Insulinoma & Whipple triad – Surgery (update)

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 smaller than 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.

Insulinoma

1,718 thoughts on “Insulinoma & Whipple triad – Surgery (update)”

  1. Thanks for your interest Sue.These are results for my partner. His tests were done in England so units may differ from American units.
    Cortisol
    8am -3.9NHOL/L , 12 mid day – 2.3, 4pm – 2.2, midnight – less than o.33

    Salivary DHES-s
    8am -26.9, mid day – 12.6, 4pm -16.6, mid night – 10.0
    If these mean anything to anyone please help.

  2. The harmone tests were done when my sugar level was 2.7 mmol/L, CPeptide 837 pmol/L and Insulin 8.8 mlU/L

  3. They have run further tests on me, I am slightly concerned by the results

    1) I’ve got very low Growth Harmone Levels, quick googling seems to suggest pitutory tumors cause low GH levels
    Growth Harmone 1.8 ug/L, should be greater than 6 ug/L
    Insulin-like Growth Factor 1 – 167 ug/L, this seems to fall within normal range

    2) I have a lot of lipomas

    – Could this mean MEN1 ? usually in MEN1 excess harmones are produced by tumors in multiple endochrine glands isn’t it as opposed to lowering the harmone levels ?

    3) MRI scans have made note of significant focal steatosis throught the right liver

    I don’t drink at all, one of the causes of steatosis in liver is prodcution of excess insulin locally in the liver, this could mean insulinoma metastases in the liver (the CT/MRI scans haAve not detected a tumor in the liver as such)

    I am really worried about this, but can’t talk to anybody as my surgeon is on annual leave and isn’t back until early July, anybody have any ideas ? appreciate the help

    Regards
    Rudy

  4. They have run further tests on me, I am slightly concerned by the results

    1) I’ve got very low Growth Harmone Levels, quick googling seems to suggest pitutory tumors cause low GH levels
    Growth Harmone 1.8 ug/L, should be greater than 6 ug/L
    Insulin-like Growth Factor 1 – 167 ug/L, this seems to fall within normal range

    2) I have a lot of lipomas

    – Could this mean MEN1 ? usually in MEN1 excess harmones are produced by tumors in multiple endochrine glands isn’t it as opposed to lowering the harmone levels ?

    3) MRI scans have made note of significant focal steatosis throught the right liver

    I don’t drink at all, one of the causes of steatosis in liver is prodcution of excess insulin locally in the liver, this could mean insulinoma metastases in the liver (the CT/MRI scans have not detected a tumor in the liver as such)

    I am really worried about this, but can’t talk to anybody as my surgeon is on annual leave and isn’t back until early July, anybody have any ideas ? appreciate the help

    Regards
    Rudy

  5. Hi Anne,

    I’m pretty sure a high DHEA-S can mean an adrenal tumor(benign), as I’ve had that looked at before.

    Low cortisol would not mean an adrenal tumor. Low cortisol would mean Addison’s disease, either primary because the adrenals fail to put out cortisol, or secondary, because the pituitary fails to stimulate the adrenal glands to make cortisol.

    Would you mind sharing your lab results? I am curious what your numbers are.

  6. Does high Dhea and low cortisol levels indicate an adrenal tumour. If not does anyone have any idea what it might mean?

  7. Thanks, Laura.

    Yes, I bought one a year ago, and mostly test when I feel low. Everytime I am 60 or under. This morning I didn’t have symptoms until I was 50, but the lowest I’ve gotten is 39.

    My fasting average is fine in the low 80s, and then I will go up in the 110s(average), and then by 2 hours after breakfast, I am in the 60s or 50s. That is just eating an average breakfast, like cereal(non sugar) and milk.

    Today I had my usual iced tea(lightly sweetened) at 8 am, oatmeal(no sugar) with 5 fresh cherries at 9 am, a handful of pistachios at 10 am, and at 11 am I was shaky and hot with a glucose of 50.

    I try to eat healthy, decent food in case I am swinging due to excess sugar, but I still get into trouble. I pay for my own testing supplies. I have tested enough over the last year to know exactly what my body is doing.

    I ask about the glucose tolerance test because my sugar went up in the 180s, but so did my insulin. When I crashed into the 50s at 2 1/2 hours, my insulin was still in the 30s. I know that in the FASTING state, that high of an insulin with that low of a glucose would be diagnostic of an insulinoma. But does anyone know about the postprandial state???

  8. Sue, do you have a blood glucose monitor? I recommend you get one and chart your sugars. write it down when you wake up and every time before you eat, and then an hour after you eat. After a couple of weeks, you will have good info to show your endo. My biggest issue for this was I was using so many strips that my insurance was complainnig about paying for them, but they did eventually. It does not go on forever, just a couple weeks. After you are done with your chart, you can still use it to check yourself before you drive or do anything dangerous to make sure you are ok. good luck!

  9. Hi. I haven’t posted since February. I had my 72-hour fast in January and my glucose never dropped below 62. So, that was that. I have since cleaned up my diet and eat hardly no simple sugars, but lots of protein and veggies, and just now adding in fruits.

    I had been diagnosed 20 years ago with reactive hypo. In the last year now my sugar has been dropping really bad.

    I have been relooking at an insulinoma, and in some medical journals have found articles on some patients with an insulinoma that don’t drop during fasting but DO drop after glucose ingestion, such as a glucose tolerance test. These patients surgically had their tumors removed and all was well.

    My question is, has anyone here had a glucose tolerance test initially, and what was your glucose and insulin pattern during that test?

    I am so lost!

  10. Nicolai,

    I had surgery for my insulinoma last July and am really glad it is over. Like you my symptoms were fairly mild compared to what I have read about – I never fainted or had epileptic spells – I just had to eat a lot to control the symptoms and get up in the night and eat and gained a lot of weight because of that eating.

    I had considered not having surgery if it was in the head, but luckily mine insulinoma was in the tail. The surgery went well and I recovered after about a month. I can still feel the scar and the muscles in my stomach are still weak.

    I just wanted to let you know that I understand your concern about whether to have surgery and though I am glad I had mine, I don’t think it is necesarily the best thing for everyone. Remember there is the possiblility of trying medication, though it isn’t supposiblily all the great. And who knows maybe they will improve the procedure and if it gets worse you can have it then.

    I wish you best in your decision making. It is a big decision.

  11. Mel,
    It is go good to hear from you! Congratulations on being on the “other side” of having an insulinoma. I hope you are dong well at home and have a speeding recovery. Glad to hear everything went so well. Keep in touch.
    Tatia

  12. Nicolai,

    Our surgeon said that the dreaded Whipple is usually the worst case scenario, and they will do everything to avoid it if they can. He warned us that if the tumour is in the head, it is always a possibility, but that is not their aim because of the serious side effects, so talk about it with your surgeon, but he won’t be able to give you any guarantees. They can only work with what they see when they are already inside you.

    The thing we found was that the symptoms of insulinoma progress from moderate to severe in a relatively short time and once you are having noticeable problems you are already heading for trouble. Delaying for too long may put you in a situation you cannot control and cause other risks – like traffic accidents or collapsing in a place you are not safe. This is not a self-limiting illness – it gets worse over time, so be prepared that it will come to surgery sooner or later, and you will be glad to get it behind you.

    Mel!
    Welcome back to the land of the living! 7 days of hospital isn’t too bad, and if you are already managing at home (hopefully with help) you are 90% there. Don’t push it – surgery is hard work, but you are doing well. Your kids will be so relieved.

    Heidi

  13. Hi all,

    Mel, I am so glad to hear that your surgery went well and that you didn’t need a Whipple! Sounds like you got lucky there – good thing you had a qualified surgeon. 7 days in hospital sounds like things generally went quite well. I hope that you have a continued good recovery, and will never have to deal with low blood sugar again.

    As for myself, my insulinoma was finally found during an intra-arterial calcium stimulation test. It turns out it is in the head of the pancreas, and not in the tail, which my doctors had been telling me for the better part of a year (due to an initial endoscopic ultrasound). So now I am also terrified of the dreaded Whipple. Still waiting on the final word from the surgeon I want, but the location doesn’t sound too promising. Since my symptoms are relatively mild compared to other “insulinomiacs” (but still very annoying) I am considering not doing the surgery if a Whipple is needed – we shall see.

    Good luck to everyone.

    Nicolai

  14. Hi everyone,

    Well i am back at home and recovering well following my surgery. They found my insulinoma in the head of the pancreas, and thankfully could remove it without a Whipple – although the Dr said that it was very close. He also had to do a liver resection, where he removed 10% of my liver as he felt another small mass under the surface of liver. Thankfully, the pathology has given me the all clear, and the lump in my liver was unrelated to the insulinoma.
    Surgery went for about 4 hrs, and i had 7 days in hospital. My scar is about 20cm long and looks very neat.
    Thank you all for your kind support and well wishes.

    Mel

  15. Mel, when you read this you will be through the surgery and starting on your road to recovery. Each day the pain will get less and you will get stronger. Even through the recovery the most exciting will be no more low blood sugar crashes. It is over and you now have your life back. Rest and recover and let us hear how you are doing. I am a year and 1/2 from my surgery and was just marveling on the difference today. All the best.

  16. Mel, I wish you all the best in your surgery and recovery. As you will see from these posts, most of the insulinomiacs recover quite well and have few complications.

    Because you are an active participant in your medical system, you may have a small advantage, since they got you in for your testing quickly and the time from diagnosis to surgery seems quite short to me. You will have a good support system there. Many of the sufferers have waited much longer to get to the people who could help them.

    My family’s story was not the easy route, but we still felt that we were well cared for, and got good help. It was just a fluke things went off the rails and we had such a struggle to get back on. The best I can tell you is that your kids will be very glad when they are able to see that you are getting better, and there is virtually no chance this could happen again.

    Once you are able, do let us know how you are getting on with things. We like to celebrate every successful conclusion here!

    Heidi

  17. Mel,
    I wish you all the best! I will be thinking of you in the next few days and weeks. Please let us know how you are doing. Can’t wait to read a post from the “new” and improved Mel.

  18. Hi everyone!

    Thank you all so much for taking the time to respond! Your feedback and comments have really helped me, both with addressing this with my kids, and with me understanding this illness and the the surgery and recovery process. I realise that it is different for everybody, but at least i know what to expect!

    The time has crept up on me, and i am being admitted tomorrow morning for my surgery. I have been really busy trying to get everything organised with the kids and their activities (trying to keep things as normal as possible for them whilst i’m out of action).

    I’m feeling a bit anxious and scared, but looking forward to getting on with my life as a healthy, happy and insulinoma free mum.

    Again thank you to all, for sharing your stories

    Mel

  19. Thanks Jane,

    No, this isn’t about insulinoma, but it was a key factor in our son’s problems coming to a crisis point while we were going through the ‘cure’, and so I consider it a major component of where we are today. Anyway, since it is off topic, I am at hshearman@shaw.ca. for a private chat on the topic of our kids.

    I had just wanted to let folks here know how insulinoma recovery is a family problem and your kids are involved whether you have direct conversations about it or not. The kids know that things are not right in the family and they often have serious fears that the parent who is ill is going to die – hey – I thought he was possibly going to die too! I wish we had been more aware of it, because of our son’s underlying mental health issues. I recently had some surgery to correct a non-life threatening problem and our boy was instantly stressed out – he cannot deal with his parents being in hospital!

    So, Parents talk to your kids about what is happening – they are already worried about you!

    Heidi

  20. Heidi,

    Hi again! Here we call DCD by the term dyspraxia which does cause such a range of difficulites that sometimes, unless you know what you are looking for, you would overlook it or mix it up with some other difficulties. Or else it can exist at the same time as other specific difficulties (It is called co-morbidity: a horrible word!) I have children with severe to mild DCD; it is not an easy haul. But interesting! Should you wish to exchange email addresses I am happy to chat via email. You don’t have to feel on your own. As I’ve said before, I’ve been to Prince George albeit decades ago but live in the UK.
    Very good luck,

    Jane

    OK, I know this isn’t about insulinoma…………..

  22. Hi Jane,

    Our son was suspected to have Asperger’s, as he has some of the symptoms, but ultimately, it was determined that he does not. He did get a diagnosis of Developmental Co-ordination disorder which is a learning disability that involves extremely poor motor skills and other challenges. Because he is very smart (as many with this disorder are), he masked the problem with his verbal output until he hit high school. He has poor muscle control over his whole body, can’t tie shoes, trips over his own feet, falls down stairs easily etc. which is just weird for a hulking big boy of 6 ft and well over 200 lbs. who can discuss politics and history so well.

    The anxiety was developing as he struggled with the transition to high school – particularly in keeping up with the written workload and the death of his grandmother and subsequent illness of dad, pushed him over the edge completely. The final diagnosis of his anxiety, depression and learning disability didn’t get confirmed until June of 09 when he was already 16. Do I wish we had known this much earlier – absolutely. We know he was subtlely different than most of his peers, just know how much and what the effects would be.

    The important thing is, no matter what the label is, we have to look after each other!

    Thanks for your kind thoughts. Man is parenting hard work with two healthy parents, never mind when people are not well.

    Heidi

  23. Heidi
    Am I recalling correctly that your son was diagnosed with Asperger’s Syndrome? If so, then this condition will quite possibly explain a great deal about the anxious personality………..
    Like you say, you could not have done things very differently. We all have to play the hand we are dealt with.
    Good luck with it all.
    Jane

  24. Hi Everyone,

    I am still checking in periodically and just wanted to comment that when my hubby Mike was sick with his insulinoma, our teenaged son was already well aware that his dad was not in good shape, however, he had a very bad reaction to the surgery itself, as Mike had serious complications and delayed his return home to Prince George from the hospital in Vancouver by 3 weeks. He was home for 5 days before our family doctor admitted him back to our local hospital and he stayed for another 4 weeks to be treated for a serious complication of his surgery.

    This process was devastating for our son, as it turned out he was already well into developing a serious case of anxiety and depression. Between the death of my mom the year before Mike got sick and the challenges of being a teen, our son got a bit lost in the shuffle of Mike’s health. He was so worried about his dad (much more than we were really aware of because he didn’t really say much) his mental health really suffered. We have gotten him help and the psychiatrist says he suffered a series of catastrophic stresses at a critical time in his life and this may never go away even with long term treatment. (and doesn’t that make my heart ache!) Our boy has always been seemingly mature and very smart and we were probably lulled into thinking he was coping much better than he was in reality. In hindsight I am still not sure what we could have done much differently other than talked more about all our fears (I was very scared MIke would die too).

    I would tell you though, kids know when things are not right and all of you with children cannot hide the effects of your insulinoma illness or the surgery from them. If they are very young, they may not have known the ‘original’ parent, just the sick one, but older kids will already know you are different than before – our son certainly did. We just couldn’t put a name or explanation to it until Mike finally collapsed and was finally diagnosed.

    I might suggest that you seek some counselling for your kids to talk about their fears. I wish I had the foresight to do this for our boy. I have since learned that kids entering their teens and puberty are highly suceptible to developing anxiety and the health of a parent is a very important factor to consider. Our boy is functional today but has ended up a year behind in school, and he continues to need counselling and care to deal with his anxiety disorder.

    Good Luck! We are now a year past Mike’s surgery and he is physically well and as returned to his job as a teacher. I would note however, he has not bounced back emotionally as well as he did physically. He is still more withdrawn and isolated than he was and I wonder if he is depressed too.

    Heidi

  25. I had an epidural put in before surgery and I would highly recommend it. I hated to see it go! It was left in for several days after the Whipple, and then I was on a pain pump. After getting out of the hospital I took pain meds for a couple of days but was too constipated ( hate to be so graphic) so I went over to Tylenol.

    My one year anniversery comes up June 11th. Blood sugar is great…no more “episodes” …YEAH.

  26. My 83 year old mother had an epidural put in before surgery and it was kept in for several days after surgery. She never even needed a pain pill during her recovery after leaving the hospital. They were planning on using general anaesthesia, but thanks to knowledge from this site, I requested the epidural on the morning of the surgery and they agreed.

  27. I had the epidural, when I first came out of surgery, I could not believe the pain. They finally figured out that the epidural had “pooled” because i was laying too flat. Once they put my head up a bit, it was wonderful. I would have taken it home wiht me if I could, it really did an excellent job of controlling the pain. After that, I had teh IV pump which was not as good, but adequate. Then I went to the pills. To me the epidural was most worth it because once it was working, my pain was so controlled taht I could rest and focus on recovery. has anyone on here who has had an epidural regretted it or wished they had not gotten one?

  28. Mel-
    As far as what to say to small children I believe the least possible is best. My children were 3 and 6 yrs when I had surgery last December. I was not here in my own city so my children never saw me in the hospital. They did see me at home with a drain and knew I could not be their mommy quite the I had been before. I ended up being sick for 3 months so it was a little different with me. They new I had surgery to make me better so that I could be the mommy I once was. They also were quite aware of my condition and the frequent episodes of my confusion and not being able to do anything. They did not want the ambulance to come to our house again to wake up mommy so they new I would be better after having the surgery. Sorry so long winded. Give them the brief situation and then wait for them to ask questions. They will let you know how much they can take and understand. Good luck to you!
    Tatia

  29. Mel, I have three children but they are quite a bit older than yours. I suppose it depends on the nature of your relationship with him and whether he’s an independent, busy type or might prone to worry – are you around the house a lot? or are they used to your being gone for periods of time? If I were in your shoes I guess I would be succinct, positive and not go into too much detail but answer any and all questions because at that age they can certainly ask a lot of questions! It’s a good opportunity to ask your 11 year old to step up to the plate and be helpful, but he being older might be more sensitive – don’t assume that everything is hunky-dory with him. My two cents! All will be fine and you will healing soon! Best wishes!

  30. Jon Mickel

    Thanks for your reply!
    I was under the impression that it was the surgeons choice, because when we asked about it (thanks to information gathered from this wonderful and informative forum), he said that there is no proven benefit to the pt for having an epidural, and that it just creates another line/tube to be worrying about post op. I will be sure to ask the anaethitist for his opinion when i meet him on op day.

    Thanks Mel

  31. Hi Kim – my surgeon said that i will get a once off morphine injection into the lower spine, and then self administering morphine post op. He anticipates that after 7-10 days in hospital, i should be off all pain medication within a week of going home… here’s hoping 🙂
    Another question – how did anyone explain this process to young children? My 11yr old is well informed and aware of what is to come, but its hard to know what to say to my 3 yr old.

    Mel

  32. Jon Mickel

    I’ve wanted to ask you for ages: are you related to the film director Alejandra Inarritu?

    Jane (UK)

  33. Mel, Are you talking about post-op … for the pain? I never had an epidural but had an IV pump for morphine post-op. It worked beautifully. When I was switched to pills, it was crucial to stay ahead of the pain because if I was in pain, it was too late. The oxycodone made me feel terrible though and I switched to tylenol after a couple of days.

  36. Anyone had experience good or otherwise of treatment from Doctor Michael Lam for adrenal fatigue?

  37. Hi All! My name is Mel and i live in Melbourne, Australia. I am a 34 year old mother of two, and I was diagnosed as having an insulinoma in February.

    I suffered a hypo whist at work, which proved to be good timing, since I work in an Emergency Department. Luckily, they could check my bsl at the time, which was 2.4, and they admitted me. I spent 5 days in hospital having abdominal u/s, 2 cat scans and the 72hr fast, which they ended after 18 hours when my bsl had dropped to 1.4. I also had to have an MRI. All radiology failed to show anything. My blood tests showed low glucose and high insuln, consistant with Insulinoma. I have been monitoring my levels 4 times a day, which show that i am low first thing in the morning, but late morning is my worst time.

    My endo referred me to the Head of Endo at the Alfred Hospital because he thought i needed to see someone older and more experienced. My new Dr arranged an Angiogram with calcium infusions, which showed incresed insulin from 2 of the 3 arteries. I was then referred me to a surgeon – Dr Peter Evans, who believed the tumor was located in the middle of the body of the pancreas. He requested that i have an endoscopic ultrasound to try to localise the tumor prior to surgery, and i had this done yesterday. The results show an ill defined area in the head of the pancreas,the size 0.71 x 0.87cm.

    I am scheduled for surgery on the 31st May, but due to the results from yesterday, we are not able to do a laprascopic procedure – it will definately be open. I have been warned that we may need to do a Whipple, but my surgeon is keen to avoid this if at all possible.

    It difficult trying to manage my own health problems, whilst working part time, and being a single mother (recently seperated). Thankfully my mum has been a huge support, but you can see the impact this has on the kids (aged 3 and 11) I guess all i can do right now is try to get things as organised as possible, in anticipation of being out of action for the next month or so.

    Thanks for listening!
    Mel

  38. Rudy, the good news is these tumors are almost never cancerous. Take heart in that. You still need the surgery though as even without being cancerous, these tumors are very dangerous as to your blood sugar. I highly suggest you get a blood glucose monitor so you can watch your self and not drive or do anything crazy when you have low sugars.

  39. Laura. Jackie many thanks for trying to help, how can one know if the tumor is benign or malignant without histological observation ? are the symptoms different ? I am 33 and terrified that it could be malignant. I’ve since heard from Kings, I have an appointment to meet a member of Dr Schultee’s team on Monday, it could’nt have come sooner, my stomach ache has gotten worse, none of the medication I have been prescribed seem to be helping, I am terrified of surgery but can’t wait to get operated, I’ve felt terrible the last couple of years, I’ve always had this “drunk” feeling, I’ve sat through meetings unable to concentrate, I’ve lost the interest and enthusiasm to do anything, it’s affected my personal and professional life badly, my girlfriend’s been a great she’s been very supportive, I just want my life back and start doing things we both love doing. I am just waiting the for the doctor to do his magic so that I am rid of this problem once and for all. Thanks again all, really appreciate all the help

    Regards
    Rudy

  40. Rudy
    You need to see who they contacted at King’s Hospital and contact that person. These low sugars are extremely dangerous and I think could cause permanent harm. I don’t think it is a bad idea to show up at the hospital and refuse to leave until someone talks to you. They have found this awful tumor and you need surgery. Fight the good fight and don’t give up. For most the hardest was finding the thing. I am afraid your paperwork is either lost or sitting in a pile somewhere. Good luck.

  41. Hi all. I am waiting for bloodwork (c-peptide, cortisol, insulin, glucose) to come back to determine if I need to do the 72-hour fast. I’m trying to be as informed as possible going into it. My question is this — who normally oversees the 72-hr fast — an endocrinologist or an oncologist? Who does the surgery if you need to have an insulinoma removed?

  42. Hi everyone.
    I’m Fiona, wife of ex- insulinoma John. Operation Jan 2009. I sent LOTS of posts during that time and am still incredibly grateful for all the support people gave me, and him, on this site during that time. This is THE best forum for insulinoma – let no-one disagree!
    It has now been 17months since John had his insulinoma removed and I now want to send a post saying how fantastic things are now!
    After a nervous 6 months or so after the operation, John now has no symptoms at all. None! He is back to the man I married nearly 29 years ago (this September 5) and this whole experience is gradually melting into ‘things that happen to people’. He’s still coeliac and that has to be considered every day, but as far as blood sugar goes – nothing – nada!
    It’s brilliant.
    That year we both spent worrying about him eating enough to keep him ‘sane’ are gone, and if he has to miss a meal because of work (we’re both musicians) then it’s not a problem! It’s funny tho – if he knows there won’t be enough time for lunch or ‘tea’ he still thinks of the dreaded cereal bars, but then I remind him that it doesn’t matter any more! He can eat at 10.30 after the concert, or wait til he gets home…that’s something he has taken a LONG time to get used to. He’s normal!
    There really are NO lingering symptoms after the operation. I will admit tho, that I am always on the look out for anything that might point to a new insulinoma. It’s one of those taboo subjects that will not get aired until, (or if,) it shows. We both assume it won’t tho, and that’s right! Only a 1% chance we were told, so that’s what we’re going with. And so far so good!

    So – to all sufferers – life really really does go back to normal. This is a horrible disease and it causes the most horrible anxiety for everyone around the person with it, but it’s perfectly curable! Hurrah!

    Best wishes to all

    Fiona

  43. Rudy, thirst is definately a symptom of low blood sugar, as for the others, I have not heard them mentioned specifically, but what I do know is after surgery, your body will change so much that it is remarkable. you will not believe how much better life will be. It is like being a new person, and I am not exaggerating. I would encourage you to follow up with the hospital and get a date as soon as possible. Maybe showing up on their doorstep next time you have low sugar would encourage them along. In my experience, the medical profession does not take this condition seriously until you are experiencing low blood sugar right in front of them. Quite unfortunately really! Good luck!

  44. Hi,

    Long time lurker first time poster, I have been having hypoglycemic episodes for a couple of years now, I had apparently been just staring at the televison for about 6 hrs, I had absolutely no recollection of this, girlfriend decided enough was enough and forced me to see a doctor, the doctor advised I take a fasting sugar test, I went to the surgery on the day of the test, it was a wednesday, a nurse took my blood samples and said I’ll have the results by friday, I got back home, I got a call within the next four hours by an emergency GP who asked me to get admitted to the Brighton Hospital due to dangerously low blood sugar levels, my sugar level was 0.8, strangely enough I felt okay ? my body had adjusted itself to the low sugar levels. At the hospital they conducted a series of tests, I didn’t go through a 72 hr test, they just waited for my blood levels to drop below 3, they did;nt have to wait long, took blood samples and the results were as follows

    Plasma Glucose – 3.8 mmol/L
    Serum Insulin – 386 pmol/L
    Serum insulin C Peptide – 2074 pmol/L
    Result: Insulin & C Peptide inappropriate for glucose level, consistent with insulinoma or sulphonylures use

    They then did a CT Scan of my abdomen, Results as follows

    CT Pancreas With Contrast :
    There is a 13 mm arterially enhancing lesion within the pancreatic head which in the clinical context may well represent an insulinoma. The pancreas appears otherwise unremarkable. A small focus of hepatic calcification is noted. No further significant findings.

    I have since been referred to Kings for sugery, I was referred on the 15th of April, it’s almost been a month and I haven’t heard from Kings, nobody seems to know anything when I call Kings, they can’t even locate my on their computers, the secretaries at Brighton Hospital are asking me to give it some more time :-(, getting very frustrated

    I have had a couple of other strange symptoms as well.
    1) I have very dry mouth, I am forever thirsty and feel the need to drink water almost all of the time
    2) my eyes hurt a lot, I work as an IT engineer, I can’t stare at the monitors for more than 10 mins, the doctors tested my for Sjorgen’s syndrome, but the results came back negative, I went to the optician as well, my eyes are apparently fine ?

    3) Over the past couple of weeks I have had dull stomach ache, I feel bloated all the time, I can feel gas forming in my stomach as soon as I have eaten or immediately after passing stools, I have been prescribed omepresol, it’s not helping at the moment

    4) I have bodyaches, dull chest ache and back ache

    The doctors seem to think it is due to anxiety and stress, Did any of you have any of the above symptoms ? I am very worried as I dont know if these symptoms relate to the tumor I have in my pancreas ?

    I just hoping I’ll hear from Kings soon, has anyone been operated at Kings before ? I only read one instance (Richard) being operated at Kings ? Sorry about the long post and thanks in advance for taking time to help

    Regards
    Rudy

  45. Thanks Tatia that’s very interesting that the same investigation carried out at a different hospital can yield different results if it wasn’t difficult enough to pinpoint the location of an insulinoma with all the imaging facilities available and the fact the no one is a gold standard test for finding them we also have a inter hospital variable as well don’t know whether to laugh or cry!

  46. I think I forgot to mention I had 2 Upper Endoscopic Ultrasounds within 2wks at 2 different hospitals. The second hospital found it but not the first. It might be worth another try at another hospital or imaging center. I wish you all the luck Neil, please keep us posted.

  47. Thanks everyone for their replies I had an endoscopic ultrasound last December with no abnormality detected, it would seem some investigations find insulinomas where others don’t, but no one test or scan seems to give a definitive answer in all cases it seems to work on an individual basis, suppose this is why we’ve all suffered a degree of frustration in our struggle to get that diagnosis or imaging we need.

  48. Neil,
    My insulinoma was found only by an Upper Endoscopic Ultrasound. I had had all the tests done as listed on the other posts and they did not show anything. I then had this test done in my city and it found nothing. I then went to another city and hospital and had the UEU and they found it and biopsied it. It also showed up on a ct-scan at this particular hospital but not the one in my city where I live. Keep trying and sometimes you have to look elsewhere to get the help you need. I am now 16 months post op from removing my insulinoma. I have my yearly check up oppointment on Monday and anticipate all will be good. Hang in there and do not give up, you will triumph.

  49. Hi everyone thanks for your support it’s greatly appreciated, April i had a Calcium Stimulation Test about 5 weeks ago which was negative but I’m determined to find it! Waiting for Triple Phase Ct next fingers crossed. Jacqueline I agree with Jackie one this one weight loss is not a recognised symptom of insulinoma, if they are sure there is a lesion of some sort in your pancreas I don’t understand why they don’t operate unless they’re not sure of precise location. Plus if you have a goiter and a panceatic lesion have you been screened for MEN 1 think it’s time to make some noise quite often the only way to get things moving is to rattle a few cages and I’m saying this as a healthcare professional myself sad but true.

  50. Frustrated Jacqueline,
    My concern for you is the losing weight part. Most people with that hateful tumor gain an average of 50 pounds. I don’t know if any on this site has ever said they have lost weight. The excess insulin generally facilitates storate of calories as fat plus your body is hungry all the time. It is like you have to feed it. Not saying that you don’t have an insulinoma but that is just an odd symptom.

    Neil,
    Don’t give up. They will find it and don’t let them stop til they do. Mine was found with blood tests and a follow up CT scan. I had had symptoms for a year not knowing what is was. A bad hypoglycemic episode sent me to my primary doctor and tests showed high insulin levels along with very low blood sugar. It was a fasting test and it was obvious that my pancreas was overproducing insulin without the sugar triggering it. A follow up CT scan found it. I was one of the lucky ones. Most on this site had it much harder. Hang in there.

  51. OK I’m joining the frustrated list – I last wrote on 28th March – ok it’s only a month BUT
    nothing happening – endocrinologist has me now listed as having goiter – all blood tests (1 still not back) negative
    ultrasound yesterday

    Pancreas ‘tumor’ still there – feel ill, exhausted, losing weight, nausea etc etc etc

    See internist Monday –
    If there is a tumor (which he thinks is insulinoma) do they not do surgery?

    they know where it is they know why don’t they DO something?

    frustrated Jacqueline!

  52. Neil,

    Has anyone mentioned a calcium stimulation test? That’s how they found my tumor after the imaging tests didn’t work.

  53. Hi Peggy and John thanks for your support it’s nice to have somewhere to vent your frustration especially with people that understand what your going through, your correct John in that the condition is so rare makes it difficult not only to find but also to explain to friends and family why we can’t just say it’s this and there it is now lets remove it!! I even have to explain a lot of the processes to my Consultant collegues at work! I have to say my Endocrinologist has been excellent and seems determined to get to the bottom of it, so the rollercoaster ride goes on more tests more results more disappointment but we’ll get the little bugger in the end.

  54. Don’t give up, Neil.
    This must be confirmed eventually. In my case, octreotide showed nothing, C-Peptide wasn’t mentioned, CT scan was negative, 72-hour fast test graphic in its effect – and MRI at last revealed the little monster, if I recall correctly, but only on a second check done by someone really interested. There aren’t so many of those people! The problem is the rarity of our cases.
    I’m now 16 months on after surgery – absolutely fine. Life is completely normal now. The process was long and worrying. It was certainly worth every anguish and every fuss made.
    You don’t have to put up with this.
    Good luck!
    John in London

  55. Niel,
    I love your attitude. Isn’t it frusturating! After 15 years and numerous tests, finding my tumor boiled down to the having the best equipment and technician. Since you’re in the field hopefully you can push for the most experienced. It doesn’t sound like you’re in the states, but mine was finally discovered at USC by MRI.
    Good luck

  56. Octreotide scan negative and C peptide suppression test negative, biochemistry says it’s there but imaging says not, just gonna throw my hands up and get my wife to take me to the Vet!!.

  57. 3 weeks after surgery: I’ve lost 15 pounds which is a nice treat, but the pain has been hard. I can’t take the narcotics and so have been living on Tylenol every 4 hours. The pain is related to what I eat. Three meals a day has been a new regimen. It is quite wonderful not to have an eye and hand on my next food intake. Lately, I have been trying to drink more water. Since I don’t eat as often I have not been drinking as often, either. However, today I see a window of optimism. The pain is very manageable and I do see the light at the end of the tunnel. I’m still not driving and am being pampered quite a bit.
    I often think of those of you who are waiting for a diagnosis or for surgery. It is a very difficult time, but Insulinoma has an end! When you get through the rough spots there is a new life waiting for you. Hang in there!

  58. Hi for the Last 2 years I have suffered from episodes of hypoglycaemia had the usual test extended glucose tolerence test and the rest, my 72 hr fast failed to trigger a hypo (bm 2.7 but no symptoms) so insulinoma was ruled out. My hypos continued but as a healthcare professional was in position to have blood taken during an episode this came back with glucose 1.9 raised insulin and c peptide so insulinoma again suspected, I have since had endoscopic ultrasound and calcium stimulation and selective arterial sampling with all negative. Next is Ocreotide PET scan to look for NET tumours outside the pancreas which is very rare indeed, not very positive we’ll get to the bottom of my problem. As my work is clinical I’ve not worked since November, my consultant has been excellent and 300mg of Diazoxide seems to be controlling my symptoms but very frustrated.
    By the way as a healthcare professional with hypoglycaemia your always suspected of self administering diabetic drugs till the bio chemistry prove otherwise not pleasant.

  59. I’m so happy to have found this site and forum!

    By chance, when having a CT for spine problems they discovered a 2.5 cm lesion on my pancreas. They did a follow up ‘dye’ CT and yes it’s still there.

    Just before the first scan they discovered I had “induced hypoglyemia” (please I may be using the wrong names here)
    I now have an appointment with an endocrinologist in 2 wks.

    My GP’s attitude is to just leave it? at least that’s how he’s coming across

    My internist wants another opinion before deciding.

    Now after reading forums etc think I’m going to push for having surgery
    They know there’s something there and where it is –
    I suppose at 69 yrs I’m not a ‘good’ risk but I can’t live the rest of my life like this

    I have suffered chronic pain for past 5 years in the last 6 months it’s become terrible – the pain is my left side and left lower back under shoulder. I don’t know if this is from the ‘growth’ or not.
    They have been trying for the past year to discover what causes the pain.
    I have zero energy – no appetite – can’t concentrate – nausea – apathetic – cold sweats – one minute hot – next cold

    I’ll check in again if I find out more
    and also to check how Beth and others are making out
    God Bless

  60. I am glad to have finally found a site where there is real-life information on symptoms, diagnoses and treatment.

    I have been having hypo attacks since my twenties. I’ve dealt with them by eating when one would happen. Of course that meant I was always 10 pounds heavier than I wanted to be. I was told it was because of PCOS. I have some of the symptoms, but not all. Four years ago I started to be fatigued all of the time and would become exhausted after things like blow drying my hair. I would sit at my computer all day at work and just stare at the screen not being able to put together a coherent thought or I would be falling asleep. I started getting tested and was diagnosed with Hashimoto’s thyroditis (autoimmune thryoid disease) anemia, and Vitamin D deficiency. Treating those things helped but I was still feeling very tired. Any kind of exertion leaves me wiped out and hypoglycemic. I tried painting our guest bathroom one day and was hypo the entire time. I kept having to stop and eat and even that didn’t really help. I can’t walk around the mall without triggering an event. About 5 weeks ago I started the Eat-Clean diet which is all non-processed foods where you pair a lean protein with a carb and eat 5-6 meals a day. I figured if I stopped eating simple carbs and more protein that would help. Nope, still having random episodes. Last week I tried to end a meeting at work by saying we were done 5 minutes early and it came out as 5 minutes late.

    So diet hasn’t helped, I’m still tired (but at least losing weight slowly) and I called my endo. He is doing a fasting insulin and the C-Peptide test next week and giving me a blood glucose monitor to check my blood sugar over the course of several days. His nurse didn’t tell me why they were doing those tests but in research on my own it seems like he’s checking for an insulinoma. Even though the surgery sounds a bit rough I’m hoping that these test can uncover the reason (if it is insulinoma) and I can be treated already. I probably won’t know until the end of next week what the results are. If it turns out to be an insulinoma I will be back.

    Take care.

  61. Scared wife, I am not a physician so there is no way I can give you a prognosis. Only 10% of insulinomas are cancerous so I am sorry that your husband’s tumor falls in that 10%. My thoughts and prayers are with you and your family as you journey through this time. As we all did I think you just take one day at a time. Look to your faith and support systems as you move forward. It helped me during pre and post surgery to post here and get support from all of these most wonderful people. You hang in there.

  62. My husband was diagnosed on Nov 23, 09. After nurmerous tests, MRI’s, CT Scans and Blood Work; the doctors concluded that he has Insulinoma with mets to the liver. The last Dr.s app. on Feb 24 they decided the only thing to do at this point is Chemo. Which he started March 8-12. The doctors have said this is not curable but treatable. The major problem is the liver; the tumor takes up 90% of the liver so have a portion of it taken out is not an option. The pancreatic cancer is larger about the size of a lime. The splenic vein and arterty show blockage as does the lesser curvature of the stomach. What does this mean? He is further along with this diease then I relize? What in your opinion would be the next step?? How about prognosis? He my husband going to die?

  63. For Stacy Green-

    How are you doing now? You haven’t had any post since October 2009. I have symptoms and 72 hour test results very similar to yours. I hope you can share with us any new findings. Thank you.

  64. Heidi, we all followed with you on your journey. Mike and I had surgery about the same time. I would read your posts and would update the family on how he was doing. I am so glad for all of us that have gotten to the he other side. The life with the tumor was so debilitating and even now when I have a “senior moment” my family will ask ” Are you having a spell”. It is really something that effects everyone and I think as often when any family that goes through an illness changes everyone. Your posts encourage me to perserver so that you so much for sharing the journey.

  65. Hi Everyone!

    On the 19th of March it is our 1st anniversary of Mike’s surgery. What a year this has been for all of us! Scary, difficult, remarkable and life-changing. We will certainly never be the same family, but we have survived the challenge and made it through. My message to those of you who are following in our tracks, searching for answers – waiting and wondering how it will all end, let me tell you that diagnosis is one challenging hurdle, and surgery is the cure (no matter how hard the process is).
    The relative rarity of insulinoma makes it difficult for most medical people to recognize or diagnose. If you are lucky they may have heard of it, but many haven’t. We were lucky that an Internist we saw in our emergency department had – that made things easier because he recognized the symptoms and sent us down the right path. It still took 8 months and endless tests (and the need to travel hundreds of miles each time) to locate the little beggar. The rarity followed us throughout the process – baffling many technicians and nursing staff, but we made it to surgery.
    It went well, as surgery goes, 3 hours long, no whipple required and a good outcome expected. However, one horrific abscess, 7 weeks in hospital and a drain in place for 4 months were certainly challenging for all of us. We didn’t enjoy that part too much, but we learned we could manage. Mike, someone who had never been ill other than a rare cold, is not as strong as he was, but he is quite well. He is just a bit more fragile and susceptible to things. The fact that he is now over ’50’ could explain it, but I really do think he has had some type of metabolic change. The good news is he has lost 50 lbs from the weigh-in the day before surgery. He is working full-time and enjoying more of life.
    So persevere with the process and don’t be afraid to advocate for yourself. Since this is rare, you will end up knowing more than many medical people you will have to deal with. I found out recently that Mike was a bit of a celebrity in our local hospital and while most of the staff don’t know his name, many know about him if they had any encounters on the post-surgical ward where he stayed for 4 weeks once he came back to town. This is a hospital that serves about 100,000 population, so he was truly a rarity.

    I cannot thank each and everyone of you enough for sharing, caring and being there through the difficult days. This was the place I learned what I needed to know to be the advocate for my husband. He was too ill to manage his own situation, and being the type ‘A’ person that I am anyway, I needed some way to help him. I needed knowledge for that. What I needed for myself was to talk with someone who actually understood what was happening to us – and I found that and more here.

    Anyway, it is my bedtime and I need to quit rambling away here. Bye for now.

    Heidi

  66. hey nicolai, i had gained so much weight in the year leading up to the surgery, and all in the stomach, so i was not a candidate for laparoscopic. i was told the scar would be above the belly going up, but due to the weight issue, they went in with an incision that is arch shaped and goes across the very top of the stomach. i’ve lost over fifty pounds since surgery, and i feel giving up a 8 to 12 cans of coke a day habit has a lot to do with it. it sounds crazy, but thats what i was doing to keep my blood sugar up. its so nice to see that the level stays in the 100 to 120 range now! hope everything goes well for you.

  67. Maureen and John,

    Congratulations to you both! Great to hear that both your surgeries have gone well. I hope Maureen gets back to full strength like John soon.

    I am curious as to what type of surgery you had, open or laparoscopic? With your short hospitals stays I am assuming laparoscopic.

    I will have a calcium stimulation test on Monday, so anxious to see if that resolves anything.

    Good luck everyone,

    Nicolai

  68. congratulations maureen! i wish i could have read your story before i went for my surgery. it was feb. 5th and i’m back to work now. sure glad everything worked out for you. for some reason, after the surgery, i spent a couple of weeks afraid to lay in bed, and did all my sleeping in a chair. i’d get a strange feeling in my stomach when i would lay on my side but i noticed thats gone now. also i worried about my drainage tube, which kept draining over a week after the operation, but it eventually stopped and the hole leaked for several days after they took out the tube but they said it was normal, and it healed up after a week or so. those were the only post surgery surprises i ran into, and i hope your recovery goes as smooth. it took me a month, but i’m really feeling myself again! again, congratulations!

  69. I’m home!! The surgery was on Tuesday, March 9 and I left the hospital on Saturday. I was operated on for 5 hours and all went well. The surgeon explained that he used a kind of melon baller to scoop the tumor from the pancreas. The two hour drive from the hospital was tough since there had been trouble locating a painkiller that didn’t give me itchiness all over or wild scary dreams. Home again with my three children and husband hovering I felt a little like a fraud. Yes, I hurt, but I’m not going to pass out, alone or wake up in an ambulance. This morning was a shock. My sugar level was normal!!!! I actually could wait to eat! Eating is no longer top on the list at all times. It will be interesting what the next days will bring. What a ride! Thanks again for the wonderful website. It saved me a lot of worry.

  71. Reading some of the comments on here are very hurtful. When I was diagnosed with a malignant insulinoma I was totally at a lost to find information. For example, in the UK, there was no website which specifically dealt with the subject. So I pulled together information to try and share some awareness about the topic. There is no right or wrong way to share information. Some people love forums, other’s like to chat on the phone, some people love Facebook and others hate it. What ever works for the individual is their own personal choice. Fortunately, only 10% of insulinomas are cancerous. For those who have them that is their reality – an insulinoma a rare form of Neuroendocrine Tumor (NETS). I don’t make up what it is called that is the medical term for it. Support comes in many forms and understanding and goodwill too. Just because there are other forms of communication does not mean that it undermines or serves as a threat to others. It’s just a way of creating a greater understanding for a very rare disease.

  72. Thanks to everyone who is willing to be interviewed. I will be seeing her on Sat. and will make sure she has your info.

    Amanda, I’m so glad someone referred you tho this sight!! I hope they can localize your tumor quickly. Just having the diagnosis is half the battle!

    John, such good news! It does my heart good to hear how much easier it is now, than it use to be to put this horrible disease in the past!

    Peggy

  73. John, I think you are the first one to ever call this operation “pain free”. I think it is completely worth it, but much, much worse than any other paid I have ever experienced including childbirth and knee reconstruction! you must have had some wonderful drugs:) I am jealous! My surgery was similar to yours it sounds like, an enuculation with very little of the pancreas removed though it was sitting on the artrey. My surgery was also done in Illinois, but at the University of Chicago. I am happy for you that you are doing so well. The weight loss is a very nice side effect of this wonderful operation! Stay in touch!

    Laura

  74. Amanda, what is your primary care doctor saying now? they tend to be very embarassed that they blew you off for so long which does give you some nice closure to that chapter! Don’t miss the opportunity!

    Laura

  75. hi all, i wanted to share my insulinoma story with you. when i first found out about it, this was the first site i found, and i read every post and i have to admit i was left traumatized, especially with heidi’s post. in feb. 2009, i passed out at work, woke up in an ambulance being told my blood sugar level was in the single digits. my work mates were telling me how i was walking sideways, but i was still telling everyone i was alright. i was dieting at the time, so doctors seemed to think that was responsible. they gave me a meter to test my blood and told me when it was below 70 to snack. the problem was it was hard to keep it above 50, with occasional readings in the 20’s. with the aid of a vending machine at work i noticed a snickers bar and a coke would raise it to 70 for a few hours, and a coffee and donut made it safe for the ride home. when i would get home from work i’d make big meals, and noticed a kind of numbness in my mouth while i’d be eating. this went on for a year, till my wife persuaded me to see a doctor. in the year since i had last been there i had gained about 70 lbs. my blood pressure was sky high, my heart rate was double what it should have been and a blood test showed i had elevated insulin levels. they asked me if there was any history of pancreas problems in my family. my mother died of pancreas cancer at about my age, so i was thinking the worse. a cat scan of my pancreas showed a 2cm insulinoma on the head/neck of the pancreas, an endocronologist told me it would most likely be a whipple procedure. i can’t begin to tell you how much i stressed out the week leading to surgery. when i woke up after surgery, the only discomfort were the tubes in my mouth and nose. somehow, the surgeon at university of illinois were able to scoop just the tumor out, without disturbing the rest of the pancreas! even though it was in a bad spot and right next to an artery. i was out of the hospital in 4 days. i had a drainage tube that was removed the following week. they said before surgery that i most likely be diabetic, but since the surgery, my blood sugar is around 110, which they say is perfect! plus my heart rate and blood pressure are also perfect, so no more blood pressure medicine. i’ve lost 50 lbs. since surgery, and i’ve given up the candy and soda. i thought the scar would be staples or stitches, but they used a glue and tape, and when the tape came off after a couple weeks, i was surprised how nice it healed. looking back, besides all the poking with needles and removal of the tape that was holding the epidural on my hairy back, this was really a pain free operation. its been exactly a month since it was done and i feel well enough to return to work. i’m also surprised i no longer need any perscriptions. its been a crazy year, but what a happy ending. best of luck to all!

  78. Hi Everyone 🙂
    My name is Amanda. I am 30 yrs old, I am 360lbs., and I am awaiting surgery to remove my insulinoma.
    I have been feeling the hypos for years (10+) and so many doctors have told me I need to “just face it and lose weight already, there isn’t anything wrong with me”. She (just like alot of my doctors) ignored the fact that I had obscenely high insulin levels, and very low blood sugar levels. She just worried about me becoming a diabetic. Finally I was referred to an endocrinologist, not without a fight. I kept insisting that there was something wrong to my primary care physician and she retorted with “Fine, I will send you to the Endocrinologist, but that’s it, after that you just need come to terms with the fact that you need to change the way that you are eating, and lose weight!” I was so desperate for that referral at the time, I didn’t even care. Here, I am now after many tests awaiting surgery to remove the insulinoma. I just had an upper EUS done on Friday, which they found an intramural (subepithelial) lesion in the area of the minor papilla and the ultrasound was unable to get a definitive localization of the insulinoma, so tomorrow, I have a visit with the surgeon to see what the next step is. The endocrinologist is says that I absolutely have this tumor/tumors, the surgeon just needs to find them. I also had a terrible reaction to the anesthesia (vomiting, low b/p).
    After reading all of these amazing stories (thank you everyone) I was finally able to answer alot of questions floating around my head. I really didn’t know that recovery was so long! I am so happy that 1. my friend referred me to this site 2. that so many people were brave enough to voice their opinions on the matter.
    I am ultimately hoping that the surgeon won’t have to remove much of my pancreas. I still wonder, how has this tumor affected my life otherwise? My 9yr old son was born with congenital cataracts, and had to have surgery to remove them and an implanted lens in his right eye. He is legally blind due to this. I gained 100lbs. for that pregnancy and kept the weight. In my 4yr old daughters pregnancy, I had blackouts and an emergency c-section. She had low-blood sugar when she was born. My son was born 9lbs 6oz., my daughter 8lbs.14oz. It just makes me wonder, what else has this tumor affected in my life.
    I’ve always known something was wrong. I eat healthy, I walk everyday, and I have no other health problems. It is such a tough diagnosis, but I am, at least, glad to know that there is someone out there that understands what I am going through.
    Thank you all for listening,
    Amanda

  79. Peggy,
    I could do an interview for your daughters friend if you like, the more this info gets out there the better for all those others like us. How would this be done? Would she require an email address?

    Let me know
    Nicky

  80. Hello All,
    Did any of you have pain or discomfort in the area of the pancreas *before* diagnosis?
    Thanks
    Russel

  81. Hi All!

    Maureen, Tuesday is on my calander and I will be thinking of you and praying for you. I am so excited for another life to begin as you are healed!

    To all past and present insulinomies,

    Would you be interested in being interviewed briefly by a friend of my daughters who is doing her senior project on people who suffer with “invisible” or rare diseases? She mainly wants to know how it has affected our lives and show how we can provide support groups etc. I’m sure you can use an alias if you’d like.
    She will need to interview this week I think..

    Let me know. 🙂
    Peggy

  82. Maureen,

    The very best of luck to you. So happy for you that you finally got the diagnosis and can now get the operation. I hope everything goes well and that you can soon live a normal life.

    I have still not had surgery, so I can certainly relate to you feeling worried! What type of surgery will you have? It seems that recovery can be tough, but everyone in here seems to feel that it is well worth it to get their lives back.

    Although the doctors are sure of my diagnosis, they are still not sure about the location of the tumor. So they will now do an intra-arterial calcium stimulation test – I believe some of you have had this? Hopefully it won’t take too long before I am ready for surgery as well.

    Good luck Maureen!

    Nicolai

  83. Maureen, You are in my thoughts and prayers and i am wishing you a successful surgery, and a speedy recovery! I have not posted in quite a long time…. and hearing your story brought up many memories and similarities to what i went through with the doctors and how i felt. I suffered for about 6 year, having two young daughters, my low sugars were so bad i suffered black outs and even a seizer at the grocery store with my daughter (then she was two)…….. the paramedics read my sugar to be 22. When i went to my endo. she said “Thats just not possible, and well you didnt eat right all that day!” Very frustrating.
    It is scary wondering how life is going to be when you don’t have to rely on a purse full of food, and everyone around you watching every move to see if you need something to eat! When you can have a glass of water, a nice fresh salad and know that you feel fine! To me …..a-lot of my depression was corrected after my surgery… i wasnt living anymore with low energy and low sugar, and all the battles that came with it!!! It is such a hard disease to live with….. and takes such a toll on your body, it’s no wonder a-lot of us feel depressed!
    I know you are going to go through this and come out healthy and relieved and happy that you can go on like nothing ever made you sick in the first place!!!

    best of luck, best of wishes, i will be praying for you!!
    oxoxoxox

    Pamela

  84. Thank you everyone. Just a few days until the surgery. I’m excited and worried at the same time. Though, I expect to soon feel so much better, I am not looking forward to the time in the hospital. It occurs to me that there will be an adjustment afterwards, too. I will have to get used to being healthy. Strange as it sounds, I have become used to the everyday challenges of low blood sugar. What will it be like not to have to carry a blood monitor and a bag of food? What will it be like to not have to have an alternative agenda for every day depending on how I am feeling? How wonderful each day will be when I just have to deal with normal things! From this website I’ve learned so much.

  85. Maureen, so glad you found the site. How sad you were treated in that manner. Depression must be fairly common with this because you have fatigue, weight gain, loss of independence, and many more issues. I have had some depression since surgery but now that the weight is coming off I am better. You will get your life back, you will not have to carry food around, you will be able to delay a meal and not worry. It is not long now. Please let us know how you do and if you have any questions.

  86. Maureen,
    March 9th is so close! I will always remember the first day at home after my surgery when I woke up, all by myself!It was such a good day. I am very excited for you!
    I went through the same diagnosis as you did since my husbands relative had diabetes and I also was clinically depressed. One endo told me that that was most likely due to too many brain cells being destroyed. I realize there are many different stages of this disease…but they’re all hard.
    I’m glad it will all be behind you soon.
    Peggy

  87. Maureen – So happy that you found the tumor so easily though I understand you’ve been suffering for years without knowing what was going on.

    The funny thing about what you wrote is that I doubt depression is unusual for people with insulinomas.

    Anyways – good luck with your surgery. You will soon be feeling A LOT better!

  88. What a wonderful website. It is nice to know that I am not alone! I have been having episodes of low sugar for literally years, but the condition finally accelerated. Now, there is no question of the diagnosis, since I had a CT scan. The 2 cm tumor will be removed March 9.
    A strange thing happened along the way that I want to mention. Last February, I was taken to the hospital in the middle of the night with low sugar (26). My primary doctor deduced that I had taken my husband’s diabetes meds! He could not accept that such a thing would randomly happen. I was new to the area and he did not know me well. I asked for an endocrinologist appt. That doctor saw that I had a diagnosis of mild depression and agreed with his colleague that I was just going for attention. His nurses and his dietitians were telling him to check for insulin resistance and for insulinoma, but he was stubbornly insistent that I was a taking my husband’s meds. Finally, the endo sent me for a three day fast in the hospital. According to my surgeon the real reason for the hospital visit was to test for my husband’s drugs in my system! The only thing that showed up was a severe hypo situation. Days later I had the CT proof and a sort of apology from the Endo. He had been blinded by the depression diagnosis and could not get beyond it. It made me aware of how difficult it must be for people with mental illnesses to get help.
    Anyway, I am glad to see that symptoms will abate after surgery. I am literally counting the days, since every day is difficult with the ups and downs of low sugars. I also carry food around like it is a pair of glasses. If I don’t have food every few hours there is trouble. The doctor insists that I test sugars before driving and every 1/2 hour of a drive. It is a real pain.
    Thanks for the chance to vent. Good luck to all.

  89. Hey, I’m sorry it took so long to update everyone!

    I have been WEAK and not feeling good since my 72-hour fast. I am just now, two weeks later, starting to feel somewhat normal.

    I apparently don’t have an insulinoma, as my b/s went from 100 the first day to a low of 67 toward the end. I was shocked, to say the least. We decided that I must need protein with EVERY meal to make sure the carbs do not overwhelm and make my pancreas put out too much insulin. I have done that since the testing and so far, so good. Even though I will not let more than 3-3 1/2 hours go by without eating.

    While I was testing, my b/p was kind of high resting and when I would get up to go to the bathroom, my heart rate would shoot up to the 130s within a minute or two. I don’t know why all that was happening. And, I was sooo hot the whole time, even though I didn’t have a fever. My body definitely did not like going through that, even though the not eating was not a huge deal.

    The doctor everyday kept telling me to just relax, like I was on a vacation. I don’t know if my labwork was showing my “stress” hormones were high or something, but my body was sure acting like they were! My mind was very relaxed though, so don’t understand what was going on. The only thing is IF my stress hormones were elevated, that is the cortisol or catecholamines, I DO know they can all cause ELEVATED blood sugar! So, were my numbers artificially elevated???? I have to go back and see the doctor, as she said it would take a few weeks to get all of my blood tests back. I am just hoping they might have tested all of the other hormones also, as I have an orthostatic intolerance issue, POTS(postural orthostatic tachycardia syndrome) also, and maybe the other hormones could have given them a clue. I also have been tested for Cushing’s and a pheochromocytoma in the past.

    Thanks to everyone for their answering all my questions. It doesn’t look like an insulinoma for me, but IF my blood sugar levels get artificially elevated because of other hormones, it might still be any issue.

  90. Hello all!
    It’s been ages since I’ve caught up with you all and I have no excuses other than getting on with my new life insulinoma free.
    It has been 18 months or so since my partial whipple surgery and generally I feel great. The funny thing was in the beginning, after the operation, you catch yourself analising every funny feeling you have thinking it maybe that they didn’t get it all. I would still take my blood sugar levels when I felt dizzy to find they were all good. Turned out I was anaemic for some months after the surgery, giving me the weakness feeling.
    My scar has lightened up even though its still quite impressive, I like to think of it as a battle scar from a war I won, I dont mind it really. I’ve also lost around 17kg so look more like the old me which is an esteem booster in itself.
    The only thing that I found annoying was my ditsy moments after surgery. I’m sure the fasting tests I had in hospital without the administering of glucose afterward, including the endo ultrasound left my poor little brain a little worse for wear.I’m sure the jury is out on my opinion but I’ve had a lot of confusion and lost thought in the middle of a sentence which weren’t related to hypos.My husband even read an article on prolonged lake of glucose to the brain causing some damage, but hey we cant have it all right 🙂
    Anyway, here’s good luck to all new comers and a fond hello to all those who helped me during my bad times. I will try and keep in touch more often, happy new year
    Nicky x

  91. To Sue,
    When I did my 72 hour fast my blood sugar dropped below 40 after 15 hours. I didn’t eat anything after 12:00 midnight and by 3:00 pm I was started to have my symptoms and my blood sugar was in the 30’s. Just thought I would let you know my experience with the 72 hour fast. Good luck with everything!

  92. Hey everyone,

    I am at around 60 hours and my blood sugar is hovering in the low 70s. The first day it was around 100 all day! I never have a fasting that high. So, 12 more hours to the end. I’ll post again sometime.

    Not eating is beginning to get old!

  93. Sue,

    Best of luck. I hope they can figure things out for you so you can go on to the next step. Keep us posted!

  94. I’m going in in the morning to start my 72-hour fast. I’ll let y’all know how it goes! I so hope it tells something, as I am tired of having to eat so often while awake. I read of the people that had their insulinomas removed and now can skip a meal. After all these many years, that is my goal!

  95. Thanks, Kim and Sue.

    I think my question is not whether the coeliac disease led on to the insulinoma – highly unlikely I should think – but more whether anyone has also experienced insulinoma after being diagnosed with coeliac disease, and whether there will probably be another auto-immune condition coming up on the horizon.
    And it would be fascinating to read whether anyone with coeliac disease who had the full triple organ surgery to remove their insulinoma, including the removal of their duodenum (the bit that suffers in coeliac disease) led to a miracle coeliac cure…???
    My endo could not give a response on that!

    John

  96. John,

    Congratulations on your 1-year anniversary! And thank you for your thoughtful note.

    I wasn’t clear on your question – are you wondering whether the coeliac led to the insulinoma or whether the combination of the two will lead to something else? Picking hairs I know but just wanted to be clear.

    Happy New Year everyone!

    Kim

  97. John,

    Glad to hear from your story and glad you are all well!

    As far as autoimmune, I have Hashimoto’s thyroid, was just tested for celiac last month(had + antibodies, then – biopsy, so don’t know what that means!), and am getting ready to get tested for an insulinoma. So, there might be something to what you endo mentioned.

    Maybe some others will chime in and mention if they had autoimmune issues.

  98. Dear all – Jon Mikel, fellow insulinomiacs, husbands and wives, doctors and friends

    The first anniversary of my insulinoma operation prompts me to revisit this wonderful site and re-read all the amazing submissions and comments, heart-warming, sad, funny, distressing, supportive and compelling. What is supremely evident is how important the site is to us all, before, during and after diagnosis and surgery. A shared experience is so much better than private suffering.
    Jon Mikel – I do hope that you are going to find the time and energy to collate all of our thinking and writing, all our various troubles and successes and follow-ups.
    It is clear that more women than men are afflicted – or bother to write about it, anyway!
    It is painfully obvious that the condition is so rare and so patchily understood, that sufferers are occasionally misunderstood, misinformed and misdiagnosed and not with any maliciousness on the doctor’s part.
    Full public research and public information would be so advantageous – but is very expensive, I suppose.

    Whatever happens in the future, I can say again that I feel privileged to have been helped so generously by this site – and so relieved that my own treatment was a complete success. No-one should feel left out, no-one should feel embarrassed at trying to get to the bottom of any unpleasant and unwanted symptoms, making a big fuss if necessary. Here you can ask anything you like. Someone’s probably been through what you are experiencing.

    As I have written before, the cure may be a serious undertaking, dramatic, scary, temporarily enfeebling and painful – but the outcome is infinitely worth it.

    I have two unanswered questions still praying on my mind: Has anyone else out there experienced insulinoma alongside coeliac disease? And was my endocrinologist’s prediction that ‘one auto-immune condition (such as coeliac and insulinoma) will often lead to another…’ true?
    As a nearly 61-year old man in London, I shall watch the site for any answers and future developments – and I send all who going through this my warmest good wishes for 2010 and successful treatment – and full health!

    John

  99. April,

    Thank you for your information. It will be nice to know that I can at least drink on something.

    And, yeah, I can see where an mp3 player would come in handy during that time. I just worry about my husband who will be staying with me, as he is a “busy” type, and will definitely get bored easily!

  100. Hello Heidi,
    I am Jane from the UK who travelled through your town in the 70s. I was in Canada in the summer and thought of you and then in November you left a message about your cncern for Mike. Mike’s experience was traumatic and prolonged, not just his surgery which must shock the body, but also the complications which went on for a very long time. He had to keep mentally strong and positive during all that because, of course, none of us knows the outcome of anything. Then you mentioned your son was diagnosed with Asperger’s . This itself is also a traumatic experience because you have to accept that your child has a problem ( I think I have mentioned before that one of my sons is autistic.) All this takes a long period of adjustment but people are resilient and hopefully Mike is gradually working through all of this at the same time as working and picking up his life again. Try to keep smiling, Jane

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