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. I drank a lot of water and I think they let you drink non-calorie drinks as well.

    I suggest you take an IPOD or MP3 player.

  2. Yay!!!! I’m going to do a 72-hour fast! I believe it will be next week, so I’ll post late next week to let y’all know how it went.

    I have a question–do you get to drink water and maybe diet, caffeine free soda just to break the monotony?

  3. Hi Sue!
    I so hope your endo gets you sorted soon. The question bout diazoxide you asked. Diazoxide supresses the amount of insulin made by your pancreas. I have to take quite high doses of the drug but it does work for me, although its side effects can be a problem. It makes your blood sugar higher as it makes your insulin production far less. Hope this helps.

    Janet

  4. I am still waiting for my new endo to come up with a game plan regarding my drop in b/s. I have been doing okay lately, but I have the same issue as before–this morning I took a calcium supplement, and my b/s dropped down into the 50s within two hours.

    I have made a positive correlation between calcium ingestion and dropping b/s. I really wish I could test my insulin levels(at home) at this time because I just KNOW my insulin is being raised by the calcium, thus causing the drop in b/s. I have had this happen about 5 times now over the last few months. I don’t take calcium hardly at all, as it bothers my stomach area. So, the few times I do take it, I get the drop in b/s. This ought to be a big clue for my doctor.

    When you insulinoma people took diazide(?), what exactly is that doing? Does it have something to do with calcium in your body? It might clue me in on some of this!

  5. Peggy.
    Thanks for your prayers! I too pray for us all on here, but God has given me strength to get through all of this rubbish and I am indeed very blessed in many other ways. I am fortunate that the diazoxide helps me quite well, it has its down side, but it really gets me through. I so hope that Helen gets sorted and can get some speedy answers to her setback and then whatever treatment is best for her. Love to everyone. Just keep going and live every moment you can thats my philosophy on it.

    Janet

  6. Oh no! Helen that is not good news…I remember you had a reaction to diazoxide didn’t you. But it doesn’t bother you now? Wow, until I heard about Janet, I never considered what it would be like to have to accept going through this disease again. There is so much they just don’t know. I will pray for both of you to be able to withstand whatever it brings.

  7. Helen
    No, I am having medication to try to help symptons. It was going to be very difficult having already had extensive surgery on my pancreas (also had spleen removed) so I live on diaxoxide!! It does help to control the hypos, and although had to put up with the side effects its much better than daily hypos. I am ok and count my blessings. I hope you get some news and diagnosis yourself soon. Love to all.
    Janet

  8. Hi Janet, sorry to hear that you have another tumor. Are you going to have it removed again? How long ago was your first one?

    I called my consultant and am waiting for him to return my call, I think I will ask if I can do the 3 day fast after Christmas etc just help put my mind at ease or not!!!!!!

    It sure does feel like OMG I cannot go through this ago but I am hoping that it is something else but have a feeling it’s not because as you say there is no mistaking the hypo, it;s all happening in the same way for me plus I am starving after eating which is what I used to feel.

    Anyway I’m going to try and stay positive and see what Dr Drake says.

    Take care.
    Helen

  9. Hello all!

    Helen
    I am sorry to hear about your 3 hypos. I have a recurrence of insulinoma. My first was completely removed, but many years later I have another one. Now, this may not be the case with you as we are all different. But do get it all checked out. It seems so unfair, it really hits you when those hypos return and there is no mistaking them. Any way lets hope there is another explanation for your symptons. God bless you all.

    Janet

  10. Hi all, well I have not written on here for ages, but have read through some of your stories over the last few years.

    I had my insulinoma removed April 2006 and all has been well but in the last month I have had 3 hypos!!!! 2 unconfirmed as I did not check my sugar but on Saturday I had that feeling of spaced out and checked it and it was 2.9 so now of course I am worried that it is back. I will be phoning my consultant tomorrow morning, but suppose I want to know if anyone has had their insulinoma removed and then it’s returned? Suppose my main quesiton is can a healthy person have a hypo?

    Thanks and wishing you all a very merry Christmas.

    Helen

  11. Justine,

    Welcome and good luck with your journey to diagnosis. I am in the same boat, waiting for my new endo to look more in depth into my low blood sugar issues. I have been told in the past that I have reactive hypo, but something has changed this year. I am dropping ALOT lower than I used to for the last 15 years, and it is hitting me faster. Let us know how your appt. went.

  12. Tatia,
    Thank you very much for the information and the help! I have an appointment with my Endocrinologist tomorrow, so hopefully he will run some more tests. If I have reactive hypoglycemia, does that rule out insulinoma? Or have many of you been diagnosed with reactive hypo first?

  13. Justine,
    You have come to the right place for help! You have stick with it and not give up until someone can figure out what is wrong. You may ask your endo or primary care physician to give you a blood glucose monitor so you can take your blood sugar every two hrs or so, before you get up in the morning and throughout the day. There are certain blood tests that can be done to see if the proinsulin levels are high when the insulin level is low. The 72 hour fast might also be a test to do in the hospital or docotor’s office. At some point if you have an insulinoma the symptoms will become worse and more frequent. Stick with it and try to find a doctor where you are that can see you who knows specifically about insulinomas. Check the previous entries on this site to the beginning because I know of several people who have had this condition who are in your area that have been on this blog. Good luck and keep us updated.
    Tatia

  14. I am located in Southern California… I have insurance through Kaiser, but I am starting to loose patience and trust in them. Most of the doctors treat you as if you are a number, and not a patient. I do, fortunetly have a very good primary care doctor now, but I have yet to find a good Endocrinologist. I am just so confused about what to do and how to go about getting my questions answered.

  15. Justine, welome to the site. My symptoms were very random. I did have low fasting sugars once I reported a bad episode and my PCP started testing and looking for the causes. But for 6 months I would go weeks with no problems but the episodes got more frequent. I gained about 50 pounds, was really tired, and pretty scared. Where are you located. Maybe someone from your area on this site can give you some adivce on who to see. This is so rare that not may physicians handle this stuff.

  16. Hello! It is so nice to have found this website with many people who have been diagnosed or many people who are struggling with hypogylcemia. I am a 21 year old female and I have been having hypo episodes since I was in my early teens. I have blacked out a couple of times, but I never knew it was something to do with my sugar levels until recently. I have been to an endo doctor who tested my fasting levels which have came out normal. The problem with my condition is that it is not an everyday thing, so it has been hard to diagnose. When my first endo. doctor found normal numbers from my test, she was about to just release me back to my primary care until I persisted that she refer me to the chief of endo for a second opinion. I saw the chief about 1 week ago and he ran an oral glucose tolerance test on me. My fasting was 77, 2 hours after drinking the glucagen it was 74, then my number dropped to 48 at the third hour. When it was at 48, I definitly had hypo symptoms, but I was not at the worst I had ever been. This makes me wonder what my BS is at when I actually black out?! Anyways, the doctor is saying it is reactive hypogylcemia and wants to end the tests at that. The problem is that I feel that I have both fasting and reactive hypogylcemia, because everytime I have blacked out, it has been in the morning after fasting. I have been trying to keep a log of my sugars, but my hypogycemia is so unpredictable that I have not caught a number below 68 yet. Not to mention that I have not had a faiting spell since I started keeping track of my BS’s.

    I am just really confused about what to do from here because I know something is going on, but I feel as though it is being pushed in the corner. Has anyone ever experienced having random hypo moments one morning and not the next? I also have a pretty balanced diet and I am not overweight. I have been so fatigued and tired these past few years, and it is really starting to take a tole on my daily life. I also have frequent headaches & migrainces. My doctor also did a CT 2 years ago which showed nothing, but after reading everyones story on this website and seeing how these insulinomas are so easily missed, it makes me wonder if there is something being missed.

    Please help if anyone has any comments or questions.

    Thank you,
    Justine.

  17. Sue – Good luck today. I hope you find somethting definitive. I remember when I went over the reults of my first CT scan with my GP and she said “They didn’t find anything so that’s good” and I had to say “No we WANT to find something!”. She clearly didn’t understand what we were dealing with!

  18. I head back to my g.i. doctor today(finally, after a month of waiting!) to find out some results. The one I am curious about is a CT scan of my abdomen. I will be curious to see if it shows anything on my pancreas. Last time I had a CT scan of my abdomen(2 years ago) they mentioned an enlargement of the tail of my pancreas, whatever that means.

  19. Hi Heidi,

    I am really glad you wrote. When someone is ill, people always seem to ask is it cancer? And if not, then all is well and no matter what you’ve gone through, it seems, you are expected to bounce back and be happy that you are alive and well. This can wear on you if you think you should be bouncing back and you’re not. I think perhaps we all have our weak link and for me it was the psychological aspect. I physically recovered very quickly – went hiking three weeks after surgery, horseback riding 6 weeks, skiing for a week (the steep stuff – not to toot my horn but just to illustrate my point). HOWEVER – the emotional recovery has been much slower. Along with the traumatic things that happened because of the insulinoma, several traumatic things happened in my family life so it gets hard to say what caused what. But I am definitely not the same person. It is like a kind of mini-PTSD – my physician used that term. I am two years out of surgery and I am getting better and better. I don’t want to go into a lot of details on this site, but if you want to talk more we could exchange email addresses. But to summarize, it will take time. I think it is good to recognize what doesn’t seem right, to accept it, and to let go of expectations but be sure to celebrate steps in the “right” direction. This is not something that can be forced, it needs to happen of its own will so you probably need to stop thinking in terms of then and now, and focus on the now and the future.

  20. HI everyone,

    It has been quite as while since I checked in here, but I see those of you who are still in the diagnosis process, are struggling with the slowness of it all. I can sympathize – we went through it all too. It seems like you will never get the answers you are desperate for, but I can tell you we made it in just under a year from the first distinct episode to surgery.

    8 months later and Mike is back to work full time, has a fascinating scar to show off and things could be said to be normal. However, things are different too. Mike has recovered but he has not returned to the same as before the start of this all. I was chatting with my son’s pediatrician today, regarding Mike’s situation and he mentioned that prolonged low blood sugar episodes can change/ damage brain cells which can change personality.

    If you ask either Colin or me, Mike is still different than before; more tired, more passive, more turned into himself. Before surgery he was this way, and it was part of his self-preservation – keep the output low and he could coast longer without setting off the hypoglycemia.

    Now he has stable blood sugar and no real reason to behave this way – so is it a new learned behaviour, or has his body changed and his personality with it? or could it be a form of depression which apparently can happen to people with serious and/or prolonged illness?

    So my question is for those of you who are past the surgery a stretch – have you changed from how you were before you got sick?

    We have made such progress from where we were in April 2008 when he had that first episode, but we are not back to the way things were before 2005. I can actually trace the progress of Mike’s declining health to sometime around 2005 when he started to get slower and quieter.

    Am I imagining things? My son doesn’t think so – he still mourns the loss of his “Daddy” who was a scout leader for him and his best friend. That is not the Dad Colin has today.

    Maybe I am just exaggerating things but he seems more fragile somehow.

    Any thoughts?

    Thanks,

    Heidi

  21. Hi April,

    I can’t remember when your surgery was but mine was at the end of September and I went skiing in late December. The stomach muscles aren’t as fully healed as they will be until at least half a year after the op but I found skiing to be no problem.

  22. Has anyone that has had surgery gone snowskiing in the first few months after surgery. If it ever gets cold, we want to go but I just thought about how bad that might hurt after skiing all day. Would love to hear some experiences.

  23. Sue,

    I echo what Peggy said. I understand. We have all gone through the various stages of dealing with this nasty illness on this site. It is a good place to tell, ask, complain, rejoice – all of that lets the newcomers know what can be involved & that they are not alone. I absorbed everything on here like a sponge when I was ill and it sure did help knowing that the bizarre and unsettling things I was going through and they way I perceived it was not unusual.

  26. April

    I can only agree with you completely. You should be able to judge what you can and cant do – you should know if you are getting low and take steps – ie snacks and blood testing. I always carried a healthy cereal bar with me or headed to the shops to get something to temporarily raise my sugars. I lived on low blood sugar without knowing it was a serious condition for years and years. I only really know how serious my problems were till after my op when they werent there any more! If you read any of my previous posts they will describe how seriously ill I was and all my side effects. Not quite as bad as some people on here but certainly challenging.

    There are so many posts now it is hard to even begin at the beginning and take it all in but if it hadnt been for this site I would still be searching and still reading about ferrets!

    It is 2 and half years since my op and although my blood sugars reverted to normal straight away recovery for the rest of my body was not quick and patience was still needed.

    I am healthier than I ever was but still dont take it for granted and still keep an eye on how i feel. However even when feeling low my blood sugars have been quite normal which is always very comforting.

    Just a quick note – there are many things that cause low blood sugars and it is possible that it is not an insulinoma – you need to make sure that the doctor you are under has the experience and patience neccessary to fully investigate and rule it out and if you are still convinced – shout very loud and keep doing it until someone listens.

    Wishing all the very best where ever they are in the insulinoma process.

  27. Hi,

    For what it is worth, as a former insulinomian, I have a few suggestions for people in the process of diagnosing and treating their insulinomas pertaing to the concern about immediate answers on the blog.

    Insulinoma is a long process that involves a lot of waiting. Waiting for appointment, tests, test results, doctors decisions, etc. If you focus on it too much it will take over your whole life, which is not necessary. My suggestion is to make sure you have taken the next step, called the doctor, made an appointment, scheduled a test etc and then keep up with the rest of your life. Make sure you have glucose tablets and food with you at all times. Eat a healthy snack at regular intervals. Keep your meter with you and then live your life. Take care of your kids, go out with friends, read a good book, get a new hobby. Check this blog every few days but not every day. Certainly not every hour or every 20 minutes.

    This is a tough disease but it is not something that keeps you from doing the things you need to do. You just have to plan ahead and be careful.

    Just my two cents on the issue.

  29. I haven’t heard back yet from my new endo almost a week later. I guess she is still getting in old labs and wanted to talk it over with others first.

    Nothing’s been posted in almost a week, so wondering if this site is “down”.

  30. By the way, I do like the extreme top-of-the-page pictures, as obviously they look like snapshots of a different country than the US, however, I DON’T care for the pictures that are on the upper left, that don’t leave anything to the imagination. I know that those were the ones being referred to when people said they LOVED the pictures, and know that was said dripping with sarcasm! I totally agree.

  32. I thought I posted this last night, but maybe not. So here goes:

    Okay, my new endo, may I say, uttered the words, “72-hour fast”!!!! I was in my brain thinking “yaaay!”. However, she needs to look at all my previous labs and think over my not-clear cut history–I probably also have other endocrine issues going on at the same time. Then she will come up with a game plan. But, I was very impressed that she intends on studying my case. I will keep y’all posted when I hear back from her.

    Please, for those that haven’t posted, we would like to hear more stories of testing and diagnosis(include any testing numbers, as I know I personally like to compare).

    Thank you all so much who have been diagnosed and are now well. You don’t know how much your information helps us that MAY/MAY NOT have an insulinoma.

  33. Wow don’t ya just LOVE the photos at the top of this!

    Yes, sometimes I wonder if doctors try to avoid this diagnosis … hmmm … that thought has crosses my mind once or twice.

  34. Marilyn–I enjoy all the input and stories also. You know, you can only get so much information from medical articles or other info, but nothing like hearing it from the horse’s mouth!!!(Not that ya’ll look like horses!)

    Peggy–that is nice to know. I figure there are more people that are just “cast off” to the side and given a reactive hypo diagnosis.

  36. Gee all this input is great! Thanks for giving out all this info. It is so interesting to see everyone’s take on this b/s problem.

  37. Well, my endo referred me to Houston. MD Anderson said they only handle cancer patients(which I kind of figured), so they referred my doctor’s office to another endo in Houston. I go tomorrow! Hopefully they’ll look into this a little more. I’ll keep y’all posted.

    Did anyone FIRST get a reactive hypoglycemia diagnosis and then have the insulinoma found?

  38. my 72 hour test was not typical, I woke up in the morning, did not eat, my husband drove me to my endo’s office, he did a blood draw and I checked my blood on my monitor. After an hour, he did another and I checked again, about 30 minutes later we did it again and at that point, I was really low and had to eat so we ended the test. It seems to me eating before would only make the test take longer. They are measuring that your sugar continues to fall even though you are doing nothing and your insulin and pro-insulin levels to make sure you are not secretely injecting yourself with insulin.

  39. Very interesting to hear how people got their diagnosis.

    My understanding is that the 72-hour fasting test is meant to provoke a low blood sugar level, and then test the insulin levels.

    So Kim, you are right that if after just an overnight fast, the blood sugar is very low and insulin levels high, the doctors may be satisfied that you have an insulinoma. However, even if overnight fasting blood values are within normal ranges, this cannot be used to exclude the possibility of an insulinoma. This is why the 72-hour test is used.

    From what I have been able to research, most hospitals look primarily at the blood values from the end of the “72-hour” fast. However, I have also read of hospitals that administer glucose orally at the beginning of the fast (like John describes) and then measure blood sugar and insulin levels frequently the following many hours until the blood sugar gets low. The developments in bloth blood sugar and insulin levels then give a very clear picture as to whether there is an insulinoma or not.

    I will have my second 72-hour test in a few weeks, which is why I have been trying to learn some more about the procedure.

    Good luck to everyone still fighting with a diagnosis.

  40. My diagnosis was similar to Kim’s. I had an overnight fast and it showed low blood sugar and high insulin levels. 3 months prior I had the same but the second test was more pronounced. My primary care physician sent me to an endo that thought insulinoma immediately and it was found on the first CT scan located in the head of the pancreas. After following all of the posts for almost a year now I am so grateful for the quick diagnosis and resolution. My heart goes out to all of you that are struggling through this initial phase.

  41. I think the combination of low blood sugar and high insulin absolutely has relevance for n insulinoma because that would never happen in a normal body no matter what kind of fast you went through. My bloodwork was done only after an overnight fast and showed low blood sugar and high proinsulin. That’s the magic combination.

  42. Sue, I am trying to recall exactly my so- called 72-hour fasting test over a year ago. I had to go into the hospital early in the morning having eaten and drunk nothing since 10 pm the day before. They measured my blood sugar with the pin prick test, then gave me a large mug of not unpleasant, terribly sweet and lemon-flavoured syrupy drink. I had to drink it all quickly, then lie down – and wait for the effects on the blood sugar which taken and measured every 30 minutes. from a high blood sugar blast level until the sugar fell was about three hours, frustrating because it seemed not to register. But then it registered big time. I slumped, babbled insanely, professed love for all nurses, hid under the sheet like a baby, refused to cooperate, slept and generally hit rock bottom. Then they fed me a baked potato and fruit drinks and waited for my sugar to come back. That took an age! Finally, over seven hours, not 72 hours, after I entered, I was dismissed and went home by bus, exhausted but reassured because I had acted and reacted as expected from a suspected insulinomiac. The body which usually was letting me down every two to three hours went into survival mode and postponed the inevitable crash but couldn’t postpone it for ever.
    They immediately arranged CT scans, MRI scans and octreotide scans – of which the first two showed positive results and pinpointed the tumour’s location.
    The rest went smoothly – and a year on I am so well it’s disgusting!

    Good luck – and good hunting – and good health. It is a fascinating, time-consuming, frighteningly long process – but there is a solution – and it is better than he struggle to live with the tumour.

    John

  43. Dear Marilyn
    A fasting test is a very simple test: you do not eat or drink anything but water during the fast, from start to end. You can start the fast at any time of the day depending on where you are when the fast is done. But remember – you can’t start the fast on your own. You need blood drawn both in the beginning and in the end. You also need a doctor or a nurse with an IV-setup for injection of glucose.
    I had my fasting test done at the hospital where I was admitted after a “morning-coma”. I stopped eating and drinking at 6 pm, had blood drawn for the same bloodtests as when the fast is done. I was lucky and my insulinoma was quite active that day…….. my blood sugar were down to 36 mg/dL at midnight, just 6 hours later. Piece of cake to fast …… Again blood was drawn to see the values for blood glucose, insulin, pro-insulin and c-peptide. Then I had an injection into my IV-drop with concentrated glucose and I got a nice meal which I enjoyed very much that night.
    The fasting test you went through has no relevance for an insulinoma, as far as I know.
    Best of luck to you
    Charlotte

  44. I never had a 72 hr test. My bloodwork was done in the morning after a night of fasting. My bllod sugar was low, my insulin not very high, but my proinsulin was high. I don’t remember the numbers now. Your levels of 33 and 18 sound pretty definitive to me.

  45. Thanks Kim and Nicolai,

    My endo. doctor did do a fasting blood test in June where I ate pancakes and syrup and oj for breakfast after all night fast. and no eating for 2 hours and 2 hours later took blood test. My blood sugar was at 33 and my insulin was 18.4 considered high according to lab slip so that is where the doctor felt I may have an insulinoma. Now I see that others
    have taken a fasting test and I wonder how they start that. Do you drink a high sugar
    drink or just fast for long periods of time with out the breakfast or high sugar drink?

    Thanks for your comments.

  46. I agree completely with Kim. You need blood tests to diagnose an insulinoma. The standard test is the 72-hour fasting test, where the goal is to draw blood when you have very low glucose levels, and then test the levels of insulin, proinsulin and c-peptid.
    The scans should only be used to localise the insulinoma, which is often hard to find.

  47. The way to diagnose an insulinoma is by blood test. The tumors are very hard to find. The CT scans and calcium tests are usually for locating the tumor once the blood tests show that an insulinoma exists. An insulinoma always gets worse I believe. So eventually, the blood test should point to an insulinoma if there is one. Anyone, correct me if I’m wrong here.

  48. Hi Sue,

    I have been reading some of your post’s and I to have a drop in b/s after meals. I have been to Mayo a couple weeks ago and they are 70 % sure I do not have a insulinoma but they did not do the calcium test and the cat scan didn’t show an insulinoma. The doctor said he thinks the b/s drop is due to the fact I had lap gastric by pass surgery. It seams that the patients that have had that done are having these symptoms. Well I was ok with what he said but as time passes and I have the same problems I get frustrated and I am so uncomfortable. I wonder if there are any other’s on here that have had the gastric by pass surgery and have the same symptoms. I get the dam heat surges and I am about to go crazy with them. I noticed that my sugar drops after I eat and I get busy doing house work or any activity. I have not seen my endo. doctor yet since I have gotten back from Mayo. I hope she will have something to encourage me on this whole thing. I still wonder if I have and insulinoma hideing in there. 70% still leaves a lot of room for error. I feel I have been left in limbo.

    I am not putting down the treatment I rec. at mayo. I have a great deal of respect for the doctor I saw and it made sence what he said. He felt my symptom’s were not bad enough to do the other test. I am not blacking out yet. I do get confused and weak and have vision problems at the time the sugar goes down. Just had tp get this off my mind. Hope it is in some way helpful to others.

    Thanks to everyone for sharing and their support. Marylin

  49. Peggy, I live in south Louisiana. I have access to the Houston medical system, or New Orleans medical system. I know MD Anderson is where they are going to refer me to, but I have some emails out right now to a couple of other doctors asking if they can give me a clue on an endo that might actually address my b/s issues. One is from the Houston area, and one is from New Orleans. I apparently have to be tested by an endo before I can see on of the “big” guys from N.O. I”ve talked to one person about a physician at MD Anderson that helped her, but if anyone else knows of an endo in either area that would help, please email me!
    My sugar, and insulin, both went that high, but only during a GTT. I know after just an ordinary meal I’ve tested and got to around 120, then start dropping from there.

  50. You should ask that doctor of yours if he’s sure you’ll be fine with a sugar reading at 40?? I remember someone saying that they were told they were holding their infant while hanging over a railing,.and later fighting with their weed wacker before waking up on the kitchen floor!!
    Sue, now’s your chance! If your doctor is going to refer you to someone,, research and choose a doctor yourself. I know that can be tricky with certain insurances, but I believe if you aren’t getting staight answers then they have to send you to a specialist outside of their network. You’ll have to ask your insurance what doctors agree to contract with them, but you should have a choice. It’s a lot of work , but there is a way to do it. I just wish i had figured it out sooner that 15 years later! What area are you in?
    (Do I remember you saying that your sugar has been up in the 170’s? My sugar did that only once or twice on it’s own during my 15 year experience with insulinoma. The only other times was with d-50 administered from a paramedic.)

  51. I just talked to my endos nurse, and she said he said that since my fasting insulin was normal, that I didn’t need further testing. I know I’ve talked to one insulinoma people who’s fasting insulin was normal, but the proinsulin was high. Anyone else? He has never tested anything but glucose and insulin.

    I agree that he is not taking this seriously. I have read in the Endo. Journal of a few people that had insulinomas removed and they passed their 72 hour fasting test! And, they had normal fasting glucose, just that they had reactive hypoglycemia during their 5 hour GTT. SO, he wanted to refer me to someone at a large medical center, but I’m not sure who or under what diagnosis, if he doesn’t believe I have a sugar issue. I do have a small growth on my adrenal gland, so maybe he’s going to pull that card. I said go ahead and refer me!

  52. Sue,

    I don’t know where you live but there are several large hospitals in the US that will diagnose low blood sugar problems if you are having trouble with your local doctor.

    I had my diagnosis at Mayo Clinic. in Rochester. You can refer yourself though it helps to have your doctor refer you and send all your results. The NIH in Washington, DC often does studies on low blood sugar. YOu can look them up on the web and check out their studies. If you go back to June of this year on the blog, someone went their for a diagnosis. – maybe Audra – If you quailify for one of their studies you get free health care while you’re there.

    If your local doctors are not helping this may be an avenue for you.

  53. Sue

    I totally agree with Laura. What a stupid thing to say. I am so thankful I did not harm anyone driving around lost and confused. I must have had angels everywhere.

  54. Sue, here is a thought. If your endo thinks it is ok to have a sugar level under 30 at any point in time, maybe you need a new endo….. You can absolutely die from low blood sugar whether it is going into a coma or killing yourself or someone else driving a car. Truly, what he said is asinine!

  55. Thank y’all for your stories. I went to my new internal medicine doctor yesterday, and he just said the sugar issues are my endocrinologist’s dept. I was a little disappointed, as my endo just says “don’t worry about the low b/s, it won’t harm or kill you”! I guess I am going to specifically ask my endo for the 72-hour fast to rule an insulinoma in or out. I had a CT scan two days ago, ordered from my gi NP because of bloating in my upper abdomen. So, MAYBE something will show.
    Another question I have is, ok, if my doctor says I just have reactive hypo because my fasting sugar is not low, why is this acceptable that I spend years with b/s dropping out from under me with normal meals?? I’ve had this for many years, but before I got my meter, I just gauged the lows by shaking. NOW, I get shaking, anxiety/irritability, heat surge. I guess my point is, I don’t eat alot of junk like colas, cakes, etc. , so in my mind, my pancreas is sooo over-reacting to normal meals. This can’t be normal.

  56. Hi Sue

    I understand how you feel because I feel the same way too. Let me tell you a bit about me. I suffer from MEN1 this is a disease that affects your parathroid glands, pituitary gland and pancreas. At the age of 22 I had 2 parathyroid glands removed because I had too much calcium in my sugars and therefore had kidney stones which was extremely painful. After the operation which was done in UK I was diagnosed with another adenoma in my Pituitary gland, this was quite scary because it was in my brain. After an MRI was done they saw it was a very small adenoma and with treatment I have it all undercontrol, although I need to have blood tests done every six months to be sure.
    I have been suffering from this disease many years and not once did they check my pancreas. Last year I started have low sugars every now and then and I decided to tell my doctor in my checkups. They did some blood tests and a CT Scan and they also did a 72hr sugar fasting. In just 10 hours my sugars went down to 21 but the doctor said that he didnt think i had insulinoma. Finally when the CT Scan was done it turned out that I had FOUR insulinomas. Therefore I had to have all my pancreas removed and my duodenum. I had my whipple surgery done in Cordoba Spain as I live in Gibraltar. I was 6 hours in surgery spent a month in hospital and thanks God I am much better now. I have lost 20 pounds. My only problem is my sugars as because of my operation I am now a diabetic. They are trying to keep it stable but its taking some time to do so. Everywhere I go I need to take my insuling pen, juices, sweets just in case I have a hypo or my sugars go up. (Its tough but I’,m sure I’ll get there). I have a lot of support from my family and friends which helps me go through this a bit better. I’m glad i found this forum, if only I could speak to someone who had the same op as me it would be fantastic.

    Anyway I’m glad wie have this forum and would love to hear some comments from all of you.

  57. Sue
    I started with fasting sugars that were gradually increasing and within 6 months they started to drop and my insulin levels were rising. The last was a fasting sugar of 42 but an insulin of 45. So I was producing insulin when it was not needed. But it came on very gradually. I was lucky to research the symptoms, came across the insulinoma, and when I saw the endo that was his first thought. I was fortunate it showed up on the first scan. I did not have a fasting test at all. They did my CT scan from the symptoms. I had symptoms for a year that started out very sporadic and gradually increased in instances and also became more severe. Keep searching for answers.

  58. Hi Sue,
    When I woke up in the morning my blood sugar was never extremely low. Maybe around 60. When I did the 72 hour fast my blood sugar wouldn’t drop below 40 until 3:00 pm the first day of the fast.
    That’s when they draw your blood and test you for proinsulin levels and C peptides.
    I did have a insulinoma, they found with the endoscope. Good luck. I’m glad I can post messages now. I couldn’t for the longest time. Thanks for fixing the problem Jon!!!

  59. I do have a question about testing. Has anyone had a waking fasting blood sugar that was NOT low, but fought with dropping sugar all day after meals?? See that’s what I have–with 12 hours of fasting overnight, my b/s is not low, but don’t know if/when it would start to drop as I don’t waste time and start eating when I get up. I’m afraid a doctor will tell me that I HAVE to have morning fasting b/s low, or I just have reactive hypo. I guess there is a 72-hour fast for a reason, huh?–so people like me that don’t drop overnight will eventually drop and show it?

  60. Nooooo, please don’t take what I said the wrong way! I meant it in a good way that meant I wish there was more traffic here. But I understand people with insulinomas are RARE, so there wouldn’t be as much traffic here as, say, my thyroid forum where everyone and their brother has a thyroid issue! I definitely only meant that I was sad that there was no new messages every 10-20 minutes, that’s all. I still go back and reread alot of the posts, catching things I missed on my reading before.
    All these years I just think it is normal for ME to be eating every 2 hours, and carrying sugary foods in my car and purse, or going to kids sports games and making sure I have food with me EVERYWHERE I go!! When I read these posts, it makes me see that, yea, there are other people like me that have food all the time, but they all(or most) have an insulinoma! So, that makes me think that I really need to go through the 72-hours fast.

  61. Debbie
    Welcome to the site and good to hear your Whipple went well. I too had surgery last January and other than not taking care of the weight I gained the last year I am doing fine. Each day I say I am going to diet but by the end of the day I need comfort food. I no longer have insulin issues and life is good. Mine was on the head of the pancreas and they thought I would need a Whipple but made it without one. Boy, the stents were no fun. I had leaking of the pancreatic duct and they had a hard time getting my stent in.

    Sue
    Please ask your questions. We want to be a support to you as this site has been to us. We may not know the answers but we are all happy to share. It may not be answers immediately but I think we all check in fairly often to see who has posted.

  62. Sue, that is too bad you feel that way. The site was down for quite some time, but since it has been back up, I feel like people are responding very quickly. What questions did you have that have not been addressed?
    Laura

  63. Dear Sue

    I think you should just go ahead and ask all your questions. I am sure you will get answers in only a few days if not immediately :-). All of us know the problems about fighting low blood sugar.

    Welcome to Debbie. Good to know that you are behind it all now and are feeling well.

    Take care
    Charlotte

    (just went through laparoscopic surgery 1 month ago and back on my feet again now fighting a really heavy overweight)

  64. Hi Debbie and thanks for the report on the success of your big operation and longterm recovery. Good luck over the next few weeks and months – and congratulations.
    You went through all this so swiftly and fully without finding this site – and you did so well! You had good advice and help along the way from enlightened people.
    This will encourage many who are struggling to get diagnosis and treatment. Never accept any unclear answers. There is a solution to the horrible, frightening symptoms, however drastic it might seem at the time.
    My story was posted way back in January of this year and I can say that my recovery has been complete and uncomplicated except for the post-operative abscess which set me back a few weeks. I too am not insulin-dependent, my pancreas simply switched back on properly. I can eat when I want but must still observe my gluten-free coeliac diet. I can travel – most recently to Istanbul and Canada. My fat belly has subsided almost back to pre-insulinoma proportions – well, nearly… Not bad for 60 years old anyway!
    Life is sweet…

    My good wishes to all who are suffering and to all who are recovering. I shall never forget 2009!

    John in London

  65. Debbie, thanks for your story. I wish we could have more people chatting on this forum, like actually discussing this during the day like other forums. But, not many people write anymore like they used to. I have questions I like to ask of people’s testing, but then there is no one here to answer, or they read it weeks later. And so far, this is the only forum I can find on the internet to talk to people about an insulinoma. By the way, I fight low blood sugar but am not diagnosed with anything yet.

  66. Hello all…I am new to this site but have found it to be extremely helpful. I had insulinoma and on June 11th underwent the “dreaded Whipple” surgery. All is going well, although the recovery has been slow. Anyway I wanted to share my story.

    About 2 ½ years ago I had my first “episode”…I was down in Florida taking a long morning walk on the beach when I began to feel “woozy”…before long I felt like I was drunk. I sat down and somehow recovered enough to get myself home. I passed it off as not having had any breakfast. Time marched on with no further episodes…at least none that dramatic.

    Last fall things began to worsen. In October I had an episode….again I blew it off as I had had minimal food that day.

    Saw t my OB/GYN last December and he requested a fasting blood test. My husband and I went down to Florida for Christmas and I got a call from the doctors office telling me that I had best see my internist as my blood sugar was low on the test …it was 29. That meant nothing to me…I didn’t know how terrible that was. I was not going to be in St Louis until early April, so I made an appointment with my internist, who thankfully is also an endocrinologist. Before I saw him, I had my scariest spell. I had had a good breakfast and went to work with my garden club for a couple of hours in the city park. Leaving there all was fine…the next thing I remember was that I was in a grocery and the world was spinning….I finally figured out where I was, and this is the scary part…I found my car and drove home. I had no sugar feeding my brain so was not thinking rationally, to put it mildly. The thought that I could have killed someone while I was behind the wheel in that state really shook me. The “episodes” seemed to be on the increase during the last few months before surgery. Despite keeping food in me and power bars in my purse, I believe my body was just telling me it had had enough.

    Anyway, underwent the surgery in June, following numerous tests to locate the exact location of the tumor…it was on the head of my pancreas, and Whipple Surgery was the solution given its location. I went in the hospital the night before the surgery so that they could get me on a glucose drip. (Otherwise had I arrived the morning of the surgery, we risked my blood sugar being too low to operate, thus delaying the 7am operation, …got this idea from an earlier post). I got an epidural, which I kept for 5 days, before the surgery began. That was a blessing! Surgery lasted 7 ½ hours…no complications…stayed in the hospital for 8 days then went home,

    I had a stent in me for 3 months in case any complication with the bile duct reconstruction took place(it didn’t)…Stent was annoying, but not uncomfortable. The worst part of the whole deal is that I had never slept on my back in my life . After the surgery, that was the only way I could sleep for a long while.

    Recovery was slow and I am a rather impatient patient. It took 3 ½ months to really start getting back to normal, stamina wise….My core muscles need some work, but that will come with time! I had gained 20 pounds in the 2 years preceding my operation and couldn’t lose a pound to save my life. Since the surgery I have lost over 30 pounds , but it took several months for my stomach to “go down. All in all, I am glad I had the operation and that the insulinoma is behind me. My fasting blood sugar isnow in the normal range and it looks like I will not need insulin.

  67. I took my acarbose, and I don’t really know if it worked or not for sure, but I didn’t have any symptoms of low blood sugar. HOWEVER, I did still eat about every two waking hours. I just got some basic labwork copies back from my doctor the other day, and my nonfasting glucose at 10:45 a.m. was 39!!!!
    I was kind of nervous at the doctor’s office and had brought a muffin in my purse, and I remember eating half of it AFTER the blood was drawn because I was worrying about having not eaten for almost two hours!! Does this sound like an insulinoma?? I’m going crazy with this darn dropping blood sugar.

  68. Hi April,

    Thanks for your thoughts. I am glad I did get a conserative doctor that was not in a hurry to jump in and do surgery. I so like the doctor I had. He was so kind and such a gentleman. He reminded me of the doctor I worked in the office with back in 1959.

    Have a blessed day
    Marylin

  69. Hi Marylin,

    I have been thinking about you this week and hoping that all was well. I am glad you did not have to have surgery yet and also missed out on the calcium test. Hopefully the medicine will work and you won’t have to have the dreaded surgery. Good luck and so glad you are home safe.

  70. Hi to everyone.

    Well I am back from Mayo Clinic. No surgery at this time. The doctor said from what he could see with the test that he did along with my symptoms, he is 70% sure it is not an insulinoma. He did not want to do the calcium infusion test at this time or any surgery.
    I am not sure the name of the condition but it may be (neuroglycopenia) it is brought on by the type of bariatric procedure I had in 2002 for weight loss. It causes the reactive hypoglycemia. It is a condition that does not show it ugly head until two to five years after surgery. A while after you stop seeing your bariatric surgen. The severe drop in blood sugar is potentially dangerous as you all know.
    My blood sugar goes low in the 29 and 30’s and my insulin goes high and I get all the same symptoms as you would get with an insulinoma except I cannot eat sugar and I feel better if I don’t eat. It can be potentially dangerous. You can black out with out any warning. I am not there yet so for right now I am in limbo. I don’t like it.
    I have not heard from my endrocrinologist yet . The doctor at Mayo said he was sending her the findings along with the name of medication I could take to help me. He felt that the symptoms are not bad enough right now. What he did tell me is that I might at some time have to have my pancreas partial removed or most of it depending on what the calcium infusion test results show. It is producing way too much insulin for my body to handle.
    Again my doctor is only 70 sure that this is not an insulinoma and given the fact that sugar makes me sicker rather than better I have to go with his judgment on this for now. I will see my endrocinologist on Nov.20 and hope to find out more. I really hope she calls me before that appt.

    I do want to thank all of you for your help and support. I am keeping you in my prayers. I will keep reading to see how you all are doing and I will let you know how things go.

    Marylin

  71. Sue Just wondering how you have been doing on the medication. Hope maybe it helped some but I know you feel like I do, you had rather have the problem fixed for good. Wishing you well hope to hear from you. Kricket

  72. Stacy,

    I’m sorry you are still going through this! I don’t remember hearing what Dr. Singer from USC told you last. As I remember after you saw him and he told you that your blood work did not show an insulinoma, you were going to call him back and ask some questions…Like how sure is he?? Was your insulin really low? Could the 72 hour fast have not been done correctly? I remember that I was once told that I could have hyperplasia, I think that meant that All my insulin producing cells were overreacting…could be your case I guess, but I also know that some of my endos didn’t think my 72 hour blood work proved an insulinoma. Turns out they were wrong! I got to the point where I would not let my endo at USC tell me that I had to live with it. I think they just got tired of me and finally requested that my insurance let me see the surgeon as a last resort to see if he had any recommendations. Thank heaven he found it and offered to removed it that week! 15 years! If my endo did not send me to the surgeon, I would still be living as you are. My advice would be to constantly call or make appointments with your GP and tell her how terrible you feel. Get it all on record! They cannot ignore you forever…it just feels like forever. If you’d like, look me up on facebook and I’ll send you my phone number.

  73. Stacy, I agree with Laura. I can’t imagine what else could be going on. Ask more questions. Research your symptoms. Take your own blood sugars during the day to establish a pattern against what you are eating. Is your doctor an endocrinologist? If not, you need a specialist to look at your condition. Hang in there and don’t give up. You do need a better life for your family.

  74. Stacy, If I was you I would find out why your doctor thinks you do not have an insulinoma since your sugar dropped. What else is he looking at. Post his answer here and see what others say. It sounds to me like you need another doctor…..

  75. I haven’t been on this site in a long time. Last year I was in the hospital several times due to hypoglycemia. I got sick in March 09′ and now I am dropped extremely low again. I have had two 72 hr fasting tests and my sugar dropped as low as 37 but Dr. said no insulinoma. My doctor told me I am going to have this condition for the rest of my life and I have to live with it. I am not content with that answer. I am a 34 year old woman with a 4 year old little girl and a husband. I don’t want to live my life not knowing from day to day what my sugar will do next. Last Monday my co-worker called the ambulance because I became incoherent in my car. I wish there was a doctor that would tell me more than- You will just have to live with this condition and tell me to chin up. I am praying for concrete answers. It is difficult.

  76. Jackie thanks for your reply. There doesn’t seem to be anyone out there that has had a full pancreas removed. Well thanks anyway I’ll keep on checking

  78. April Hi Thanks

    I posted about an hour ago and I don’t see it?

    Well Ron and I will take off at 6am in the morning and I report to Mayo at 6:45 Monday morning. I will see Dr Service and I guess have some test on Monday. I am to fast prior to appt. If they find the insulinoma I will see the surgen on Wed and have surgery next week sometime.

    Thanks to all of you that take the time to share your story. It is so helpful to us. God bless you all.

    Marylin

  80. Geraldine,

    I did not have the entire pancreas removed so will not be any help. Hopefully someone else can help you. Hope it gets better for you soon. I know they told me I could live without mine but would imagine it would be hard to regulate insulin with your food intake. Hang in there.

  82. Marilyn, all of our 72 hour fasts have been different. Mine was done in my doctor’s office. I went first thing in the morning without eating (my husband drove). When I got there, he did a blood draw and we checked my sugar on my monitor, we waited an hour, he did a blood draw, I checked my sugar (sure enough it was still going down), we waited another half hour and same thing but by that point I was too low so it was over.

    Others have gone into the hospital where they make them eat first so that makes the test take a lot longer. Pretty much, bottom line it is just waiting for your sugar to drop without doing anything to cause it to drop.

    Good luck!

    Laura

  83. Hi All, Have been reading all your blog’s and I thought I knew how a 72 hour fasting test went but now I am not sure. Can someone tell me what they do? I am pretty sure I had one many years ago but don’t remember how it went. I just remember calling the nurses station and telling them I felt like I was going to faint or something and they told me to be sure and not get out of bed???? This was when I was in the hospital for test.
    I go to Mayo on Monday to meet my doctor and I think start test. I kinda want to have some idea of what to expect.
    Thanks, Marylin

  84. Hi everyone.

    Is there anyone out there who has had their entire pancreas removed like me or has been made a diabetic because of the op?? If there is please please write back to me so we can exchange points as I’m having lots of trouble controling my sugars. I NEED HELP PLEASE !!!!!

  85. Laura,

    I know–but I had to do this “test” to prove to my doctor that it wasn’t going to work. I was prepared with glucose tablets, my husband around the house, and checking my blood sugar every 30-60 minutes, waiting for the drop. Boy, it is hard when you are a “zebra” patient for doctors to take you seriously and think outside the box. I appreciate this place where I can read everyone’s story, treatment, and eventual success. It thrills me when people say they can finally skip a meal!!! I’ve forgotten what it’s like to have my stomach growl from being hungry.

  86. welcome all you new comers! One thing all of us have in common is not many medical people take what we have seriously. This forum is a great place to figure out what you need to do. Then you go to your doctor and tell them what you want to do. I can’t even count the number of different medical people that told me to fast before a procedure like an MRI, How stupid to tell someone with an insulinoma to fast, but they do and they do it all the time. Before my surgery, my surgeon’s instructions included no food for a significant amount of time before surgery, when I called him to confirm telling him I would probably be dead before surgery if I did what his orders said, he agreed and revised the entire plan for me. Bottom line, even those who deal with victoms of insulinoma still do not know how to deal with it. You need to educate yourself and take care of yourself. Ending up in a coma or passed out to prove a point, only hurts you (and they still won’t take you seriously!)

    Good luck!

  87. I took the acarbose (1/2 pill) with breakfast and 1/2 pill with lunch. Thought everything was going ok until I just checked it(I’ve been checking it often all day). It was at 56 and I hadn’t dropped enough for symptoms yet, so I can imagine it was going lower and I caught it early. Shouldn’t that prove that I NEED sugar in my diet?!?

  88. Sue The glyset did seem to help with the waves of highs and lows. I had to start off with 25mg and slowly increase dose. I can now eat without the bs going sky high an then dropping into the 40 or below ( it seems to keep me level ) I still have systems from time to time but in all I guess it is better with the medication, I do crave carbs more with this medication but have been able to lose five pounds of the twenty five I have gained this past year.(so thats a plus) Do let me know if you take the meds and how you do. I wish you the best and like all of us hope we found a cure not just a bandaide to get us threw!! Kricket

  89. Hi Everyone. I am so glad I have found this forum. I had my pancreas and duodenum removed in January 2009 due to 4 Insulinomas, the biggest one was 4.9. Due to this op I have been made a diabetic and I am finding it very hard to control my sugars as I have no insulin whatsoever. I would appreciate if there is somone out there with my same problem to write back to me. The only person I could speak to before my operation was your friend Angelique Acolina, who sadly died a day before my op. She was very kind to me and would always give me advice, although my operation was completely different to hers.

  90. Kricket–glad to hear your story. Did the Glyset change your b/s at all, either in a good way or bad way? I’m scared it’s going to give me more lows. It sure sounds like if you started with nausea/vomiting with the meds, and he wants to test, he should be doing the c-peptide and the 72 hour fast for sure. I don’t know why he wants to waste his time looking at why the n/v issue. This does get so frustrating. I told my doctor I’ve handled this for 15 years, and something has changed–it is very hard to manage now, and he just doesn’t understand how this is taking over my life. I have snacks in my house, in my purse, in my car, and can never be caught without food.

  91. To Sue and Jon Mikel Inarritu Sat, Oct 2009 My name Is Kricket and I just read your post and I also have been told I have a possible insulinnoma and my doctor does not seem to want to do any test, she put me on Glyset and that is in the same family as Acarbose and I have been taking it for about two month, . I find that I have alot of nausea and vomiting . i informed her of this and she increased the dose and has ordered upper GI and ultrsound of my gallblader so my thoughts are if I can have these test way not the Cpiptide or 72 hr. fast. is there a doctor out there that can help us? I feel so flustrated that I just want to give up ( my lowest bs has been 19. thanks for any input and thank you for this website. hoping to hear from you. Kricket

  92. No, he has not ordered a c-peptide or a 72 hour fast. And he is an endo that specializes in diabetes, so he’s supposed to be knowledgable about sugar issues. I had been seeing him for thyroid issues for the last 10 years, and just recently asked him to address my increasing hypo episodes. I am a little unsettled also on using the acarbose.

  93. Sue: I don’t think the wisest decision is to wait for an ambulance to prove that you have insulinoma.
    Did he ordered you C peptide? Or maybe a 72-hour fast test?

    I’ll wait and ask for a second opinion, Sue.
    Take care!

  94. That was exactly my thinking, but I’m pretty sure my endo thinks I just have reactive hypo. He tested my fasting glucose(82?) and insulin(8.8) one time and has never done any other testing. He is getting ready to refer me however to a reputable southern institution, so just waiting it out. I’m sure I’ll get all the right attention when I get referred there. Oh well, if I get low enough to call an ambulance because I can’t get my sugar up, at least it will prove what’s going on.

  95. Sue: I mean, one thing is to have Non-insulinoma pancreatogenous hypoglycemic syndrome which is featured by hypoglycemia immediately after eating… but that’s not your case.

    My recommendation is to ask for another opinion.

    Best of all,
    Jon

  97. Talked to the doctor and he wants me to try acarbose(?)–something that keeps your body from absorbing carbs. To me that sounds counterintuitive if there might be an insulinoma, but I will be sure to have some glucose tablets on hand, as I read that it prevents sucrose(cane sugar) from being absorbed. This could put me in a bind if I need to raise a low, so I’ll buy the glucose tablets for an emergency. Oh well, it might show one way or the other if I need sugar in my diet.

  98. O.k. My blood sugar just dropped to 40 and scared the cr@p out of me! I usually “feel” all of the symptoms when it gets in the 50s, and this time I calmly told my husband that I feel like I’m going to pass out. I sat down, then noticed my hands were shaky, so immediately it dawned on me to take my b/s reading. At the same time all of my other usual symptoms kicked in–getting HOT, anxiety, irritable. Sure enough, it was at 40, the lowest I’ver ever had. I didn’t eat anything abnormal, all my usual morning stuff. I have had hypoglycemia for YEARS, but lately just can’t seem to control it. I think I’m going to demand a 72 hour fast, although I did find an article from the Journal of Clinical Endocrinology & Metabolism(vol.91, No.12) that two patients showed reactive hypoglycemia on GTT, did not drop during the 72 fast, BUT did have an insulinoma. I will have that to “bargain” with if they brush me off as reactive hypo.

  99. the fast is either done at your endo’s office or in a hospital depending on your endo. the endo would normally order it.

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