Insulinoma & Whipple triad – Surgery (update)


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.


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

  1. Hi. This message is to Moe who posted on 11/7/16. I wish i knew a way to get email notifications when there is a post here. I also see that some people’s user names are hyperlinked and mine isn’t and i want to find out how to get that to happen.

    Moe–i hope your insulinoma, if you had one, has been taken care of by now, it’s beanbag 4 months since you posted.

    you asked if there was any advice on how to get endocrinologist to diagnose insulinoma without having to test for a lot of other things. In my experience, yes. I had some HG symptoms for years but i thought it was no big thing, it was only at lunchtime if i skipped lunch. My doctor said i had hypoglycemia and i was already managing it in the only way possible, with diet.

    I now know what i didn’t realize then, that i had had hypoglycemia since 2006. Before that, i didn’t have it. I know this from old blood tests i have, lots of them, about 2-3 a year for about 20+ years, and when i started getting worsening symptoms in 2014, i looked at all my old blood tests to see if i had abnormal glucose and saw that i had normal glucose until 2006 and then i started having very low results and moderately low results. i only had one normal range one and about 5 abnormal ones before i stopped getting those frequent blood tests.

    The symptoms started getting much worse. Like you, i was having to struggle with my weight. I wasn’t gaining but i had to eat very light to avoid gaining. That wasn’t normal for me. i was about 3 pounds higher than i wanted to be and couldn’t take it off. I had always been able to take off a small amount of weight like that.

    The symptoms got dramatically worse in 2014 so that i had another blood test after not having one for 4 years, and the glucose came back at 30. i didn’t realize i had had one that low in 2006 and others that were in the low range, after always being normal before, plus others that were under the normal range but not that extreme, no doctor ever pointed it out to me before, in fact the lab had printed something about contamination next to the result.

    When my symptoms got extreme to the point where i think i was having seizures, i live alone so i don’t know but i would wake up laying on the floor, in an altered state of consciousness, unable to get up or to enunciate words, and after about 15 minutes or so, then it would wear off, i had episodes of falling and incoordination, knew something was wrong with my brain. Also, eating something would clear up the symptoms.

    i asked to see an endo and the GP referred me. The endo spent a lot of time with me and took down all the info, lab blood test info, home blood test info, symptoms reports, but he said nothing endocrinological was causing it, he said he thought it was my liver because i had hepatitis c (asymptomatic), i knew it could not be that, he apparently didn’t know much about hep C, but he said to see a liver doctor.

    i went to a gastro doctor and he looked at my blood test results and symptoms and said “I think it’s odd that no one tested your insulin, to rule out insulinoma.” So he did a blood test which included insulin and glucose, and that came back with an abnormal ratio which he said showed that i have insulinoma.

    You could ask your regular doctor to run that test, or you could ask an endocrinologist to do it. The gastro doctor referred me to a better endocrinologist and the endo agreed with the gastro doctor that i did have insulinoma based on that simple blood test. The gastro doctor had already given me a referral to a doctor who could do the endoscopic ultra sound to locate the tumor. He said, “don’t bother with all that radiation, CT scans don’t have very good results finding those small tumors, if it was me, i’d just have the endoscopic US, they have much better success rate locating them.

    i picked a great surgeon who does a lot of insulinoma surgeries, which is not that common, since insulinomas are so rare, people come from far away to have him do their insulinoma removal, staying in a hotel from out of town, and he too agreed that that blood test was sufficient to diagnose insulinoma, although at first he was saying i would go into hospital to have the 72 hour fasting test, and i said that the other doctors said that the insulin result showed i have insulinoma and he said it did, that was right, and i did not have to have the inpatient test.

    he then ordered the endoscopic ultra sound to locate the tumor. So, although it seems to be routine to send people for the 72 hour hospital test, it’s not really necessary according to my gastro doctor, my endo doctor and my pancreatic surgeon who does a large number of insulinoma removals. I read about this on the internet, not everyone thinks the 72 hour hospital test is necessary.

    There are some who say that, especially for patients whose symptoms are clear, as mine were and yours may be, outpatient fasting test can be done (i haven’t read where anyone said the insulin blood test alone is enough).

    Outpatient fasting means, you don’t eat anything after 10pm or something like that, and you go to your endo’s office the next morning and have your glucose testing taken there and they will give you something to eat after the blood test, or you can bring food with you. i did this at my endo’s office. Inevitably, my glucose was very low, low 40s, which for me was kind of high, i was often in the low 30s and occasionally in the 20s on waking using home testing.

    Again, there are a lot of doctors who recommend outpatient testing. I have heard so many stories of botched 72 hour inpatient tests, if your glucose is reliably low in the morning, you could avoid that by just having it done outpatient. My gastro doc didn’t think even outpatient fasting test was needed with the insulin result showing what it did, and the endo and surgeon agreed.

  2. So very interesting … My daughter has suffered hypoglycaemic symptoms since her early teens, finally yesterday she had another hypo episode and was on the verge of passing out and thank fully it was documented in the emergency department … Keeping our fingers crossed that when she sees the endocrine doctor all will be answered

  3. Hi
    I have recently seen an endocrinologist about my low hypoglycemia symptoms and was told that unless they are documented then they don’t believe I need to be checked for an insulinoma. I have had hypoglycemia for many years (undocumented ) but dealt with it thinking there was no cure. Recently my hypo episodes have become worse and Ive gained weight. my physician suggested it may be an insulinoma. Im about 99.9% sure it is an insulinoma. Does anyone have any advice on how I can get an endocrinologist to diagnose it without having a test for all other possible conditions (that are more statistically probable than an insulinoma )?


  4. I’m wondering if anyone is still out there – looks like its been years. I have been having hypo attacks for the last 3 years. I had the 72 hour fast… at 46 hours I dropped to 58. The staff somehow gave me jello that had sugar in it so minutes later i had a reading of 130 and the test had to be stopped. My endro said because i had symptoms at 58 that he would run all the other blood tests and we would have the results needed. Well then the lab messed up and didn’t complete the blood work. It was a horrible situation and the doctor didn’t want to put me through it again. I then had a MRI and it showed nothing. My A1C continues to drop even through I’m on a healthy eating schedule. It use to be 5.3, then 5.1 now 4.8. My fasting is 67-72. I drop into the 60s a few hours after meals during the day. Most of the time when my fasting levels are testing at the lab they’re around 70 and my insulin in 4. None of it makes any sense and no doctor can figure it out. I have to eat literally every 2 hours of my sugar drops too low. It’s a horrible way to live life and I’m so frustrated. I’ve been testing for everything else under the sun and nothing is showing why I still have hypo attacks. I’m dead set it’s an insulinoma, but no one can figure it out. any advice would be great.

  5. Hello. I am 42 years and I’m from Bulgaria. I want to share my long experience with this terrible disease. I apologize for bad English. My first symptoms were 5-6 years ago. I work as a chemist in the Clinical Laboratory and when first I felt bad i test my blood sugar. It was not too low, about 3.7 mmol / l in normal ranges from 3.5 to 6.2 mmol / l. I went to endocrinologist and she told me that I have a fast metabolism and need to eat 4-5 times a day with slow carbohydrates. I began to gain weight and although I trained three times a week I could not lose weight and gram. In the morning my blood sugar was 2.8 to 3.0 mmol / L. Driving, sports and always wore crystal sugar in my ladies bag. From time to time I had hypoglycemic crises and sugar values 2.0-2.6 mmol / l. I went to the University Clinic of Diabetology and I had a glucose tolerance test. They put diagnosed with insulin resistance and hyperinsulinemia and prescribed me metformin. I took him about a month until one day I fell into a hypoglycaemic coma and blood glucose value – 2.0 mmol / l. Good thing I was working and I was immediately included intravenous glucose. Again, they were sent to the clinic for a 72-hour fast and suspected insulinoma. The test was terminated at 48 hours at values: blood glucose-1.12 mmol / L, IRI-17.5 mlU / l, C-peptide 3.5 ng / ml and beta-ketones 1,4 mmol / l. I was diagnosed with organic hyperinsulinism and I was appointed CT. The conclusion of the CT was, vascularized tumor of the tail of the pancreas. My surgeon appoint MRI and the diagnosis was confirmed. On 06. 01. 2015 i have laparoscopic surgery of the pancreas. The tumor was removed by enucleation. Year after surgery values my blood sugar and insulin levels were within normal limits. I have good and not so good days, but after years of torment live a new life. I hope it will be help for people who suffer from this painful disease.

  6. Just to say – for anyone out there who is struggling to have their insulinoma located – there is a Clin Trial ongoing in Basel from which I have just returned. I have had a symptomatic insulinoma for 10 y now and have had numerous procedures to localise it; and a Whipples which failed to remove it… but they found it in Basel on Friday and I will soon be free to live again!!!!!! The team there are amazing, and the Trial can be found on the Clinical trials website — GOOOD LUCK!!! Lyn x

  7. I have been battling with hypoglycemia for 8 years now and have been to different endro Dr’s and getting the same answers and was in the hospital 3 times and never any answers expect for nothing was wrong with me and blood sugar was dropping all the time and finally I found an endro Dr who has helped me with different tests and when I told her my history of having hypoglycemia in my family and diabetes I was starting to think that it was heidtary and she told me I have a insulinoma and I am going to have surgery to remove it and he is going to Laparoscopic to remove it I am so glad this page is here and to see that others have experienced this it is a nightmare to deal with

  8. Havent been on here for ages and see it has been a bit forgotten – I have posted the link to it on the facebook page and told people to check it out for great info and support!

  9. Well, thanks for the reply Jon, and for maintaining the site. The stuff i read from 2008-2009 was very helpful. Very. I’m glad it’s all there and there’s lots more i can read. i wonder why the forum didn’t continue to be active, and why it’s so hard to find an active one.

  10. This message board used to be very active. I found it by googling the name of a surgeon i was referred to today for insulinoma removal. i ended up on this forum where the reply comments were from 2008. Apparently these are the most recent comments. i also found another insulinoma discussion forum where there used to be more discussion but now, there are a few recent posts by a few people, never answered by anyone. I know these are very rare tumors but it was nice to see how active this forum was in 2008-2009, and maybe more recent than that. That’s just as far as i got before i started trying to find the most recent posts. It looks like 2013 is the most recent, so i guess this site has gone dead. i wonder if there is another forum anywhere to discuss insulinoma that is active. i sure could use people to talk to about it.

  11. I was diagnosed with an insulinoma in 2009. I had whipple surgery. it is 5 years later and I am fine

  12. Hey Christine!

    I hope you find some answers soon. I am curious on your comment:

    “My mom came with me and within 15 minutes after leaving the labs for my two hour, my blood sugar dropped to what I think was in the low 40?s.”

    When you say the “two hour”, what do you mean by that? Was this a fasting test? Or, was this the OGTT? I’m curious because I have weird numbers, too, but after I consume any sugar.

  13. I am so excited to find this site. I live in Gilbert AZ and am 36 years old. I found out I was hypoglycemic at around 19 or 20 years old. I have dealt with it and know what it’s like but I became gestational diabetic with my third child and had a glucose monitor. I did fine and was back to normal after the baby. But one day my sugars dropped into the 30’s and I thought I was dying. I told my husband but he thought I was overexaggerating and finally called my sister who told me to put sugar on my gums. My husband finally realized how serious it was and I was starting to black out. This didn’t happen again until this last November. We went for Mexican food for my sisters birthday and on my way home my sugars started dropping but I didn’t realize it since I had eaten less than an hour before. I finally took my sugars and and I believe I was in the 50’s somewhere. So fastforward a month or so later in December out of the blue my blood sugar started dropping drastically and it was very difficult to maintain it. I tried eating complex carbs initially and then my proteins like I had learned to do throughout my life but this was not working. I literally had to eat and drink high sugary drinks continuously. throughout the night I had to wake up 3 times and eat/drink something. I became terrified and went to the hospital. Of course by the time I got there they saw my sugars were normal and sent me home. The next few days I had the same thing happen and knew this was different from my usual hypoglycemic episodes. I called my family crying and they were very concerned. My sister who used to work in an ER came with me to the hospital the 2nd time and the doctor wanted to just dismiss it. I became emotional because I was truly fearing for my life. My sister asked him if they had an endocrynologist on hand which they didn’t but pretty much demaned we get a ct scan and I asked him if this could be an insulinoma in which he practically laughed at me telling me these were so rare he was certain I didn’t have one. I felt fairly confident I did have one since I knew something wasn’t right but so far all of the blood work done at the hospitals came out normal. He told us he didn’t have an endo at this hospital but could call one that sometimes visited this hospital. He only did this because my sister was adamant about. He came back and told us he talked to the endo who said he could get me in within a week. I came in a week later, he listened and decided to run some tests. I held off on the tests because it was a fasting glucose test which I knew would be bad since everytime I’ve ever had them in the past my blood sugar drops to horrible lows. I had another incident on christmas break and finally decided to get the tests done. My mom came with me and within 15 minutes after leaving the labs for my two hour, my blood sugar dropped to what I think was in the low 40’s. I ran out of my glucose testing strips(how ironic) and couldn’t talk, walk right, and scared my mother terribly. I called a few days later to see if they had my results and the receptionist told me the doctor wanted me to get a ct scan because my numbers were high. At that time she told me my C-peptides were at 11 and normal was between 1-4. So they didn’t find anything in the ct scan but when I came in for the results my dr told me that my proinsulins were at 55 and normal 15 so it all but pretty much points to the insulinoma (although he wouldn’t say yea or nea) but did tell me that I needed to be sent to Mayo Clinic since there wasn’t a community hospital around that could handle me. Well my insurance isn’t covered by Mayo and so I am going to be going to Stanford University Medical. I’m trying to ssee a Jeffrey Norton who is the head surgeon. I am on pins and needles waiting to see if he’ll take my case. His receptionist said she was 90 % sure he would but my endo was originally telling me to see a regular endo at stanford first and that going to the cheif surgeon wasn’t the appropriate way to go but when I told the assistant she didn’t necessarily agree and said he would look at my files and let me know himself. Either way I am waiting to see who I’ll be seen by. I just want answers. This thing has taken over and literally I am having to consume sugar all day, everyday. I have gained about 5 lbs in the last month and it’s all very depressing. But most of all I’m scared because I have 3 kids and they are only 5, 3 and 10 months old. I have had to teach my 5 year old how to dial 911 and what to tell them if he finds me unconscious. I feel fairly certain I have this but has anyone heard anything that can help me one way or the other?

  14. 1 year check up after the Whipple surgery for insulinoma. I was at Hopkins in Baltimore – the surgery was open, not laperoscopic (though there are surgeons there that are doing that – the surgeon I had was not one of them). The recovery initially was arduous – a lot of weight loss, hard to eat, spasmodic pain in my mid section which started to get better about 2 and 1/2 months after surgery. Now the only things I notice are occasional twinges of that old spasmodic pain, which tends to occur more when I’m fatigued and a need to not eat high fat foods – which I think contributes to a light headedness/low grade I infrequently get. (Going to monitor that.) My blood sugar levels are usually around the low 100s (three month average of 131) and the endriconologist says that would by pre-diabetic but in my case he expects it will stay at that level. The surgery process – which I’ve been remembering these past days on the one year anniversary – was the most physically challenging thing I’ve ever gone through. I will say, in reading people’s stories, how grateful that I am for the endocrinologist I have at George Washington U. Medical Faculty Associates here in Washington DC and the Johns Hopkins team.

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