. I know what you mean about feeling “drunk” and having a blurred memory of the whole thing. Very common, although frusturating. Those episodes are what you want to avoid. (hopefully you have a glucose monitor) There has to be a lot of brain cells dying, it adds up after a while! Take it from someone who can tell. :)

I’m glad you’re on the right track and I trust that things will go well for you. Your attitude is an inspiration.

Angie,
you’re still on our hearts. Thanks for starting the corespondence, hope you’re back in the “routine” soon.

Phil and Susie,
I’m sorry the recovery period is so difficult for you. I’m sure it will all be worth it and am feeling more “bold” in pursuing my treatment. Thanks.

Brendan,
if it weren’t for your experience, I would not have the nerve to start all over. Thanks.

Jon,
awesome thing you’re doing with this publication. Thank you!

Everyone,
Thanks for the encouragement!

Peggy
Brendan

Friday, 2nd March 2007 at 1:02 pm

Amanda:

I definitely had a similar experience with my memories of my hypoglycemic episodes. When I think back to them, it’s as though it’s a slide show where I remember a single image from every ten minutes of actual time. It’s fantastic that you were diagnosed so accurately. I was misdiagnosed with temporal lobe epilepsy for nearly two years prior to finding the endocrinologist who solved the mystery.

I have four scars from the laparoscopic surgery, and my experience is apparently typical. They made an incision for a drain, two for retractors, and one for the laparoscope itself. Each is less than an inch long, and they’re scattered around the center of my abdomen. If you used compass directions, there’s one NW of my belly button, one NE of it, one E, and one SE. Apparently they fade more over time (particularly if you use vitamin E cream, or is it A? I don’t recall).

Brendan
Angie

Friday, 2nd March 2007 at 3:31 pm

Dear All

Im so glad I found this page on the web and feel quite proud that I started it!!!! Thank you to Jon for creating it!! Its just been so good to read about other people and finding information that was any use!

I really look forward to finding new messages and hope that those of us who gradually get further down the line can be of help to the others.

I actually left my house yesterday to walk down the road to a friends house – very slowly I might add – it wasnt far but by the time I came back I was very sore. However today I feel better and easier so I think thats a clue to recovering, build up very gradually but do something every day if you can. I sat and rested all last week and didnt really feel any progress. Its all new to me. I realised today that I feel ‘normal’ but without tablets! I was thinking I didnt feel much different but then remembered that that was because the diazoxide was helping to stabilize me most of the time. Im looking forward to feeling more energetic than I have for years!!!

Peggy

I think that the laparoscopic option comes with both a doctor with the experience and a tumor in the right place although I have heard that it is sometimes easier for them as they work under high magnification.

My body adapted to the low blood sugar over the years and when the nurses were running round waving food at me cos my levels were so low I was sitting there wondering what the fuss was about – I know now what they were worried about. In UK we seem to measure the blood sugar differently, usual blood sugars are 4 to 6 and low is anything under 2.5 to 3. Under 1 and you are heading for a coma if not already in one!! My lowest was 1.7 at work when I felt light headed! Most of my weekends my levels were 2.3. I believe I have suffered with this for years but cant really put an exact time on it – I just thought it was me and that i had odd turns!

My tumor was about 1.3 cm and that seems to be an average size. I know many are smaller but still cause such awful symptoms.

Amanda

My ‘wound’ is about 8 -9 inches across and an inch above my navel, slightly to the right where they did the work on the head of the pancreas. It was subcutaneously stitched and taped on top which is fantastic as I have no stitch marks and when healed will hopefully look just like a crease across my stomach! Another lady I met in hospital had had a tumor removed from the tail but hers had been stitched and was more to the left. It seems each doctor has his own style! My drain is causing more trouble healing as here they just leave it open to heal outwards and upwards! As it was a half inch tube it was quite worrying having a hole into my abdomen! It is slowly healing now and I dont think that will be too bad either.

Best Wishes to all!
Angie
Maria

Sunday, 4th March 2007 at 9:51 pm

Hello all -

Well I too have been diagnosed with insulinoma – 2 weeks ago. I have a 2.5 cm insulinoma by the head/neck area. I am scheduled for surgery on Thursday. I did the blood test – which took about 3 hours since I hit a low every day around 10 a.m., next to CT scan, which they could see the tumor since it is so large, then a biopsey procedure last week where they place the ultrasound down my throat to get a better look and look for cancer. So, that went fine with good news and they scheduled my surgery for this week. I have been told that I should expect to be in the hospital for around 5 to 7 days or so, but they wrote me out of work for 6 weeks. I don’t meet with the surgeon until Wednesday so not sure how they plan on doing my surgery yet. I hope it is easy and goes well. This is my first surgery – I am 31 years old. Thanks for the website and I have been reading it for several weeks now. Glad everyone is doing well. I have had this for about 2 years or so, with lows in the 30s and 40s everyday. Is my tumor larger than most or has anyone heard of one that big? Do you think they will remove it laparoscopic or not? Thanks again and wish me luck!
Peggy

Tuesday, 6th March 2007 at 7:42 pm

Hi Maria,

I’m glad you found us. I don’t know where you’re having your surgery but I’m sure they will do whatever procedure is best for your situation. Everyone hasn’t said how large their tumors were, but I would be interested to know also. 2.5 cm seems big though. Good thing, since that made it easier to locate and they will probably be able to remove it easier as well. I will be thinking about you on Thursday. Hope everything goes well, be sure and let us know.

Michelle and Toni…I’m real curious to know how you both are doing!!
Phil

Wednesday, 7th March 2007 at 12:34 am

Angie,

Susie’s husband here again – I wanted to ask you a question. When exactly did you have your surgery? I think it was around the same time Susie did (Feb 2). What have been your recovery experiences so far?

The reason I’m asking is that as I have mentioned in other posts, its been, and continues to be, a very difficult post-surgical recovery for my wife. As I mentioned, she’s had a lot of drainage of digested fats and pancreatic fluid from her surgical site. It has slowed down significantly in the past week, but her two drainage bags are really chapping her skin and she has been in a great deal of pain. The surgeon had to be very aggressive in his surgery in order to remove the insulinoma (he had to remove a good chunk of the pancreas near its head) and I think that has led to the drainage. They prescribed a statin drug that I have to start injecting her with 3x / day to dry up the drainage. I was wondering if anyone else was having some of the same post-surgical complications. She has also been having a very rough time with the mental and emotional impacts from this 2 month ordeal of diagnosis, pre-surgical wait, and post-surgical recovery. It’s been very hard on the whole family since the beginning of this year.

Jon Mikel,

Thank you for your kind words of encouragement, and your terrific site. It has been comforting to connect with others that have also had to deal with the effects of hypoglycemia and insulinomas. It’s good to know we’re not alone.

Peggy,

I would highly recommend Dr AR Moossa and his assistant, Dr Jackie Tracey, at UCSD Thornton Hospital in La Jolla, CA. Dr Moossa has over 40 years of surgical experience, was the Dean of the UCSD School of Surgery for over 20 years, has authored a standard surgical textbook (in its 15th printing) and over 300 articles. He specializes in surgery of the pancreas. He might initially strike you as a crusty old fellow, but he is actually a very kind, highly intelligent, often funny man. If you haven’t selected a surgeon, please keep him in mind. Also, Thornton Hospital is (for a hospital) a very nice place. When you enter the lobby, you’d think you were in a Hyatt Hotel or something like that. If you have to spend a couple of weeks recuperating in a hospital, that’s probably the place to be. Let me know if you have any questions.
Brendan

Wednesday, 7th March 2007 at 12:58 am

Maria,

If it’s possible, I would highly recommend laparoscopy. My recovery time was very quick – I was 30 at the time of the surgery, and I was in the hospital for a total of three and a half days. I had a drain in my side for an additional three, but that was the entirety of it. I certainly had some abdominal pain and was told to avoid heavy lifting for a month, but I was able to return to work in less than two weeks. I think it very much depends on the location of the tumor, and whether it can be enucleated (and whether or not the surgeon is experience with laparoscopy).

It can be difficult to find surgeons with experience removing insulinomas because they’re so infrequent. Without going to a specialty clinic like Mayo, it’s very hit or miss. My surgeon, Dr. Andrew Bourne, was based in Eugene, OR, but has now moved to a surgical practice near the Northern California / Oregon border. He was very good, and had done six of them prior to me, but I’m sure there are good options elsewhere.

Brendan
Angie

Wednesday, 7th March 2007 at 5:22 am

Phil

I had my surgery on the 6th Feb so its just 4 weeks. Although the surgeon told me it was more likely I would have to have a resection I was very lucky and it didn’t come to that. My tumor was in the head like Susies and it was near a tract so they were worried the tract may have been breached. I only had one drain in the end and very little in comparison came out. I know I was given an anti-seepage drug twice a day by injection to start with but that stopped after 10 days or so.

I have increasing mobility and am cutting down my pain killers slowly at the moment but I am still far from back to normal. I am also having a lot of stomach pains and I seem to have a very sensitive stomach in regard to food. I don’t know if this is to do with the diet or lack of it in hospital as really they didnt touch anything other than the pancreas during surgery.
Im still very uncomfortable and sleeping is still far from easy.

Are the doctors concerned about the amount of drainage your wife is suffering?

I presume that after such an aggressive resection as you described Susie must have had quite a few ‘joins’ and ‘replumbing’ work done. This is what actually frightened me so much. My imagination would have run wild about what they had actually done and I know it would have caused me several mental problems as Im like that. My consultant explained that the resection would enable him to do the safest operation under my circumstances to stop any leekage from the pancreas. However knowing that he would be sewing the pancreas into the actual intestine and rejoining up my stomach would have knocked me for six.

Do you know exactly what they did?

I seem to have been very lucky but can imagine what your wife is going through. She will probably hit big milestones soon and suddenly make huge improvements especially if the drains can be taken out. I know when I eventually got rid of mine it was odd at first that I wasnt still carrying it around.

I really wish her well and my thoughts are with you both – hope to hear things improve soon!

Angie

Just a footnote – My consultant in London has done 37 insulinomas over the years, I think that everyone in the Uk with this is actually sent to him as the specialist here. He was very nonchalant about it and gave me a lot of confidence that this was nothing to worry about! I did tho!!!

The statistics show that success rate is considerably better with an experienced surgeon which of course is common sense.
With hindsight when looking for a surgeon I think I would ask him about how he would deal with the complications that could arise and how many different outcomes he had had.

Best wishes to all Im off to take my painkillers!!!
Phil

Wednesday, 7th March 2007 at 8:32 am

Angie,

Thanks so much for the very quick response. I entered my latest post before I went to bed last night, and here I am at 6 am reading your response! I think you’re in the UK (I think about 8 hours ahead of the US West coast), so that probably explains it. Ah, the miracles of the Internet!

I’m not sure exactly what they did when they went in, or what kind of “replumbing” they did. All I know is that the insulinoma was very small (13 x 10 mm), and if he hadn’t taken such aggressive procedures, they wouldn’t have been able to take it out, because they had a very difficult time even locating it. It showed up well in the endoscopy ultrasound, but once they got in there, it was very, very hard to find. Actually I think what they did was to take out the part of the pancreas they thought the insulinoma was located in, and the surgeon indicated it was a much greater amount than they had anticipated. All I know is that the assistant surgeon said Susie was very lucky that Dr Moossa has done it, because she and the original surgeon that was scheduled to do it would not have been able to locate it. I can’t imagine what it would have been like to have been opened up and STILL have hypoglycemia because they wouldn’t have been able to locate the tumor! What a nightmare scenario that would have been.

Of course, they’ve been concerned about the drainage, but they are confident it will stop. When it first started draining, we were draining 150 – 200 ml every couple of hours, but it has slowed down to about 50 – 60 ml every 6 hours or so. I have to ask you – what were your experiences with injecting the anti-seepage drug? Did you do it yourself, or have someone do it for you? Was it painful? How often and how long did you do it for (I think you said about 10 days)? Did it help you “dry up”? She is absolutely terrified to do it, because they’d like me to administer them (she seems to lack confidence that I can do it – imagine!!), and is concerned about side effects. They require subcutaneous injection with a very fine needle (much like insulin shots taken by a diabetic), so it doesn’t seem like it would hurt because it isn’t intravenous. Also, the surgeon told my wife to try not to worry about possible side effects; he likens it to be scared of walking into a building worrying about if the roof will fall. He says that pharmacists and drug companies have to disclose all possible side effects simply to protect themselves legally, but in reality, she is unlikely to experience few if any of them.

I think she’ll feel much better when they remove the bags because they are now really irritating her skin. We’re going back to the hospital tomorrow for followup on this – I think they’ll probably remove the bags, have me change surgical dressings again (because the flow has fallen so much) and get her going on the statin drug to dry her up.

The big issue here is that my wife has always been extremely excitable emotionally about her health issues (its probably genetic – her paternal grandmother and her mother were also like that). I wish there were a way to calm her down about the whole thing. She is getting better, and will make a full recovery, but its hard on her now. I try to reassure her that everything will get better, but she gets very distraught and tired of the whole thing at times.

Brendan,

Yes laparscopy is the way to go if the insulinoma is easily detectable and can be enuncleated if its on the surface of the pancreas. However, in cases like my wife’s, where the insulinoma is really hard to find, laparscopy is virtually impossible to do to successfully remove such small, hidden-away insulinomas. That pancreas is really tucked away below everything else like the stomach and intestines. I sure wish my wife could have had it, and avoided the long recovery, but they simply wouldn’t have been able to locate and find it. Best of luck to you.
Angie

Saturday, 10th March 2007 at 6:31 am

Phil
I love the internet for exactly the reasons you said – a few years ago how could we possibly imagine having such conversations across the world – I love it!!!

The thought of going through this and them not having found it is quite awful or even if you knew you’d have to opened up again at a later date and go through it all again is very frightening!

When I saw the Registrar before surgery he was going through all the complications and as a final point he said ‘of course there is a chance it will be cancerous and we wont be able to remove it but you’ll have a few years left’!!!! I thought well thanks for that!! im sure he meant well and I took it lightly but hey how about dropping a bomb!!

If the statin drug is the same as I had it is a very fine needle and was painless to administer. It was given to me straight after surgery for about 10 days. The reason im not too sure is because I was having injections to thin my blood twice a day. These really hurt and left bruises and lumps, and carried on until I left hospital.

I dont think I could inject myself but a friend, from this site, had to inject herself instead of taking diazoxide and she was given ‘training’ and managed it. She said if you can do it once you can do it again. I imagine its like sticking a sewing needle into your finger to get rid of a splinter!

Tell Susie that I am a very down to earth, sensible, objective person normally but where my health was concerned in hospital I was neurotic. I worried about everything! I had a two panic attacks and hyperventilated. I got myself worked up after being told I had a very low heart rate and they were concerned so I thought I was going to fade away in the night. I had terrible trapped wind one night and the nurse offered me an ECG at 3 am. I got so anxious one night that I had nerves twitching all over my body and convinced myself I had a neuro disease!! I suppose a lot of this is night fears but its very real at the time and you need reassuring with so many things as you dont know what the doctors know.

Hopefully she will be able to laugh at all this in a few months time. Major surgery to this extreme is more than traumatic and its only natural to worry when you think something isnt right. I do think Im better when I know everything possible to know but then you can worry for no reason. At the end of the day if shes worried so what if the doctor thinks she is neurotic its your peace of mind and your body not theirs and its happening to you not them!!! Ask everything, bring up all your worries, tell them how you feel however silly. Peace of mind is worth millions!! I did!!!

Im finding my stomach pains really tiring and at times it feels like my insides are falling out, I suppose thats because of the stomach muscles being weak. That and being unable to sleep properly at the moment is getting me down but it can only get better – unless ive got some terrible intestine complication, see!- I am joking!!! Its so easy to worry when we arent doctors!

Hope you got on well at the hospital and Susie feels better soon. I think its along road to recovery but the hypos are gone!!!

Best Wishes

Angie
Phil

Saturday, 10th March 2007 at 7:23 am

Angie,

What a terrific post and response! I would think you were Susie from what you told me in parts of your email! Its really early here as I read it (5 am), but I know Susie will love it once she’s up and has read it. You two are kindred spirits, given what you are experiencing right now in your post-surgical period and your mental makeup about your health and recovery!

Its very interesting about Susie’s interactions with her surgeons. They both give Susie a hard time about her extreme anxiety about everything. Dr Tracey (a woman) teases her a lot but has compassion for her misery. Dr Moossa, the head surgeon, is a much older man and though he has compassion, he gets very annoyed by her complaining, and doesn’t have too much tolerance for it. My wife has a very ambivalent relationship with him, but I always remind her that she should thank God he did the surgery because the insulinoma was so hard to locate; Dr Tracey said that she wouldn’t have been able to locate it. BTW – Dr Moossa got his university degree and initial medical training at the University of Liverpool in the 60s, so he is a countryman of yours.

We started Susie on the statin injections a couple of days ago, and like you said, the very fine needle doesn’t hurt going in (just a little tiny prick at times). The surgeons removed one of the drainage bags that was really bothering her a couple of days ago, and I can already see that the amounts collected by the remaining bag have fallen quite a bit. They were down to 50 – 60 ml every 6 – 12 hours the past few days, but when I emptied her bag yesterday, the amount collected was hardly measurable. We’re supposed to do the injection 3x/day for 2 weeks, so I really think they are going to help quite a bit.

Take care and keep us posted on your progress. It is amazing how people from around the world can communicate so easily now via the Internet!

Best wishes too!

Phil and Susie
Phil

Saturday, 10th March 2007 at 8:49 am

Angie,

Susie really liked your post – like I said, I think you two are indeed kindred spirits. She wanted to know if it would be possible to call you on the telephone. Our email is philsuzy@san.rr.com – perhaps you could email us?

Thanks,

Phil
Debra

Monday, 12th March 2007 at 9:16 am

Hello Everyone!

I was so thankful to finally read about other live humans afflected with insulinomas. I too had an insulinoma removed in September 2004. I wonder how long I had the insulinoma. I had gained around 50 pounds in the last 10 years. I was fairly thin in high school, but have seen a steady climb over the years. Did anyone else gain weight due to their insulinomas? Also…I had my first child at age 35. Minutes after delivering her, I had my first super low blood sugar (around 32.) I may have had several lows, but wasn’t measuring until I was diagnosed with “of all things” gestational diabetes during my last trimester of pregnancy. I am probably one of the worst candidates to get an insulinoma because Type 2 Diabetes runs in my family. I had the insulin resistance before, with and after the tumor. I had a pancreatic resection – they removed around 1/4 of the tail of my pancreas due to a 2.5 cm tumour. I was insulin dependent after the surgery. My incision is roughly 8 inches long above my belly button. I had an epidural for 3 days and was out of the hospital in 5 days. I don’t have lows now, and am diabetic. I take oral Metformin (to control high blood sugars) and give myself 1 injection in the evening (Humilin N-long acting insulin.) I am interested in possibly having a second child. Has anyone had a child after surgery. I am worried that the insulinoma will return. Especially because my extreme lows came on shortly after the birth of our daughter. Most doctors say it shouldn’t, but noone knows for sure. Did anyone have more than 1 tumor? I have read that multiple tumors can appear…even without MENS..just as insulinomas? I also fear that the diabetes at age 38 may also be a complication. Sorry I am just rambling on…I am an elementary school teacher and my students will be coming in anytime. Please everyone share experiences!

Thank you.

Deb from Nebraska

P.S.-It took my doctors 6 months to find the tumor. I had 2 hosptial fasts, CAT scans, MRI’s, ultrasounds, and finally with a angiogram with calcium stimulation, they thought that it was an insulinoma due to lab results. However, noone actually saw the tumor. It was my surgeon who located it during the actual surgery.
Amanda

Monday, 12th March 2007 at 12:14 pm

Hi again everyone!

It has been great reading updates on everyone and hearing how things are going. I have met a few milestones in the past couple of weeks. Actually, I am about to head up to Stanford Hospital to have surgery done tomorrow by Dr. Norton. I met with him on Friday and he explained that my tumor is about 2cm and is located on the head of my pancreas. Because of its location on the head, he is unable to perform laporoscopy because it is too dangerous. So, he’ll be performing an open surgery. Scarey! I am confident in his abilities and am sure that all will go smoothly. He expects that I’ll be in the hospital for about a week, but I’ll be sure to update everybody on how I’m doing as soon as I’m able to. I will be thinking good thoughts of you all and would appreciate if you’d do the same for me.

Take care and stay strong!
Amanda
Debra

Monday, 12th March 2007 at 12:42 pm

Amanda,

I just read that you are having surgery tomorrow. I will be praying for you and for your doctors. I’m sure you will have a speedy recovery. I had similiar surgery on the tail of my pancreas and I’m here if you have any questions.

Take Care and God Bless,

Deb
Phil

Monday, 12th March 2007 at 3:57 pm

Amanda,

The very best of luck to you on your surgery tomorrow. Your surgeon is right – my wife Susie’s insulinoma was on the head of her pancreas too, so laproscopy was out of the question. I think it can only be performed if its elsewhere on the surface of the pancreas, and can be enucleated. Susie’s much smaller (13 x 10 mm) than yours, and the surgeon had a hard time locating it, so as I mentioned in previous posts, he had to be pretty aggressive and “bold” about taking out a bit larger piece of the pancreas to get it out. She’s had a lot of draining that we’ve had to deal with the last three weeks, but she’s taking a statin drug so it is tapering off quite a bit in volume now. I’m no medical expert by any means, but it sounds like your insulinoma is much bigger so it shouldn’t be nearly as difficult to locate. The week long stay in the hospital sounds right, though Susie was there for two weeks, mostly due to some of the issues that came up in her particular case. Fortunately, the insulinoma and the hypoglycemia are totally gone (Good Riddance!!).

I’m sure you’ll come through everything with flying colors – best of luck!!

Phil
Peggy

Monday, 12th March 2007 at 6:50 pm

Hello,

Amanda,we will be thinking about you.

Hi Debra, so is the diabetes a direct result of the pancreatic resection? Seems like it would be, but didn’t you have it before you were diagnosed? I’d also like to know about the calcium stimulation, they found the tumor through the angiogram. But they couldn’t see it, is that right?
I remember my first serious hypo episode was shortly after the birth of my daughter. Strange.

Wouldn’t it be great if we could all find something we had in common that could explain this unusual disease…lets see, I use to be a health nut before I realized what was wrong with me. Lots of carrot/beet juice. I had a couple abdominal surgeries..lots of x-rays. Anyone else?

Brenden, thanks for the info on doctors, Thorton Hospital sounds rather nice.

My mother happens to have some pancreatic trouble right now,
so I asked her doctor how much experience he’s had with insulinomas. He’s removed 50! And He’s the only one in our area that can do them laparoscopically. That sounded promising, the trick will be to get my insurance to send me to him. And of course they still have to find it! I’ll have to repeat all the MRI and CT scans and have another endos-
copy. So that’s where I am right now.

God’s best to everyone!
Peggy
Debra

Monday, 12th March 2007 at 9:34 pm

Peggy,

Thank you for your reply. I only had gestational diabetes (that I know of) before the pancreatic resection. However, with my Mom, uncle, grandfather, and a cousin having diabetes, I have a feeling Type 2 Diabetes would have been in my near future (even without the insulinoma.) However…, looking back, my weight gain has been on a steady climb since college. I do believe that I may have had the insulinoma for years, but I never really had any super lows until the birth of my daughter. Also, when my gestational diabetes was diagnosed in January of 2004, I began logging my blood sugars. I did have several lows (in the 50’s) when pregnant (usually in the morning) but didn’t drop into the 30’s until after her delivery. (And I mean literally 5 minutes after her delivery.)

I like your idea of putting our heads together to try to explain this unusual disease.

Also, since having the surgery (which was my first surgery, other than Laser Eye to correct a stigmatism) I have been diagnosed with other problems:

1. Gallbladder Problems (diagnosed Biliary Dyskinesia after a HIDA scan) means no stones in gallbladder, but it does not process properly-leaving me with pain when it has spasms.

2. Tumour located in my Thyroid (I had to have a Thyroid Needle Biopsy) Thankfully, it was benign.

3. I had severe hives and even on one occasion, I had severe swelling of my face. Doctors did tests and found virtually no allergies.

4. When Doctors were completing an MRI to check my pancreatic function after surgery- when I began having the Gallbladder troubles, they also spotted a Hemangioma (a usually benign tumor on my liver.) My surgeon who completed my Pancreatic Resection also documented this on my chart, but didn’t mention it to me after surgery. My next door neighbor (who is a doctor) said that the only reason to remove them is it they continue to grow or cause pain.

5. Also, I am very fair and have had many sunburns in my lifetime. However, in the past 2 years, I have had several moles turn out to be a dysplastic type. One required an additional excision to examine the tissue further.

6. I began having the sensation that something was stuck in my throat at times. Also when eating raw carrots, or bread, I would get the sensation that food was stuck in my throat and would need to drink liquid to prevent choking. I had a Barium Swallow which diagnosed an Esophageal Ring. They told me it was OK for now, but that it may need dilated if it continues to cause any problems. AND LASTLY…

7. I had trouble conceiving. I have several small cysts in my ovaries, and was diagnosed with a Septate Uterus (heart shaped uterus) and took Clomid 1 month before conceiving.

I guess what I’m getting at is…I have literally fallen apart (so to speak) since having the insulinoma removed. I know I’m 38 and not as young as before, but I didn’t have any health issues (other than difficulty conceiving) before the surgery. Anyone else experiencing issues after their insulinomas were removed?

I read that people who have high carb diets are more likely to develop insulinomas. I have always been a carb freak, so quite possibly there is some truth to this.

My surgeon had only removed 2 previous insulinomas in his career. One of his patient’s tumor reoccurred much later in life. Anyone else hear of them reappearing?

Peggy, how long ago did you have your daughter? Have you been having trouble ever since? MRI’s and CAT scans were not sucessful in locating my tumor. When the angiogram was completed, it was only when they injected the calcium into the vessels into the tail of my pancreas did the insulin levels raise rapidly and at high levels of output. So, no doctors actually saw my tumor, they just suspected that it was in the tail due to my levels. This is why I had to have exploratory surgery to find and remove it.

Just curious, are you working with your low blood sugars? I had taught first grade for 15 years before having my daughter and wasn’t able to return to work until November 2004 (my surgery was on September 24, 2004.) However, now I am exhausted all the time working full time. I am considering staying home with my daughter next year.

I hope that doctors can locate and remove your tumor laparoscopically. It sounds promising since he has removed 50! That is amazing! It kind of makes me think that the odds of 4 in a million must be higher. Best of luck to you Peggy. I’ll keep you in my prayers.

Deb
Peggy

Wednesday, 14th March 2007 at 9:43 am

Debra,

You sure have beeen through it! I worked at my daughters school for 10 years. They actually hired me with my condition. It’s great to work at a place when you know they accept you, however wierd you get. Teachers would bring me sugar all the time. We got a new principal last year, and my doctor said the stress was too much for my sugar, so I quit. My daughter is 15, and yes I’ve been having trouble ever since. If I were you I’d stay home with my daughter, it goes so incredibly fast. My older daughter just moved out of state a couple of weekends ago.

Funny, the doctor just called to tell me my sugar is a little low…oh, really? And I am low in iron. That explains my exhaustion. Maybe it’s something simple like that for you Debra.

The really bad news is my insurance won’t send me to that doctor with all the experience. I’m not surprised. I guess I’ll look into UCLA or USC. (contracted hosp.) Does anyone out there have any suggestions for me?

Phil,
I meant to thank YOU for the info on Thorton Hosp doctors.
I guess I’ll go where they tell me.
Amanda

Friday, 16th March 2007 at 11:52 am

Well hello everyone!

Before you get too far into reading this, let me apologize for any bad spelling! It is hard to be too articulate when you’ve just had surgery!

I am 4 days post-op and am feeling pretty decent. I had my surgery Tuesday morning and it lasted approximately 4 hours. I ended up with an incision that is probably about 7 inches long across my belly, in a curved shape above my belly button. The surgeon said that he tried to keep it as small as possible, but had to go fairly large due to the size and location of the tumor. No whipple was necessary, just a normal enucleation.

I hate to say this because I don’t want to scare anyone, but I was in the most excruisiating pain as I woke up immediately after surgery. I could barely move from the pain, but they had that under control after a couple of hours. That was definitely the worst part.

My progress has been going fairly quickly. I got up for a short walk on Wednesday and was put on solid foods the same day. I haven’t had much luck eating the normal diet, so I’ve been mainly sticking with jello and juices. Yum. My stomach has been pretty tender and I’ve been feeling a little bit queezy. I have been sleeping a ton, but I figure that is largely due to the medications they have me on.

Immediately after the surgery, I had an epidural that was removed yesterday. I’m now on Percoset, of which I take 2 every 6 hours. Right now, the thing that is the hardest to deal with is the discomfort in my stomache. I would love to be able to eat something, but I just don’t think I can. I feel a little weak and shakey from not eating, so I am hoping it will pass soon.

Right now, I’m sitting in the guest waiting area to use the computers. I’m wearing my fancy hospital gown, IV pole and cathedar attached. I guess that you can’t have any shame when you’re recovering!

Thanks so much for all of the kind words prior to my surgery. It really helped me get through everything! Hope all is well with everybody.

Amanda
Angie

Friday, 16th March 2007 at 12:09 pm

Amanda

Your message has just come through so Im quickly replying… Try and eat something regularly even if its a little as it really helps the stomach pain. I found the days I couldnt eat much the pain got worse but gradually as you eat a bit more solid food it helps to “get things moving”! I tried toast to start with!! I did live on custard for quite a few days!

Stomach pain has actually been the worst tcause of pain throughout all my recovery so far. Even last week which was 4 weeks plus I had awful pains but they have eased this week.

I wonder why your epidural wasnt already set up during the op? Mine failed after two days so I cant imagine the pain you were in when you woke!

Are the hospital gowns as good there as they are here in the Uk, I had the surgical stockings on too which were so attractive!!!

Good luck keep us informed, dont worry someone is here ready to reply!!

Angie
Michelle

Friday, 16th March 2007 at 3:59 pm

Hello Everyone,

Sorry for taking so long to update you all. I came to Johns Hopkins in Baltimore city to localize the tumour which they did in both the Endoscopic Ultrasound (EUS) as well as a CT Scan with contrasts. They said it was located on the middle towards the tail of my pancreas and was 2 cm. The surgeon’s fear was that is was on top of the pancreatic duct and that it was within the organ which would mean he wouldn’t be able to enucleate it and would have to do a distal pancreatectomy (remove the tail portion of the pancreas) and splenectomy (remove the spleen). I am thankful to report that my surgery went well on Monday, March 5th and lasted approximately 3 hours (total of 4.5hrs once I was out of recovery). They were able to perfrom the surgery laproscopically and hand assisted, so I have 4 port holes, the drain in my side and an incision about 3 inches long below by breast bone. The pain was really bad when I woke up in the recovery room and once they tried a few different pain killers to find the right one it slowly subsided. I have to say that the worst pain was the trapped gas from blowing up my stomach. This was excruciating especially since the pain killers didn’t help that. I have also been having terrible back pain which they have told me is normal as the pancreas wraps around the back as well as the front of the abdomen. I was standing the next day and then walking very slowly, hunched back, the following day. They discharged me from the hospital within 5 days after the procedure and I am now in a nearby short term apartment rental. It has now been 11 days since the surgery and the pain is getting better day by day. I still can’t stand up straight or get out of bed on my own, but I am getting more mobile each day.

For those of you who will need a JP Drain (attached to your pancreas and extending outside your stomach), my experience is that the fluids start out bloody in color, and then turn more urine colored and eventually start to thicken and may clog the drain with blood. It startled me because the sheet I went home with said to notify your doctor right away if it turns straw like or bloody. I called the hospital and a nurse said it sounded like I had an internal infection, but after speaking with my surgeon he assured me that this is all quite normal and what they want to see as the fluids slow down.

I saw the surgeon yesterday in the hopes of getting my drain out, but he wants to wait until the fluids decrease to about 20cc a day. I am going back to see him on Monday, March 19th to hopefully get it out. He then wants to do another abdominal scan before I go home.

I must say that John Hopkins Hopsital has been fantastic. I am from Bermuda and was researching the best place to come. It isn’t readily advertisied, but Johns Hopkins does the most pancreatic surgery than anywhere else in the world and I would highly recommend them.

Thank you Peggy for remembering me and for asking how I am doing.

Everyone’s updates have been great. For those that still don’t feel too great I wish you a fast recovery and for those that are doing better, I am happy for you.

Michelle
Peggy

Sunday, 18th March 2007 at 3:49 am

Amanda and Michelle, welcome back!

I have been having some real lows lately. 37 today and yesterday and it’s been affecting me mentally. But I am so glad to hear you’re both out of surgery. How have your blood sugars been? It will be interesting to see how you both recover differently from open surgery and laparoscopic
though they were a week apart. My mother had pancreatic surgery on Friday. She’s not having any pain yet. It seems like they could prevent that, at least when you first wake up. How soon before you could eat Michelle? It’s great that you could both choose such experienced hospitals. I’m sure I won’t have that kind of a choice with my insurance, since they won’t even send me to UCI which is so close, but how did you find out about John Hopkins Michelle? I’m trying to find out what I can about UCLA and USC. I received a referral for an endoscopy at UCLA, again, and an endocrinologist at USC as a second opinion. But I’ve been to both, and I still have this condition 13 years later! Sorry, I think I’m a litttle tired.

Just to let you guys know, I have an old scar from kidney surgery, and I forget it’s there. Same color as my skin now.
Be sure and use that cream for scars.

Angie, are you still having stomache pains after 4 weeks? Bummer. You have a great attitude though.

You are all tough women!
pEGGY
Lauren

Saturday, 24th March 2007 at 9:17 am

Hello all, My name is Lauren and I am so thankful to have found you’re comments. I have been searching the web constantly for info but unless you’re a ferret, input from others is limited. I’m 34 and I’ve been diagnosed w/ insulinoma recently strictly based on 5 hour fast, blood sugar, cpeptide and insulin levels. I had an MRI but they saw nothing, however only an analyist looked at it. Two doctors here in New Olreans have told me I have insulinoma. When I wake up in the morning my levels are around 45. They don’t get above the low 60’s all day unless I eat something really sugary. My average levels all day are between 45-65. When I was in high school I did a glucose tolerance test and it went down to 36. Thats the lowest I’ve ever been. Has anybody else who has actually found an insulinoma had levels this range or were they much lower? My local endo doc has sent my files to MD Anderson in Houston and also the Mayo clinic in Minnesota as they are supposed to be the experts. It is refreshing to hear that some of you did not not have anything show up in preliminary scans. I am absolutley terrified of having surgery with no outcome. I have 2 small kids at home. I have ALL of your same symptoms for about the past 15 years. It has gotten worse in the last few months which is why I decided to actually pursue the cause. Now I am kicking myself for not having done this sooner. My family has suffered as a result of my being constantly “out of it”.
Thanks for reading this whoever does and I won’t be so long winded in the future. Lauren
Peggy

Sunday, 25th March 2007 at 3:18 am

Hi Lauren,

I’m glad you found us! I know how it is to feel as if I had been going through this for the last 15 years alone, before I found this sight. It took me a long time to discover I had low blood sugar, and I think because of some brain damage that had occured as a result, I became severely depressed. Thankfully, that passed eventually and my mind learned to adapt. Maybe THIS is the right time for us to find our answers. As hard as it has been living with this condition, I have to believe that “having done this sooner”, may not have been in our best interest. They have come a long way in the past 15 years, with the amount of information availabe and with medical procedures. It hurts to know how my having this disease has hurt my family, especially my girls, but I pray that it has also made them stronger, and more compassionate people.

I can relate to how you feel about having surgery if they cannot locate a tumor. If I was sure they knew they could find it, I would’ve been there years ago, but I wouldn’t go for an exploratory surgery without a doctor who has had a lot of successful experience with this. The good news is, my mothers doctor said that if they locate a tumor, they can tag or tatoo it so they will be able to find it when they go in. And don’t forget now there is a chance that someone can do it laparoscopically.

I haven’t spoken to my mothers surgeon much, since he is not my doctor, but he told me he wasn’t convinced I had an insulinoma based on the ranges of my sugars. I had told him that my averages were from 40 to 60. He said some women just have lower sugars… This has raised a lot of questions for me. You don’t have to answer of course, but if anyone cares to, I would really appreciate the input.

I usually only test my sugar before I drive and when I feel low(which is all the time). Today I tested all day long and found that I went from 83 to 39 whithin one half hour, and 101 to 41 within 40 min. I ate carbs the first time, and protien and carbs the second time. Does this sound unusual to anyone who has had insulinoma?

Was anyone lower as a result of monthly cycles?

Has everbody gained a lot of weight from this condition?

Lauren, Did they tell you what your insulin/C-peptide levels were compared to your glucose? Were your symptoms worse when they first started?
Just so you know,I definitely have had some months that are worse than others.

Sometimes I feel like I’ve written too much(like now), but please don’t feel that way. Comments don’t come that often and I’m sure anyone who is interested will be happy to read them.
I’m sure Mayo can find some answers for you, and you will enjoy many healthy years with your family. I will be anxious to here your results.
Peggy
Michelle

Sunday, 25th March 2007 at 6:01 pm

Peggy and Lauren,

My sugars were consistently low, especially when I had an ‘episode’ which is what I called my hypogylcemic attacks. On an average day they were in the 50’s or 60’s and in the 30’s when I had symptoms. When you do the 72 hour fast, the cpeptide and insulin levels will determine if you hav insulimoa as it is diagnosed biochemically first.

Best of luck.

Michelle
Lauren

Sunday, 25th March 2007 at 6:42 pm

Thanks for the reply Peggy, my condition has always been worse that time of the month and if ever I had a really bad episode it was during that time. I have also been steadily gaining wait the last couple of months as my condition have worsened. I would absolutley refuse ANY doctor that told me that women’s blood sugars were just low. There’s definitely something wrong with me and I have had all my hormones tested and they’re telling me they’ve ruled out everything else but insulinoma. My blood work results were, I had blood drawn, drank glucose, dropped to 46 in 2 hrs and they drew again:
1st test early morning: glucose 53 mg/L, proinsulin 62.1H pmol/L, c-peptide 1.8 ng/mL, insulin 8 uIU/ml

2nd test: proinsulin 20 H, glucose 46

I’d love somebody to tell me what these numbers mean. My doctor told me that my insulin levels were high not for a normal person, based on what my blood sugar levels were.

How do anybody else’s compare?
Lauren

Monday, 26th March 2007 at 8:38 am

I also wanted to pose this question to anyone. For the 72 hour test I was told I would report to the hospital in the morning, don’t eat breakfast, they would draw my blood and then monitor me until it hit 50 and then then they would draw it again and I would be released. Well what if your blood sugar is already about 45 when you wake up. Seems silly to check into the hospital just to have blood drawn and just to be released. My doctor said I didn’t need to do the 72 hour fast because he had proof from my insulin and peptide level from the five hour test that I probably had insulinoma. Is this enough or is there something else they test for in the 72 hour test that predicts insulinoma? He is now referring me to the Mayo in Minnesotas(i live in New Orleans)
Brendan

Monday, 26th March 2007 at 9:36 am

Lauren,

My 72-hour test was slightly different: they told me to eat a large breakfast beforehand to ensure that my glucose was at a peak. It only took 3 hours to get down to 32, at which point they did another series of blood draws. They allot 72 hours because they want to also verify that you’re not injecting yourself with insulin to artificially drop your blood sugar. Apparently they also check to ensure that your insulin isn’t from animals (which artificial insulin for diabetics often is, apparently). For someone with your symptoms, it won’t last anywhere near that long.

They did other things during that visit, though. They were so concerned about the rate at which my blood sugar dropped that they also took the opportunity to put in a PICC line during that stay (as well as put me through CT and MRI scans). The PICC line was a pain, but made it much easier to manage my glucose levels. Basically, you end up with a catheter in your arm with a port that’s connected to a pump that you wear in a pack around your waist. I was shipped 1 liter bags of a glucose solution every three days, which I had to clear out most of the food in my refrigerator to house. I was getting 1 liter of the solution pushed into my veins every 8 hours, which kept my blood sugar above 65. Prior to that, I was forced to constantly carry around food (and my blood test kit) to make sure I could keep it up.

The Mayo’s supposed to be one of the top places for endocrine tumors; I considered it, but it was more important to me to be near my wife and home, and I was lucky enough to find a doctor locally who’d done them before (and, of course, also was a specialist in laparoscopy).
Lauren

Monday, 26th March 2007 at 9:59 am

Thanks Brendan, I don’t think my case is nearly as bad as yours. I’d guestimate that 3 hours after eating a large breakfast I’d be 45-55 range. Believe me I don’t like the thought of going to Mayo, the flights from New Orleans are outrageous, my husband just started a new job and I’ve got two small kids so I’ll probably be on my own but being that they haven’t located it yet here I want to go the best.
Angie

Tuesday, 27th March 2007 at 2:42 am

Lauren

When I went in for my 72 hour fast I went in the night before and ate a meal at 5pm and started fasting at 6pm. This was because they did not want be going hypo on the way in, this could be especially worrying for you if you have to report to the hospital in the morning without eating breakfast.

You said they would monitor you until you reach 50? That would be ‘3′ here as we use a different scale. Ive been trying to work out all the levels everyone quotes. (0.6 mmol/L = 10 mg/dL – ie 1.8 mmol/L = 30 mg/dL) Are you impressed!!!!!

My endocrinology tests came back as 2.5 which roughly 40. Anything lower than 50 is considered unusual and below 30 is serious. In the Uk if you go below 1 you are probably in a coma! which would be less than 20.

When I had my 72 hr test they stopped it at 1.6 which would be 26 ish but I went in at 36 which was low anyway. (These figures are approximate!) 50 seems to be quite high especially when you are around 45! Its good tho you wont have to do the 72 hr test. I ended up dreaming about biscuits after 24 hrs it was really odd as I kept having to remember I couldnt have anything! Lucky the NHS food isnt that good as I actually didnt feel I was missing out!!

Everyone!

Ive just been for my follow up appointment. Everything looks good! I feel good as far as my sugar levels go! Still have pain here and there and sleeping is slowly improving.

However my surgeon informed me they removed my Gall bladder – good to know now!! I might have missed it! He said he removed it as it ‘was in the way’!!! Good job nothing else got in his way!!!

the insulinoma was just an ‘insulinoma’ nothing worse! and my gall bladder was slightly inflamed – well so would you be if youd been removed!

I may have to go back for another 72 hour fast to check everything is ok – this is a bit dodgy as Ill have to do the whole 72 hrs this time. I only did 30 before they stopped it and that was ok but 72 AAAHHHH!

They may also monitor things for a few years to make sure it doesnt return!

There are a lot of comments on here about weight gain and this is my pet gripe! No doctors here would attribute weight gain to the insulinoma and put it down to overeating because of being hungry due to low sugars. I really disagree here and as I monitored what I ate over the years and was trying to lose weight this really frustrates me.

I didnt put on a huge amount but my weight increased gradually 14 pounds over two years. this wasnt much in all but when you are continually battling to lose, that its a lot! Ive recently been reading the ‘Greek doctors Diet book” which talks a lot about insulin and diabetes and he basically says too much insulin puts on weight. At the end of the day an insulinoma screws up your metabolism!

There is very little info on this anywhere. The surgeon who performed my endoscopy asked me about my weight and seemed very interested but it took me so long to come round afterwards he had gone!!

Im hoping it will all fall off now and Ill be thinner than ever – ha ha Ill let you know.
Seriously I am hoping my metabolism will get back to a more normal balance and Ill at least be able to control things a little better!

Sorry this is very long this morning! Im still indignant over the loss of my gall bladder!!! Ha!

Myrah – where are you?
Susie, Amanda and Michelle – Hope you are still recovering well!

Best wishes all!
Angie
Lauren

Tuesday, 27th March 2007 at 4:44 pm

Has anyone here used diazoxide/proglcem? I started on it yesterday. My dosage is supposed to be 100 mg 3x a day. I’m a spaz and I accidentally doubled my 1st dose. Let me tell you 2 hours later my bs level was 90!!! I wanted to cry I was so happy I felt so good!! This morning I realized what I had done and I took the regular doses. I haven’t noticed a change at all my sugar has been in the 50’s all day. I’m wondering if it takes a while to get in my system or should I be upping my dose? What dosage is anybody else taking?
Peggy

Tuesday, 27th March 2007 at 8:35 pm

Angie,
I’m glad you’re feeling better! I guess I’m not the only one who’s up in the middle of the night sending these. Is that because you still can’t sleep comfortably? I was wondering, is the time recorded on here our time? Did you actually send it at 2:42 a.m? Just curious.

I have always heard that insulin makes you put on weight! I’ve have been real careful about what I eat, but the amount of quick sugars I’ve been consuming over the years has definitely added up. I’m most looking forward to going back to eating lots of vegetables or just a salad for dinner. Although, now I’m so use to thinking FOOD all the time, it may not be as much fun as I thought. Well that 72 hour fast will should start you out on the right track!

Condolances on the loss of your gall bladder!

Michelle, it’s been what,3 weeks? Has your pain gotten a
lot better? Your sugars sounded just like mine, but did they ever get very high?

Angie, did yours? Or did any of you ever have to have glucose shot into your veins in order to wake you up?
Since they can’t find a tumor so far, I’m just curious if I’m any different then all of you.

Lauren, I think you’re taking the highest dosage of Progycem. I’ve taken it for years. It never really raised my sugars, but I went for a couple years without having any trips to the E.R. It doesn’t work that well any more. Do you still have to have the 72 hr test since you’ve already been diagnosed? Maybe Mayo will require it?
I have had it done twice, and I was told not to eat that morning, but since I know myself better than they, I always do anyway. It doesn’t take long for me to drop.
I can’t remember what my levels were, but they did say that the insulin was high compared to the low sugar.
The part that worries me is, the first time it was done..13 years ago, he said although it was high, they expected it to be even higher. The other thing is this new doctor saying that there is some women who have lower sugars without an insulinoma. He didn’t give any other explaination.

I sure wish Jon would comment. (hint hint)

Susie, Amanda, where are you???
Lauren

Tuesday, 27th March 2007 at 8:45 pm

Angie, did you lose any weight with the surgery? were you on an IV? I’ve been reading the insulinoma board on the yahoo boards as well(there’s much more feedback Here) and a couple people there said they lost about 20 lbs just with the surgery!
Susie

Tuesday, 27th March 2007 at 10:29 pm

I had my surgery on Feb 2 and I lost 22 lbs. My surgeon wouldn’t let me eat for 10 days, he wanted to give my pancreas a rest since he had to remove part of it. Then I had terrible drainage problems when I got home, they started me on the statin injections which really helped. My drainage is now 99% dried up. I still don’t sleep well since I have to sleep on my back and my abdomen hurts alot. I wear a adjustable type corset that helps with the pain. I wore it the whole time when I was in the hospital, i only wear it at home when my incision starts to bother me.
I was never on that diaoxide. Because none of my doctors thought I had a insulinoma. I was told I had reactive Hypoglycemia.
This has been the longest recovery of my life, I had 2 C-sections and a hysterectomy and those were a piece of cake compared to this surgery. All I can say is I don’t have to worry about those horrible blood sugar problems anymore.
My surgeon says it’s a horrbile disease and the insulinoma definitely puts the weight on. He kept on telling me that. My surgeon is one of the best in the country on pancreatic surgery, he’s been Chief of Surgery and written many manuals on pancreatic surgeries. People from all over the world fly in to see this guy, he’s so good.
When I had to do those 72 hour fasts, I would eat dinner and then start my fast after dinner, the doctors wanted my blood sugar to drop under 40 and be symptomatic, showing signs of hypoglycemia. I got down to 35. I would get so anxious, which is another sypmptom of a insulinoma.
Hope this helps.
Good luck!
susie
Angie

Wednesday, 28th March 2007 at 2:11 am

Peggy

Hi its 09.00 as i write this and yesterday it was about the same so I must be 8 hours or so in front. Its getting bad I have to check in here morning and night now to see whats going on!!

My sugar levels never went very high but I really only tested in the mornings as that was when I had most lows – around 10.30 am or so. there was never any reason but I was always lower at weekends! I never had black outs but I think thats because my body just coped with being so low for so many years. It was just something that I was used to without knowing anything was wrong. When they first diagnosed this I really didnt take it seriously and wondered why everyone was running around in a flap!

Lauren

I was on diazoxide for 10 months or so. It took a while to get my dosage right. I had odema in my legs so had to take diuretics, which in turn caused itching and dry skin. I still had hypos but not as many but my sugars didnt really go very much higher either.

I lost 7lbs or so over the two weeks I was in hospital for my op – My appetite wasnt good after the operation but I was encouraged to eat after 2-3 days – I hoped to lose more but after a while i was eating semi normally – although my stomach was a little delicate for a while.

Got to go – Ill be back later !!
Peggy

Wednesday, 28th March 2007 at 8:54 am

Lauren,
How do I find the Yahoo boards??
Peggy
Lauren

Wednesday, 28th March 2007 at 9:08 am

Angie, do you remember your exact dosage when you finally got it right?

To find the yahoo boards, go to Yahoo’s website and go to groups and do a search for insulinoma, there are also 2 hypo boards. You will have to register. A while ago there was input from a few people who had the surgery but lately its just been me and another chick going back and forth on that board. Like I said there’s much more input here.

Susie- who exactly is your surgeon, where is he and is he hard to get? I have MD Anderson and the Mayo in Rochester reviewing my case right now.
Aileen

Wednesday, 28th March 2007 at 9:28 am

Hi…it has been very encouraging to read the messages here. I am a 35 year-old female who has recently been diagnosed with insulinoma. It has taken approximately two years for me to be diagnosed (it was finally established in February of this year). Originally, my episodes were infrequent, brief bouts of momentary confusion and blurred vision, the first one occurring at the end of 2004. I didn’t have another one until the fall of 2005. Given the irregularity of the episodes, I assumed it was stress (I am a graduate student) and never gave it another thought. In December of 2005, I traveled with my husband to Europe and had a series of sleeping episodes (periods of deep sleep lasting 12-15 hours from which my husband was unable to rouse me) that we later thought was related to jet lag. However, when we returned to the U.S., I experienced a couple more of these episodes without any apparent provocation. My GP had my glucose tested at this point, and it came up at 61, which is a little low, but apparently not low enough to cause any alarm. When I traveled to South America for the summer (where I conduct my field work), I started having frequent episodes of “zoned-out” behavior, in which I couldn’t follow conversations, didn’t make much sense myself, and had trouble with physical facility, such as walking and vision. On occasion, this problem seemed to be relieved by food, but I never quite made the connection. I also started having pronounced “seizures” at night. When I returned to the U.S., I started seeing a neurologist, and consequently had a MRI of my head and an EEG done, both of which turned up normal. At this point, my neurologist had no idea what was going on and my husband and I were left very confused, feeling as if we were losing our minds.

Also playing into this whole story is that right around the time these episodes started occurring, we were trying to get pregnant…I was diagnosed with having a uterine fibroid (which was surgically removed) and thought that would be the end of it. However, I started having more frequent anovulatory cycles, and my reproductive endocrinologist, thinking I had polycystic ovarian syndrome, prescribed Metformin. Once I started taking this medication, my nocturnal seizure episodes increased in frequency (I have read that this is a common reaction to Metformin for those with insulinoma). Given the links between insulin and PCOS, I started going back to the idea that my problem was hypoglycemia, and did an overnight fasting test with my GP and came back at 35! I then started seeing an adult endocrinologist, and after a clinical fasting test, she was able to confirm insulinoma. I just got my ctscan done this week (I was overseas again for about a month, thus a delay) and a type 1 insulinoma tumor is clearly visible at the head of the pancreas. I have been referred to a surgeon (fortunately, I am at a university that has a research hospital), so I am still waiting on that.

I know some earlier messages on this site referred to the need to do open surgery when the tumor is located in this part of the pancreas, and I just wondered if anybody else had information and words of wisdom in this matter. The thought of surgery is very, very scary, but it is non-negotiable; the insulinoma has completely changed our lives (me not being able to drive or exercise, weight gain, having to get up in the middle of the night, putting my dissertation on hold, dependency on my husband’s care). Also, it is possible that the PCOS and insulinoma are connected, so it is potentially contributing to the infertility. In addition to the surgery question, I am curious if you all know of others who have had both PCOS and insulinoma.

So glad to find you all!
Susie

Wednesday, 28th March 2007 at 10:21 am

My surgeon is Dr. A.R. Moosa at UCSD Thornton Hospital in La Jolla, CA.
Angie

Wednesday, 28th March 2007 at 10:40 am

Lauren

Ive just written a long reply and I crashed so here I am again…

I ended up taking 2 x 50mg of Diazoxide morning and night. I tried taking lower doses but they werent sufficient. However because of taking 200mg per day I suffered from odema in my legs and ankles so had to take a diuretic. Which in turn made me horribly itchy and had dry skin patches.

I often had ‘lows’ and the odd hypo but in the short term it was better than nothing. Because of the effects my doctors suggested it was not going to be suitable to depend on the drug which made me consider surgery more seriously – diazoxide can stop working after a while.

I did experience increased hair growth, which was fine on my head as my hair had got thinner but wasnt too happy with hairy toes!!! This also could have been were my body was functioning better so my hair and nails improved.

All in all I sound so attractive!!! – Ive shaved my toes and it hasnt grown back!
Good luck

Angie
Lauren

Wednesday, 28th March 2007 at 10:44 am

Damn! I was hoping your surgeon was closer, I’m in New Orleans.
Welcome Aileen! Did you go to someone specific to insulinoma treatment that found it or did your regular endo find it? Is a CT scan just a Cat scan or is it that spiral one I keep hearing about?
Aileen

Wednesday, 28th March 2007 at 12:10 pm

Lauren,

Thanks…my endo diagnosed it. Since she is associated with the university’s research hospital, she has had a few of these cases referred to her. I didn’t ask, so it is possible that my ctscan was just the regular computed tomography, but isn’t the spiral ctscan supposed to generate more images? Mine resulted in 200.
Lauren

Wednesday, 28th March 2007 at 2:10 pm

I really don’t know much about that but 200 images does seem like a lot, my endo is referring me elsewhere after glucose testing and one MRI which showed nothing. The hard part for me right now is the waiting for a specialist to take my case.
Homa

Wednesday, 28th March 2007 at 5:32 pm

Hi Aileen
I also have PCOS and insulinoma. I was diagnosed with PCOS about four years a go, At that time I was not diagnosed with insulinoma, but I know now that I had it. I have been having low blood sugar episodes for the last five years. They were finally able to diagnose it two years a go. I do wonder if the PCOS and insulinoma are related, since insulinoma is so rare. If you find out any infomation on it please let me know.
You are very lucky that they were able to locate the tomer. I did the CT and MRI and some other tests but they were not able to find it. So last September I had an exploratory surgery for eight hours, and they were not able to find it. I am not giving up and going to another hospital and I am sure they will find it.

Hi Angie
I am so glad to hear that you are doing better. Sorry to hear about your loss of gall bladder, it least they didn’t have to remove a part of the pancreace. That is something I am worreid about. Hope the rest of your recovery goes well. It has been six month since my surgery. I still have bouts of pain here and there, but it has eased up and it is not as intense, and I feel the improvement. I just hate going through all that for nothing. Oh well, hopefully next time is the charm. Just wanted to let you know, the recovery may take a while. I wish someone had told me that when I had my surgery. It sure would have helped.

Peggy
I also have more symptoms during that time of the month. I would say most of my episodes have happened at that time. I do not know what is the correlation there. I did gain good bit of weight in the last five years. I have gone from being 100 pounds, (yes 100, I was a skiny little thing) to 140 in three years. I needed the weight gain, and now I am just about average. But the weight gain came all of the sudden. about the time I started having episodes. I used to try so hard to gain “one pound” and I could not, and in matter of month, as soon as I was diagnosed with hypo, I started to gain a pound or so a month. My weight has been pretty stable for the last year. I am not your typical person with insulinoma. i do not eat much at all, which is not good either. but I still gain the weight. I have decided to avoid the scale completely, since it won’t do me no good to get on it. It will just frustrate me.

Laureen
I am also planning on going to Mayo soon. I was supposed to go last month but somethng came up and I was not able to go. I know what you mean about it being far. i can not imagine going somewhere that far for surgery. I have done a lot of research, and I can not remember the numbers, but they have an impressive number of cases of insulinoma that they have treated. something like over two hundered something in the last twenty years or so. That is a lot, when you consider the low rate of people who are diagnosed with it. I will keep you posed and let you know how it is up there if I go and you let me know how it goes if you go there before me. I did want to let you know that they would probably do the 72 hour fasting test at Mayo again. I have been diagnosed and had tests and surgery and all kinds of stuff done to me, but at Mayo just like any other hospital, they do not accept anyone else’s tests and have to do their own. It is hard to start all over again, but I am willing to do it and be free of insulinoma. It will be my third time going for a 72 hour fasting, maybe third time is the charm, ha

Best of luck to everyone
Homa
Lauren

Thursday, 29th March 2007 at 8:17 am

Thanks Homa, I am waiting on a Dr. Service at Mayo to review my files and admit me. Its already been a week. Did you have another doctor refer you there or are you just making an appointment and going? Do you know what docotr you are going to see? I’m hoping I will only have to make 2 trips, one for testing and one for surgery.
Aileen

Thursday, 29th March 2007 at 9:11 am

Lauren,

Yeah, 200 is a lot, but I remember the technician telling me that. Apparently, the spiral ct scan produces something like 30 image slices per second, so perhaps this is indeed the system that was used on me.

Good luck with finding a specialist!

Homa,

Thanks for the response…from what I can tell, there are apparently quite a few cases of patients who have both PCOS and insulinoma, but not many of these have been documented in the medical literature. This could be related to the fact that the median age at time of the diagnosis is rather high (in other words, when most women are menopausal). At least, that is what I gathered from the articles I have read. Two citations that might be of interest to you are: Stanciu, I.N. et al. 2003. Insulinoma presenting with hyperandrogenism: A case report and lit. review. Journal of Internal Medicine 253: 484-489 AND Murray, R.D. et al. 2000. Clinical presentation of PCOS following the development of an insulinoma. Human Reproduction 15:86-88. If you or your doctors cannot get these, I can send them to you. In both cases presented, the symptoms of PCOS disappeared after surgery. Interesting, at the very least, but it seems to be a subject of scientific debate.

I wish you the best of luck in your search…don’t give up hope! Please keep us all updated on your progress.
Homa

Thursday, 29th March 2007 at 9:26 am

Hi Lauren
I think I am going to the same doctor. I can not remember, I have to chekc it again. My doctor at duke hospital is referring me Mayo. I will let you know when I find out.
I am also hoping to only go for two trips. I am planning on going for three to four days the frist time so that they can get all the tests done. Because it is not like we can just run over there for another test anytime they want us to go.
That would be neat if we have the same doctor. When are you planing on going there? They were supposed to call us in February to schedule an appointment but instead, they send me a letter informing me of my appointment that was already made. Of course we could not go at that time. I guess big places like Mayo are so busy that they just make the appointment for you and you better make it there, or otherwise you got to wait for a while. I understand they are busy, but hard to drop everything and go when they want you to go.
I am not sure when I am going to go there. April is a really bad time for me. I am exteramly busy with work. so I will have to see.
Keep me posted
good luck
Homa
Lauren

Thursday, 29th March 2007 at 10:25 am

I am not sure when I am going. They are suposedly reviewing my case first I am just waiting to hear from them. I could basically schedule to go for testing at anytime, granted I have about 2 weeks notice to book decent priced airfare. The surgery will be a different story. Its hard to imaging recovering from a major surgery so far from home. I’m in New Orleans where are you? I want to get this over with! I would ideally like to have the surgery in the summer when my kids are not in school.
Peggy

Thursday, 29th March 2007 at 6:50 pm

Lauren, Homa,
I wish I could join you two at Mayo! We could have a party :) It looks like we’re the only ones so far that haven’t had insulinoma confirmed.
Lauren, couldn’t a doctor in your area perform the endoscopy, or at least a CT? They may have to do them over again at Mayo regardless, but it seems if they could find the tumor first you would be more of a priority on their list. You’ve lived with this a long time, I know how anxious you are to have it resolved.
Homa, thanks for the info. You really don’t eat that much? I wonder how it compares? Have you had the calcium infusion test yet? I’m going to ask for that. If I ever feel confident enough to make a decision on who is qualified enough to treat me. I haven’t had good luck with that so far.

Aileen,
Welcome to this unusual club. Insulinoma has affected our lives in a way that is impossible to explain to anyone else. You’ve done a pretty good job of it though. The way I get around driving is to monitor my sugar every time I get in the car, take short trips only and always have glucose handy. I do pretty well recognizing my symptoms now. After living with insulinoma for 15 years, it is hard to imagine how different my life would’ve been without the dependency. I’m a different person mentally than I use to be. But, you learn to make the best of it.
Since you seem so capable, do you mind if I ask for advice on how you would go about researching how much experience
a doctor from a particular hospital(UCLA or USC)has?
If I hadn’t already been through it I wouldn’t be so hesitant.
Hopefully your surgeon will have good news on the type of surgery that is neccessary and your life won’t have to be put on hold much longer.
Peggy
Lauren

Friday, 30th March 2007 at 9:02 am

Thanks Peggy, I have thought of that, if I don’t hear something soon I may try that route. Homa, how long did it take Mayo to make an appointment for you after you gave them the referral or contacted them? Is a CT scan a CAT scan or something special?
Aileen

Friday, 30th March 2007 at 9:26 am

Peggy,

Thanks for your words of encouragement…since you have been living with insulinoma for so long, I was wondering if you have had your blood tests at least confirm the high insulin/low glucose levels? If so, have you simply identified symptoms of insulinoma that far back? I am pretty sure I have only been experiencing these symptoms for the last two years, but when I hear of others who have had it for much longer, it makes me wonder.

I have heard that diabetics often check glucose levels before driving, so I haven’t attempted that yet. I really miss being able to drive! It is a little bit intimidating, though, since I am not always able to sense the hypoglycemic episodes coming on.

Concerning the doctors, I just happened to luck out with an endo who has had experience with insulinoma…it was a complete fluke. However, I just found out who was going to be handling my surgery, so I have been looking up his information on the web (my endo has assured me, though, that he has performed this type of surgery often). I am also going to a university hospital, and many of our doctors here have CVs available from the hospital website, so this might be an option for you. The CVs would at least indicate the physician’s areas of interest and educational background. Also, the state of Florida provides a website through the Dept. of Health where a physician’s qualifications can be confirmed (practitioner profiling). This might be an option for you in your state…I hope this is of some help!

Good luck with your progress!!
Homa

Friday, 30th March 2007 at 9:34 am

Hi Laren
It did not take them that long to schedule an appointment. I would say only a couple of weeks. They will mail you a big package that you have to fill out, so that they can get some background information on you. They want to know everything. the only thing they did not ask was who who was my first grade teacher. lol.
I believe CT is a CAT scan. I had it done three times before but they were not able to find the tumor. I guess mine is just too small.
Hopefully we both will be able to go to Mayo soon
good luck

Hi Peggy
My case of insulinoma is confirmed. The 72 hour fasting which only lasted nine hours for me showed that indeed I have insulinoma. They just have not been ablt to find the tumor yet. I am one of the very few people who has had unsuccessful exploratroy surgery. I did a lot of research on it. and the rate of finding the tumor through intraoperative surgery is very very high, I guess it just was not in my case. The only test i have not done is the calcium infusion test. I am sure they will do that at Mayo. you do want to go somewhere with experience in doing that test. I do not know how I manage to keep my blood sugar up with as little as i eat. The only time I eat really well is before bed. which brings me to a question I like to ask everyone. Do any of you snack before bed? Since most of my episodes happen first thing in the morning, I have to eat something before bed. On weekends when I get to sleep more at nights, I have to set the alarm to get up in the middle of the night and snack on something. That is the worste feeling in the world to have to get up in the middle of the night to eat, but I guess it could be worse. I usually eat a bowl of oatmeal and a little bit of peanutbutter or a peice of cheese before bed. If anyone snacks before bed, what do you usually eat?
Best of luck to everyone
Homa.
Aileen

Friday, 30th March 2007 at 9:47 am

Homa,

I have been eating a snack before bed only for the last couple of months…this was done on the advice of my endo, since I am prone to nocturnal hypoglycemic seizures. Since I have started doing this, I still go pretty low, but not so low that I have seizure-type episodes. I usually eat a granola bar or cheese and cracker…if I run super low when I check my glucose in the middle of the night, I will drink OJ to get the sugar up quickly, followed by something that will burn for longer (wholegrain carbies, usually). I agree that this is a huge pain, but I think it is responsible for the disappearance of my seizures.
Lauren

Friday, 30th March 2007 at 10:02 am

Homa,
You have been through my worst fear right now! Surgery to no avail, I can’t imagine. That really has me worried! I’m glad it is uncommon. As far as eating I normally try to eat something with a lot of fiber in it. Fiber stabilizes the blood suga from all the research that I’ve done and I believe it to be true. I will eat a piece of double-fiber bread w/ peanut butter usually and I started popping 2 fiber pills before bed as extra precaution.
Peggy

Saturday, 31st March 2007 at 12:14 am

Hey everyone,
Funny you should all mention eating through the night. My husband use to wake me in the middle of the night, but hasn’t for a long time. I guess it’s time to start again since he couldn’t wake me this morning and had to call the paramedics. You know what I hate the most about that? Besides waking up to seven strange men standing in your bedroom staring at you, they always shoot you with so much glucose. My bs was at two hundred and twenty something! And I do great at 60! I guess their not allowed to give you any less. At least I’m back in the land of the living. I also hate what that does to my daughter. I guess this means it’s time to make a decision, even if it isn’t the best doctor. I spent all day with my mom who is still in the hospital after pancreatic surgery. Watching what she’s going through is what’s made it hard to jump on the wagon.
I have lots of questions for you all, but they’ll have to wait until morning – I’m going to go eat a snack.
Thanks for being there
Jon Mikel Iñarritu

Saturday, 31st March 2007 at 1:38 am

WOW, I can’t stop reading your nice and open-hearted comments. If there are four cases per million per year, what percentage of the world-wide insulinoma sufferers population have read this little article and HOW percentage of you have written your kind comments, questions, answers and anecdotes?

This is amazing. Thank you for maintaining this site online.

I’m wondering if we can join all the medical data (lab work, CTs, etc) and make it public to the world.

Best wishes for all of you,

Jon M. Iñarritu-Castro, M.D.
Angie

Saturday, 31st March 2007 at 3:23 am

Jon

With so little information on the net for Insulinoma it has been such a comfort to read and be in contact with so many people going through the same things.

Because of this site I was able to get in contact and meet Helen. She had been through everything last year and was such a comfort to me when I only knew the information my doctors were able to give me.

Considering the number of people who have contributed since the beginning its seems there has only been two of us from the UK and in the same area. It was such a coincidence that we had the same doctors and surgeons.

Talking with people in the US in the same situations, having the same symptoms and trying to cope with it all has been just as valuable.

I am sure everyone will agree this site has been invaluable to all of us and will continue to be. Perhaps it may give a wider view for doctors studying this particular area as I am sure first hand information and experiences count for so much.

Thank you again for creating this ‘comfort zone’ !!!

Regards
Angie

PS I have started swimming again, even after only 3 days it is really helping the muscles in my abdomen recover.
ST

Saturday, 31st March 2007 at 6:42 am

I stumbled upon this site during my search on Insulinoma. My wife had insulinoma and the surgery has been completed.

She had the classic symptoms of insulinoma (confusion, loss of orientation, blurring of vision, stupor, memory lapses), always in the morning which will subside after eating something. While we were in the US, these symptoms persisted for 2 years and no doctor (multiple opinions) were able to diagnose. Given that we had 2 kids and being from India, we returned to India. Our family and friends circle in India included some eminent doctors/surgeons which made us do so. She never had seizures in the 2 years in US but had a couple after our return to India. She was diagnosed with insulinoma after the fasting hypoglycemia test and with CT and endoscopic ultrasound, the lesion was reasonably located.

Now that the first nightmare ended (undiagnosed illness), the next one started. Unfortunately her lesion was vascular and adherent to the pancreatic duct and was on the body of the pancreas. One option was distal pancreatectomy wherein she loses 50-60% of the pancreas which would greatly increase her chances of becoming diabetic. Other option was to save the organ and enucleate but her duct will get damaged. The surgeons advised the second as she is 30 yrs old.

The surgeons tried laparascopic (which they felt was not possible for success) and ended up doing the open surgery. As thought, during removal of the lesion, a hole formed in the pancreatic duct. After that the treatment was very cautious with TPN nutrition, various antibiotics and pigtail drains. Regardless of the cautious care, she developed acute pancreatitis and developed infection after about 2-3 weeks. As per the doctors, where the hole is in the duct, necrosis developed and it is not healing. Stent (ERCP) was tried and it came through the hole/cavity instead of bridging across the duct. Her drain is now about 20cc/day and dwindling. The time she has been hospitalized so far is 8-9 weeks (hospitalized last week of Jan 07).

Her options now – (a) Stricture in duct and atrophy (no surgery needed). (b) Stricture in duct and surgery called jejunostomy (intestine to duct link). (c) distal pancreatectomy.

Stent (ERCP) can be retried but the surgeons are worried that it may lead to infection and chances of success is also considered very low.

As she is healing well now, (a) or (b) looks promising. Still looks like another 3-4 weeks of stay resulting a total of 3 months stay. Hoping and praying she will get better soon.

I know the above might create a bit of uneasiness for a few but still better to get the surgery done and get through the insulinoma effects. BTW, my wife’s sugar levels are normal now.
Susie

Saturday, 31st March 2007 at 2:18 pm

Peggy,
What was you blood sugar levels when you wouldn’t wake up the other morning. I can’t believe they didn’t take you to the hospital.
You need to get a endoscope to see if they can locate the insulinoma. Life will be so much different for you once you get it taken out.
Where do you live?
Peggy

Saturday, 31st March 2007 at 9:32 pm

Susie,
They said my blood sugar was at 26 when the EMT’s tested me. I’m sure it’s been lower, because this time I came to rather quickly. Other times this has happened, once I was awake, I couldn’t answer any of the questions they ask you about your life or the world in general for quite some time.
That is a horrible feeling. The reason I didn’t let them take me to the hospital, besides how much the ambulance costs, is that this has happened quite a few times. I woke up in the hospital twice, and they just shoot me full of glucose and then send me home with a large emergency room bill. I did have an endoscopy last year, and they didn’t see anything. I am going to have another one soon. I just hate to have it performed by the same doctors that couldn’t find it the first time. I don’t think I have much choice with my insurance. Did you say that you lost 22 lbs. after surgery? That’s why they didn’t want to do exploratory surgery back then, I weighed only 105… I’m just going to have to go for it now. It’s all worth it though, right??
I live in Orange County.

Aileen,

I have had two 72 hr fasts and my insulin was higher compared to my glucose level both times. My first test was done 13 years ago and yes, I have been having symptoms for that long. Has anyone else here had symptoms for longer than a couple years besides Lauren?

I didn’t drive for awhile at first, I know how frustrating that can be. You could always suck on candy for short trips. But if you’re not familiar enough with your symptoms yet, it’s safer not to drive.
Thank you for the info on Dr’s backrounds. I will check with the Dept. of Health. However, the info I would want is their amount of experience specically with insulinomas, not just with pancreatic surgery, and also their success rate.

Lauren,

They have so many tests now to locate insulinomas, I wouldn’t worry about them not being able to find it first before they operate, not at Mayo anyway.
You know, I had the fiber before I went to sleep the night I didn’t wake up.

Questions:
Does anyones sugar get lower when their sick? I ‘ve been real dizzy, so maybe I have an inner ear or a sinus thing.
Have any of you had to be revived with glucose?
Susie

Saturday, 31st March 2007 at 9:55 pm

To Peggy,
Hi Peggy,
Your blood sugar was 26, that is really low. So it sounds like you have had all the tests and nothing comes up. Have you gained weight from all this. I gained over 20lbs in a year, when I was excerising everyday and eating around 1500 calories a day and couldn’t seem to lose weight. My doctor told me it was menopause since I had a hysterectomy when I was 46, I didn’t believe it for a minute, not the way I was excersing and my rear end was getting bigger, I had never had a big rear in my life. That is one of the signs of insulin resistance. I knew something was wrong. My Uncle who is a physician in San Francisco told me a year ago I might have an insulinoma. When I went to my stupid doctors they said I didn’t according to my lab results. Little did they know that you need to do a 72 hour fast to diagnosis this condition.

You don’t live very far from me. I live in San Diego. I had my diagnosis at UCSD down in Hillcrest, my CT and MRI didn’t show anything, not until I had the endoscope did it show up. My insulinoma was very tiny, about the size of your fingernail.
Before I went in to the hospital to have my surgery, my surgeon told me to drink sugary drinks all day to keep my blood sugar up. If your blood sugar drops that low in the middle of the night I would keep Gatorade or grape juice next to your bed. I’m telling you that grape juice I was drinking before my surgery had 42 grams of sugar in it.
The reason I lost so much weight is because I couldn’t eat for 10days after my surgery and I had a huge amount of drainage . But I needed to lose the weight and have 20 more lbs to go.
Good luck with everything.
Aileen

Sunday, 1st April 2007 at 8:49 am

Peggy,

It is just incredible for me to learn how long some have had to deal with this…my endo mentioned that the head of her medical team once had a patient that had been suffering from an insulinoma for 30 years before being correctly diagnosed! Apparently, prior to being diagnosed, his previous doctors decided he had epilepsy (I guess due to the seizures).

Yeah, I think driving is out for now, unfortunately. The state of Florida has a law stating that if one has had a seizure (or anything else that can impair driving), he or she cannot drive for 6 months, and I have to agree that this is probably something I shouldn’t engage in right now.

Concerning the doctor issue, this might be more of a question for Jon to answer, but I think if you ask the surgeon these questions, (s)he is required to give that information. Otherwise, I imagine the referring physician could tell you about the surgeon’s background. Good luck with this!

ST,

Glad to hear from you! It is encouraging (albeit a little scary) to read of others’ surgical experiences. I will know after April 10 what kind of surgery I will be looking at, so I will keep everyone updated. Due to the location of the tumor (at the pancreas head) I have this sneaking feeling that I am also looking at open surgery. Best of luck to your wife and family!
Lauren

Monday, 2nd April 2007 at 9:01 am

Has anyone else had bad experiences with diazoxide(Proglycem)? I started taking it Tues and it did help with my sugar levels I actually got up to 103 which has never happened before. However I started gaining weight and retaining water big time! I started on diuretic which helps but I still feel huge! I think I’m going to get off of it so I don’t have to buy all new clothes!
Helen

Monday, 2nd April 2007 at 11:45 am

Hi Lauren,

I had a bad reaction to diazoxide, I had hives rash from head to toe. I was doing fine on it for the first 2 weeks then I started with very itchy ankles, then by that evening my legs were covered in a rash, by 3am I could not take anymore and got into a cold bath to relieve the itching. I went in to see my consultant who was sure it was the diazoxide, he asked that I stop taking them and wait for the rash to go then start up on diazoxide to ensure it was the tablets causing the rash. Yes it was the tablets, as the itching started up and before I could get a rash I took some antihistamines. But I believe this is a very rare reaction to have.

I have had my operation last April. Thankfully it all went well. Our surgeon here in London (our being Angie & I), tells his patients that he does not know until he has opened you up whether it will be a whipples or an enucleation. So it was very scary to go into theatre not knowing, but having faith & confidence in my surgeon played a big part in going through with the surgery. Also that I am 36 and did not want to live with insulinoma and taking the chance of being told 10 years or so down the line that it needs to come out. He is a perfectionist and will do his utmost best for you; I believe he took about 3 hours to find my tumor, which to me reflects his perfectionism, in total I was in theatre for 8 hours, had to have a scan whilst in there. When I woke up I was comfortable enough besides the tube that goes up your nose into your chest, that had to come out as it was not doing it’s job, I was vomiting therefore it was bypassing the tube. I was in high dependence unit for 2 days and had an epidural for about 4 days, which was great. They put that in before I went to sleep to help with pain afterwards. Then they tried to take me from the epidural straight to morphine tablets which I can say did not work for me. I was in agony for 7 hours, felt worse than giving birth to my son. My whole stomach area was burning, think this was the nerves feeling very raw. Anyway they eventually came and set me up with a patient control system which is Intravenous Morphine where you safely self-administer pre-determined doses of analgesia, until you feel comfortable. Overall that was probably the worst part of the whole experience for me. I was in hospital for 2 weeks with a few minor complications.

I had all the tests between October 05 & May 07:- 72 hours fast and I lasted 36 hours before my sugar level was 1.2 mmol/L (don’t know what that is in mg/dl) but normal readings are between 4 & 6 and border line is 2.6 mmol/L, I had double vision; sweating; disorientated and shaking. They think I had only insulinoma for about 2 years which is when my symptoms started but they were only a bit of spaced out feelings and blotchy vision. I got more symptoms as time went by and also started to happen more frequently. A month before I was diagnosed I had 2 episodes where I collapsed, as I was running around in the park with my son and obviously my sugar levels had dropped very low and in the last episode I did not know what was going on around me. I still did not know at this stage what was wrong with me.

I had 2 MRI scans, ultrasound, CT scan, glucose intolerance test, angiogram. My tumor was only half the size of my thumb nail. So after confirming that I have a reaction to diazoxide, they put me onto injecting myself 3 times a day with octreotide, which would control my hypo episodes but I still had them whilst on this medication, therefore this was another deciding factor to go through with the surgery.

So this is a very difficult journey for anybody to go through and a very lonely with an extremely difficult decision to make. The best advise I can offer to anybody is most importantly your surgeon has to be experienced in this procedure and if you have all the faith & confidence in him/her, preferably a specialist in pancreatic surgery; go with your gut instinct and research.

I am coming upto a year now since my surgery and am doing very well, they are going to see me over the next 5 years (yearly visit) as I was young to have had insulinoma. I agree with Angie get back into your normal routine and if you did some form of exercise get back into obviously very slowly. I have not got back into swimming and feel that if I had done so my muscles would be a lot stronger now, but I am doing some tummy exercises to strengthen my muscles.

Anyway I hope I have been of some help and wish you all the very best.

Take care
Helen
Lauren

Monday, 2nd April 2007 at 1:05 pm

Glad your still with us Peggy, wow! Thats low. I have blacked out before, last Monday was the last time, but I’m never with it enough to think to check my blood sugar and nobody does it for me. I know I’m still “with it” at 45 at least I think I’m still with it my husband thinks differently! This board has been so helpful to read, it helps the time go by as I sit here waiting for a surgeon to get back with for seems like eternity!!
Homa

Monday, 2nd April 2007 at 4:13 pm

Lauren
The doctor I am supposed to go see at Mayo is also dr. Service. I just have to fill out the package they sent me and schedule an appointment. or let them fit me in. I think I will do it after April when things settle down a little bit. don’t let what happened to me worry you. It is important to stay positive. It was my worse fear, but I would still rather go through all that to at least TRY to resolve this situation. I am confident they will find it at Mayo though. Thank you for sharing with me what you snack on. Any tips helps. Let me know when you are going to go to Mayo. I will keep you posted. You had asked me a question last week and I forgot to answer it, sorry. I live in Charlotte North Carolina. so i am not close to minnesota either.

Aileen
Thank you for sharing what you snack on at nights. It sure helps to see how other people are coping with insulinoma and how everyone is managing it. At least we try to manage it to the best of our abilities. Good luck with your doctor appointment and hope that they would chose the least invasive procedure. The important thing is that they have localized your tumor.
Good luck

Peggy
I am sorry to hear about your episode. I have blacked out before and could barely remember what had happened, but they have always been able to feed me something to wake me up. Your blood sugar was very low. The lowest my blood sugar has been documented is when I went for glucose tolerance test five years a go. Of course I had to go fasting, and I was ok when I walked in the doctor’s office and later found out my blood sugar was 29. When I went back the next time, the nurses were astonished that I was functioning normally at 29. Wonder how low it goes when i have an eposode.
I kind of had a mild episode today. didn’t really black out, but I slowed down. took me for ever to do simple tastks, but all in all not too bad, considering it could have been a lot worse. You have been dealing with this for a long time and I hope you will be able to have it taken care of soon.

Jon
I wanted to thank you for posting this coment board. It has been such a valuable resource and a source of comfort knowing that there are others who understand what we are going through. I wish I had found it beofre I had my first operation. I did so much resarch trying to find out about recovery after surgery. Since I had never heard of anyone else who had gone through this. I did not know what to expect. Next time when i go in for my second and hopefully successful surgery I will be more prepared thanks you

Best of luck to everyone
Homa
Peggy

Monday, 2nd April 2007 at 5:44 pm

Thanks Lauren,
My husband doesn’t check my sugar when I get that low, I think he’s to nervous trying to decide whether or not to call the paramedics. It took me years to get in the habit of checking my blood sugar often. I have a perscription for enough strips to check it 8 times a day. Have you trained your husband to do it for you? He really needs to. At least to bring you the monitor a few times a day. My daughter does that for me.
My doctors won’t confirm this, (just regular G.P.’s) but while taking the diazoxide, I have frequent bladder infections. I’ve wondered if this is because of water retention? I wake up with huge bags under my eyes because of it. That is so attractive. When i first tried to go off Diazoxide, I had like a rebound effect. I got real low, so be careful. I’ve always had a liquid form rather than the tablets, but it does not raise my sugar that much. Maybe you could be on a lower dose that would not cause so much water retention.

Aileen,
Insulinoma for 30 yrs! I don’t feel so bad anymore. I wonder if they ever record how much brain damage is caused.

Has anyone ever read that someone could have a hypoglycemic seizure if their blood sugar was only 60? Does anyone have an experienced Endo that wouldn’t mind answering that question? I have a neighbor who has hypoglycemia, and has just recently had two seizures. The last time they tested her sugar at 60, which is low for having just had a pasta dinner. They haven’t found a cause yet…how weird would that be?

Homa,
I’m eating oatmeal before bed! It’s difficult since I am always full,but a good idea. I can’t remember if I already asked you this, but has anyone suggested nesidioblastosis? (sp?) I’ve read that there has been a few adult cases. They might have to take part of your pancreas to find out, which I am not too willing to do.

Susie,
I’ve only gained about 15lbs. Maybe I have a lower insulin output? I wish I could find my records. My mind (and house) has gotten so disorganized since this disease.
After I read your last e-mail, I had a dream that I met you and your husband. You were very pretty :)

If I had the money, I would throw a big party and meet all of you. It’s a weird bond to have, but I’m glad your there.
Susie

Monday, 2nd April 2007 at 10:06 pm

Peggy,
That would be pretty cool to have a party to meet everyone that has gone through this. You could call it the insulinoma party. I know what you mean about your house becoming so disorganized. Last year I wanted to volunteer and my kids school but they wanted volunteers in the afternoon and that’s when my blood sugar would always drop. I was always to scared to volunteer because I would have to pull out a snack or if the snack wasn’t enough I might start acting real funny. So I never did it. It starts to overtake your life. Forget about traveling, can you image being stuck in a airplane, one would have to take so many snacks with them or tons of sugary foods.
Hopefully you’ll get your’s taken care of soon.
Every afternoon now when I’m so hungry and don’t eat anything I don’t have any more blood sugar drops, I’m back to being normal again. That’s when I would really get hypoglycemia, every afternoon between 3:00 and 4:00, my body was like clockwork. I never went anywhere without a small carton of orange juice.
Well take care.
Peggy

Tuesday, 3rd April 2007 at 7:56 am

ST,
I forgot to tell you that I have been praying for your wife. I’m sorry it has been such a long difficult road for her. I’m not sure I understand, the stricture and atrophy,
how would her pancreas be able to drain? My mother had the intestine to duct procedure and is on her third week of recovery. She seems to be healing properly so far. Hopefully the right option will occur without the need for a distal pancreatectomy. Please keep us informed.

Susie,
I tried to continue with my lifeline vacation every year, which is yosemite. But I always have an episode. One year they couldn’t wake me so they took me to the hospital. Last year they had to call the paramedics. The time before that we made freinds with a doctor there, who was looking for a site and got one next to ours. I think the problem for me is the altitude. But I will never give up our trips there.

Homa,
I just got your comment. Thank you. I get by with keeping rice milk with me. I am constantly drinking that all through the days.

Helen,
Nice to hear from you again.
Lauren

Tuesday, 3rd April 2007 at 8:49 am

Homa,
Thanks, I’m still waiting to get a packet and its driving me crazy, I have suffered with this for so long now that I have a solution I want it done ASAP!

Do those of you that eat carbs, oatmeal, rice milk, whatever to sustain, do you eat a source of protein as well? Or just the carbs? I was always told that I needed the protein to keep me going, of course these were the same people that told me my problem was strictly dietary!
Susie

Tuesday, 3rd April 2007 at 10:20 am

To Laura,
My doctor told me to eat a small sweet potato in the afternoon when my blood sugar would drop. This really helped me. It’s a complex carbohydrate.
Lauren

Tuesday, 3rd April 2007 at 11:42 am

Thanks so much Susie I will try that! That’s much better than peanut butter and cheese as far as calories!
Peggy

Tuesday, 3rd April 2007 at 3:30 pm

Lauren,
Great idea from Susie, I’m going to do that too. I always appreciate suggestions,even though I should just be able to figure these things out. You know, I’ve always know about how protien is suppose to be a slow source of sugar, but it doesn’t seem to help me at all. When I have protien with a meal, I drop just as quickly. The only thing that works is high carb! although it has to be a complex one with a quick source to get me up and then last any lenghth of time. I know it goes against all the dietary rules, but I think that’s because the insulin output is constant regardless of what you’ve eaten. However I still try and have small portions of protien often.
Lauren

Tuesday, 3rd April 2007 at 3:52 pm

That is definitley true. I’ve been gaining weight like crazy and I’ve generally always been a skinny person but over the last few months I can’t stop gaining because I’m eating round the clock. I think I will try omiting some of the cheese and other protein and try relying more on oatmeal and whole wheat crackers! and of coarse, sweet potatoes! Maybe that will help.
Susie

Tuesday, 3rd April 2007 at 3:56 pm

To Lauren & Peggy
My doctor recommended the sweet potato. My kids have so many activities after school. I would microwave one, poke holes in it first then I would wrap it up in foil, sometimes I would put a little Smart Balance on it, take a plastic spoon with me and eat it in the car while taking my kids to there activities. The sweet potato would hold me over until dinner. Also on The Oprah Winfrey Show she had that Dr. Oz guy, he said the sweet potato is the most perfect food, tons of fiber, Vitamin A, folic acid.
Let me know how it works for you. When you have severe blood sugar problems like we all do and did, protein doesn’t help. A complex carb is the best thing.
Good luck!
Susie
Homa

Tuesday, 3rd April 2007 at 5:04 pm

Susie
Thank you for the great suggestion with sweet potato. I will definately give it a try.
If you guys have any other good complex carb examples, please share them. As much as we have to keep snacking and eating regularely. I am sure we could use new suggestions and new food to try.

Peggy
That is neat that you eat oatmeal before bed too. I like it because it is hot and comforting and as funny as it may sounds it doesn’t require much chewing. It is hard enough to eat somethng before bed. so I try to make it as simple as possible, lol. I eat the oatmeal and couple of spoons of peanutbutter before bed. I have never heard of that disorder that you mentioned. goodness, i can’t remember what it is called. I resarched it on the internet. I don’t think that is what I have. I started having symptoms when i was in my 30’s. But I will be sure to bring it up with my doctor.

Lauren
I agree with Peggy and Susie that we need more complex carb than protien. Before I was diagnosed with insulinoma. i was trying to eat mostly protien specially before bed, and I would end up having an episode. for a while I thought I was alergic to eggs. I would eat eggs or eggs and sausage for breakfast and then an hour later my sugar would drop very low and I would have a major episode. I was told later on by my doctor that in the morning, my sugar was probably low and I needed some carb to bring it up. from whatever I have red on insulinoma it states that we need more food rich in carbs, be it complex carbs of course. Since we produce so much insulin. I miss just haivng a salad for lunch. I know if I do that right now, i would be asking for trouble.

Best of luck to everyone
Homa
Susie

Tuesday, 3rd April 2007 at 5:18 pm

Lauren,
I could never eat eggs in the morning, I would always get hypoglycemia. I always had oatmeal in the morning.

Susie
Lauren

Tuesday, 3rd April 2007 at 9:34 pm

Wow that explains a lot. I was wondering why 3 eggs and a piece of wheat toast would only last an hour or so!

Homa- I eat a huge (I mean obnoxiously huge) salad for lunch and I put a can of drained and rinsed black beans on tops. Beans are one thing that will hold me for hours I guess its the fiber and they are a complex carb. I started eating beans for breakfast for this reason.
Susie

Tuesday, 3rd April 2007 at 9:41 pm

Lauren,
Beans are an outstanding source of complex carbs. I would eat hummus for my lunch with some pita chips and a salad and I never would have low blood sugar problems.
Peggy

Tuesday, 3rd April 2007 at 11:43 pm

You guys are right on. Beans and hummus are my favorite carbs! I had a taco salad for dinner last night with a little chicken and ton of black beans and corn mixed in.
I had something before I went to bed too, but my husband said I was acting scary around 4:00 a.m. and had to get me to drink some milk. I don’t remember. Usually that works well, but not always.(I should have had a sweet potato) I remember thinking I had a problem with eggs too, I still wonder.. I drop pretty fast after eggs, even with a few potatoes and toast.

Homa,
I miss those salad lunches too…someday.
nesidioblastosis, I think,is just an abundance of over
active cells in your pancreas. I know it’s a disease that affects babies, but I’ve read that there have been a few adult cases. I wonder how rare that is? If I find that site again, I’ll let you know. Hope that packet comes soon.

Aileen,
Are you still waiting for a surgery date?
Aileen

Wednesday, 4th April 2007 at 8:27 am

Peggy,

Yes, I am still waiting on a surgery date, but should know something more concrete after I meet with the surgeon next week. My endo indicated that the date should be in the next couple of weeks, which is both exciting and scary at the same time. I guess that it’s important to get the tumor out as soon as possible, since it already large (1.8 x 2.2 cm). Has anyone heard about the growth rates on these things?

Also, regarding the brain damage question: I asked my endo about that, and she cited a study involving hypoglycemic patients, and permanent brain damage could not be substantiated. However, I have this feeling that short-term memory loss is becoming more of an issue with myself. I have always had the ability to remember minute details of my daily activities without needing to write lists, but I have found lately that I am unable to do this so well. I am forgetting things ALL the time now…very frustrating! I guess this makes sense, since if I am walking around with a glucose level of 40, my brain is getting about half the sugar it needs to function properly. Anybody else having issues with this?

Also, with all this discussion of food, I was wondering if anyone has had experience with the “frequent small meals” plan. My endo advised me to follow this regimen, as it would keep me going stronger throughout the day, and would possibly reduce some of the weight gain. In other words, taking a normal-sized meal for breakfast and splitting it into 2 or 3 portions, to be eaten throughout the morning hours. I find that I am having an extremely hard time following this pattern, but it makes sense.
Brendan

Wednesday, 4th April 2007 at 9:01 am

Aileen,

Anecdotally, I definitely think my short-term memory has been affected. It’s obviously impossible to quantify, but I also have more difficulty with things that have always been fairly easy for me (like typing and spelling). I’d been undiagnosed or misdiagnosed for over five years, but only for the final three did I have blackouts and confusion. Prior to that, my symptoms were frequent migraines that I could treat with Imitrex, a migraine medication. It turns out that low glucose can trigger migraines, but I had a family history of them, so they chose to just treat the symptoms.

I definitely followed the “frequent meal” plan, but they ended up becoming “frequent nearly-full sized meals” as my sugar levels would drop precipitously if I couldn’t keep up. As frustrating as the PICC line was, it allowed me a normal schedule. Do you have a glucose test kit? My strategy initially was to test myself every hour to find out how quickly my levels dropped, which gave me a baseline expectation of how frequently I needed to eat (and how quickly certain foods raised my levels).

Brendan
Helen

Wednesday, 4th April 2007 at 2:50 pm

Aileen,

I agree with your endo with regards to permanent brain damage. I had all the common symptoms as my consultant listed of blurred vision, palpitations, sweating and weakness, as hypoglycaemia produces adrenaline which causes these effects.

The lack of food to the brain results in the signs seen which usually are periodic. Other signs are: depression, lethargy, blankly staring with poor response to sound or touch and periodic weakness. More severe signs are stupors, seizures, severe weakness, and coma/irreversible coma.

I know I struggled with concentrating and always double checking with myself or colleagues on my spelling. Whilst in conversation I would forget what I was talking about or why I was talking about it – not very nice.

I also experienced 2 episodes where I collapsed with the second episode I lost consciousness; this was bought on by exercising.
Helen

Wednesday, 4th April 2007 at 3:05 pm

Hi Lauren,

I think that following the low GI diet is possibly a solution as it helps to maintain sugar levels as we need ‘good’ carbs – plenty of whole grains such as barley and oats, dried peas and beans, root vegetables and whole fruits to maintain the sugar level. However I am not suggesting going on a diet just maybe including these in your daily diet and also eating every 2-3 hours. Also keep glucagon/glucogel for an emergency.

When I was in hospital for testing before I had my 72 hour fast as I was in a local hospital prior to going to Barts in London to endocrinology, they (local hospital) suggested I eat loads of carbs, I was eating (per day) 2/4 jacket potatoes, biscuits, toast with jam and porridge in the morning and I was still having hypos & sick of eating, eating & eating, plus I had put on about 4kgs (8.8 lbs). Then I met someone who suggested I try maintaining my sugar level by ensuring I have bran, fruit, lentils & seeds etc in my daily diet.

I did try to post this yesterday with some website links but I don’t think it’s allowed. One of the sites I tried to put on was a BUPA website with some info on, so go onto bupa.co.uk website and look in health information, then diet & nutrition, then The long slow burn. This has some useful tips and ideas.

Hope this is of some use.
Helen
Peggy

Wednesday, 4th April 2007 at 9:37 pm

Aileen,

Short term memory loss is definitely a result of low sugars. Short term memory loss is definitley a result of low sugars. (just kidding) I noticed it the first year I was diagnosed, though I remember having symptoms of hypoglycemia years before that. It’s gotten worse through the years, but now it’s blamed on my being 48 years old.

Good luck with those frequent small meals. Before this problem I ate very little so it took a long time to get use to eating every 2 hrs. I use to complain about it but it’s hard to get sympathy from people because you have to eat. They would always say, “I wish I had to eat all the time.” You get use to it though and it really is the best way.

That really is a good sized tumor. I think the growth rate must be pretty slow. I’ve had it this long and it still is too small to see. Although, my last test was a year ago. We’ll see what shows up this time.
Only two more weeks! I am excited for you, though I would be feeling nervous as well. I keep thinking I would like to gat prepared physically before I have surgery. I’m not as healthy as I use to be. It’s great you are taking care of this while you are young. Stay strong and think positive.
Lauren

Thursday, 5th April 2007 at 8:16 am

Thanks Helen – very helpful.
I’m curious those of you who had surgery-do you find yourselves eating a lot less or skipping meals? I am dying to be able to not eat. I’m sick of eating! I am so ready to lose some weight but I just can’t! If only I could exercise but any decent calorie burn drops my sugar really quickly. So then I have to injest more calories to get back up. So why bother? Its a vicious cycle! My pants are getting really tight!
Aileen

Thursday, 5th April 2007 at 9:04 am

Brendan,

With the description of some of your symptoms, I recognize parallels with my own: I also find myself scanning my e-mails over and over again to make sure that I haven’t misspelled anything or repeated myself. I think the short-term memory loss is one of the things I have the most difficulty with, since I used to take my cognitive skills for granted…not anymore!

Yes, I do have a glucose meter, and over the last couple of months, I have found that it takes longer for food intake to induce a rapid increase in detectable sugar levels. For example, if before dinner my glucose reading was 38, a half-hour after dinner it might only be at 42. It just seems like before, intake of sugar in any form had an almost immediate effect, but this no longer seems the case. I have also tried this with juice (which generally has had the greatest immediate impact on my readings) and the effect is similar. I will definitely continue to watch this, though.

Helen,

Exactly…like I explained to Brendan above, I am always double-checking myself these days. I know I have probably repeated myself to friends and colleagues or asked them to reiterate things…I feel so bad about this, but at this point, I have been pretty open with everyone about what is going on, just so they can understand these problems a little bit better when they come up.

I also have had a couple of bad bouts of hypoglycemia while exercising, which is why I have taken a hiatus from everything except walking (and even with that I bring an emergency granola bar and juice). I used to run and bike on a regular basis, but before I was diagnosed, I was just having too many scary episodes with moderate/heavy exercise…it’s a shame, but at this point, I feel like it is too much of a risk to continue.

Peggy,

I was also not much of a snacker before these episodes started coming on, so I am finding that it is difficult to make the switch. Like many of you all have mentioned before, I too enjoyed eating salad on a regular basis for dinner, but I have found that it is just not conducive to keeping my sugar up at night…not having to eat all the time is one of things I am really looking forward to after this operation!

Thanks for your kind words regarding the surgery…I will keep everyone updated with the time/date. When do you go back to look for the tumor? I can’t remember all the details of your earlier conversations, but have your doctors ruled out the possibility of MEN-1? Apparently, that genetic disorder induces multiple small tumors to grow in the pancreas, often too small for the ctscan to pick up. My doctors initially tested me for this, given my family’s history of thyroid problems. Good luck with everything!
Susie

Thursday, 5th April 2007 at 9:51 am

To Lauren,
Since having my surgery I have lost 24lbs. I had my surgery on February 2. Yes it feels great not to have to eat all the time. I eat a bowl of cereal in the morning and then don’t eat anything between breakfast and lunch. Lunch time I only eat a tiny bit, a bowl of soup and maybe a piece of fruit. You will be a new person after your surgery. Yes I have skipped meals and nothing happens to me, back to normal.
Good luck with everything!!
Lauren

Thursday, 5th April 2007 at 10:13 am

Susie, thats what I wanted to hear! Sounds too good to be true, I can’t wait!!
Aileen

Thursday, 5th April 2007 at 10:23 am

Susie,

Just out of curiosity, I was wondering about the details of your surgery…could you tell me a little more about it? If I remember correctly, your tumor was located at the head of the pancreas (just like mine). I haven’t spoken with my surgeon yet, but my endo said she would have preferred the tumor in the tail, since the head location can lead to other complications. Did your doctors mention why they decided to remove a section? And has your recovery improved? I was just wondering, since I will be going through surgery (hopefully) soon.
Brendan

Thursday, 5th April 2007 at 10:28 am

Lauren,

I also lost weight after surgery – and it was an incredible relief to not have to be constantly aware of where I could get carbs/juice/whatever on a moments notice. As I’m sure you’re aware, the psychological stress of knowing your blood sugar could make you, well, “crazy” at any moment was pretty hard to take. All told, I’ve lost 20 lbs since surgery a year ago and have no particular food cravings anymore.
Susie

Thursday, 5th April 2007 at 10:58 am

To Aileen,
Yes my insulinoma was at the head of my pancreas, but when my surgeon went in they couldn’t find it, but they knew the location of it so that’s when he took a piece of my pancreas out. I went into surgery with my blood sugar below 60. So when he took the part of my pancreas out with the insulinoma on that part, my blood sugar shot up to 119. Yes it was a very bold move, but my surgeon is highly skilled and one of the best in the country for pancreatic surgery. The only side effect to all this is the drainage deal, i’m still having drainage but it’s finally slowing down.
The surgery is no piece of cake. I had a NG tube down my nose for 4 days, horrible, never had anything so awful in my life, and couldn’t eat for 10 days, since my surgeon wanted to give my pancreas a rest. I still sleep on my back, just started sleeping on one side but still uncomfortable. But I guess we all have to go through this not to have horrbile blood sugar problems anymore.
I have been walking a mile everyday for the past week, so I guess I’m making some progress. I’m taking the dog to the vet for her checkup and we’re going to Opening Day to the Padres tomorrow. So yes my life is almost back to normal.
But now I don’t have to worry about always bringing my orange juice with me and my Nutrigrain bars everywhere I go. I can let myself starve if I want to plus I have a new body, much thinner.
When is your surgery?
Angie

Thursday, 5th April 2007 at 11:42 am

Lauren

I know this may sound hard but dont let this take over your life!

When I felt low I tested my blood and kept it in the back of my mind, I carried around a cereal bar and if at any time I felt slightly odd Id eat it.

I battled with my weight all the way through the last two years as things got more difficult to lose weight and when I was diagnosed I still went to my slimming classes and maintained rather than lost. I still ate salad but made sure I had some cheese or complex carb as well. Make sure you are eating a healthy diet with emphasis on the complex carb – which is basically recommended for a healthy diet anyway, also carry snacks with you at all times.

Eggs/protein will not make things worse, it means something else is needed at that time to boost your sugars. The fastest way to get glucose levels up is to eat sugary foods but this will give you a see-saw effect and the highs will be too high followed by a rapid drop that is why they recommend complex carbs. However in emergencies as in a diabetic hypo a mars bar is the recommended treatment! – Ideal for Peggy!!

My doctor only said test my blood if I felt I needed to as it would take over and become neurotic about it. Unless you have had the blackouts that Peggy has, be aware but dont get too scared to live.

It is good now to think that if I miss breakfast or eat later I wont have a low! It is also hard when you have had the worries in the back of your mind for so long that suddenly you dont have to worry anymore!

I would like to say if you like chocolate too much before the op – you still like it afterwards!

I can go back 10 years with various symptoms that could be attributed to this that I just lived with thinking it was just me and my querky body so it is good to feel normal suddenly. The tumors are supposed to be very slow growing. However if they grow substantially they will remove them straight away as this could mean something more sinister.

Peggy

Why are you having to deal with such terrible symptoms. Why are you not a priority!
Surely they should start trying to sort it out and not send you home. I dont really understand how your medical insurance works and why you are not under care now. This isnt just a hypo that most of us have suffered it is an extreme danger to your life.
Lauren

Thursday, 5th April 2007 at 12:21 pm

Thanks so much Angie and Brendan that makes be feel so much better. I only wish I had been more agressive in a diagnosis years ago, all this time wasted when I could’ve been a better wife and mother, instead of going through life “out of it”, in a daze and cranky!
Brendan

Thursday, 5th April 2007 at 12:28 pm

Lauren – Trust me, I have a whole new perspective on medical care after being undiagnosed and misdiagnosed for so long. Even if you’d have pushed it with a general practitioner, most of them are inclined to diagnose with the most obvious problem (typically something neurological). The statistics on insulinoma sufferers point to them being treated for epilepsy quite often, which was the case with me. Additionally, even when blood draws are done, we can find ourselves with blood glucose levels that fall on the very low end of “normal” if we’ve just eaten a meal, so the people interpreting the results just ignore that element of the report.

Hilariously, I was only diagnosed properly when my cousin, who is both a GP and a ferret enthusiast, suggested that I should look into the possibility of a pancreatic tumor. That got me to my first endocrinologist after two years of epilepsy treatment. I’m happy you’ve finally gotten to a point where you know what’s going on!
ST

Friday, 6th April 2007 at 4:42 am

Thanks for your responses.

Susie,
I saw in this thread that you were operated on Feb 2 and in a recent post that your drainage is still happening. How much is it draining?

All,
I was getting a bit joyous last week as my wife’s drainage was in the 20-35 cc and thinking stricture was forming. But, suddenly it has shot up to 70 cc the past 3 days.

As for her earlier eating habits (she was undiagnosed at the time), my wife used to carry granola/oatmeal bars. There were days when I found her sweating/shaky in the morning, I would give her a glucose drink first thing which became almost daily during Nov/Dec 2006. In her 2 year history of symptoms, she gained significant weight only in the last 3-4 months before surgery. This was the period she would get early morning seizures / unconsciousness when I used to call an ambulance to move her to the hospital.
ST

Friday, 6th April 2007 at 5:00 am

Brendan,

In my wife’s case too, she was diagnosed with idiopathic epilepsy. In some sense, I triggered the diagnosis of insulinoma. What I derived after watching her on a day-to-day basis and of her symptoms and scouring the web, I felt she had fasting hypoglycemia. I raised this with the doctors as I was not sure if this was her disease/condition or something else was causing it. When in US, doctors shot this down as her blood glucose was normal whenever we visited them. While in India, though initially the doctors felt it as a case of idiopathic epilepsy, as I raised questions of fasting hypoglycemia, they put them together and eventually were able to diagnose the insulinoma. Her first couple of seizures/unconscious episodes, after IV dextrose, she was just a day in the hospital and sent home. After the 3rd seizure and also since the neurosurgeon was a close friend of mine, he began consulting various specialists to determine her problem.
Susie

Friday, 6th April 2007 at 10:28 am

To ST,
My drainage right now is hardly anything. I wear a couple of gauze bandages with tape and change them every 4-6 hours. My surgeon gave me a statin drug, you have to inject it 3 times a day to dry up the drainage. It was a 2 week dosage.
Your wife should be on a very lowfat diet if she is having drainage problems. My surgeon told me the drainage can come in waves. for a few days I won’t have anything then all of a sudden it will start up again. My drainage has really slowed down so I’m hoping it is finally coming to an end.
Peggy

Friday, 6th April 2007 at 11:07 pm

Wow, I know I wrote 3 paragraphs earlier today and sumitted them – but they’re not here! Do yo think this is short term memory problem? :o I’ll try and remember what I said in the morning.
Peggy

Saturday, 7th April 2007 at 11:38 pm

Angie and Lauren,

Reading your last comments gave me the -I needed to call my doctors and try to get things moving. I was on the phone for an hour before I finally broke down. It’s so difficult to play their game, and it is a game with my insurance. They leave the ball in my court, and for some reason that I can’t explain, I can’t seem to get the ball rolling. I have an appointment with my new GP on Thursday, maybe she can give me some answers.
At first I use to work out three times a day and I just took diluted juice with me, which worked well. I remember bike riding and once I went over the handle bars! Since then I stay on the ground. I’ve tried to find someone to walk with me, but to no avail. For some reason I can’t seem to do it alone. Somehow I’ ve lost the motivation to exercise at all since then I know I’m not the one to talk, BUT, you will feel so much better if you do it. And remember there’s a lot of health benefits besides just losing the weight. Your heart for example.
Lauren, just think of the future, you have a lifetime of good memories to make with your family.

ST,

How long before they know if your wife will have to have surgery? How is she dealing with all this, is her faith strong?

Everyone,

HAPPY EASTER…keep the faith!
ST

Saturday, 7th April 2007 at 11:54 pm

Susie,

My wife also is on the somatostatin injection (octeotride) thrice a day. She has been on it for almost 3 weeks. She was on the same drug right after the surgery for couple of weeks and then it was discontinued for a while. Her diet is also a very low fat diet.

Her drainage problem is more due to her pancreatic duct cavity as it is not healing/closing.

Good luck with your healing and wishing you a speedy recovery.

As for people who get to have a major portion or the total pancreas removed, there is a procedure called islet cell transplantation (donor cells) or auto islet cell transplantation (own cells). This is mostly in clinical trials and very expensive (>US$150K). In some cases (total and major pancreatectomy I think), insurance does cover but post transplant costs can still be expensive due to the high cost of immunosuppressive drugs. Some hospitals do offer financial assistance as it comes under clinical trials. Very few hospitals are centers of excellence for this (Univ of Minnesota Hospital, Northwestern Memorial Hospital in Chicago, Univ of Miami School of medicine, Univ of Alberta in Edmonton Canada, Univ of Leicester hospital in UK and Kyoto Univ hospital, Japan). There are other hospitals that are doing the trials but the above are considered to have more experience. The islet cell transplantation eventually could end up as a cure for diabetes. As of now people who lose a major portion of their pancreas end up diabetic and their own cells can be transplanted instead of seeking a donor.
ST

Sunday, 8th April 2007 at 1:10 am

Peggy,

From the looks of it, my wife requires surgery again. When it will be done depends on her drainage reducing to a much smaller amount and also how well her duct heals. About 2 weeks ago, the doctors had said we will monitor another 2-4 weeks or so before a decision on which type of surgery. She is in her 3rd week on this pigtail drain and we still have to wait as the drain has not gone down. Depending on her duct healing, there are 2-3 possible surgery options. If there is no healing, a major part of her pancreas would have to be removed which they are trying to avoid. I am also in touch with the Univ of Minn hospital and checking to see if something can be worked out.
Angie

Sunday, 8th April 2007 at 4:12 am

ST

Ive been following your posts concerning your wife and her problems. When my surgeon discussed my surgery my tumor was 2mm away from a small duct and he warned me that he would have to do the whipple operation as it may have breached the duct. He did not seem prepared to cut into the duct as it would seep pancreatic fluid. He didint mention it possibly healing but was taking the ’safest’ option.

I think your wifes surgeons have taken this option to avoid removing a larger part of the pancreas and perhaps doing the whipple as it seems to be such a large operation in comparison.

Im only guessing here but while my surgeon played down the whipple op others have been quite horrified to hear I may have had to have that done. Its so hard to make guesses when we know so little about the surgery and the way they all work.

It would be very interesting to get one of those surgeons on this site to comment tho the poor guy may be un-indated with questions!!!! –

Jon what do you think?

Good luck ST!
ST

Sunday, 8th April 2007 at 5:32 am

Angie,

Whipple is done if the lesion/tumor is on the head of the pancreas. It is considered major surgery. At the same time, there are experienced surgeons who would have done quite a few. In the past, it might have been considered complex (still is), but with improvements in technology and lots of experience, it is done with great success.

If a lesion is on the tail, then distal pancreatectomy is done (in most cases, laparoscopically too) and comparatively minor to other pancreatic surgeries.

In my wife’s case, as the lesion was on the body part, Whipple is not needed/advised. Based on location if lesion was on the top or bottom side, it could have been a ‘V’ or inverted ‘V’ resection or just an enucleation. This could have been done laparoscopically too. Unfortunately for us, not only was the lesion in the middle of the pancreas in the body part, it was pushing against the duct too. If distal pancreatectomy was or is to be done, her pancreas till that part and possibly spleen would be removed. So, the attempt to just remove the lesion. The pancreatic duct healing on its own is a toss-up because the oozing juices/enzymes do not allow for healing from what I have read and also takes quite some time (months/weeks instead of days). In our case, in spite of her getting a vast amount and various antibiotics and very careful care, she developed infection which made the healing of the duct impossible.

Peggy,
My wife does feel depressed at times in the sense that if she will ever get better, as there were a few Whipple procedures and even organ transplants done by her surgeon and they were discharged after recovery. She had comparatively less complex surgery but still not healing.

She misses the kids the most. As the hospital we are in is famous for multi-organ transplants in India (and they do handle quite a few transplants), kids under 12 are not allowed (for the safety of the kids in fact with regards to infection). If I am with her, she is cheerful and looking forward to recovery. So, I have taken extended absence from work to be with her. Kids are allowed to visit once in a while as an exception in our case and they did so couple of times.
Lauren

Monday, 9th April 2007 at 9:06 am

Does anyone know of insulinoma removal being done at M.D.Anderson in Houston TX? My doc referred me here and also to Mayo. I know Mayo are suppoesed to be the experts but Houston is 10x closer for me.
Susan

Monday, 9th April 2007 at 10:26 am

My 82 year old mother has insulinoma, and I was glad to find a community of non ferret patients who are sharing their experiences. My mother’s surgeon recommended against surgery due to her age, so she treats herself by eating at regular intervals, including the middle of the night (the prescribed medication has bad side effects for her). It takes her all morning to get her blood sugar level high enough to be able to legally drive. As a result, she is gaining a lot of weight. This is bad for her in many ways, and there is no end to the weight gain in sight. She had a mild heart attack last year and gets winded easliy with the mildest exertion. I was searching for information on diet which would maximize her sugar level, but would minimize her weight gain. She has been told to concentrate on complex carbs and protein to achieve long term stability, but those carbs lead to much weight gain. Do you think surgery should still be an option?
Lauren

Monday, 9th April 2007 at 11:56 am

As a followup to my question, the surgeons at MD Anderson have listed under their expertise on their website, endocrine neoplasms, non-functioning pancreatic islet cell tumors and MEN but I don’t specifically see the word insulinoma. Isn’t insulinoma a functioning pancreatic cell tumor? Should I be concerned? They have scheduled me an appointment. One of the surgeons there did do her surgical residency at the Mayou in Rochester but from what I know so far its really important to find a surgeon who has specifically removed a lot of insulinomas.
Lauren

Monday, 9th April 2007 at 3:02 pm

Susan, I would say surgery is still an option. Does she know where her insulinoma is? Becasue that makes a big difference on how severe the surgery would be. From what I’m reading here if its in the tail and could be done laproscopically then the surgery might not be that bad at all.
Susan

Monday, 9th April 2007 at 4:52 pm

I don’t think the Xray actually showed them, but the doctors are quite sure they are there because she has all the symptoms of insulinoma. It took a while to get the diagnosis, though.
Lauren

Monday, 9th April 2007 at 7:43 pm

Susan, if I were you, due to her age, I would get more insulinoma specific tests done, endoscopy, oestricide-I know I spelled that wrong. Xray is definitely not good enough. Get the exact location of the tumor and then decide what your options are.
Susan

Monday, 9th April 2007 at 9:47 pm

Thank you for your advice, Lauren. I will see exactly what she has had done.
ST

Tuesday, 10th April 2007 at 1:07 am

Susan,

I am not a doctor. Given what my wife has gone and going through, I have read a lot on this medical condition.

XRay cannot determine insulinoma. Further tests like the fasting glucose test, insulin levels and C-peptide will reveal insulinoma. Then a combination of endoscopic ultrasound, CT scan and/or octreoscan can help localize the tumor. If the tumor can be successfully localized and if and only if it is on the tail of the pancreas, laparoscopy surgery (which is considered minimally invasive) might be an option in her case. In most cases when laparoscopy is decided, doctors still may have to make a decision on open surgery during the surgery itself (due to various reasons one of which could be excessive bleeding). So, the doctor/surgeon would have to make the final decision given your grandma’s age and the past history of heart attack.

Minimum I would suggest is for her to see a gastroenterologist.

Lauren,

Insulinoma would fall under endocrine neoplasm. It is a functioning pancreatic islet cell tumor. Functioning tumors secrete or produce excessive enzymes/hormones. Non-functioning tumors may just block something and/or rupture/bleed. MEN is a syndrome which implies multiple tumors instead of a single tumor.

Once again, I am no doctor. The above is based on the information I have read/gathered.

Some detailed information here: http://www.emedicine.com/med/topic2677.htm
Lauren

Tuesday, 10th April 2007 at 11:39 am

Thanks, ST, that was most helpful!!
Susan

Tuesday, 10th April 2007 at 11:47 am

Ditto. Your comments are greatly appreciated! I know my mom has had many tests done, just not which ones. They are quite sure it is insulinoma and she now wears a bracelet stating that. The paramedics who came to the house once when she had passed out didn’t know what insulinoma was. She perks up immediately with a glucose iv.
Peggy

Wednesday, 11th April 2007 at 6:57 pm

ST,

It’s good that you can be with your wife, I’m sure that and being able to see her children will help her to heal more quickly.

Susan,

The only thing harder than having this disease would be to have to watch someone you love struggle with insulinoma.
I assume she has already had a CT or MRI. Just be sure that her doctor has experience with insulinomas so you can be confident with their decision regarding surgery. As most of us can tell you, it is very difficult trying to manage these episodes with food.
My mother is 84 years old and is recovering from pancreatic surgery she had 3 weeks ago. She did not have an insulinoma, but the surgery was similar. She is doing quite well. The hardest part for her was getting back to eating enough. She lost quite a bit of weight.
I will be going for another endoscopy soon, since they haven’t been able to locate mine yet either.

Aileen,

How did they test for MEN-1?
Aileen

Thursday, 12th April 2007 at 8:52 am

Peggy,

Since MEN-1 is a genetic disorder, I think family history can play a big part in the diagnosis (i.e., cases of hyperparathyroidism, pancreatic/pituitary tumors). In my case, I think the doctors were able to rule out the possibility of MEN-1 since my calcium levels were normal (if MEN-1 was an issue, the calcium would be abnormally high).

All,
My surgery is next Thursday!! Having finally met my doctor, I am at least relieved that he is so experienced with insulinoma surgery, but it is nonetheless scary. As I expected, it will be an open surgery, since the tumor is located at the head of the pancreas. And as I am sure many others have experienced, there is no guarantee that the surgery will be a simple enucleation. He seemed pretty confident, though, that he would be able to remove the tumor without taking part of my pancreas, but it is impossible to say now if the tumor, for example, is not imbedded in a pancreatic duct (I guess this is when an intestinal tract must be sewn into the pancreas, no?).

Wish me luck!
Helen

Thursday, 12th April 2007 at 1:27 pm

To Aileen,

The advise that our (Angie & I) surgeon Mr B told us both to prepare for a whipples as you cannot know until they start surgery if it is a whipples or enucleation. It is a year next (18th) week since my op so I know how you are feeling right now, funny really to think about how messed up & scared I felt this time last year & now I am back to normal, it is good news that your surgeon is experienced. I will pray that you have a successful operation and it turns out to be an enucleation.

Best of luck.
Helen
ST

Friday, 13th April 2007 at 4:16 am

Aileen,

Wish you a successful operation and a speedy recovery. My prayers are with you and hoping all’s well.
Aileen

Friday, 13th April 2007 at 8:10 am

Helen and ST,

Thanks for your words of encouragement…I will need them. Yes, it is impossible to say whether or not a whipple operation will be necessary, unfortunately. My doctor thought from the ctscan that the tumor was positioned well (i.e., not near any major plumbing) but he won’t know for sure until going in. Does anybody know the percentage of insulinoma surgeries that end up as a whipple procedure (not like this will bring much comfort, though, given that we have already beaten the odds by getting the tumor in the first place!)?
Lauren

Friday, 13th April 2007 at 8:42 am

Good luck Aileen! I’m jealous! I am going to get testing done to find mine May 7th. I’m just praying they find it. I’m sure you will do fine, you will be a whole new woman after its over!
Debra

Friday, 13th April 2007 at 9:05 am

Hello All,

Just a couple quick questions. I would love to hear responses from anyone who would like to reply. How many of you are Diabetics as a result of your enucleation or partial pancreatectomies? Were any of you Diabetics before the surgery or the onset of your low-blood-sugars? Also…has anyone had their insulinoma symptoms come on directly after delivering a child? And lastly, has anyone had a successful pregnancy after having their surgery? Any complications?

Thank you,
Deb
Brendan

Friday, 13th April 2007 at 10:21 am

Deb,

I had laparoscopic enucleation performed a year ago, and I’ve had no trouble with diabetes. My blood glucose typically ranges from 80-120 depending on my eating habits.

Brendan
Debra

Friday, 13th April 2007 at 3:10 pm

Brendan

Thanks for the reply. You have your blood sugars well under control. I’m happy for you. Thanks again for your response.

Deb
Brendan

Friday, 13th April 2007 at 3:22 pm

Deb,

I’m sorry – I misinterpreted your post. I thought you had yet to have surgery, and were polling to find out how commonly diabetes occurred post-op. My apologies; after re-reading your original introduction here, I realize now that my post was not actually useful.

sorry,
Brendan
Angie

Saturday, 14th April 2007 at 4:38 am

Aileen

I dont think this will be of much help but I had a study sent to me by my uncle in Australia. It covered 247 people over 50 years and only one had a whipple but there were 9 re-occurencies from where I imagine not enough of the tumor was taken. This isnt very current tho and there were a lot of very different scenarios.

I dont think anyone commenting on this site has had one!

I believe the surgeons have to cover themselves so warn you of the worst case scenario, and of course when they dont have to do it you think they are wonderful!

Best wishes and good luck for the surgery – take it easy afterwards and be patient! it is quite a long road to recovery as Im finding.
Kathy

Tuesday, 17th April 2007 at 10:41 am

To All of you on here
I wish you all the best of luck. I have read the entire night to read all the posting and am begining to truly believe after 25 years this is what I am suffering from. The problem is I don’t have a real doctor to work with me and get all the necessary testing. I live in New Jersey and would so much love to hear from you guys as to what steps need to be taken. I definietly have the hypoglycemia but nothing seems to help it I am 50 years old and very sick from all of this so if anyone could offer me any help I would so much appreciate it. Thank you and god bless.
kathy
Aileen

Tuesday, 17th April 2007 at 12:47 pm

Lauren and Angie,

Thanks for your kind words…I am getting a bit nervous, since the surgery is only a couple of days away. And then there is the whole issue of the recovery.

Out of curiosity, Angie, I was wondering if you could tell me whether or not you thought travel would be possible after a certain period of time? I am just trying to make my plans for the summer, and since I work overseas, I have been wondering how long it may take before I feel comfortable in making any trips. I know that every case is different, and I won’t know anything until the surgery is over, but it does bring some comfort in knowing about other people’s situations.

Lauren, good luck with your testing!
Angie

Wednesday, 18th April 2007 at 1:15 am

Hi Lauren

Im planning – have booked to go away with my family 26th may – our whitsun bank holiday week, so that will be just under 4 months from my op on the 6th feb.

As its a family holiday my husband will be there to carry stuff! I feel ok now but its the strains of carrying things and sharp movements that get me. I still have stomach pains frequently which I suppose is settling in pains!! Its sort of slow progress now as I look and walk ok from an outsiders point of view but I think it will be a while till Im totally fit and able!

Im flying again in july with just my kids so i hope ill have a better idea from may how ill get along.

Good luck!
Kathy

Wednesday, 18th April 2007 at 5:25 am

Angie
I am not sure if I am doing this correctly or not I have never worked on one of these forums before but if I need some help is it where I have to ask questions to a particular person or will anyone jump in for some help on her. What is very puzzliing to me perhaps you or anyone reading this is that I have all the horrible symptoms of hypoglycemia but my numbers on my glucose meter are not registering as low on it so I am quite confused. If you or anyone can give me some input as to what could be happening or a direction I could take I would appreciate it. I am glad you are recovering from your surgery and wish you the best of luck and am glad you were finally able to get diagnosed and have your surgery and my prayers are with you and your family for a full recovery.
God Bless Kathy
Angie

Wednesday, 18th April 2007 at 5:48 am

Dear Kathy

Anyone who can help you will jump straight in!! If you have clicked the right button at the bottom of your message you will get an email any time there is any kind of posting – Everyone appreciates messages from anyone!

I dont know if I can help at all with your questions on hypoglycemia. I would imagine if your glucose is not registering as low you would not be classed as hypoglycemic – anyone jump in if you think Im wrong! – If you are experiencing such symptoms that you have read about here but dont have low glucose levels you may have to look to another diagnosis.

If you do not have low sugar levels i doubt they will investigate for insulinoma. Have you had any recent diagnosis from doctors as your sypmtoms cant really be ignored what ever it is.

Im a lucky one as they found what I had before I knew what it meant and before I started blacking out! Im finding out how ill I was now that I feel normal!!!

Good luck, any questions post them and someone will help out im sure and let us know how you get on….

Best Wishes Angie
Aileen

Wednesday, 18th April 2007 at 8:39 am

Kathy,

I was wondering if your symptoms are sporadic…I only ask because when my first symptoms appeared, they were few and far between. In fact, the first time I did a simple fasting glucose test (I stopped eating after midnight and went to the lab in the am to get my blood tested), I registered at 61. Low, but not so low that my GP was alarmed. Hence, it took several more months before I was sent to an endocrinologist and diagnosed with insulinoma. Although I didn’t have a glucose meter when I first started noticing some of the signs, I imagine that my glucose levels (most of the time) were not super-low. It wasn’t until over a year later that the symptoms became more frequent (perhaps indicating tumor growth??). Not sure if you fall into this category, but if your first blood tests come up normal or close to normal, and you are still experiencing the symptoms, insist on doing the fasting test again.

Good luck!
Lauren

Wednesday, 18th April 2007 at 1:52 pm

To those of you that have had surgery how long were you away from work? Just trying to plan.
Brendan

Wednesday, 18th April 2007 at 2:02 pm

I was able to work part-time within a week. Once the drain was removed after a week, I went back full-time the following day. I work at a software company, though, so there was no heavy lifting or time spent on my feet. Additionally, it sounds as though most people have had to have much more invasive surgeries performed, so it’s probably an atypical result.
Kathy

Wednesday, 18th April 2007 at 2:31 pm

Angie
Thanks for the reply. I have been from doctor to doctor but don’t understand how I can be this sick with every symptom of hypoglycemia but my numbers don’t run low sometimes 68 to 70 as the lowest. I also thought about PCOS and perhaps the insulin levels are elevated but the glucose is normal I am not sure just trying to find a place I can get some help and answers. My eyes burn terribly like something is being released into them, the blurry vision, the dizziness, headaches, the constant hunger, maybe the burning in the eyes is caused by a allergie but it all happens together when it happens which is most of the day, I have the terrible cravings for sweets but will only eat no sugar but natural products in my food and no real white flour, I have been basically eating a hypoglycemia diet for quit awhile so I am quite confused also to what is going on. I thought it I posted something someone here might be able to identify with me some of what is going on. I am glad you surgery is done and that you are recovering along with so many others. What you have done here along with Dr. Jon is unbelievable you have made a whole new life for so many people who really had no where to turn I know it was a place I found myself to turn to if you or anyone can think of anything this could be please let me know I will keep posted.
God Less kathy
Kathy

Wednesday, 18th April 2007 at 2:50 pm

Aileen
Thank you for replying also this has really gotten pretty bad and has me so puzzled that someone can have all the symptoms of hypoglycemia but not be registering low numbers. I am waiting for the doctor to send my results on the GGT test to me he said I did something in the second hour not sure what he meant but I thought he said be careful you are going to run into diabetes if you don’t watch what you eat my god I have been eating healthy for years I was quite surprised. I am hoping to get the results in tomorrow’s mail. I am very discouraged I have been battling with for years with so many things, first I suffered for twenty years having been to gastrointerlogist for that many years with so many symptoms of weight loss, nauseau, pains in my stomach and just general pains and had 6 endoscopes and had 5 colonescopies and finally I went from 170 lbs to 114 lbs in six months all that time and all those years it was my gall bladder just wanted to send you something interesting you never know who will need this and let whoever is on this site read the interesting stories of how he does he test differently then most. Anyway he took out my gall bladder and he said I had a deformity in it from birth he traced back my testin and symptoms for over twenty years and says how hypoglycemia and gall bladder can go together but since having it out I still have the symptoms of hypoglycemia if not right now they seem worse then before in certain ways at least I can eat now before I was so sick I could not get out of bed. http://www.docsmed.com/default.htm click on to the picture with the girl in it and also read the articles it is so interesting he does the test different then most doctors I had to travel to him to finally get my gall bladder out and he has people come from all over the world thought my nightmares were over but looks like I have the hypoglycemia pretty bad. I think I could also have PCOS not sure but I have looked up those symptoms and they look like they produce high insulin levels but not sure how the hypoglycemic fits in the picture http://www.ivf.com/pcostreat.html another website that some people might be interested in that mention PCOS and pregnancy.
Thanks Kathy
Sandra

Thursday, 19th April 2007 at 8:10 am

My name is Sandra and somehow I got on to this website I had put into the computer gall bladder surgery and hypoglycemia. I was wondering is there anyone here in this group who has had this happen after gall bladder surgery. I had my gall bladder taken out and it seems like now I have such bad hypoglycemia I have to wonder was it all worth it. If anyone can relate or has had something simillar to this please let me know I am searching for answers. Also if anyone could direct me on how to do a engine search I would appeciate it. I was under the impression if you do a engine search you can put in all your symptoms and come up with some ideas as to what is wrong. Thank you everyone for any input. Also not sure put when you post how do you find out if you have a reply? I was wondering does it automatically send something to your email? Sandra
Lauren

Thursday, 19th April 2007 at 12:23 pm

Brendan did you have laproscopy of regular surgery? How big was your incision?
Brendan

Thursday, 19th April 2007 at 12:28 pm

Laparoscopic – four incisions of about 1/2 inch to 3/4 inch each, I’d estimate (plus one in my arm for the PICC line).
Peggy

Thursday, 19th April 2007 at 3:26 pm

Aileen,

I know you can’t read this because today is the day! But if anyone is reading this for you I hope they will let you know that you are in our thoughts and in my prayers. Let us know as soon as you are able how you are doing and how the surgery went.
Keep a good thought, as this will all be behind you soon.
Peggy

Thursday, 19th April 2007 at 10:40 pm

Hi Sandra,

Wow, how coincidental that you posted on the same day as Kathy. Sounds like her hypoglycemia came about, or at least worsened after she had her gall bladder out! You must be farther away since I got your post long after I posted mine at 3:26. I guess you’ve seen that our replys go directly to your e-mail, even before they are posted here. I can’t remember who, but I think someone else on here commented on having worse hypos after surgery. I think it was…Homa? I don’t know if they removed her gall bladder or not. Check her earlier posts. She may not be on for a while, I remember she said that April was busy, and she’ll be having another surgery soon to look for insulinoma.

So, just curious, why did you have to have your gallbladder taken out? And how low does your sugar get?
It’s not very fun, I hope you can find some answers.
I’d like to know how to do a search engine as well.

Kathy,

I looked up those websites, pretty interesting stuff.
You know even if your sugar isn’t as low as others with this disease, it’s still low at 68 or 70! Enough to be feeling the effects. I remember the first time I went to emergency my sugar was only at 6o. ( that was 13 years ago) just talked to a diabetic nurse yesterday, and she explained that you have symptoms according to how far you’ve dropped rather than how low you go. I’ve often wondered how I could have symptoms at 50 that were more noticable than at 38.
You’ll know more when you get your GTT results back. They judge insulinoma on how high your insulin is compared to your low glucose level.

Lauren,

May 7th.. 18 more days!
Sandra

Friday, 20th April 2007 at 2:05 pm

Lauren
Thanks for all your help with all of this stuff I am just so upset I find what is happening to me and has been the symptoms of hypoglycemia are so bad it is so weird that the humbers are okay. I still did not get the copy of the GTT test in the mail tried calling the doctor for a copy and he is old fashion he was not in and believe it or not does not have a fax. I called up another doctor I know and begged him for a fasting insulin test and he said why would you want that if your sugar has been pretty good there is no reason for me to order it and would not why it is such a hastle. What concernes me that I dont hear anyone mention is that my small blood vessels seem to be attacking me with the colds hands and feet and I thought I read if this happens it could be insulin resistant I am so afraid I am stuck like this for life. I take vitamins and eat healthly I can’t image what else could do this I guess there are other reasons to get hypoglycemia but I am not too aware of them. I pray to god there is something out there to help this whatever it is. Can you have a normal sugar level and a high insulin level? If you had that happen do you know what that would mean? If so are there any drugs to treat this if my insulin level is high? Sorry Lauren I am so desperate at this time and doctors are tired of all this when they don’t know what it is they don’t want to be botherd. Any suggestions or ideas from anyone I would greatly appreciate.
God Bless Kathy
Amanda

Friday, 20th April 2007 at 4:04 pm

Hi All!

It has been awhile so I thought I would drop by and let you all know that recovery has been going great. I am a little over 5 weeks post-op now and could not have asked for an easier time. I had open surgery performed as the tumor was on the head of my pancreas and was in the hospital for about a week. I’m left with a scar that is about 8 inches long, but it is only a very thin red line at this point. I doubt that it will even show much once it is healed. Dr. Jeffrey Norton at Stanford Hospital is a genius and I highly recommend him and his team for any insulinoma needs!

I did have a drain in place, but it was removed before I left the hospital. That was actually the most painful part of the whole the process. As the drain was pulled out, my abdominal muscles were sent into some kind of intense, localized spasm. It was terrible! The pain from that actually lasted about a week. I was off pain killers after about two weeks (including hospital time) and experience very little residual pain. Every now and then I’ll feel some pins and needles, especially when I am trying to sleep. I am not doing any strenuous exercise yet, but I do try to go out on long walks and hikes as much as I can. I actually even went out dancing a few nights ago! I was training for a marathon before I found out about the insulinoma, so I am looking forward to getting back into that in late April.

What is amazing is that I feel completely different now. My energy level is through the roof, I can actually wait until I’m hungry to eat, and I just generally feel more productive. I am going back to work on Monday (my surgeon approved a 3-month recovery and I used about 1.5 months) and couldn’t be more excited. Work was starting to be such a struggle with the insulinoma and I think it is going to be a completely different situation now.

I just wanted to let everybody know that surgery does not have to be difficult. We all have different bodies, but for me it was all so easy and I hope that some of you have a similar experience. I completely feel for the people who are having more difficulties and wish that I could take some of that away from you. Stay strong and keep fighting through recovery. Once you get past surgery, we really are cured and life goes on in a completely different (and better!) way. Keep your sights set on that and I trust that you will get through it with no problems.

Take care and stay strong!
Amanda
Kathy

Friday, 20th April 2007 at 8:24 pm

All
You are truly a bunch of good people and what fighters each and every one of you are I watch your struggles and how you support one another and it is so nice to see in life that you are truly all lookin out for one another and building a beautiful site for people to coome to.ALSO A GREAT BIG THANK TO DR. JOH HE ALWAYS GIVES HIS SUPPORT IN ALL THIS AND ENCORAGEMENT.
GOD BLESS KATHY
Peggy

Friday, 20th April 2007 at 9:15 pm

Hi Amanda.

Thanks for that! I had been wondering how you were doing and I am SO encouraged to hear how well you are recovering.
I’m sure it has a lot to do with your young age, but also how fit you must be. You are an inspiration Amanda. Now I am even more determined to start trying to work out before my time comes

Stanford Hospital sounds like the place to go, if only I had better insurance. I’m still waiting to hear from UCLA to have another endoscopy scheduled. Hopefully this time they will be able to locate it.

How exciting for you to be returning to work! It’s good to hear how life gets better. Good luck with the marathon, and
keep dancing, for all of us! :)
Lauren

Friday, 20th April 2007 at 10:25 pm

Amanda, that is so wonderful hear.

Sandra, it sounds like you need to find better doctors/specialists. Have you considered going to the Mayo clinic in Rochester? They have like 43 endocrinologists there and supposedly specialize in insulinoma.
Angie

Sunday, 22nd April 2007 at 4:16 am

Sandra

Hypoglycemia is low blood sugar. If you do not have low blood sugar readings you do not have hypoglycemia!

Obviously you have something else with similar symptoms. The doctors should be treating you and trying to find out what you do have, however they will not do a fasting test without low blood sugar evidence as there would be no point. The fasting test measures the blood sugar levels dropping due to continuing production of insulin when the body should be regulating the levels and insulin production should be dropping off.

Something is obviously wrong so good luck pushing your doctors……

Angie
Kathy

Sunday, 22nd April 2007 at 7:32 pm

Angie & Peggy
I will look through my records and find it. Her lowest level that I remember was 34% which is extremely low. That is why I asked you to get a CT scan of the pancreas now because that level plus the persistence of her symptoms would suggest an insulinoma of the pancreas. Not a cancer but a small area producing too much insulin. It is sometimes very difficult to find, however.
Poor soul, she suffered so long with her diseased gallbladdrer and her pelvic symptoms. I am sure a local CT scan would be as good as anywhere.
God bless,

This is a letter that was emailed to me from my doctor does this sound like you guys or anyone out there my glucose levels seem more toward normal but I have all the hypoglycemia symptoms does this letter he sent mean anything to anyone reading it. Please respond thank you.
Kathy
Aileen

Tuesday, 24th April 2007 at 12:34 pm

Hey all…

Just wanted to let you know how things were going. I am 5 days post-op and am doing well. I had open surgery (which was no surprise, since the tumor was on the head of the pancreas) and ended up with a 1.5-2 inch scar. When I first saw it, I assumed that the surgeon had performed laparoscopic surgery, but it turned out he was extremely skillful in going straight for it (with the help of the ctscan). I was in the hospital for a total of 4 days, with two of them being in the intermediate intensive care unit. My sugar levels shot up 15 minutes after removal of the tumor, so they began administering external insulin so I wouldn’t turn into an instant diabetic (apparently the presence of the tumor causes the pancreatic islets that produce the insulin to become “lazy”). I was taken off the insulin after 12 hours since my pancreas adjusted quickly…I am still on the high range for glucose (@ 100), but the doctor said that should taper off eventually. I still have a ways to go, but I have already weaned myself off of Percocet (I take Advil instead when I feel some pain) and I am taking short walks at least once a day. I know our bodies are all different, but like Amanda, I just wanted to let people know that the surgery is extremely worth it, despite all of the pre-op anxiety. My surgeon also received the results of the pathology test on the tumor, and it was confirmed to be benign. Also, like Amanda, I can already feel the change in my energy level (although I need to constantly remind myself that I still need to rest). Another interesting thing is that I have started to have intense dreams again, which is crazy, since I stopped having memory of these as the hypoglycemic episodes became more frequent. For those of you who are preparing for surgery, have faith in your medical team, and just know that compared to what we have been dealing with on a day-to-day basis, the surgery is so worth it. And for those who are still searching for answers, persevere and keep yourselves on the doctors’ radar screens. I finally got fed up with being sent to the neurologist and the psychologist all the time, so I feel my stubbornness is one of the reasons I finally feel some relief now. I also found a really great endocrinologist, which is of course essential, as well.

Kathy,

I also have PCOS, and what I have learned is that although the association is rare between the two disorders, there is some logic associated with it: In addition to causing sugars to drop (since insulin regulates carbohydrate metabolism), an excess amount of insulin can also stimulate thecal cell production of androgens, perhaps leading to symptoms of PCOS. There still seems to be some mystery surrounding this issue.

Keep us posted on your progress!

Peggy,

Thanks for your kind thoughts…they mean a lot to me.

Amanda,

Congrats on your quick recovery…I was thinking about you, as well, and am glad to hear of your progress!
Kathy

Tuesday, 24th April 2007 at 5:24 pm

Peggy
Thanks for the information I am really sick with all this I can’t lift my head from the pillow the headaches are so bad and dizziness is crazy nothing seems to help I have severe insomnia and am constantly hungry whatever this is is crazy I feel like I am losing it I can’t seem to get answers. Thanks for posting me I am not sure I even post right I never see a message in my email box I check here everyday hoping someone will maybe identify with what I have. The doctor told me he never saw anyone’s level drop to 34 in all the years he has given people a glucose tolerance test which I found to be a little odd as I read here people’s drop low all the time. Tomorrow I pray I am going for a C Peptide test and a Fasting Insulin and Fasting glucose test and I will have to take it from there.
Kathy

Aileen
Glad to hear you are doing so well I am wondering if I will be where you are one day if one day all this nightmare is going to end for me and finally get diagnosed. Keep up all the good work and hope you are up and well real soon. God bless
Kathy
Kathy

Tuesday, 24th April 2007 at 7:44 pm

Peggy,
Just wanted to thank whoever started Dr. Norton’s site on here it is somewhere in the begining I wrote to him and his office callled me today they would like for me to come out and be evaluated I am very nervous because I don’t know this is what I am dealing with so I am going to go tomorrow for my fasting glucose and fasting insulin test, cpeptide test we will await those results then I will have to make the decision on what to do. He did alot of endocrinlogy has has a good background I also had a mircoadenoma back in 2005 had test repeated 2006 and test showed nothing I was told by many doctors that a microadenoma of the pitutary does not just disappear so I don’t know what to think. I also has Hashimotos disease I have nodules on my thyroid and the insulinomnia I am not sure I don’t seem to fit the pattern all of you have which bothers me. I have the Glucose Tolerance Test he could look at and I have the two pictures of the MRI’s of the pitutary with one in and one out. I have the two thyroid scans that were done also. I was wondering if I could pay him to look at that information and let me know if any of that is causing my problems also could be looking at perhaps MEN;s not sure this is all guess work I am not sure. I have all the symptoms of hypoglyemia but they don’t seem to leave me much at all and I don’t hear people on here saying that I seem to be in bed almost all day with these horrible headaches, blurry vision, dizziness every symptom is there but what else could be causing this to happen. For me to spend the money of course my life is worth any price but it seems like you people eat and get relief of the symptoms I don’t I have it almost all the time. Anyway just wanted to share and post and say hello to everyone and for the ones who are in surgery hope you are recooperating in my prayers for the ones who are home recoperating hope all of you are doing well and also enjoying your new life which you all so deserve maybe one day I will be like you guys not sure. Talk to you soon.
God Bless Kathy
Kathy

Wednesday, 25th April 2007 at 7:48 am

Peggy & Anyone who can interpret this test result
I have my 5 hour glucose tolerance test in front of me and what it states is
My fasting glucose number was 82
After I drank the solution they did one 1/2 hour reading that was 175, one hour reading was 134, two hour reading was 34 (Confirmed by repeat analysis) 3 hour glucose reading was 55 4 hour reading wa s 76 and five hour reading was 81 so what does this all mean I don’t know. I am curious if anyone who has this insulinmoa also has low blood pressure my blood pressure has been pretty low also running 90/52 which is very low for me not sure if the two go together or not. Thanks anyone and everyone for any help you can offer.
God Bless Kathy
Peggy

Wednesday, 25th April 2007 at 3:13 pm

Aileen,

You’re cured! Congratulations. :)
I can’t believe you have a scar less than 2 inches, how incredible. I want your doctor. That’s awesome you can just take ibuprofen. How was the pain when you first woke up? Did they give you something stronger than percocet to begin with? It’s great that you’re walking everyday, I hope you continue to recover quickly. Your news was very encouraging!

I finally have a date for another endoscopy…May 7th
Same day you go for your tests Lauren. Hopefully this time they will find it!
Peggy

Wednesday, 25th April 2007 at 7:39 pm

Kathy,

34 is unusually low glucose, which is why they would think it was an insulinoma. However, did they have to give you glucose or anything when it was that low, to bring you back up? If your body can do that on it’s own, I doubt it is insulinoma. Men-1 sounds like a posibility. Since you have the problem with the pituitary and pancreas..I thought MEN-1 was the parathyroid though, rather than the thyroid. Anyway, Men-1 would cause hyper not hypothyroid.
I know how it feels to have terrible headaches, I woke up this morning with a migrain. The last one lasted 2 1/2 days,
and I was very dizzy and week. That happens a lot to me, even when my sugar is o.k. I do have low blood pressure as well as cold hands and feet. That could all be due to low thyroid. (Hashimotos)

I know how hard this is for you, but you are so fortunate to be going to Stanford. I’m sure they will be happy to look at your films, as well as take their own. Put your trust in them, they know as much as there is to know about endocrine problems.
Soon they should have it all figured out for you.

Peggy
Lauren

Saturday, 28th April 2007 at 7:47 am

Aileen that is awesome! Especially after reading one guy have a 13 inch scar! and walking around in 5 days wow! Who was your doc and where did you go?
Lauren

Saturday, 28th April 2007 at 10:08 am

Aileen and Amanda, how have your eating habits gone since surgery? Are you able to stomach any food yet Aileen? Amanda how long before you were eating again? Have you lost much weight?
Aileen

Monday, 30th April 2007 at 2:01 pm

Peggy,

Thanks…it is pretty wonderful to be on the road to recovery. My husband and I measured the length of the scar, and it is closer to 2 inches. Initially, the pain was quite intense, and the doctors put me on morphine for the first three days (self-administered). Even so, it makes me cringe to think of the first time I got out of bed to use the bathroom…the pain was awful! Now, I am not even using advil, but to be honest, I think it helps that the incision is so small. I am sure that if it was larger, my abdominal muscles would be taking much longer to heal.

Best of luck with the endoscopy…let us know how it goes!

Lauren,

I definitely have to give the credit to my surgeon…his name is William Cance, and he is the chief of surgery at Shands Hospital at the University of Florida. He has quite a bit of experience with this type of surgery, and I suspect that since he works out of a research hospital, folks with insulinoma are referred to him from much of the Southeast.

And yes, my eating habits have changed! I am only eating three meals a day…no snacking. The doctors put me on solid food two days after surgery, so I only experienced a 5-7 lb. weight loss from the hospital stay. I suspect that since my dietary and exercise habits have changed, that this trend will continue (at least I hope so!).
Lauren

Wednesday, 2nd May 2007 at 2:21 pm

Has anybody besides Homa gone through extensive screening and not found their insulinoma? I am going for testing Mon and I’m terrified of this!
Peggy

Wednesday, 2nd May 2007 at 4:55 pm

Hi Lauren,

I know how you feel. You know what is scarrier than having tests done, is having reactions to low blood sugar! This weekend I took a ride to the E.R. in an ambulance because my husband couldn’t wake me up again. It’s definitely worse than it use to be, my sugar was 26 this time. But the bill was the real scary part. I’ve had multiple MRI’s and CT’s, 3- 72 hr fasts, an angiogram and an endoscopy. You don’t have to be afraid of the tests they’ll do, they’re painless. As I remember, you’ve already had some blood work and an MRI. I hear the high resolution CT’s are of greater value for this. It seems with all their expertise now, they wouldn’t go in without finding something first. I know there’s still that possibility that it could be more than one simple tumor, but I try not to think about that. Really, Homa was the exception out of all the people who have been posting on here. At least they know what they’re doing at Mayo, and they have all the right equipment there.
Chances are pretty good that they will find it for you.
If I can just hang on ’till Mon. maybe they’ll find mine too!
Bev

Thursday, 3rd May 2007 at 7:36 am

Hi everyone,

I’m in the U.k and came across you all while searching for info insulinomas.

Well to cut a story short I’ve recently been having hypo’s and over the past 2 weeks around 4 – 5 a day. I’m 38yr old female of good health.
Reading your mail I to have an extreme craving for sweetness and have the most vile mood swings if I dont eat when I need to. But to top it my symptoms:
blurred vision, weakness dizzyness, edge of passing out, confusion, tiredness, crying, panic. Low blood sugars of 3mmols @ which point I’m freaking out.

I have been to my Genral Practitioners twice and to A&E accident and emergency twice and I feel as if they think I am making it up as when I get there I am on the recovering pathway due to my glucose intake. However I get terrible pulpitations as if my heart is coming out of my chest when I am coming up and I go as white as a sheet. Aswell as feel a little nauseaus then it settles down depending on how much glucose I have taken. I hate it, it upsets me so much.

However my G.P. has now descided to refer me to an endocrinologist at a privete hospital so I can hopefully atleast be diagnosed. He believes its an insulinoma or that is how he is treating it. I will inform you of the plans but my G.P seems to think I will also become an inpatient for the 72hour test. This totally terifies me. I can not bare the thought of loosing control to the hypo.

Anyway good luck to you all and I will keep an eye out on the e-mails.

Bev
Lauren

Thursday, 3rd May 2007 at 8:39 am

Thanks Peggy, I’m actually going to MDAnderson in Houston cause its so much closer for me. If they don’t find anything or I’m not comfortable with their surgeons I will definitely be on my way to Mayo. I lose track, did your tests actually find an insulinoma? If so, which test found it?
Peggy

Thursday, 3rd May 2007 at 4:06 pm

I’m sorry Lauren, I remember now you said you’re going to Houston. I would be doing the same thing in your place.
You’re just going for tests right? And you will be going back for surgery, hopefully? They haven’t found anything yet on me. Only the 72 hr. tests confirmed insulinoma. I go for another endoscopy on the 7th. Only three more days, are you geting anxious?

Does anyone else with low sugars have migraines??
Lauren

Thursday, 3rd May 2007 at 5:57 pm

Welcome aboard Bev. I know the 72 hour test seems scary but its basically the standard procedure for somebody in our situation. I would have somebody go with you if I was you, somebody that understands what happens when you go low and possbly take a glucose monitor with you so you can tell how fast you’re falling. I know mine come on very suddenly. All of sudden my brain shuts down. Good luck.

Peggy – wow! I didn’t realize you had so many tests to no avail! That is my fear! Who has been doing your testing? Is it somebody who is experienced with insulinoma?
Peggy

Thursday, 3rd May 2007 at 7:27 pm

Lauren,

I had a good endocrinologist at first, who diagnosed me right away, but I guess he was too good for my insurance. So, since then I’ve just been having tests. I’ve been told by a certain hospital that there equipment/ technicians are better than others. I guess I haven’t had the right people doing mine. Really, you have to be your own advocate. Experience with insulinoma can vary so much. I think it’s my insurance that’s been holding me back from being treated.
The endo. that did my second 72 hr fast recommended that I go to Mayo or Stanford. My insurance settled for UCLA. I wish I had persude the other hospitals because I believe they would’ve taken care of it long before now. Just be sure, if on the small chance that they do not find what their looking for in Houston, that you don’t go home! Make them do every test they know of. I know the calcium infusion test isn’t done that often, but if that’s all that’s left, do it! Sorry to sound so extreme, but you know how it is to live with this for so long. The good news is you’ve had the least tests so far, they’ll probably find
it on your first CT. :)
Peggy

Thursday, 3rd May 2007 at 8:09 pm

Hi Bev,

After living through a few surgerys,a scary childbirth, deaths in the family and even raising a couple of teens, THIS is definitely the scarriest thing I’ve ever been through. Loosing control to the hypos is hardly even relatable. At least you’re not alone, though it sure feels like it. I spent a day in the emergency room this weekend, I don’t think they really know what you’re experiencing either. The good news is there are people who do now. Two people on here were treated in the UK, successfully. Angie and Helen.
Great advice from Lauren, take someone with you that can tell when you get low. I had a freind call me when I was in the hospital, and he could tell I was out of it and had to call the front desk to send someone in to take care of me!
Though they want you to have some symptoms, they don’t have to keep you down long. If you have someone with you who
knows when you’re getting low, and your own sugar monitor,
you should be fine. Nothing like when you get low on your own.
I hope your diagnosis and treatment go quickly!
Peggy
Lauren

Friday, 4th May 2007 at 8:32 am

Peggy, so UCLA has been running all your scans? I would think they would know what they are doing. I hope I am not making a mistake by not going to Mayo right away and saving the time. But actually my doctors sent referrals and my records to Mayo over a month ago and I was told that a Dr. Service was reviewing my records. I have not heard a word from them since. I find this strange. I know Homa said she was supposed to be seeing the same doctor.
Homa-if you’re out there, has Mayo been responsive to you?
Aileen

Friday, 4th May 2007 at 9:29 am

Bev,

I would concur with Peggy and Laurens’ advice…I brought my husband with me, and it was absolutely comforting to have a loved one close by in an uncomfortable situation. From what I can tell from others who have written about their 72-hour fasting tests, many were able to get to an acceptably low level before 12 hours were up. Hopefully, you won’t be stuck in the clinic for much longer than that. In my case, my endocrinologist was uncomfortable taking me any lower than 35 mg/dL (even though I had previously registered at 20 in her office). She monitored my heart rate (looking for rapid pulse), my temperature (looking for a drop), my skin (clamminess), and asked me math questions (trying to ascertain whether or not my cognitive skills were still functioning). Once all of these factors broke down (and once I reached 35), she stopped the test. I think she didn’t want to send me into a seizure-type episode, but I guess she also needed to draw blood at the appropriate time (when a low blood glucose level was going to represent an exceptionally high insulin level).

I am sure your clinic will try and make you as comfortable as possible, and will not let you fall to dangerously-low levels…it is not ideal to have to go through this, but it is the first step in getting your insulinoma diagnosed…good luck and keep us updated!
Bev

Friday, 4th May 2007 at 1:55 pm

Thank you,
Aileen, Peggy and Lauren for your kind advice.

I am off to London tomorrow to see Mr Lynn who is top dog for Endocrinology in the U.K. So hopefully I will have news and plans for the 72 hr test etc.

I,m off work at the moment as I’m a nurse on a general elective and acute surgical ward. Not the best place to be blacking out.

Anyway will let you know what happens.

Good Luck
Angie

Saturday, 5th May 2007 at 2:36 am

Bev

Do not bother going private !!!

Get your doctor to refer you to Barts and the London, Dr Drake.
Not knowing where you are may make this difficult but they really know exactly what they are doing. Im near so it was easy for me.

My insulinoma was suspected by my doctor in june, I had a 72hr fast in july, various scans in august and a calcium infusion test in september, an endoscopy in november and my operation was in february. I could not really have had better care and the surgeon was the top man.

Any help or questions let me know!

Angie
Angie

Saturday, 5th May 2007 at 2:51 am

Bev

Ive just read your post again as I replied before reading all the other replies.

To put your mind at rest they monitor you constantly and the nurses are trained specifically for these tests – but you need to go somewhere where they are! They probably will not allow anyone to stay with you – in the US I think you get more freedom but here is a little different, I dont know how they do it privately.

They have to get two readings below 2, mine were 1.9 and 1.7, as soon as you hit that they pump you full of toast and sweet tea!!! If at any time you feel you are having a low you call they test with the monitor and take blood to send away. It took 30 hours for me to get my two results and I went in with a count of 2.9 – I had been 2.2 all weekend before I went in!

Hope this helps – there is no need to be terrified, but try to go to St Barts, that is my best advice. Myself and Helen were treated there.

Angie
Bev

Saturday, 5th May 2007 at 12:40 pm

Angie cheers for advice,

I live in Brighton I went to see Mr John Lynn (endocrinologist) today at the Cromwell in London. He seemed pretty convinced. I have my test on Sun to Weds. Part of me feels like a fraud as when I am well I can cope and think I imagined the whole thing.

Your blood levels are they blood sugar finger prick levels or intrevenous from your vein?

Well I hope this hospital is as knowledgeable as they sounded at St Barts. Well I have faith in them.
Angie did you have it done laparoscopically or a laparotomy?

And

When you ate pre surgery after going low did you feel just as odd going high?

And

Did you just eat when you thought you were going low and at what point did you know this was happening?

Soz for all the questions but your all the nearest thying I have to understanding.

Cheers angie.
Helen

Sunday, 6th May 2007 at 2:50 am

Hi all,

Well done Amanda & Aileen on getting through your op and am so very pleased it is going well for you and is has been successful and that is a tribute to your surgeons. Yes it is amazing after surgery how different we feel and for me that is when you realise how sick you actually were before the op.

Wow Aileen, 2 inches that is great, mine is 8 inches (which is the norm). Yes the thin red line eventually fades to a very fine white line but then I am not someone that shows off my tummy or wears a bikini so it does not bother me so much.

I can say that although we feel normal again you do need to take it easy, listen to your body, when you feeling tired then just sit back. I was in hospital for 2 weeks, then off work for about 4 months. They say about 2 months recovery before going back to work, but I was mentally struggling with the op and a few other things so was not ready to go back.

Still a year on I sometimes feel really exhausted, I don’t think I’m as strong as I used to be but am healthy & well. I sometimes am a bit sensitive around the scarring, e.g. when I sneeze or when I do some tummy exercises, it is not painful though.

Amanda, hope you are enjoying being back at work and I must say you were brave to go out dancing so soon. I did get out and about and go for walks but did not attempt the dancing until much later.

Hi Bev,

As Angie says you definitely need to get in touch with Dr Drake at Barts or get your GP to refer you, he is one of the top endocrine specialists there. Our surgeon, Mr Bhattacharya and Dr Drake are a wonderful team and you could not ask to be in better hands.

I know this is a scary journey but you will get through it and being with the endocrine department means you can trust that you are in the right place for the 72 hour test as I initially was in a general ward at a local hospital and that is scary to be with nurses that are more frightened than you! I spent a week in this ward and the nurses are lovely and worked hard but they did not understand or know of insulinoma or how the 72 hour test should work therefore kept feeding me to make sure I did not have a hypo. Once I was transferred to Dr Drake’s team in London I felt the difference and relaxed a bit and had more faith in them.

An article for you to have a look at
http://www.bartsandthelondon.org.uk/formedia/press/release.asp?id=1337

If you would like to email me at the address in t he 3rd response as above then please do, I am happy to help out and meet up like Angie and I have done prior to her op – that’s if it’s doable.

I don’t sign on often at home so sometimes am slow at responding.

Best wishes to all.
Helen
Lauren

Sunday, 6th May 2007 at 11:31 am

Those of you have done the 72 hour test, how long was it after they drew blood that you got results? I know getting an insulin reading is a lot harder than a blood sugar reading.
Angie

Monday, 7th May 2007 at 3:04 am

JON
We are missing 3 posts!
Angie

Monday, 7th May 2007 at 3:37 am

Bev

Ill reply to your post that came through to me but isnt here!!!
If you need to contact me, Im on angieanco@talktalk.net.

Just to say this to you and anyone else reading this, any questions you have, you must ask! When I first found this site I was heading for surgery and could find very little info on this condition – everything was about ferrets and dogs!

Helen replied to me and when I found out she was “up the road” I was so relieved I cried! She will tell you that she found very little help or info when she was going through it and she helped me so much! We are very good friends now!

Anything that we can help you with we will. We felt that we wanted to start something that could offer info and help but this seems to be doing that with all the input anyway!

Are you doing your test on the 13th May or are you doing it now?

Blood levels are from the finger prick test but during the test they take intravenous blood to test, as that takes a few hours they test with the finger prick test to keep a close watch.

You may find you end up with our surgeon anyway as Im sure he does private work too!

I could not have keyhole because of the tumour being where it was in the head of the pancreas next to a duct. I have a 9 inch scar across , 2 inches above my belly button. Helen’s is smaller – we have compared – LOL!

I dont really understand your question about eating. When I ate I felt normal, I only felt weird when having a low. My body was so used to being so low for so many years without knowing anything was wrong. I never blacked out although I did have the odd bout of confusion – my husband says that was normal ha ha! – and I lost time one day, I was feeling bad and things were really strange. I know what you mean about feeling a fraud as when I was in hospital having the 72 hr test they were all really concerned and I was wondering what the fuss was about – I know now!!

When I had a low I would go shaky, have extreme sweats, loose my ability to talk slightly and I d get a fizzy tongue. I would not always get the same symptoms. My worst reading was 1.7 at work one day and I just felt faint. I tested my blood for about a month while waiting to go to Barts. It was very interesting.

I always kept a cereal bar with me in case I had a low. I was still trying to battle my weight and was going to Slimming World all through this to maintain. It did become an excuse to have a bit of this and that when I was feeling low but if I hadnt have been doing that my weight would have rocketed. I put on 10lbs over the last two years for no real reason which was also another reason I felt something was wrong.

I was so tired all the time and getting a bit depressed. I hurt my back and went to my doctors and while there asked for a blood test. It all went from there – very quickly I must say!

They reckon with my history I had had this for 10 years but it had started to get to a size where it was effecting me more and more.

Let me know when exactly you are going in.

Im back at the London next week as I have to have a scan – I may have a build up of fluid and they are going to check it out! If you are there I could pop in!!

Its 3 months yesterday since my op and the change is incredible!

Hope this helps you keep us informed.

Regards
Angie

PS Lauren – it took a couple of hours to get the blood sugar readings back but a few days/week for the c-peptide and insulin levels.
Peggy

Tuesday, 8th May 2007 at 3:46 pm

I had an endoscopy yesterday, but they didn’t find anything on my pancreas. :(
They found that the lymph nodes around the pancreas were swollen, whatever that means, so they took a biopsy.

Bev,

Are you having those tests done now? Are you finding answers to your questions? I don’t really have any symptoms anymore, until I check out mentally. I eat or drink rice milk whenever my sugar gets in the lower 50’s.
Which is all the time. I only feel strange coming up when I’ve been extremely low, I figured this was just before my brain has gotten the sugar. Speaking of which, I could use right now.
Bev

Thursday, 10th May 2007 at 1:38 pm

Hi Peggy,
I’m going for my test on Sunday. I’m hoping I can take my laptop and be able to use it there so I don.t die of boredem……lol.
Does anyone know if having a PICC line standard for this procedure or does it depend on the hospitals local policy?
Brendan

Thursday, 10th May 2007 at 1:50 pm

Bev,

Based on the other experiences described here, I believe the PICC line is more special case than standard. My endocrinologist felt strongly that I needed one because my levels were dropping so rapidly at that point, and that it would keep me stable while we consulted with potential surgeons. All told, I had it for about a month. It did make it very easy to do most normal things (like, y’know, drive, or take plane flights, or stop eating every thirty minutes). If the time between your diagnosis and your surgery is short, it’s probably not worth it. I had to deal with a home care nurse each week (she would change the dressing), constant shipments of glucose and batteries for the pump, and the increased difficulty of showering while wrapping one arm in saran wrap to keep it dry.

It doesn’t rank as one of my Top Life Experiences…

Brendan
Jane

Thursday, 10th May 2007 at 4:44 pm

Am having surgery on Monday for an insulinoma and am very nervous of what will actually happen. Looked on the web and found this site. Couldn’t stop reading all the info, good and bad. I’m in Birmingham, England.
Jane
Peggy

Thursday, 10th May 2007 at 11:27 pm

Hi Jane,

I wish I was you! I assume they know just where your tumor is. Monday will come quickly, naturally you are nervous, I would be as well, but it is a little exciting is it not? Have you had the condition a long time? I think I hold the record at 15 years. Out of around 15 of us I think 10 have had surgery. 6 did really well, Suzie had a harder time, but is doing pretty well now too. Only 2 or 3 were more complicated. That’s pretty good odds.

(ST, I would really like to know how your wife is doing.)

Hopefully you have good support to go through this with you, but if you need anything from us, we’re here for you! Let us know what you are going through.
Peggy
Bev

Friday, 11th May 2007 at 4:54 am

Hi Jane,
I’m in Brighton south coast of England. I go in for my 72 hr fast on sunday evening. How long have you been between 72hr fast and surgery ?
Angie has had the surgery in the U.K. and is great for information.

I wish you luck Monday and hope to hear off you post-operatively.

Goog Luck Bev
Lauren

Friday, 11th May 2007 at 11:45 am

Bev – how did you fasting test go?

72 hour test question – I had mine on Monday morning. I ate something at 3 in the morning and by the time I got to the observation room my sugar was 39. They said they wanted to get another reading before stopping the test. Then it started going up! Has this happened to anybody? It never went over 50 but lingered between 45-50 for hours!! I’m wondering if it was because I was just lying still in a chair and not moving at all and I know your body will kick in reserves to compensate. So anyway 12 hours into the test it plummeted pretty quick. I got to 33 and they stopped it. So does this mean I possibly don’t have insulinoma because they didn’t drop consistantly? Did this happen to anybody else? The waitning for results is killing me!
Lauren

Friday, 11th May 2007 at 11:49 am

Also I insisted the do a CT spiral scan, hao many of you found yours with this?
Homa

Friday, 11th May 2007 at 2:31 pm

Hi Lauren
I am glad to hear that you got your test done. I have never heard of blood sugar going up, but with insulinoma you never know. I wanted to ask you if you went to Mayo clinoc or not. I am trying to set up a time to go up there, I have to get my medical record from Duke before I could go though
Hope you get the result of your test son.

best of luck with your surgery Jane. I hope it all goes well.
Lauren

Friday, 11th May 2007 at 3:50 pm

THEY FOUND IT! THEY FOUND IT! My doctor just called me! I am the world’s happiest woman – to have found a tumor- Who’d have thought? Its 1.4 cm and it is in the head. They found it with the CT Spiral scan. Homa, I went to MD Anderson in Houston. They are more knowledgable than I expected and supposedly the surgeon they are assigning me to has done insulinoma surgeries before. I’m not sure how many but since they know the exact location I’m not as worried. His names is Evans. i’m going to celebrate now!!
Jane

Friday, 11th May 2007 at 4:02 pm

Dear Bev,
I had the fast in November. lasted far less than a day as the nurses were very worried about leaving me with such low blood sugar levels. Of course they had never heard of the test(neither had the doc on duty!)

I won’t go into details but because I saw so manyifferent people at clinics there was a lot of confusion about where things went next until I met one doctor who said they couldn’t deal with me there and referred me to a teaching hospital. It is here where I’m having the op on Monday. Had the MRI CT and EUS tests after the fasting test fairly quickly though.

Am looking forward to feeling better for the summer. Or is that wishful thinking?
Good to read about all your experiences.
Wish I’d found the site before.
Jane
Peggy

Saturday, 12th May 2007 at 1:00 am

I know I already sent this post but…

Yay Lauren!!

I’m so glad they found your tumor! I was hoping they’d find it on your first CT. Good thing you insisted they do it.
Your life is going to be so much different. :)

Bev,

Which test showed your tumor?
Peggy

Saturday, 12th May 2007 at 9:50 am

Sorry Bev,

I know you’re going for your test tomorrow. I meant to ask,

Jane,

which test showed your tumor?
Lauren

Saturday, 12th May 2007 at 11:25 am

Sorry Bev, I meant to ask Jane which test showed her tumor.
How did your fast go? I hope it was easir than mine was. After five hours the protocol was that I go from the clinic and a nurse that knew what she was doing to the hospital and a group of nurses that had no idea. It took them over an hour to check my sugar and get their act together.
Jane

Saturday, 12th May 2007 at 2:07 pm

Hello there Peggy,

I was first diagnosed within 48hours at my local hospital after being admitted unconscious.
They could tell because of the biochemical tests but the (new) consultant said I couldn’t have insulinoma because it was too rare!! Sent me to a see a neurologist………………..another story!
Months later I was sent back to the endocrinologists who sent me for an MRI scan which they felt showed a suspicion of a tumour. They put me on diozoxide whcih is unpleasant but better than constantly eating. Then they sent me for a CT which showed nothing to the people at my local hospital. At the teaching hospital they had a CD of the tests and said they could see 2 tumours!! YIKES! Finally had the EUS after which the doc said he could see only one in the head of the pancreas which was very near the bile duct.
Only hope now that there is a bed for me tomorrow.

Dear Bev,
Hope the test works for you!

Jane
ST

Sunday, 13th May 2007 at 6:49 am

Peggy,

My wife and I returned home about 3 weeks ago. She still has the drain connected. She is eating well, looking healthy with no infections and has been stable. The doctors hope that once the drain tapers off, there is a chance that she may even not require further surgery. The doctors/surgeons have been saying it will taper off for a month but the drain is not tapering off as it has held steady between 40-50 ml/day. They want to wait it out for a few more weeks before a decision can be made. Her mobility is greatly resricted and on some days she is a bit down as teh drain quantity is not going down at all. I am providing her encouragement and also we have been having a constant stream of friends/relations providing support/encouragement. Hoping and praying she recovers/heals well and avoids surgery. As some of the scenarios (if it does not heal) are not very pleasant, I have discussed with some of the surgeons in US who deal with those surgeries/transplants (can be very expensive too). I am not so sure when this ordeal will end for us.

As I returned to work after 3 months and given that I am a senior person in my company, I am literally drowned in my work. I did not have much time to browse this thread and also trying to balance my time with work/wife/kids.
Lauren

Tuesday, 15th May 2007 at 10:12 am

Hello all! My surgery has been scheduled for June 7 at MD Anderson in Houston, TX. I am excited beyond words that in three weeks I will no longer be a slave to food. I will be able to skip a meal! Hooray!!
Leila

Wednesday, 16th May 2007 at 5:05 pm

Hello! I hope some of you have thoroughly researched insulinoma diagnosis and treatment and have come to some conclusions as the to places to go for the best care. I have an 8 year old nephew who has all the symptoms of an insulinoma. Insulinoma is extremely rare in a child this age. He is in a children’s hospital in Atlanta. After the standard tests, it appeared to be in the vicinity of the hepatic vein, but after laparascopic surgery, the symptoms persist and are even a bit worse…a higher level of glucose has been needed. The doctors are questioning the diagnosis now. I am feeling very insecure with the professionals who are working with him, though I know they are doing their best. Can you recommend anything for us?
Please help. His mom is willing to travel with him.
Lauren

Thursday, 17th May 2007 at 3:12 pm

Leila, did they actually remove a tumor? I was a little confused by your post. Of all of the research I have done on this topic I know one thing: It is vital that you go to endo’s who are specifically experienced with insulinomas which is hard to do because they are so rare. I have been extremely happy with my team at MDAnderson in Houston. My endo there answers my e-mails within an hour and the surgeon she is referring me to is specifically a pancreatic surgeon and they have done insulinoma surgeries. I would question the team and ask them how many insulinomas have they diagosed and removed. He may have another tumor that they missed.
Leila

Thursday, 17th May 2007 at 5:13 pm

No tumor was removed as far as I know. We still have no results from the lab, and it has been almost a week. Since insulinomas are so rare in a child this age, they are suspecting that it may be something else. Perhaps beta cell neoplasia. I do want them to see someone more experienced. This doctor has done 4 surgeries for insulinoma.
Thank you for your input, Lauren.
Peggy

Friday, 18th May 2007 at 3:31 pm

ST,

I’m happy to hear your wife returned home and is doing well. I also am hoping and praying that she will heal well and avoid further surgery.
It must be hard for you, trying to balance your responsibilities, but it sounds like your priorities are in order. I’m sure your wife will pull through with such great support. Let her know we are pulling for her as well. It’s hard to understand why we have to go through such hard times. But.. that which does not kill us makes us stronger.

Keep the faith
Lauren

Tuesday, 22nd May 2007 at 9:17 am

Question: can anyone tell me the difference between pro-insulin and insulin levels?

I have a distinct tumor on the head of my pancreas however my insulin levels were not high they were “supressed” whatever that means. They averaged 5-6 I believe however my proinsulin levels were high(20. I am still scheduled for surgery however I’m a little worried that my actual insulin levels were not that high?
Linda

Wednesday, 23rd May 2007 at 8:56 pm

Hi everyone, I just found this site tonight I was just diagnosised with an insulinoma a couple of weeks ago and I’m going to see a specialist on June 18th. It’s been great reading the conversation on the site. I had tyroid cancer 2 years ago and I was attributing alot of my syptoms to a high thyroid level. Well, thinks kept getting worse and than the uncontrolled anger and the feeling that I was always looking through a cloud. I had a few episodes where I thought I was going to pass out than I’d wake up a night needed to eat. I knew something really wasn’t right. I get hand tremors and was concerned I might have MS because I have a brother that has MS. So I’m going to read more of what you all have to say and try to educate myself before I face surgery. My proinsulin level was 71. I’m hoping if I do face surgery it will be laproscopic.
Peggy

Wednesday, 23rd May 2007 at 9:41 pm

Leila,

Have you found out anything else about your nephew? He is so young to have to be going through this. I think given the choice, that I would be at the Mayo Clinic. What exactly did they do in surgery?

Lauren,
June 7th is right around the corner! I’m sure I don’t know anymore about insulin and proinsulin than you do, but if your insulin levels were supressed than does that mean that your tumor is non-functional? Not likely since your sugars are so low. I remember a doctor telling me that the tumors give out insulin in bursts, maybe…i don’t have a clue.
Did they do any other tests like the calcium stimulation to find out where the insulin is coming from? I guess they’ll know more when they take the tumor. I can imagine how uncomfortable you are with that. At least doing something is better than doing nothing. Just be sure you demand the best treatment Lauren. Speak up or have your husband. Please let me know if you find out anything else before you go in.
I’ll keep you in prayer
Lauren

Thursday, 24th May 2007 at 7:58 am

Thanks Peggy, I since found out that proinsulin is the precrusor to insulin (it turns into insulin) so if that was high then eventually my insulin would be high so everything is a go for my surgery. What about you? What is your current situation?
Peggy

Friday, 25th May 2007 at 2:56 pm

I wish I had something to tell you Lauren,
I do see another endocrinologist from USC on the 4th. I guess we’ll just go from there. In the meantime, I had to have the paramedics come out again last Saturday. Someday this will end, right?
Peggy

Tuesday, 29th May 2007 at 1:40 am

Hi Linda,

Have they actually found your insulinoma? Or have they only done the blood work so far? Your proinsulin sounds pretty high. I hope you have a good specialist. Keep in touch.

Peggy
Laura

Monday, 4th June 2007 at 1:26 pm

Hello All!

What a great idea this is! I have been looking all over the internet and this is by far the best information I have come accross. I had an unltrasound last Friday and finally got my official diagnosis of a tumor. I am meeting with a surgeon at the University of Chicago this Friday. Unfortunately, my tumor is located on the head of the pancreas so I doubt the surgery will be laproscopic, but at this point I will take any type of surgery that will give me my life back!

The thing I think is most “funny” about this disease is you tell people you are hypoglycemic and they always give you that yeah sure or whatever look. Even when I went in for my ultrasound on Friday, I had to fast before so of couse I was low. When I got to the hospital my meter said I was 43. They give me all this paperwork to sign and my husband kept telling them, her blood sugar is low, can we start an IV and then do this and they kept saying it was not a problem. Finally when they did check, I was 35 and they all freaked out. It’s like they assume you are lying or you don’t know what you are talking about. Has anyone else experienced that?
Laura

Monday, 4th June 2007 at 4:04 pm

Lauren- by the way, when my blood sugar is low, my insulin levels are also low which I guess is abnormal if you have a tumor. Even when they did my ultrasound, they were ruling out a tumor more than expecting to find one.
Aileen

Monday, 4th June 2007 at 4:15 pm

Laura,
I did experience some doubt at the beginning when I told my GP that I thought I
Aileen

Monday, 4th June 2007 at 4:25 pm

Ooops! Sent the message before I was ready…what I was going to say was that my GP initially doubted that my hypoglycemia was serious. I got the “well, you’re thin, so experiencing low blood sugar can be normal” talk. It wasn’t something that was jumped on right away. It took several months after that conversation before I insisted on a glucose test and came in at 35 mg/dL..after that, I was sent to a great endocrinologist who took the potential for insulinoma quite seriously. From what I understand, though, there are a few other disorders that can cause low blood sugar (for example, I was surprised to learn that diabetics can also experience lows) so you would think medical staff would respond with more immediate urgency…it just pays to be insistent, I guess. Good luck!!

And, Lauren, I remember that you are having your surgery this week, no?? I’ll be thinking about you and wish you the best of luck! I know you’ll do great!
Peggy

Monday, 4th June 2007 at 8:18 pm

Hi Laura,

Welcome to the club, I get that all the time. At least now there are a lot more professionals that understand than there use to be. Still, when I am asked to fast for some tests like blood work, I just say, yeah sure o.k! What’s funny, is when you try to explain your condition to someone you know and they say, “Oh yeah, I’m hypoglycemic too.”

So how long have you had to live with this before you were diagnosed? I’m not sure I know anyone else who has been diagnosed through an ultrasound… Maybe your tumor was big enough to find that way? I’ve had numerous MRI’s CT’s and endoscopy’s, to no avail. Maybe I’ll ask for a US.

Hopefully your surgery will happen soon. I’m glad you found us.

Lauren,

The endo I saw today said that my proinsulin was 94 when my glucose was at 32. That wasn’t the 72hr fast though, if that makes any difference. Other than that she just upped my proglycem to 200 mg 3 times a day. I can’t wait to see what my eyes look like in the morning now!

One more day!! Hang in there.

Aileen,

How are you feeling? Are you back to doing all the things you use to?
Linda

Monday, 4th June 2007 at 8:44 pm

Hi Peggy, I’ve only had the blood work done. I get very symptomatic with a blood sugar of 70 if it goes lower than that it’s I really get bad. I’m going to the Cleveland Clinic this month to see a specialist. I’ll let you know what happens. Thanks for responding. It’s nice to know others are going through the same thing. People that don’t have hypoglycemia as you know just think they know what you’re talking about but have never really experienced it. I’ve really been interested in how people have handled surgery. I’ll be in touch.
Homa

Tuesday, 5th June 2007 at 3:33 pm

Lauren
I wanted to wish you luck with your upcoming surgery. I also wanted to thank you for mentioning how they found your tumor. I had done regular CT at lwast three times and they did not find it. My endo is trying to find out if we could do spiral CT here. From what I have red, it is good in finding small tomors and it pinpoints them. I am hoping that if I can get that done, and they can find the tumor, I won’t have to go to Mayo clinic. I do not want to travel that far, I am sure you know how that is
I will keep you in my prayers. Good luck and keep us posted.

Aileen
How are you feeling? has the recoperation been hard?

Anie
Have not heard from you in a while. I hope you are feeling better and back to the way things used to be before insulinoma
Homa
Laura

Tuesday, 5th June 2007 at 8:24 pm

Peggy,
They did an MRI on me first that showed nothing. My blood work was inconclusive because even when my blood sugar was at 27, my insulin levels were low between 5-8 which is on the low side of the range. Being that they were running out of options, they did the ultrasound as a “rule out” and it showed up. My tumor is not big only 1cm x 1cm I believe, so it does work even if they are small. It is not a pleasant procedure, but worth it to get the diagnosis. You get knocked out and you get a tube down your throat. My doctor wanted me to have a glucose drip, but instead, they got my sugar way up before the procedure and checked me as soon as it was done so I was fine. I just read up above that you had an endoscopy, they called this an endoscopic ultracound so maybe it is the same thing?

As for how long I have had this, it is very strange. I had symptoms when I was nursing my second child which was 2005, then they stopped when I stopped nursing but I did get pregnant right away again. I had no symptoms while I was pregnant, but as soon as I started nursing my third child they came back, but this time they did not go away. My doctors think I have had this for a long time because I have hypoglycemic unawarenss which means I am not aware that I am low until it is too late. The first time I was at my doctor, she had me fast for the blood work (Again probably did not believe me, who knows?) So I had this whole appt with her, I was fine, I left her office went to starbucks and drove to work. I never felt my sugar go back up after eating at starbucks, I felt totally fine. The next day she called me to say that my sugar was 27! Can you imagine walking around and driving at 27 and being fine? It is crazy.
Laura

Tuesday, 5th June 2007 at 8:27 pm

Peggy-
One other thing to consider, a procedure like that is only as good as the techincian or doctor that does the procedure. I have a friend who was recently diagnosed with cancer. His original doctor told him they did not know what it is, but they know it is not cancer. His new doctor told him the scans he had done with the first doctor were useless because they were so blurry, he could not read them. He had the scan done again by the second doctor and got his diagnosis immediately. Just something to keep in mind, this is so rare, was your technician’s specialty this type of thing?
Angie

Wednesday, 6th June 2007 at 8:29 am

HI Homa

Im still here reading all the posts as they come in….

Ive been away for a week so had a few to catch up on!

The last time I wrote I was off for a scan to find out if there was anything wrong after my surgery – the good news was that they found nothing! the bad news they dismissed the pains I was having and sent me away! I had a few more pains so went back to my doctor who gave me antacid tablets and so far I have been ok!! I was annoyed with the hospital as my blood test done by the doctor indicated I had and infection but the hospital did not take any further tests ans I havent heard from them at all. Im due to see my medical consultant at the end of the month so Ill have a moan to him!!

Just a warning to everyone after surgery – dont catch a cold and cough! Ive got a stinking cold – sneezing and deep coughing is sooooo painful! Im walking around holding my stomach feeling like Im going to burst my scar, and my muscles really really hurt as Im coughing!!!

I suppose its good exercise for those muscles but oh dear!!!

Other than all that Im normal – well as normal as is possible for me!!! Its great not having to worry if I have a late breakfast or skip lunch while out shopping!! I do remember all the time what I was like so I am so glad to have had the surgery! I can actually lay on my side and have slept on my tummy once or twice. Sunbathing on holiday was tricky cos I kept getting stuck on my front and not being able to turn over easily!!! So four months now and it is still difficult to roll over!!!!! Oh yes the sunbed back fell back while I was leaning on it and OH MY GOD did it hurt! people around the pool must have wondered what the fuss was about!!

Reading Lauras post above, I could never tell how low i was getting or how my sugar levels rose after eating. Luckily i knew in time at a certain level but even then that wasnt consistent. I couldnt tell sometimes if I was going to be 4, 3 or 2.5! Sometimes I felt like I was really low but wasnt!

Peggy – it did make me laugh when people would say ” oh Im like that” or “Thats what happens to me” in fact I had one person say that her friend had exactly what symptoms I had!
In fact one of my so called friends played down my condition to other people when we found out about it and told another friend it was nothing!! Good friend hey!!

Enough from me!!

Bev – What happened during your 72 hr fast?

Good luck everyone whatever stage you are at!!
Aileen

Wednesday, 6th June 2007 at 12:20 pm

Peggy and Homa,

Thanks for asking about the recuperation. I have been doing really well, thankfully. Due to the incision being so small, I haven’t been experiencing much abdominal pain. Probably the last time I felt pain when I sneezed, for example, was about 4 weeks after surgery (which was on April 19). My sugars have returned to normal (I came out at 78 after fasting all night) and I have started biking and running again. The one thing I have been really, really careful with is heavy lifting…I think even a few weeks ago I lifted something around 10 lbs (the surgeon recommended nothing above 20) and I felt a lasting pain in my side. And I started ovulating again, which hasn’t happened in a while. My endo is convinced that the heavy insulin load may have interrupted my normal hormonal flow. So, in the end, I couldn’t have asked for more…I feel extremely lucky to have made it to this point in one piece.
Bev

Wednesday, 6th June 2007 at 1:12 pm

Well it took the whole 72 hours to drop my sugars over night each time they plumitted quit significantly so they say??? They also sent me for 2 chest x-rays because he thought he had seen something on it so who knows. I only went down as low as 2.5 mmols I think thats about 45 in America. So until I get my results wich my consultant said can take weeks I do not know what is going on.

I think my con does not think it’s a insulinoma but he wont know until the results. He is conscerned about my sugar drop over night. Will keep you updated.

Hi EVERYONE…..B
Lauren Hatten

Wednesday, 6th June 2007 at 2:55 pm

Hey everybody its nice to hear from you again! I am in the hospital(MDAnderson)right now on a glucose drip, my surgery is tomorrow morning. Its on the head and bigger than I realized, I got to see my CT scan. My surgeon has told me that he will be grafting a piece of my colon to close the hole in my pancreas after the tumor is removed because one of the biggest risks w/ this surgery is that the digestive enzymes of the pancreas can leak.
My surgeon (Doug Evans) seems to be the authority here at this hospital and after speaking with him I’m sure I’m in good hands. They are flabbergasted that I have lived this long with this. He also said that some people with insulinoma do have higher proinsulin than insulin. I will write back as soon as I am able to after the surgery.

One other thing my incision will be straight down the middle of my stomach from my rib cage to about 2 inches below my belly button. Has anybody else had a vertical incision?

Lauren
Karen

Wednesday, 6th June 2007 at 6:48 pm

Hello, I just found your website and i also have insulomia…i would like a list of all the symtoms everyone has….i had to keep telling the doctor i had this but they all said no you don’t have it…but i do…they found a tumor…its really hard to explain what you have when you don’t really understand it…i have alot of symtoms..but just want to find out what everyone has….thanks for your time…i thought i was going crazy….but now i know….take care and hope your well…karen
Gayle

Wednesday, 6th June 2007 at 9:57 pm

I was finally diagnosed on the 5th with an insulinoma. I’ve had symptoms for over 5 years. For the first 3 years my gyno told me it was stress causing my symptoms. Finally two years ago my GP diagnosed me with hypoglycemia. The symptoms have become increasingly worse over the last couple of years. I ended up in the ER one day a few months back after nearly passing out at work. My GP then referred me to an Endocrinologist. The Endo had me fast for as long as I could at home and then have my husband drive me to the hospital lab to have blood drawn. This test got his attention since my glucose level was 50. He then set me up for the hospital fast. I lasted about 16 hours during the 72 hour fast. I also found that it took the nurses in the hospital a while to understand that my blood sugar would drop quickly once it started. Even the doctor thought I would last a couple of days. My level during this fast was 37. Besides the fast, I had 2 CT’s, a MRI which all showed nothing. Finally I had a endoscopic ultrasound this week which found the tumor. It is 1.5 cm and located on the lower part of the neck. It is on the outside but slightly embedded. I’m waiting on the final pathology reports but the doctor who did the ultrasound feels the tumor is benign. I’m hoping that the tumor can be removed by enucleation but won’t know for sure until I see by doctor in a couple of weeks. Does anyone have any idea as to what type of surgery I may be facing?
Laura

Thursday, 7th June 2007 at 12:54 pm

Karen
For me the only symptom was hypoglycemia. My blood sugars were between 27-40 every time I was checked by a doctor. Mu “72 hour fast” lasted until 10am the first day! I woke as a 54, was 45 when I got to his office, and was 32 an hour later. Good luck!

Lauren
I have not heard of vertical incisions, but I would guess it has something to do with the colon graf? Very strange and I wish you lots of luck with your surgery!!

Aileen
Great news on your recovery, I can’t wait to get there myself!!

Everyone
Going back to what we talked about before, today it came up with 2 different people that I have hypoglycemia, and both of them responded “me too”! I guess I am starting to understand why medical professionals don’t believe you when you tell them you are hypoglycemic!
Laura

Friday, 8th June 2007 at 3:02 pm

Welcome Susan,
I met with my surgeon this morning and it sounds like you and I have almost the same thing. Mine is a bit smaller, but a similar location. What my surgeon said is I have a 1/3 chance to have an enucleation which he says is 4 days minimum in the hospital with 4 week recovery at home. 1/3 chance of a partial pancreanectimy (sp?) which he says would be 6 days minimum in the hospital, but still about 4 weeks recovery at home, and a 1/3 chance of a Whipple which would be 9 days minimum in the hospital with 6-8 week recovery at home. I hope this helps!

Lauren,
My surgeon is doing a vertical incision as well so you are not alone! He said pretty much breast bone to pelvic bone, sounds attractive! I hope you are doing well after your surgery! I look forward to hearing how you are doing.

Everyone,
Something interesting, my surgeon’s name is Dr. Matthews at the University of Chicago hospital. He told me that unless I have a Whipple, I will not have any drains at all coming out of surgery. He said they are finding that they do more harm than good as they can lead to infection. If I require a drain after surgery, the radiologist can most likely place it without surgery. He said this is new theory and practice, but you should definately ask your doctors about it!!
Gayle

Friday, 8th June 2007 at 8:16 pm

Laura
Thanks for the information. My surgeon is at the University of Iowa Hospital so we are midwest neighbors! He will be doing a vertical incision as well. He did tell me before the insulinoma was found that he usually doesn’t do laparoscopic surgery but we would talk about it if it was found in the right place. I’m hoping it’s in the right place! I have an appointment with my surgeon on the 18th so I have to wait until then to find out more. I will ask about the drain after surgery. Hopefully this new practice is being done here too.

The thing that worries me the most about all of this is not knowing for sure what kind of surgery I’ll have until it’s over. A Whipple scares me to death. My surgery is scheduled for July 10. When will you be having yours?
Laura

Sunday, 10th June 2007 at 2:22 pm

susan,
June 27th for me. Good luck!
Tim

Monday, 11th June 2007 at 2:59 pm

My dog has insulinoma – want to use the drug Proglycem (Diazoxide) cannot find a pharmacy that carries the Capsule form – can anyone tell me where my vet can get the drug ?

Online I can find it on websites in Canada – no where in the US..
HELP
Peggy

Tuesday, 12th June 2007 at 9:16 pm

Hey, a vertical incision sounds better to me than the alternative.
Thanks for the info on the drain Laura, that’s something I was not looking forward to. Sounds like you’re next in line for surgery?
Who remembers their proinsulin level compared to glucose? Mine was 94 with a glucose of 32. That sounds high enough to me to assume an insulinoma. Now if they would just FIND IT!
Karen, feeling like I was going crazy was always my biggest symptom.
Tim, bummer for your dog! Can’t you just put the liquid form of proglycem in a capsual if that’s the only way your dog can take it? I just picked up mine today and the pharmacist said it was a 3700 dollar perscription! Do you have doggy insurance?
Laura

Wednesday, 13th June 2007 at 9:11 am

Peggy,
I do not see any proinsulin levels in all my blood work. I have insulin though:
Insulin 8.9, glucose 27
Insulin 11.3, glucose 51
Insulin 13.4, glucose 34
Insulin 6.1, glucose 32
Hope this helps!
Tim

Wednesday, 13th June 2007 at 5:00 pm

You can buy the capsule form in Canada for 160.00 for 100 – 100mg tablets….the diasease in my dog caused the back legs to get weak and fail. Today I had to put her down. It progresses extremely fast in dogs. Good luck to all..
Peggy

Wednesday, 13th June 2007 at 5:47 pm

Tim,

So sorry about your dog! :(
How common is that disease in dogs? It must progress a lot diferently in them, I’ve had this disease for 15 years!
Thank you for the info on Proglycem, I would much rather take that form. I will ask my doctor about it.
What kind of dog was he?
Angie

Thursday, 14th June 2007 at 3:24 am

Peggy

Just to let you know I think its fairly common in dogs and ferrets – I know because before this site was up and running all I could find was info for dogs and ferrets – hence my very first comment!! I was so grateful to find this for real humans! It became a running joke with a few friends that I could be put in the same class!

Tim

So sorry to hear about your dog!

Susan

Dont worry too much about the drains – in the whole scheme of things they really are just another tube! Believe me I had tubes coming out of everywhere to start with and to be honest my catheter was the worst! At least by having a drain you know what is leaking or not!

It is 4 months since my op now and really only now beginning to forget about it occaisionally, suddenly you think oh yes that didnt hurt or Oh Ive done that without thinking! My system is still quite low as Im having trouble shaking off a cold at the moment. Dont be worried if it takes longer than your doctors visualise to come out of hospital or ‘recover’.

Good luck to those having surgery and best wishes to those recovering!

Angie (still here)

Good luck to all having surgery and those recovering!

angie
Gayle

Thursday, 14th June 2007 at 5:50 am

The past several months I have been increasingly unorganized and a bit lazy. Please tell me these are also symptoms and they will go away after surgery!
Angie

Thursday, 14th June 2007 at 6:34 am

Susan

Surgery cant work that many miracles!!!

Seriously – I think thats the condition getting on top of you! When you feel better you will probably cope better. I had begun to think I was getting depression before they found out what what happening and I do feel more positive and energetic after surgery! Housework is still last on my favourites list tho!

Angie
post surgery, missed breakfast – ha no problem!!!
Leslie

Thursday, 14th June 2007 at 9:24 am

Hi,
I am looking for answers for my Mom. She was diagnosed with insulinoma about 7 years ago. Since then her husband has died (of natural causes) and she is living alone. She has a 8 – 5 job and seemingly manages relatively ok by eating all the time. She is 66 years old now. My concern is that because she lives alone she has no one around to notice if she is having an episode. She can usually tell when her sugar is dropping but has had a few episodes that have gotten out of hand. The morning after her husband died I had to call the EMTs because I couldnt wake her. When they tested her sugar she was below 10. Last night she had another major episode although I am not sure what brought it on (she ate regularly) but had my brother not been visiting her and called me when she became extremely disoriented and unable to focus her eyes I wouldnt have known and she wouldnt have been able to help herself. Her proposed solution is that I call her twice a day to check on her.

I want her to have surgery because her quality of life is worse than it should be. She is totally ruled by her diet – when to eat, what to eat… She is not monitoring her blood sugar or taking medication for this. She does have a bi-annual visit with her endocrinologist to make sure the tumor hasnt grown (it hasnt). I am concerned that if she waits much longer she might not be a candidate as her health might decline, etc.

She is convinced that the survival rate of the surgery is extremely low (based on my research that isnt true)and that only one or two hospitals in the country offer the surgery (i.e., the Mayo Clinic). We live in Alabama and I dont feel that any local hospitals are equipped for this type of surgery. I was wondering if anyone that has had the surgery has any statistics on their hospitals or surgeons (number of surgeries, successes, etc.). Thank you so much for any assistance you can provide.

Leslie
Lauren Hatten

Thursday, 14th June 2007 at 10:18 am

Hello everyone I had my surgery on Thurs and am now 7 days post op. Everything went well. My tumor was 1.9 cm on the head and I now have an incision from my breast plate to about 2 inches below my belly button. I can’t say the whole experience was pleasant but it was so totally worth it because my blood sugar has been WONDERDERFUL! It was on the high side Post op it got up to 191 but then it stabilized and has been between 85 and 140 24/7 so I am thrilled!It is an unbelievable feeling not to be a slave to your sugars!
Lauren
Peggy

Thursday, 14th June 2007 at 11:04 am

Susan,

Definitely symptoms! I use to be quite organized…not anymore. That’s one of the first things I noticed to change. I also could not plan and had no creativity, previously my favorite things to do. I also couldn’t do anything alone, like get myself to go for a walk. This all came with a bout of depression which I have never experienced before. That was at the beginning and lasted 9 months. Things are a little better now, with the duration of the disease I guess. Except for the organization which has gotten worse. I’m planning to leave for Yosemite in 5 days, and I’m having the hardast time just trying to make out a list. My guess is you are not a lazy person.

I’ve had this disease for so long, my fear is that I have gotten use to being the way I am now, and that I won’t change back, when and if I ever get this taken care of.

Hopefully your surgery will be soon and this will all be behind you.

Angie,

I remember your first comment about ferrets! Yours was the only comment on here when I found this sight. You are such a positive person, I really enjoy hearing from you. I’m glad that you are at the point where you can start to forget about the surgery. Take care.
Laura

Thursday, 14th June 2007 at 11:21 am

Lauren, sorry if this is a duplicate, but I tried to post this message and it is not showing up for some reason!

What kind of operation did you have? Are you still in the hospital? How is your recovery going? Better or worse than expected? Did you have drains? I am getting very anxious about my surgery so more info the better! Thanks and I am glad you are doing so well!

Laura
Peggy

Thursday, 14th June 2007 at 11:32 am

Congratulations Lauren!!

How do you feel right now? Are they giving you decent meds? I remember a couple people saying they had tremendous pain when they first woke up. Hopefully yours was under control. Are you up and moving much? And when do you get to be home with your family? Things are going to be so different. I think you’re the only one who has had it as long as I. You’ve given me hope. :)
Tim

Thursday, 14th June 2007 at 12:47 pm

My dog was a Vizla mixed with Yellow lab..Its is very common in Ferrets, not so much in dogs. My vet said this was the 2nd case she has seen in 15 years. Very hard to diagnos, then its to late. Its sounds like it is very treatable in humans – thank god for that..
Gayle

Thursday, 14th June 2007 at 5:55 pm

Angie & Peggy,
Thanks for describing exactly how I’ve been feeling for quite a while. I used to love to work in my flower gardens. I bought one flat of annuals 3 weeks ago and still don’t have them all planted. I seem to have a hard time finishing most things that I start. I too leave for vacation in a week and am having a hard time writing an organized list. My office at work is a mess and I have a million projects started but not finished. I have also had what I think are bouts of depression. I am so ready to be my old energetic self again. I am a person that has always hated clutter. These days I see clutter all over my house. It drives me nuts but I don’t have the ambition to do anything about it.

After reading all of the above posts I am really looking forward to having this surgery next month. I found out today that my surgeon is going to attempt to remove the lesion laparoscopically. He isn’t promising that I won’t wake up to find out he had to do open surgery but he is willing to try removing it laparoscopically. I had my ovaries removed a couple of months this way and it was a piece of cake.

This message board is great and I wish I would have found it earlier.Thanks to everyone!
Gayle

Saturday, 16th June 2007 at 3:45 pm

Lauren,
My levels are as follows:
proinsulin – 61
c-peptide -1.5 ng/ml and 495 pmol/L
insulin – 11
beta-hydroxybutyrate – .7
glucose – 37
Lauren

Saturday, 16th June 2007 at 6:03 pm

Peggy, Laura, Susan,
I am recovering just fine. My surgery was not laproscopic. I am cut strght down the middle of my stomach. Honestly, the incision was really not that painful. The drugs take care of that. The most painful thing was the gas. I guess its trapped air from when you are open and they are moving things around. The gas was extremley painful and gas-x and pain med don’t do anything for it, you just have to wait and walk it out. My dad made me get out of bed the 3rd day after the surgery and start walking and it really helped with my recovery.

I was is the hospital exactly a week. I did not have a drain but I think I should have because the day after the surgery my abdomen filled up with so much fluid I looked like I was carring twins. The put a tube down my nose into my stomach to drain the air and gas. I had that in for 3 days. It wasn’t as bad as it sounds. I never asked why they didn’t give me drains.

The best news of all is my blood sugars, it is truely miraculous I can go as long as I want to without eating. My blood sugars have been in the 90-100 range. It feels so good I can’t wait to get my body healed and get back in shape! The surgery is SO totally worth it!

Lauren
Laura

Tuesday, 19th June 2007 at 1:29 pm

Leslie,
I have done a ton of research on the surgery and have seen nothing that would discourage me from having the surgery. The risks seem very minimal to me vs. the quality of life that you can achieve. As for what hospitals do it, there very well may be one in your area. Mayo is ranked #1 in the country. Check out this link for other well ranked hospitals:
http://health.usnews.com/usnews/health/best-hospitals/rankings/specihqendo.htm
You need to find a surgeon who has done a lot of these is the key. The pancreas is difficult to operate on, but hopefully after meeting with a surgeon, your mom will come to the same conclusion. Good luck!

Laura
Susan

Tuesday, 19th June 2007 at 7:16 pm

I met with my surgeon yesterday for the last time before my surgery in July. He is an oncology and endocrine surgeon at the University of Iowa Hospital. He feels I have a 50% chance of having the insulinoma removed laparoscopically and only 2% chance of needing a major resection such as a Whipple. This hospital only sees 2-3 insulinomas a year which is my concern. He has extensive pancreatic surgery experience but not a lot of insulinoma experience. He seems like a very knowledgeable doctor and I am very impressed with him but I’m wondering if the lack of insulinoma surgeries should make me look elsewhere. Please let me know your thoughts.
thanks
Homa

Tuesday, 19th June 2007 at 7:49 pm

Susan
That is great that you are going to have your surgery done soon. I bet you can not wait to get it over with. As for being concerned about your doctor not havintg that much experience with insulinoma. I don’t think you need to worry about it. Since insulinoma is so rare, it is hard to find a hospital that deals with that many cases. The only exception that I have seen has been Mayo clinic. But if your doctor has done this before and the operations that he has done have been successful I would not worry about it. it is important to have a trust in the person who is going to do the operation. That is the main thing. when is your surgery in July? Best of luck

Lauren
So good to hear that you are back at home and recovering. Where was the tumor at? and how big was it? I had the vertical insision done to me too. At first it looked kind of rough, but with time it started to look better. it has been almost ten month since my surgery and it is healing pretty good. I went and got my spiral CT done today. I sure hope they can find it. Wishing you a speedy recovery.

Everyone
As I mentioned I went and got my CT done today. What a fun thing to do for a birthday, lol. I am sure many of you can identify with how frustrating it is to go and get any kind of test done when you have to fast. a simple test turns into such a big ordeal. I only had to fast for four hours. I ate a big breakfast at eight thirty and they said I could drink apple juice if I needed to. but by the time I got to the doctor and got the test done and ate something it was two PM. As soon as I started eating. i felt cold and shaky. I guess my sugar had dropped down and I did nto know it. I have gone through all of this before and not looking forward to go at it again. I think i am the only preson here so far that has had an unsucccessful surgery for insulinoma. When i looked it up on the internet I found out that only between three to five percent of the cases go through a second procedure. Has anyone else gone through this b

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Insulinoma & Whipple triad – Surgery (update)

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