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 (“blindâ€) 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.
Went to see my Endo and got the results to my Imaging Tests. Didn’t see an Insulinoma, but my levels are much worse. What they DID see was a liver filled a TON of fat. He doesn’t know what to do with me now, so I being sent to see a UCLA Endocrinologist.
Who knows what’s wrong with me. . .
Hi Wendy
I had a CT scan and endoscopic us here near where I live which both showed nothing. I decided to go to John Hopkins in Baltimore Maryland which has an excellent reputation and more high octane equipment! I did have an octreotide scan and another CT scan. With the Octreo (nuclear medicine) they inject you with stuff that llights up certain tisue. Mine showed nothing. The CT scan showed a spot near the tail but they thought it might be extra spleen tissue (who knew about all this stuff?). Once they went in expecting to find a tumor and it turned out to be an accessory spleen. That’s the thing – nothing is definite with these scans until they open you up and look inside. And you really don’t want to be opened up and have nothing come of it! What have been your symptoms and results of bloodwork? I think my surgeon was skeptical when I first met with him. Then my Mom told him I was a menace on the road! Keep us popsted with your progress and good luck.
Wendy
Hi Ive just found your post, its come through after all the other recent ones….
I was treated at Barts and the Royal London. They seem to do things a bit differently over here!
I dont know what an Octreoscan is! I had the 72 hr fast, CT and MRI, a calcium infusion test and then an endoscopy. They prefer to go into surgery with every test result they can. Even with the results they will tell you that nothing can be 100% until they open you up.
They go on about the pancreas being a very delicate organ and how it is very tricky if it is damaged as the pancreatic fluid is corrosive to other organs. I was told I may have had to have a “whipple” as my tumor was in the head near sevral important ducts. I was glad to have every test they suggested to find out how close it was and hope they would say it would be ok after all! Luckily I was!
Each test tells them something different. Dont be frustrated with having more tests think how lucky we are the NHS will do them unlike the guys in the US who have to fight for every test to be done.
Have you done a 72 hr fast?
Who is your surgeon?
If there is anything I can help you with let me know.
Angie
Homa, I’m so glad you are getting somewhere. I don’t understand why they want you to do the 72 hour test that makes no sense. Its a pain in the ass I’d question them more on that one if I was you. I didn’t have a calcium infusion test. I only did the 72 hour and then the CT scan. Isn’t that amazing all that they found in you after all you’ve been through??
Kim, I am convinced there are many people out there with low blood sugars that have insulinomas, maybe a lot smaller than normal but it is such a freaking milestone to get an insulinoma diagnosis I think many people will go untreated.
Aileen
Ive just read your post about checking your blood sugar – Im the same! I have felt very tired recently – I think its the running around like a mad thing- but when Ive checked my sugars they are a good healthy level! I think it is ‘old habits’ as you say!
Kim
Dont you find that you come across various people who say “oh that sounds like me!” I did! (I actually found it quite insulting at times!) I have a friend who always has something wrong with her and was quite put out when she realised I had something very serious!
I spoke to my doctor about how rare an insulinoma was why did she go for that diagnosis. she told me it was my extensive history and symptoms that all added together. She says she sends loads of people for blood tests every day for one reason or another but it is very very rare that the same histories come along. On the other hand I wasnt diagnosed until last year and they suspect i have had it for 10 years! But then I didnt know there was anything seriously wrong just that things were a bit odd – until the symptoms escalated anyway!
I was lucky my doctor picked it up quickly but there are cases on here that people have been turned away and told there is nothing wrong with them – sometimes it really pays to be a bit of a hypochondriac or at least strong enough to keep fighting for some kind of diagnosis!
The difference is fantastic and I really know what Aileen means when she says she reminds herself how lucky she is!
Homa
Thank goodness you are getting somewhere! Good Luck!
Angie
hey all…
it has been a while since i’ve written (i think the last time was in june). i’ve been in south america since then, doing field work, so it has been challenging to stay in touch. i just thought it was great to read how everyone was doing, and it’s nice to see that some of you who were involved with this site when i first found it are still here! I haven’t had the chance yet to read through the comments of newer members, but i look forward to being able to communicate with you all in the future.
I am doing well…no reoccurence of the insulinoma as far as i can tell. any time i think i may be getting low, i check my sugar, and it always turns out normal…i guess it will take a while to break old habits. but i was back in the field a couple of months after the surgery, and i have gone back to my pre-insulinoma weight, thankfully. it seems like it all happened such a long time ago, but the reality is that i am experiencing a normal life for the first time in a couple of years! how crazy is that? so, i am trying to remind myself, when other things seem like they are so overwhelming, to think how lucky i am to be here in a healthy state.
Homa,
I will be thinking about you as you go for the test this week…please let us know how it goes. Have you found out any specifics for the treatment of MEN-1?
And, has anyone else had more conversations with their physicians about how insulinoma occurs? it seems like with so many more of us being treated, that the medical community would be gathering some data on this!
Homa: I really don’t understand that you are doing the 72 hr. test if they are sure you have an insulinoma! I know what you mean about the testing – its exhausting and stressful. You’re getting very close though! When I had my second CT scan, one doc thought the “spot” was an insulinoma, one doc said no and one said its an insulinoma or an accesssory spleen which is spleen tissue that shows up in strange places. I had a liver/spleen scan which showed no accesory spleen, i.e. the spot was an iinsulinoma. Well it turned out in surgery that I had both! Two accessory spleens as a matter of fact!
Susan: So happy to hear about your Mom. Her life will be much improved now.
Everyone: I wonder if there are many cases of undiagnosed insulinoma out there. The other day I was going in for a mammogram and the tech asked me anout my scar. I told her about my insulinoma journey and she said that sounded like her – sje had to eat all the time, gained a bunch of weight, had an accident while driving one time. I told her to go to an endocrinologist and get checked again (the last time it was looked into was many years ago). I don’t believe someone should have blood sugar problems like that for no reason.
Hi there everyone,
I have been following this site for over a couple of months. Just to say I have been diagnosed with insulinoma and am based in London. Have been through all the diagnostic testing at the Hammersmith Hospital and so far they believe that it is in the tail of the pancrease near the spleen.
The problem I have is that they are saying that the diagnostic testing is inconclusive even though the venous sampling and endoscopic ultrasound both concur it is in the tail and they would like me to undergo more testing. I have been booked in for an ocrtreoscan and an MRI scan. I am failing to see how the less invasive tests are going to throw up more than the venous tests and Endoscpic Ultrasound and feel they are clutching at straws a bit whilst delaying everything which is a bit annoying. They are 100% of the diagnosis.
Sorry to moan but has anyone else had and Octreoscan or MRI scan and had any positiive results from this.
Hi Every one
I went to MD Anderson last week. It was quiet an ordeal. I met with my surgon who is very nice. I saw the CT of my abdamon that showed three little tumor looking things. two on the head and one on the neck of the pancreas. I had an endoscopy done on Thursday which turned out to be a bigger deal than they expected. I had problem with breathing so they had to put me to sleep. a 45 minute procedure took about four hours. They were able to take a biopsy of one of the tumors. I got the good news today that it was insulinoma. It made my day. now we are concerned about the other two tumors or whatever they are. I was supposed to have the calcium fusion test done on Friday and the 72 hour fast and bunch of other tests done on Saturday. After all the complications we had on Thursday, my brother told them that there was no way I could go through another procedure. They agreed and so we came back home on Friday. The first day I got there, I was suppsoed to go for blood work fasting, and I ended up having a major episode. My endoscopy was supposed to be at 11: 00 AM on Thursday, we told them that there was no way i could go that long without eating. They were very nice and accomidating. We got there at 6:30 Am and they put me on the sugar IV. The doctor that did the endoscopy was amazed and surprised. he said that during the procedure my sugar would go from 84 to 52 so quckly. I have been so happy getting a good news that they have found an afirmative insulinoma, now I am worried about having MEN 1. I am going to get the test done for MEN 1 this week. I just pray to God that I don’t have it. I am just busy recoperating from the endoscopy. i have been so sour and uncomfortable, but i am getting better though.
Elizabeth
How did your CT go. I hope you got some good news. Keep us posted.
Lauren
Dr. Evens is very nice. I just hate it that I have to go one more time for more testing. Did you do the Calcium fusion test? They never did the 72 hour fasting test with me. he wants to do it so that no stone would be left unturned. At this point it is kind of crazy to do it though, since the biopsy came back positive for isnulinoma. But I will do whatever it si they want me to do to get this done.
Susan
That is great to hear that your mom is doing well and they were able to remove the insulinoma. you are right about how something so small can cause so much problems.
As for the earlier comments about how rare insulinoma is. My doctor’s nurse was saying that recently they have had a lot of insulinoma cases coming their way. She said that my doctor has had about seven of them recently that have been referred to him. That is a lot, when you consider how rare insulinoma is.
good luck to everyone
Homa
I misspelled the word “pancreas”. How scandalous is that?
Susan
Well, there were a bunch of people at Stanford University Hospital who just saw an insulinoma from my mother today. It was in the distal pancreus. They removed the distal end of the pancreus and the spleen. We are so glad it is gone now. It is amazing that something so tiny can wreak such havoc on one’s health and lifestyle!
She spent the night at the hospital with a dextrose IV, and still her blood sugar level didn’t go above 49. They put her on the highest concentration possible during surgery and it did come up somewhat. After surgery, it went up to 145 with no IV and nothing eaten for over 12 hours!
I got the idea from this site to request an epidural for the surgery. It worked like a charm and she will be on it for a few more days. She was very groggy this afternoon, but said she had no pain. We’ll go back to see her tonight. I can’t tell you how wonderful it has been to read all the reports from insulinoma patients on this site. Thank you for taking your time to be so helpful. It makes a difference!
Susan
Lauren
Have they been told about this site ? They would be over the moon!
Best wishes everyone!!
Angie
How special are we? This is funny-I have a friend in medical school and the professor started talking about insulinomas and actually told the class, which was sizeable, that none of them would ever see an insulinoma in their careers because they are so rare! Lauren
If petscan is clear, is there still a possibility of insulinoma?
Homa: That is wonderful I’m so happy for you, let us know what happens! To answer your question, I went to MD Anderson for testing in May for a few days and then went back in June for my surgery. I did not actually meet Dr Evans until 2 days before my surgery. Good luck! Lauren
Hello everyone!
Susan: I was not scheduled to stay in the hospital so an IV glucose was not an option. However, I was prepared to go to the emergency room if it was necessary. Perhaps not the best arrangement and I was tired and sick of jello, but it worked. Would have preferred to do it differently but my surgeon called the shots.
Homa: When I had my post-op meeting with my surgeon’s PA she showed me my CT scan for the first time. I found out that they were not 100% certain that what they were seeing was an insulinoma. Indeed, the “spot” was not remarkably distinguishable from other areas in that several other areas had the same shade of gray. Perhaps they are seeing 5 possible insulinomas on you rather than 5 definitive insulinomas. Just a thought if you understand what I am trying to say.
Susan, what I have found is getting a glucose IV is not your choice, your doctor has to order it. Mine would not, but he did adjust my diet so I had to fast for less time. I think it is dangerous, but no more dangerous than all those months I did not even know what I had and went driving off to work by myself with no breakfast….
Laura
Elizabeth
Good luck with your tests tomorrow. i will be thinking of you. Hopefully holloween would be a lucky day for the two of us ha, smile. keep me posted. and thanks for the kind words
Good luck
Penny
Thanks for the words of encouragement. It is odd that they found more than one tumor. I am just worried about having MEN 1. I guess I just have to wait and see, As you said it, take it one day at a time. I just have been through so much. I know everyone has. With going through one failed surgery last year, I guess I am tired of getting poked and probed. Everytime you do anything, you have to fast. which is stressful. I do not mean to complain. I am thankful to be in the right place funally and to have a great doctor. I am also so thankful to have all of you guys. It means a lot to have people around who understand what you are going through. It means a lot
Good luck to everyone
Homa
Kim,
Did they not put you on a glucose IV the night before surgery? Would that have been easier than having to drink jello every hour throughout the night?
Susan
Homa,
wow…that seems crazy-5 tumors? it must be a relief that they actually finally found something though! i will be praying for some good answers to come out of all the tests ahead for you. Keep going at it one step at a time!
Penny
Homa,
Hope everything goes well for you! I’m getting tests done on the 31st, too. I’m having an Abdominal CT w/contrast and an Abdominal Ultrasound.
Good luck and I’m rooting for you!
Hi everyone
I just wanted to give you guys an update on what is going on with my insulinoma. they finally found SOMETHING. well actualy several things. They found about five tumors. i am guessing they are tumors, all over my pancreas. Some on the head, some on the body and some on the tail of the pancreas. When i heard the news that they had found somethng I had tears in my eyes from being so happy then i started being worried about having so many of them. I do not think it is MEN 1. I do not have anybody in my family with it. Last time I was at MD Anderson I met with a genetic counselor who asked me a bunch of questions and ruled it out. we may do the test for it any ways. If I have it then it is a rare version of it. Nothing is simple with me I tell you. The interesting part is that they found the tumors through CT. I had about four other CT done in the last four years and none of them showed anything. The last one was three month a go when i had a spiral CT done. Maybe the tumor has grown, but it goes to show you how important it is to go to a place with a lot of experience in tumors. I am going to MD Anderson from October 31st to November 2nd to do some testing. They want to do an endoscopy and do a biopsy if they can. i think they are going to do a biopsy of my liver. I do not know exactly all the tests that they are going to do, all i know is that I will get a bunch of tests done and meet several doctors. I hope after all this they can schedule surgery. I am sure ready for it.
Lauren
I am meeting with doctor Evens on the 31st. he is the one that has ordered all the tests that I am going to get done. I just hate not knowing what all I am going to get done. How many times did you go to MD Anderson before your surgery? I will definately tell him that you said hi. Wish me luck
Best wishes to everyone
Homa
Angelique, thank you for your kind wishes. I’m glad they located your tumor and you are doing so well. My mom will have her surgery at Stanford University Hospital in California. Her surgeon is Dr. Jeffrey Norton. He invented the calcium angiogram for locating hard to find tumors. We hope this works for my mom, and that at 82 she can handle such major surgery. She has two more weeks of battling low blood sugar levels before the scheduled surgery. We pray all goes well!!
Susan
Hi Susan,
Where is your mum having her surgery?
My insulinoma was never located until they opened me up and there it was sitting between the head and neck of the pancreas. They managed to do a distal pancreatectomy by removing the pancreas from part of the head down and also removing the spleen therefore preserving part of the head. My recovery was a little slow though I was only in hospital ten days post operative. Today, I still produce my own insulin and the only medication I need are enzymes in the form of Creon. I do really hope everything goes well and please keep in touch.
I have some more news regarding my mother. The calcium angiogram seems to indicate the tumor is in the uncinate process. That is near the head of the pancreas, I think, which, from what I’ve read, makes it more difficult to remove. At least they know approximately where it is, which is helpful. My mother got a cold and a bad cough, though, so surgery needs to be postponed a couple of weeks. She has gone back to her home in Colorado and will return in the beginning of November for surgery. At one time she was afraid of having surgery, but now she just can’t wait to have it over and done with. We are glad there is hope.
Hi Angelique,
I’m an American with British (English/Scottish/Irish) descent. I AM weird, aren’t I, lol? Like I said, my Dr’s colleague saw only one documented case that was like me. She was my exact age and had an Insulinoma. It’s weird because I hardly eat at all; maybe one meal a day or so. I also have terrible tachycardia (184 beats resting) and suffered from Fibromyalgia for the last thirteen years. I have no idea why I’m hyperglycemic. It first appeared six months ago when my Insulin levels were elevated for the first time ever. It has gotten higher with each test, until the levels freaked my Endocrinologist out the last time he saw me. He said it would make sense if I was taking Insulin and Anti-Insulin Antibodies appeared, but I don’t and never have. Heh! I’m such a FREAK, lol! XD
Elizabeth,
The symptoms you describe do not make sense to me. If I were you, I would persist to be properly investigated, even if it means going through some hell. I went through hell and back cos different doctors came up with different results. There are a lot of tests to be done to determine a possible insulinoma. One of them is a three day fast. Your sugars are supposed to drop pretty low less than 2.2mmols or below 50dll. I never experienced hyperglycaemia except after a lot of I.V glucose. Where do you come from? Are you American or British? I don’t think Proglicem (diazoxide) is the answer – it could make your sugars go higher. Hyperglycaemia needs insulin treatment. An insulinoma is a tumor that produces insulin – your diagnosis does not make sense to me. Please have yourself checked out properly. You really are a mystery. xxxAngeliquexxx
HOMA: That is WONDERFUL news I’m so glad you got Dr. Evans! They call him the wizard over there. He is very efficient. Even my dad loved him and my dad is hard to please. He is very experienced in the pancreas, he said thats where he lives and he has done many insulinoma surgeries. He has a team of two doctors under him and I was visited by all three at least two times a day during my recovery. Tell him I said hi! You have nothing to worry about, let me know how it goes!! Lauren
Wow! I can’t believe I have found such a site. I went through hell with my insulinoma and had surgery in Cordoba – Spain 4 years ago. i am from Gibraltar and spent 3 years back and forth from St Mary’s in London and Hammersmith Hospital with little answers. Surgery was a godsend and I now love my new quality of life. I would love to help all those who are going through hell with their insulinoma symptoms and poor quality of life. Investigations prior to surgery really drag and I always felt far from human. xxx Angelique xxx
Homa, I’m sure your first surgery was much more extensive than mine! I know what you mean about waiting. Even though I think things went pretty quickly after I was diagnosed, every step seemed like an eternity! It sounds like you are heading into good hands. One thing about endocopies, they are not all the same. I had one at my smaller hospital up here but they said at Johns Hopkins that they would probably have had better luck there – just that the doctor would be much more experienced etc. etc. Good luck and do keep us posted. Thinking of you and everyone else. Kim
Peggy
well, I finally heard back from MD Anderson. My doctor was not comfortable treating me so she send me to someone else with more experience in this area, which I do appreciate. The good news is that they finally did see SOMETHING, or I should say several things. i am not exactly sure what they found, but they send a fax to my brother who is supposed to be the reffering doctor and he will get a copy of all the important information. It just said that they found four or five nauguals or something. We just have to eait now to see what this new doctor wants to do. thanks for thnking of me, and I will keep you posted. If anyone knows how frustrating this waiting game is, it is me. I am hoping and praying that you hear some good news soon.
wishing you the best
Kim
I am so glad to hear that your surgery went well. wow, you went hiking after one month, that is very impressive. After my first surgery, I was just able to leave the house after a month, I could not walk much, i would huff and puff after ten minutes. I was in a lot of pain. of course I had a very extensive surgery, You are right though, being in good shape and walking after surgery helps a lot. i am praying that my recovery time would be shorter when i have my next surgery. Good luck with recovery
Lauren
I have been referred to Dr. Evens, I think he is the same doctor that did your surgery. They said that he is an expert in pancreatic tumors. I feel really good that he just did your surgery. I got a good feeling about it. i just hope they get back in touch with me soon to let me know what is the next step. I think he wants to do more testing. I probably need to go back just to see him. He wants to do the endoscopy. My brother let them know that we had done that, but we shall see. I will keep you posted.
Godo luck to everyone
Homa
Hi Kim,
Ironically, there is no diabetes in either my father or mother’s family. There’s not even any obesity, yet I’m way over my recommended weight. As of now, I am not taking anything for my hyperisulinism. My Dr. didn’t give me anything for it, although with a number like that, I think I should be. ::shrugs:: I see him on Wednesday. He wanted me to have the imaging tests done before I saw him again, but my insurance is being difficult and still hasn’t authorized them yet. (it’s just fight, fight, fight with them.)
I had more blood tests performed, to see my insulin and C-Peptide levels. Hopefully they can shed some more light on what’s wrong with me.
Peggy,
Thank you for your kind thoughts. I thiink of you often and pray that you will find an answer soon. In the meantime I send you strength and best wishes.
Richard,
Welcome. I just had surgery on September 27th. The insulinoma was on the tail. My incision is vertical, about 7 inches. The hospital got me up and moving around ASAP – sitting up, walking. I think that really helped move things along. By the end of my hospital stay (5 days) I was even able to sleep on my side. I had an on demand button for pain meds, then was switched to percoset the day before i left the hospital. Percoset made me feel terrible. Spreading out the dosage helped a bit but I kicked them after 2 -3 days and just took aspirin. By then the pain was not as bad. 2 weeks after surgery I went on a small hike up a mountain near where I live. I think it really helps to have strong stomach muscles going in. The better shape you’re in, the faster you’ll recover, of course that’s barring any complications like infections etc. I still get tired easily and have not been very hungry so I have lost soe weight (that will change!). Best wishes to you!
Richard, mine was in the head of my pancreas and they did about an 8 inch incision straight down the middle of my stomach. Recovery time was about a month, full recovery, back to work, excercising, etc. was 6 weeks.
Richard
Hi to you as probably only our third or fourth Uk resident!!!
If you can be bothered all my posts have all the info you could need but there are so many now you may get bored looking! However if you have any particular questions or if I can offer any help please feel free!
I was under Barts then the Royal London and they were brilliant!
I cant write much now but post back and I reply!
Good Luck
Angie
Wow….. what a fab site this is.
I’ve just been diagnosed as having a suspected insulinoma in the head of my pancreas and up until today I’ve felt that I’m a freak with something that nobody else has heard of let alone been cured of.
Looking at some of the responses on here I guess my journey is a fairly short one.
I first knew something was wrong in about November 2006 when I was in a meeting and made a 5 second sentence last about 5 minutes. Everytime I started talking I lost track of what it was. After the meeting I had some food and felt so much better. Dismissed it as a one off but the attacks kept happening.
This year I lost my driving licence due to a seizure and after a second one two weeks later I was told I was epileptic by our beloved NHS in the UK, sent away with some pills and told to come back in 7 months time.
Not convinced I used my private medical cover and sought a second opinion in March of 2007.
My private consultants informed me that my blood pressure was too high and that there was a problem with my blood glucose levels. Both of which may have caused the seizures.
In August this year I had a kidney removed which was causing my high blood pressure (now cured of). They also gave me an MRI of my pancreas, to investigate a possible reason into why my insulin levels are so high. As well as numerous blood tests.
I’m now waiting to see a consultant at Kings College Hospital in London later this month.
The only things that bother me are, how long is the operation if it’s open/keyhole and what is the recovery time?
Kim,
Congratulations, I’m happy to hear that your surgery went well and that this is all behind you now. It gives me hope every time someone is cured of this crazy disease. Hopefully your recovery time will go by quickly and as painlessly as possible. I’m sure your family is relieved to have you home and back to your normal self.
One day I woke up in the hospital with my daughters bed sheet wrapped around me. The paramedics just grabbed the sheet with me in it for transport. I guess i had done the same thing as you and crawled into her bed. She is 15. Someday I hope to have this all behind us too.
Hi Elizabeth,
Wow, I thought I was the unusual one. High insulin and still high sugars, what a bummer! I haven’t heard of anyone with that problem. Is there any diabetes in your family? I always assumed that some diabetics could have high insulin levels because their insulin just doesn’t work?? So does he have you on proglycem to stop insulin production yet? I hope you find an answer soon!
Susan,
Was your mom able to have the surgery? I’m interested in finding out how the calcium angiogram went. I hope they were able to find what they were looking for and that your mom is doing o.k. Please keep us posted.
Steve,
M.E.N. 1? I think you get the prize. I don’t remember there being anyone else on this sight with that diagnosis. My mom’s doctor thought that is what I may have, since she also has pancreatic problems as well as kidney and I’ve been manufacturing kidney stones like crazy since I was 12. It’s hard to get a doctor to offer genetic testing, or whatever it is they do for that. So what’s next for you?
Homa,
Did their tests find anything??
I get a little discouraged at times and that’s why I haven’t posted in a while, but I still am thinking of everyone who has had to go through this, and I am thankful to be able to share our stories.
Hi everyone! Newbie here! I stumbled along this website because I was looking for info on Isulinomas. I am currently undergoing tests to see if I have one. My Insulin levels are at 220 fasting, and my Endocrinologist is thinking that is being caused by an Insulinoma. For the past several years I have been suffering from what he thinks are the effects of Insulinoma. I am HUGE! In six months I went from 165lbs to 200lbs. All my weight is in the abdomen. The rest of me is fairly small. I put on at least two pounds a day and I hardly eat anything; one small meal a day!
I am constantly tired; unable to sleep at night. (I sleep roughly two hours a night), am confused and dizzy all the time; I have crippling headaches that are not stopped by any type of painkiller, blurred vision, and thirst. But what IS unusual about all this, is that I am also HYPERglycemic! My blood sugar ranges around 140-250. My doctor told me that a colleague of his who recently passed away had 1 documented case like me in the 60 years he practiced that turned out to be an Insulinoma. Other than that, I’m a complete mystery.
Anyone else heard of someone like me or had my symptoms?
Hi everyone,
I am back home after surgery on the 27th – feeling well and relieved that it is over and that all went well. Johns Hopkins was truly wonderful. I felt every step of the way that I was in good hands. I spent 5 days in the hospital, then went to a local hotel for three, then home. My insulinoma was about 1.3 and was “hanging off” the tail so my pancreas is intact luckily. Even though they didn’t show up on the liver/spleen scan, I did have two accesory spleens and those are gone now too (not sure why they take them out).
The day before surgery they made me stick to the clear diet after noon. I got up every hour in the night and drank a cup or so of Jell-O. That did the trick but I can tell you I was very anxious and we had all kinds of Plans B!
Homa: I had an octreotide scan done at JH and it showed nothing but then again even the 3D CT scan they thought they saw something on was very iffy.
It is such a great feeling to not have to worry about my blood sugar anymore. I wake up in the morning like a normal human being. I am barely eating anything (that will change!) and my blood sugar is fine! What a very strange affliction we (have) found ourselves with!
Good luck to everyone. If you are battling an insulinoma now, I hope you find a solution soon. I’ll keep checking in to see if I can be of any help to anyone.
Best wishes!
Kim
You’re right, Lauren. Her level even went up to 53 for a short time, only to plummet to 20. They took their final reading at that level and then gave her glucose. Tomorrow she will have the calcium angiogram to hopefully narrow down the location of the tumor. The results of that will be back in several days and hopefully she can have the operation next week. We are blessed to have Dr. Norton as her surgeon. I found out about him through this web site!
Susan N.
Homa, that is great you are in the right place. Good luck and keep me posted!
Susan, don’t be surprised by her sugar levels. The body has a way of kicking in reserves for survival. Like I posted before my blood sugar hung arond 50-55 for like 10 hours or something like that I can’t remember exactly and I was told by my surgeon that my insulinoma was one of the bigger ones-1.9 cm.
Lauren
I’ve been reading all these posts regularly but haven’t posted myself for a few months. My mother who is 82 is now at Stanford Hospital undergoing the 72 hour fast and has been lingering at sugar level of around 40 for about 4 or 5 hours so far. We’re surprised it hasn’t gone lower. Her CT and MRI didn’t reveal anything. She is scheduled to have a calcium angiogram after the fast to try to locate the tumor.
I can’t tell you how wonderful it has been to hear of all your experiences. I will share more of ours as they happen.
Susan N.
Hey guys, its been a while since i posted. Just got an update and wondered if anyone here has a similar Diagnosis. Looks as if i have M.E.N 1 associated with the Insulinoma. my calcium levels are high and they think that i have Hyperparathyroid, and that if so, then the diagnosis culd be the MEN1. anyone else have this? Thanks! hope all are doing well! sorry its been so long since checking in.
Steve
Hi Everyone!
Ive been keeping up with all the post – although I have missed a few!
I do think that if your hospital does not understand about the blood sugar levels you are in the wrong place!
Ive copied some of this from a previous post but it may help although this is the UK and they do things slightly differently!
When I went in for my 72 hour fast I went in the night before and ate a meal at 5pm and started fasting at 6pm. This was because they did not want me to be going hypo on the way in, this could be especially worrying for you if you have to report to the hospital in the morning without eating breakfast.
We use a different scale. Ive been trying to work out all the levels everyone quotes. (0.6 mmol/L = 10 mg/dL – ie 1.8 mmol/L = 30 mg/dL) Are you impressed!!!!!
My endocrinology tests came back as 2.5 which roughly 40. Anything lower than 50 is considered unusual and below 30 is serious. In the Uk if you go below 1 you are probably in a coma! which would be less than 20.
When I had my 72 hr test they stopped it at 1.6 which would be 26 ish but I went in at 36 which was low anyway. I had to have two readings below 2. (These figures are approximate!) This was 30 hours into the test in the middle of the night.
When I went in my sugars had been 2.2 or 36 all weekend and they didnt believe me – I thought id be out in 6 but the following morning the levels were 4.5 – they had gone up! It threw everyone into confusion, as it happened they came down quickly during the next 6 hours. What had happened is my liver had kicked in and produced glycogens that temporarily raise your blood sugar – this is the body’s defence to save your life!
I ended up dreaming about biscuits after 24 hrs it was really odd as I kept having to remember I couldnt have anything! Lucky the NHS food isnt that good as I actually didnt feel I was missing out!!
We think that because I had had this condition for so long my body operated on a very low blood sugar all the time and I was used to it.
I could have an episode on 3.5 but at other times I could be fine on 2.5 so nothing really was consistent. One day I felt faint tested my blood and I was 1.6 – that really freaked me out!
I never really had blackouts but I ‘lost time’ one morning – it was very near to my upcoming surgery so I think if I had gone much longer I may have experienced more serious symptoms!
Before my surgery I fasted from 12 midniight and my op was 12 midday. They wanted to put me on a drip over night but I couldnt see why when I wouldnt eat overnight anyway! I ended up on an Iv at 4 in the morning anyway for fluids!
St Barts in London is the best place in the UK to deal with this all the nurses are trained and know exactly what to do with a hypo situation. Helen (as above) went to a more local hospital first and they didnt have a clue what was happening! In general people do not consider a drop in blood sugar to be so serious – I didnt until I fully understood what could happen to me and Ive been luckier than most people on here who have had blackouts. I read with horror about blacking out while with the kids but you have to carry on living as normally as possible.
We went to Goa, India, in August – I had trouble with upset stomach for most of the two weeks and didnt eat much! I certainly could not have survived if I had not had my op! In fact it really made me think! I have more trouble with my digestion now which Im sure is due to the loss of my gall bladder but it is a worthwhile sacrifice to feel as normal as I do! (malaria tablets dont help either)
Peggy, Homa, glad to see you are still fighting – The calcium infusion test would divulge more accurate results than not having it! Especially as they are having trouble finding anything!!
Sorry this is a bit long!
All the best, I am thinking of you all!
Angie
Lauren
Thanks so much for reassuring me about how good MD Anderson is. I went there this week and was so impressed by it all. The clinic, the doctors and the staff were super nice. I got bunch of tests done. I did not have to do the 72 hour fast thank heavens. I did the Octreotide scan which I had never done before. Did my fifth CT. I am just praying that the imaging that they did would shoe the tumor. My doctor’s name is Dr. Perrier. she is very nice. The endo’s name is Dr. Shah. Dr. Perrier said that if the tests that we had done doen’t show the tumor, I got to go back for more testing. Probalby the Calcium fusion test. Wish me luck
Hi Everyone
I wanted to ask, has anyone done the Octreotide scan and has it been successfull? It seems like my episodes are becoming more frequent and I am continiously gaining weight. no matter what I eat. Last week was the anniversary of my first surgery and all i got left of it is a incisional hernia. I know that they can operate on it when they go in for the insulinoma.
I know what you guys are saying about being stressed out when they tell us to fast. I was told that I needed to fast Monday morning when I went to MD Anderson. well we got there and at around eight theirty while I was waiting for preregistration, my brother went and told them that I really needed to eat soon. they checked and told me that I could go ahead and eat something and did not need to fast for the blood work. I drank a small bottle of apple juice and a pack of 100 calory snack. They did the blood work half an hour later. The next day i found out from my Endo that my sugar was 35. This was after the apple juice. and the thing is that I was not symptomatic at all. I would have hated to see how low it would have been if I had not drank the apple juice. I had an episode this morning and my sugar was 35 at the time. I do not know why sometimes I can have an episode when it is that low and sometimes I do not.
I would say this about MD Anderson. Anytime we mentioned that I had to eat otherwise my sugar would drop really low, they took us really serously. Which is something I have not seen in any other place.
Kim
Good luck with your surgery and I am sure everythng would go great. Keep us posted.
Laura is so right. When I checked into the hospital for my 72 hour fast even my Endocrinologist thought I’d still be there the next day. I told him I wouldn’t last much past lunch the first day but he laughed at me.
Sure enough just 4-5 hours after I checked in on was on my way home. Most of the nurses were completely clueless about what was going to happen. My blood sugar dropped to 37 during my stay.
Kim, I second what Laura just said that is SOOO true! I don’t care where you go they never believe that your sugar will drop that low and once it does you can’t explain or demand anything because you are spaced out. Years ago my husband almost punched out the nursing staff when I went in for a simple D&C and of course you have to fast and they would not listen when he kept telling them to test my blood sugar andit got so low I blacked out. Most hospital staff are completely cluless when it comes to hypoglycemia.
Kim, one more thing, you need to make your surgeon understand how serious you are about this. Most people in the medical field really blow off hypo-glycemia even the surgeon who is going to do your operation to cure you! When you get to the hospital, you need to make sure the person who goes with you is very vocal and can get you the sugar you need. They never believe how low you go until they do a test themselves! Good luck!
Kim, well at least you have a diagnosis! That is good news at least. As for the clear diet, my pre-op paperwork said the same thing. I called my surgeon very concerned about how to keep my sugar up on a clear diet. I know most of the people on this website were admitted to the hospital and did their clear diet while on a glucose IV. My surgeon did it differently, he said I could eat whatever I wanted to until 6pm the night before surgery. Then from 6pm-12 I had to do clear, then nothing after midnight except glucose gel. I ate 2 packets of gel going to the hospital and in the pre-op waiting room and when they called us into pre-op, my sugar was 36. It is really, really hard to keep your sugar up without eating “real” food. I would definately have this conversation with your surgeon.
They found that my spleen is normal so that what they are seeing on the CT scan is most likely the insulinoma so, I am scheduled for surgery on the 27th! Does anyone want to share their pre-op experience? I am wondering what it will be like to be on a ‘clear” diet for 24 hours beforehand. Will i constantly need to be drinking juice etc. to keep my blood sugar level up?
I was an exception to the 72 hour test it actually took my sugars 12 hours to drop to below 40. I was astounded and they explained to me that since I’d probably had my insulinoma for about 20 years, my body had gradually adapted to functioning with low sugars. I ate something at 3 in the morning and then went in for the test that morning around 9. My blood sugar was 39 when I got there but that wasn’t low enough so they made me keep testing and my blood sugars actually went up and lingered in the 50’s for hours and hours. After 12 hours they finally plummetted. My insulin levels were not that high but my proinsuin levels were very high. You never know how your body is going to react.
Karen a couple more details if you want them. Usually you go in first thing in the morning before you eat if there is someone to take you in. When you get in they check your sugar usually via a blood draw and via a portable monitor. Then you wait an hour or so and they check again. Then you wait an hour or so and they check again. If your sugar continues to drop, the test is over. If you read above, I think I even entered in what my numbers were, but I imagine I started below 50 and went down from there.
Karen, Kim is totally right. My 72 hour fast lasted less than 2 hours! As for going that long without eating, after my surgery it was almost a week before I could eat, the bonus is you lose weight! The fast is done in the hospital or a doctor’s office and it is very safe and is the most painless of all the tests I had to go thru! good luck!
Laura
Hi Karen,
I haven’t done the 72 hour test myself but my understanding is that they have you fast in a supervised setting until your blood sugar drops to a certain level (I think somewhere below 50). The hallmark of insulinoma is a low blood sugar with a high insulin or proinsulin level at the same time so they will look for that.
There are many entries about the 72 hour in this site. It sounds like most if not all of the participants went for less than 8-10 hours before their blood sugar dropped to the required level. So you’ll only be fasting until your blood sugar drops enough.
Anyone else, correct me if I’m wrong.
Hello, can you tell me what happens when they do the 72 hour test what happens….how do you go that long without food….and what are they looking for….that is the next thing the doctor wants to do …..thanks karen
Kim, that is true when I did my 72 hour test my insulin level was not that high however my proinsulin level was very high, and they explained to me that proinsulin is the precursor to insulin, proinsulin eventually converts to insulin. I had a 1.9 cm insulinoma.
Hello all,
Well my scan did turn up something but they are not sure if it is insulinoma or an accessory spleen. I go for a liver/spleen scan tomorrow to rule out the accessory spleen.
Just something of interest. They test for proinsulin to rule out someone’s injecting themself with insulin to make their blood sugar drop and get attention. High proinsulin is as good as high insulin when combined with a low blood sgar level points to insulinoma.
Homa, I am doing awesome! I would absoultely recommend MDAnderson in Houston. The surgeon I used was Douglas Evans and he was awesome. He has removed a lot of insulinomas. He is specifically a pancreatic surgeon. He said the pancreas is where he “lives”. He is very well respected there, they call him the “wizard”. The care there was wonderful. He had two doctors under him. I was in the hospital 2 weeks and every day Dr Evans himself would visit me at least once and his two doctors would visit me 2x a day as well. When I first went there I met with a endocronologist Naifa Busaidy. She was wonderful. After giving her my story she scheduled me for a spiral CT scan and the 72 hour test. She gave me her mail address and when I got home I would email her and she would always respond, sometimes within 30 min! She called me at home to tell me they found the tumor and she gave my case to Dr. Evans whose secretary called me and scheduled the surgery. I first went to MD Anderson May 5 and my surgery was June 7 so they are very efficient. Dr. Evans gave me his cellphone number he was excellent, my dad loved him and my dad is hard to please. A week after I got home my incision was leaking a lot so I called his cell phone number and he called right back. I am kicking myself that I didn’t get all of this taken care of years ago because its the best thing I ever did! Good luck and let me know if you have anymore questions! Lauren
Homa, I worked with a Dietician before my surgery and it really helped me not to keep gaining weight. She suggested eating no more than 30 carbs at any “meal” and I do use that word lightly, and in addition to eat every 2-3 hours. So in essence you get to eat 6-7 meals per day, but they are all very, very small. It does help your sugar and it is really hard to gain weight when you are eating like that.
Kim, my blackouts were pretty bad as well though I did not have any in the morning like you described. With mine, I would usually have about 5 minutes where I would know something is wrong and then black out. One time, I was in the house with my 3 kids when my husband was outside working on the yard. I had the sense to walk to the front door and tell him I needed help, next thing I knew I was sitting on the floor of my kitchen with a spoon full of peanut butter in my hand. Evidently I had almost backed over a railing holding my baby and the other 2 were crying it was really, really awful. the worst thing about it is that this was not the only episode, there were many many more. In the 2 months before my surgery, I had made a “rule” that I would not be alone with my kids, how crazy is that, but I was petrified of hurting them or allowing them to get hurt while I was blacked out. Surgery is amazing though, my sugar has been great since!
Good luck all! Laura
Homa, I worked with a Dietician before my surgery and it really helped me not to keep gaining weight. She suggested eating no more than 30 carbs at any “meal” and I do use that word lightly, and in addition to eat every 2-3 hours. So in essence you get to eat 6-7 meals per day, but they are all very, very small. It does help your sugar and it is really hard to gain weight when you are eating like that.
Kim, my blackouts were pretty bad as well though I did not have any in the morning like you described. With mine, I would usually have about 5 minutes where I would know something is wrong and then black out. One time, I was in the house with my 3 kids when my husband was outside working on the yard. I had the sense to walk to the front door and tell him I needed help, next thing I knew I was sitting on the floor of my kitchen with a spoon full of peanut butter in my hand. Evidently I had almost backed over a railing holding my baby and the other 2 were crying it was really, really awful. the worst thing about it is that this was not the only episode, there were many many more. In the 2 months before my surgery, I had made a “rule” that I would not be alone with my kids, how crazy is that, but I was petrified of hurting them or allowing them to get hurt while I was blacked out. Surgery is amazing though, my sugar has been great since!
Good luck all! Laura
Well, here’s a laugh for you guys. I woke up this morning, naked, in my daughter’s bed! Fortunately she is 14 and was spending the usual eons of time getting ready for school in the bathroom. I must have gotten up, taken off my PJ’s and climbed into her bed, all while she was in the bathroom! Let’s not get too Freudian here!! This is the second time I have had early morning wanderings. I suppose I need to set my alarm earlier!
Anyways, I have gotten myself onto Dr. John Cameron’s radar. I’ve gone down to Johns Hopkins for an octreoscan and go back tomorrow to meet with Dr. C. for the first time and find out the results of the scan, maybe have a high octane CT as well since the one here showed nothing.Keeping my fingers crossed that somethiing shows up. I think people are starting to think my antics aren’t so funny anymore! (There are a few you haven’t heard of – maybe we should start a new log!)
Hang in there Homa and Peggy. I think of you everyday – it gives me strength knowing you are out there somewhere but I truly hope you are able to beat this thing soon!
Good luck and best wishes from Kim
Susan
I am so glad to hear that you are doing better. It takes a while to get back to being one hundred percent after surgery, but sounds like you are on your way. Thanks for sharing about how quckly you lost the weight after surgery. I know I will lose it once I get done with the surgery, I just hate buying new clothes now, lol. I sure hope I won’t have to buy a new wedding dress, Good luck with recovery and thanks for the well wishes, i will definately keep you guys posted
Peggy
You and I are the veterans in here, Most people come here and get their surgery done and get well. Hopefully we will be there soon. Like you, I have had most of the tests done and they showed nothing. The only one I have not done yet is the calcium infusion. Maybe that will be the one. I just hate the thought of going through all those tests all over again, but I do not have any other choice. I do feel good about MD Anderson. The main thing is the doctors finding the tumor, that is what I worry about. I am hopefull that they will find it though.
What kinds of tests have you done. I remember reading on your earlier post that you have not had the calcium infusion done. It may not exactly pin point the location of tumor but it may show the general area that it is at, which si better than nothing. I hope your body will adjust to the new dozage of your meds and it won’t cause much problem. Thanks for the well wishes, It is a very nice feeling to have you guys, since you know what it is like to go through all this.
good luck
homa
Homa,
I hope you will feel secure in the hands of the doctors at M.D. Anderson. I guess it will all depend on what they find with the tests they perform? Congratulations on your wedding. I hope that everything will go as planned.
Thanks for asking how I am doing. With all the tests they’ve performed, they haven’t been able to find a thing. So they have just increased my medicine which makes me retain water like crazy and swell up like a baloon! My sugars are a bit higher, but now I just feel low at a higher
level. Maybe I’ll get used to it.. I continue to hope for another answer or some new tests to be developed.
Homa
My insulinoma was removed in July. Over the past 3-4 years my weight fluctuated quite a bit. At one point I had gained 30 pounds. My symptoms had become more severe and frequent in the past year before my surgery. Since the surgery I have lost this extra weight without trying and feel so much better. I’m thinking that if you have your surgery you may need to buy a smaller dress size! My surgery was laparoscopic and the recovery time was very minimal.
I’m hoping you can get your surgery scheduled soon and can still get married in December.
Good luck and keep us posted.
Lauren
I wanted to ask you about MD Anderson. I have been waiting on Mayo for too long. when we contacted MD Anderson, they responded very quickly. I was pretty hesitant at first, not sure if I should go to Mayo. Considering I have gone through a previous surgery last year. I thought the name of that hospital sounded familiar, then I remembered that is where you had your surgery done. They are scheduling me for the end of September to go for testing. They did not mention the 72 hour fasting, but all the other usual tests have to be done all over again. Could you tell me about your experience there? I would appreciate it. Knowing that your surgery went well over there gives me some hope and that I am making the right decision going there. How are you feeling now?
Hi everyone
I wanted to ask you guys a question, I know weight gain is part of insulinoma, but for the last couple of years my weight has been pretty stable until this past christmas, I have gained fifteen pounds since that time. I was wondering, if anyone else has experineced gaining more weight as the eposodes get worse or more frequent. Because my eating habits have not changed at all, if anything I am eating better now. I do not eat as regularely as i should be eating, and still gaining all this weight. I am getting married in December. That is if I do not end up having surgery before then. in that case, I have to postpone the wedding. I think I am the only bride who had to buy a wedding gown a size igger so I would be able to fit into it if I gained weight. Most brides starve themselves to fit into a dress not ask for a bigger size, you should have seen the face of the girl who was helping me in the store, it was pretty funny. For those lucky guys who have had surgery I hope you are doing well, and I hope to be in your club soon, and for those who have not had their surgery, good luck with everything.
Peggy how are you doing?
take care everyone
Homa
I’m 5 weeks post surgery and feel completely normal. I’ve been back to work for 2 weeks and I have to admit, it really did me good. I was tired of laying around at home. I even skipped lunch one day at work. I haven’t been able to do that for a very long time.
My sugars are still a little high, 115-125. If they don’t drop a little bit more I will be making an appointment with the Endo that diagnosed my insulinoma and see what he says. My surgeon told me that occasionally a person becomes diabetic after this surgery. I’m really hoping they drop a little more soon.
Hey Lise!!
I don’t know how I missed your first post. That was over a month ago, so what have you found out since then? Have you learned anything helpful from your education yet, as far as diets or alternate causes?? I wish I could see a naturopathic doctor, since mine haven’t been able to find the cause yet.
I’m sorry I can’t remember my numbers, for more than a day, but I’m sure I wrote them down somewhere on this blog. All I know is that they thought it high for how low my sugar was.
Post some questions if you’re still out there, people will definitely respond.
Kim, as awful as it sounds, I had a rule before I had surgery that I would never be alone with my 3 young kids. It was awful, but I had a couple of really scary episodes with them and I knew I would never forgive myself if I was to hurt one of them. It is really hard, but you will get thru it!!
Angie,
I still have not had the calcium infusion test. I did mention it to my doctor at USC, but she quickly passed it off saying that it was not very accurate. It will be interesting to hear about Beth’s surgey being that the calciunm test showed high insulin all over the pancreas.
It is encouraging hearing that life “picks up the pace” enventually. Oh, I remember long after my kidney surgery that my scar would itch like crazy. There was never anything wrong though.
Kim,
This disease definitely can take over your life, but you’re doing the right thing putting the time and energy into it now. I know how much of a strain it can be for you, but in the long run, you’ll be able to be there for your kids 100 percent. I would have a hard time giving up my vacation plans though. Especially considering how long the recovery time after surgery would be. You shouldn’t have to worry about crashing, if you keep a supply of quick sugar with you at all times, as well as a monitor. The trick is remembering to eat constantly! I check my sugar every two hours at least, whether I feel low or not. Although, no matter where I go on vacation, I have trouble. I don’t know if it is the altitude or the extra energy expended or just the different routine, but I’ve always had to have the paramedics come wake me up.
Since insulinoma is such a hard disease for others to fully understand, it has taught me to have a greater appreciation for people that are going there own illnesses..
Hopefully you’ll be aqble to go to John Hopkins, if anyone can find the problem, they can. Hang in there!
Susan?
How does it feel to be back at work??
Laura and Lauren, Thanks so much for your comments.
Every one, does anyone know insulinoma surgeons in NYC?
Kim, one more thing, you mentioned Baltimore, Doctor Cameron at John’s Hopkins is very experienced wtih insulinomas. I almost went to him myself.
Beth, I was so happy to find this website as well, it is amazing when you realize you are not crazy and other people have what you have! Did they find anything in your ultrasound? One thing very important here is these tumors are usually very small and not all diagnostic tests are equal. Ideally you get your test at a big hospital that has experience with pancreatic tumors. As you can read above, there have been many negative tests when there was a tumor present. I had my first MRI at a big hospital in Chicago that found nothing. After a bunch of research, I determined that there was a better hospital in Chicago for what I have, I had my Ultrasound there and they found it. They also found it in a CT scan at the same place. Make sure your hospital is the right hospital!!
Maria, I did not experience any hair loss, but good luck with that. It might jsut be all teh meds causing it!
Kim, I did not have an official 72 hour fast either. If you woke up at 40, that is probably enough. The way they did my fast is I woke at about 50, my husband drove me to the doctor’s office, there I was 40, he waited one hour, I was in the high 30’s and he stopped the test. They jsut want to confirm that you do not get higher on your own. Almost never does a 72 hour fast take that long, I would venture to say, most of the time it is over in a couple of hours. As for finding a doc, I posted a website above with the best ranked hospitals in teh country. Mayo is first, Johns Hopkins is second, and the 3rd is also on the east coast, but I don’t remember the name. I had my surgery at University of Chicago which I would definately recommend. My doc is the cheif of surgery and only does operations on the pancreas. Good luck!
Hello all! I definately know what you mean about life picking up the pace Angie! I am finally back to work after 6 weeks off, but I am definately not 100% yet. I do not have any “incision” pain or itcing, but I get what I call internal pain. I have not discussed it with my surgeon yet as I am hoping it will just go away on its own! I know, not that smart, but oh well. One interesting thing, when I went to have my staples out, I asked about follow up appts etc and my surgeon shook my hand and said, you are cured. No need for any follow up on this ever unless I start having sypmtoms again which is extrememly unlikely. I thought all of you that are getting annual checks would want to hear this, it makes a lot of sense to me. Good luck everyone!
Kim, welcome. You have to agressively pursue this if not for yourself then your kids. I know how hard it is to have low blood sugar while trying to deal with kids. My suggestion to you is to go ahead and insist on the 72 hour test because that is the one test that definitivley tells them you have insulinoma and then they will pursue more invasive tests to locate it. It can be very hard to find doctors, go to a well known endo and they will refer you to a doctor who has experience w/ insulinoma, thats what I had to do. lauren
Peggy,
Thanks for your thoughts. I had no luck with CT scan and an endoscopic ultrasound. I am going to go to a bigger city NY or Baltimore to look into this further. I’m concerned that the surgeon here would have little experience with insulinoma surgery.
I am so sorry that you have had to deal with this for so long. I don’t know how you do it. I just feel so limited. I have always been very active and now its always in the back of my mind that i might start crashing. I have three kids and for the latter poart of the summer dealing with this – making calls, having tests, recovering from the tests, looking for doctors has been like a full-time job! I feel as though I haven’t really been there for my children and we may have to change vacation plans if I get a green light from the new doc. Ugh! I have a new respect for people with chronic illness – finding the courage and strength to not let it take over your life.
Peggy
Have you looked into having the full body calcium infusion yet?
Ive missed a few posts I see – but im still here!!
Susie
I havent been in touch for ages – sorry life seems to have picked up a pace! How are you?
Do you know I still find it really painful to turn over off of my stomach in bed, how are your stomach muscles faring? My drain site scar really itches sometimes.
Other than that no symptoms, no dizzy spells no sweating and no funny sight distortions – I cant believe the difference!
Wishing everyone well…..
Angie
Hi Kim,
No wonder your new diet caused more extreme symptoms, whole grains, though a slower release of sugar, were never fast enough to keep my sugar from dropping unless I ate a quick sugar with them. And eating more protien always took the place of all the extra carbs I should’ve eaten. I found that I could eat the healthy stuff as long as I eat a continuous supply of quick sugars (usually soy or rice mild helps). Caffeine and alcohol always made me crash though, you’re probably better off without those. Even if the hypos weren’t enough to make you feel crazy, trying to find a diet that works for you would be! I’ve been living with this condition for almost 15 years because they can’t locate the tumor and I’m not brave enough to undergo exploratory surgery. I live in Calif. and the first endo I was assigned to had experience with insulinomas. I don’t know where you live, but seems like if you look up the hospitals in your area, preferably teaching hospitals, they would have something on endocrine tumors, if they were experienced. Good luck with that.
As far as the 72 hour fast, nobody with insulinoma lasts that long. The whole point I think, is to see if your sugar drops low enough while your insulin remains high, which it did. Have you had the CT results read yet. Hopefully if they’re read by the right person, they’ll show something.
Let us know what you find out.
Beth,
Are you home from your surgery yet? I’m so interested to find out what happened. Did the endoscopic US find anything?
And what about the “gray spot” on your pancreas, wasn’t that something? The venous sampling showing that the insulin was coming from all over the pancreas makes it sound like it wasn’t just one tumor. I realize that if that was the case it may have been a bigger deal, but in any case I hope it all went well and you are at home recouperating. Please let us know as soon you can.
Peggy
A question – my endocrinologist is basing his insulinoma diagnosis on a simple overnight fasting blood sugar/insulin test. I didn’t do the 72 hour one like many of you here. Is it necessary to do the 72 hour one for an accurate diagnosis or can one tell from the more simple test. My blood sugar was low (40) and proinsulin high (110).
Thanks!
Hi. I have had hypo episodes for aboout a year. When i changed my diet in Feb ’07 to no caffeine, no alcohol, whole grains and more protein, it seemd the symptoms changed from shaky, hungry to dizzy, disoriented, drunken sailor, seeing double. My bloodwork makes them think I have an insulinoma. I had a CT this morning and hoping they will see a tumor. Next will be an edoscopic ultrasound. Since i don’t live near a netro area I am concerned about finding a doc with insulinoma experience. Did you guys do a lot of research to find the right doc? If so, how did you go about that?
So glad to have found this site and hear your experiences. i thought I was going crazy there for a while!
Welcome Beth! Where are you having your surgery? I would demand all tests possible before you go into surgery without them finding anything. I hope you are in the hands of some experienced doctors. What about the calcium catheter test? I read on these boards that that is a last resort test. Good luck I hope they find it!
Welcome Maria! I do not have any experience with hair loss but I suspect that your eating habits have changed greatly if you have lost 40 lbs and maybe that is why you are experiencing hair loss. Are you eating enough nutrient rich foods? Did you stop eating proteins? Just a suggestions. My incision was also vertical and is in the red line stage. I am 7 weeks out. The top of incision is starting to keloid and I think thats because whenever you twist or turn the skin stretches more at the top of the incision than the bottom(lots more skin/fat down there. I have only lost about 10lbs so far but I really can’t execise yet.
Lauren
Hi Guys!
Glad to hear everyone is doing well. I had my surgery on March 8, and have been doing great! We even went to Europe for 2 weeks in May. I did have some problems with my drainage tube after the surgery and had to have 3 CT scans to make sure that the drainage had stopped. I was in the hospital for 6 days, had a tube for 2 weeks, and went back to work in 6 weeks.
My question is now I am experiecing a lot of hair loss. Has anyone else had this? My hair has gotten very thin and is really dry and straw-like. I just started taking Boitin vitiams to see if that helps. I am losing a handful every morning in the shower.
At first I lost about 40 lbs, which was great, but the weight loss has stopped now even though I watch what I eat and exercise every day. This may have something to do with my Thyroid – which has increased lately and my doctor increased my meds.
My scar is vertical – from the breast bone to belly button and it is now in the red line stage.
Glad everyone is doing well and just curious how those are doing now a couple of months out of surgery.
Hello Everyone,
By the grace of God I just ran across this website after searching for numerous months and not really finding anyone with insulinoma.
I guess I should start off by saying that I am a twenty one year old female, and about six months ago I was diagnosed with an insulinoma, after doctor’s ruling out every other possible problem that could cause all of the “typical” insulinoma symptoms that I was having. Also, I find it interesting…I too was diagnosed with PCOS at around sixteen years of age…seems to be a possible “coincidence”.
To date I have had two 72 hour fasts, both which showed the biochemical evidence that there was definitely an insulinoma. Next was two CT scans and an MRI, which showed a “gray spot” on my pancreas but nothing that they could really locate. Then came the venous sampling which showed that the levels of insulin were extremely high all throughout my pancreas. Then another CT scan…not really able to find anything on there.
So tomorrow I go in for an endoscopic ultrasound to see if a tumor can be located. Then, even if the tumor cannot be located, I go in for surgery on Thursday (July 26th). If they find the tumor tomorrow by endoscopic ultrasound, then they might be able to do a laprascopic procedure, otherwise they will do an open procedure, in which they will be doing another ultrasound, then they will feel around the pancreas for the tumor to see if they can find it that way, and if all else fails they will do a “blind” partial resection, as the bloodwork all indicates that there is an insulinoma.
Sorry for getting so long-winded, I am just ecstatic to find people who actually are going through this with me (or have been through it before). Anyways, I would love to hear from anyone and everyone…advice,comments,do’s and dont’s, etc. Thank you for taking the time to read this.
Take Care and God Bless,
Beth
Peggy,
I agree that it is a weird thing to be saying, but had i not had the insulinoma removed the stomach tumors probably wouldn’t have been found until they were malignant. My blood sugar this morning before breakfast was 119. In a week it has gradually dropped from 150 so I’m almost at a normal level. I’ve had no more pancreatic pain since I’ve been home. I am on antibiotics until I see my doctor on the 30th. I’ve lost about 20 lbs since the surgery which I am happy about. I had put on about 30 lbs. in the last couple of years. Because of the insulinoma it seems like all I did was eat to keep my sugars up. Now I just eat when I’m hungry. I haven’t heard about taking acidopholus. What does it do for you?
I’m feeling much stronger than I had been. My 2nd stint in the hospital really kicked my butt. I think not being able to eat had a lot to do with it plus I’m 49 years old. I am going to go back to work on the 31st and am looking forward to being with people again all day.
Penny,
I defintely understand what you are saying about not getting any sleep. I had a terrible time sleeping and don’t think I had anymore than 1-2 hours at a time. When I did sleep I had terrible nightmares. I’m assuming this was caused my the morphine or something else. Since I’ve been home the nightmares have stopped and I’m sleeping well.
How are you feeling Penny?
I remember every time I have been in the hospital never getting enough sleep. But every 2 hours, man! I guess they wanted to make sure you were still with them. You would think that they would realize how important sleep is to healing. At least if they came in quietly, turned on the night light and would WHISPER, you could get right back to sleep. I’m sure you’re glad to be back home. I hope you are recovering quickly.
Susan,
It’s weird to think of something like insulinoma as a blessing…Have you had any more problems with the pancreas? Antibiotics are probably taking care of that. Don’t forget to take a lot of acidopholus. How’s your sugars, and the weight loss??
I hope you’re feeling stronger.
Hi Peggy,
I wish I could say my hospital stay was fun & exciting, but it was mostly tiring. They woke me up every 1/2 hr. in the night the 1st night and then 3-4 times the rest of the nights. I don’t think I got more than 2 hrs of sleep at a time. All the picking, poking, & prodding I could’ve done without too! I was so excited to get out of there so I could get a full night’s rest! All the people in and out of my room (nurses, doctors, nurses, friends, family, & more nurses) kept things interesting for me. 🙂
Penny
Yeah Penny!!
It sounds like it went pretty well. So, were you bored those 6 days in the hospital? I guess compared with caring for young children it might be boring…Your scar is a little shorter than average, that’s cool.
I’m glad you’re feeling well, don’t do too much too soon!
🙂
YIPPEEEEEEE!!!!!!!!!!!!!!!!!
Praise God. My surgery went smoothly, my tumor was able to be just scooped out with no apparent harm to the pancreatic duct and my blood sugars are normal now!!!!!!!! It is almost unbelievable. I slept all night lastnight without having to wake up to eat in the middle of the night and just for curiousity checked my sugar level upon waking and it was 90! wow. what a feeling.
I was in the hospital for 6 days. They also had me on a walking epidural for a few days which was great, then had me take vicadin which i got very nauseated with, so I didn’t take anything after that and didn’t feel much pain, just a little burning where the staples are, but not bad. I also had a drain in, which they took out when i left the hospital, and BOY that was an interesting unpleasant feeling as a tube was being pulled from my belly. My incision goes from the bottom of my breastbone to right above my belly button.
By the way, how does it feel to have staples taken out??
Alright, I just wanted to update you all. 😉 and now i am going to get something to eat and its NOT because i have to!!!!!!! 🙂 yeah!
Penny
Peggy,
well, my surgeon didnt tell me much…..other than we are going to do a new scan in 6 weeks to see what it has done since the surgery. we are waiting until everything heals up from teh biopsy. I meet with my oncologist tommorow morning they are working together on this one…..
The surgeon said that because it is in the lymph nodes, he is still not sure what the best course of treatment would be right now. they are still throwing our “debulking” the tumor, but no mention of a whipple. he said that becasue it is in the lymph nodes, there is no guarantee that the whipple would take care of it, as it may be elsewhere in my lymph nodes. so basicly, i know nothing! LOL!! thanks for asking! i will keep you all posted!
Hi Peggy,
I finally got home yesterday and feel pretty good. I’m just very weak and tired. I lost 20 lbs in a week so I’m sure that has something to do with it to. The doctor still doesn’t know why I was running a high temp. The blood cultures never grew anything.
I did have pancreatitis which definitely was not fun. You are correct, no food and nothing to drink. I was only allowed to wet my lips with a sponge. I got used to it though as I really had no appetite. I now am on a low-fat diet for a month. The antibiotics really did the trick and I’ll continue taking them for 2 weeks.
My blood sugar is still a little high but the doc assured me it will get better. He said sometimes it takes 2 months for it to become normal. At this point he is telling me to just watch how much sugar I eat. If it still is high at my 2 week check up he will probably put me on a diabetic diet. Now that will be a switch from what I’ve been used to. I may also need some insulin temporarily.
The best newis..the final pathology reports came back and the three little tumors that were removed from my stomach were precancer not cancer! He said they would have become malignant in 10 years or so. Had I not had an insulinoma to remove these may not have been found until they had become full blow cancer. This alone makes up for everything else.
Laura,
I’m glad to hear that you’re recovering well. Good info on the epidural. It sounds better than the morphine they gave Susan, that makes me really sick as well.
My last MRI didn’t show anything. Now they’re thinking it’s nesideoblastosis(sp?), which means random cells producing too much insulin. Guess there’s nothing they can do about that, besides removing part of your pancreas…oh well.
Steve,
What did you find out from your doctors?
Hi Susan,
I hope you’re beginning to feel better! They probably wouldn’t let you eat if it is pancreatitis? How does that feel? Do they think that the antibiotics will take care of the problem? I sure hope so. You’ve really been through it. Sounds like your blood sugar is a little high. Are they concerned about that at all? Hang in there and let us know how you’re doing.
Hello All,
I had my insulinoma removed on July 10 and went home on July 12. I luckily had laparoscopic surgery which went well. Unfortunately though, my surgeon also found 3 very small tumors on the bottom side of my stomach which he removed by cutting a thumb length of meat out. He feels they are malignant but are a type of tumor (I don’t remeber the name) that all the treatment needed is to remove them. I am SO thankful I had this surgery or who knows what would have happened in time.
From what I’ve been told but don’t remember is that I was in quite a bit of pain when I woke. I was in recovery for about three hours and the surgery also took 3.
I got very sick from the morphine and once that was gone I felt pretty good. Early Wed morning I had a 100 degree temp and a lot of stomach pain. The nurses told me it was gas from the procedure. I was discharged on Thursday and start to run a temp again that night. I woke during the night with worse pain the previous. I called the hospital and they told me to walk it off. Which didn’t help this time. I doubled up my pain meds and finally it subsided. Friday afternoon I was running a 103 degree temp and had severe stomach pain. My doctor sent me to my local emergency room who stabilized me and transfered my by ambulance to Iowa City where the surgery was done. The surgeon met me in the emergency and thought I probably had a hole in my stomach. He ordered a CT and expect to do emergency surgery. The CT showed no tear, (thank god). I think I totally would have lost it if I would of had to have another surgery. They really are sure yet what the problem is but suspect either pancreaitis or a stomach abscess. I have been on antibiotics and also enzyme production from my pancreas has been stopped with meds.
The best part about all of this is my blood sugar has remained around 150!
Congrats Laura!
I have a similar scar as well, but mine was just for the biopsy! it doesnt go up that high, just to about mid stomach down below my belly button. Thanks for sharing your experience! it sounds like that might be the route they go with me as well, though we are still up in the air. i meet with my surgeon and Oncologist next week to go over stuff some more. Congrats! and hope you heal up quick!
Congrats Laura I know how you feel its a wonderful feeling isn’t it? I have the same vertical incision you do. I was shocked how long it was I couldn’t wear a bra for a while cause it started at my bra line all the way down to my belly button as well. Oh well no more bikinis!!
If anybody knows anything about the best scar medication please share. A friend of mine’s plastic surgeon told her to use scar guard ($35 over the counter)so that’ what I’m using. I think its way too early to tell if its helping.
Lauren
Hello all! Well it is exactly 2 weeks since my surgery and let me tell you it was a lot of fun. The good news is they did not have to do the Whipple as they were able to enucleate the tumor which was great news. That being said, I still spent the first 24 hours in ICU because my sugar levels were so HIGH! Isn’t that crazy? I had an insulin IV to keep my sugar in check. Then I spent another 5 days in a regular room so 6 days total in the hospital which was not so bad. As for fasting the day before, my doctor did not admit me to the hospital early as I thought he would based on everyone else above and what they did. He let me eat all day until 6pm. After 6pm, I was to do clear liquids only until midnight, then only glucose gel from midnight till my surgery. It worked, it wasn’t fun as I hate regular soda, but it did keep my sugar up.
Since the surgery, I have had no low blood sugar at all, in fact, the lowest reading I have gotten is 105 so now I am what they call high normal so I am on the high side of the normal range. My scar is pretty awful, it goes from my bra to about 3 inches below my belly button, very attractive. They closed with staples which they removed yesterday. I had no drains which was great, one less thing to worry about.
For pain meds, they used an epidural that they put in before the surgery. I had a big problem with it however in post op. Evidently they had to place teh epidural very high due to how high the incision started, the problem was I was lying flat so the epidural was “pooling” in my chest and not getting to the places where it hurt. Once they figured it out and sat me up, it worked really well. I liked it because I kept a pretty clear head while getting good pain relief. It was a walking epidural so I was still able to get out and walk pretty much right away (not in the ICU, but shortly after). AFter the epidural, I changed to a PCA which was also great because it is continuous pain relief, there are no ups and downs as there are with oral pain meds. I did not go to the vicodin until the night before I left the hospital.
the eating part is the best part. I have lost 12 pounds already which I am so happy about. I am eating whatever I want whenever I want which I have not done for so long, it is amazing! I even had coffee for breakfast today and I am fine!!
I look forward to reading everyon’e posts to see what is up with all of you but for now, I am off to take a nap! Good luck everyone!
Laura
Penny and Susan,
If spouses are reading this, please let them know that I am praying for them. I wish we were closer so I could visit.
Let us know how they are recovering!
Laura…how are you doing??
Penny
sorry – “Obs” are observations, which is blood pressure, temperature, blood sugars and heart rate, supposedly done 4 times a day!
Dont worry about your stomach muscles too much. They do take time to recover and even after 5 months its uncomfortable to cough sneeze and laugh, but that depends on the state of them before as well I would imagine! and difference in healing between different people.
Good luck on the 11th to you and to susan with your surgeries!
Regards Angie
Angie,
thanks for the advice about the hospital. it may be a stupid question, but what are obs? The more i think about it, the more I am nervous about my stomach muscles getting sliced. how was your recovery with that?
Steve,
I definitely agree with being moody ~ seems like when i get in the 50’s i get very tense, stressed, irritable & easily agitated. i’ve also had numerous other symptoms at various times: light headedness, blurred vision, tingly hands, tingly tongue, nightsweats, but yes, the stressed out part would definitely be the most common for me! have you checked your blood sugar when you are feeling stressed? as with peggy, i also down some milk when i feel that way.
Susan,
i’ll be praying for you and thinking of you & your recovery. i wish we were going to be at the same hospital so we could go through this together! mine is on the 11th. good luck!
penny
Thanks Peggy! I was wondering if that could cause the mood swings. I havent had too many low blood sugar incidents, so i really dont konw what else to look for!