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.
Welcome aboard Bev. I know the 72 hour test seems scary but its basically the standard procedure for somebody in our situation. I would have somebody go with you if I was you, somebody that understands what happens when you go low and possbly take a glucose monitor with you so you can tell how fast you’re falling. I know mine come on very suddenly. All of sudden my brain shuts down. Good luck.
Peggy – wow! I didn’t realize you had so many tests to no avail! That is my fear! Who has been doing your testing? Is it somebody who is experienced with insulinoma?
I’m sorry Lauren, I remember now you said you’re going to Houston. I would be doing the same thing in your place.
You’re just going for tests right? And you will be going back for surgery, hopefully? They haven’t found anything yet on me. Only the 72 hr. tests confirmed insulinoma. I go for another endoscopy on the 7th. Only three more days, are you geting anxious?
Does anyone else with low sugars have migraines??
Thanks Peggy, I’m actually going to MDAnderson in Houston cause its so much closer for me. If they don’t find anything or I’m not comfortable with their surgeons I will definitely be on my way to Mayo. I lose track, did your tests actually find an insulinoma? If so, which test found it?
Hi everyone,
I’m in the U.k and came across you all while searching for info insulinomas.
Well to cut a story short I’ve recently been having hypo’s and over the past 2 weeks around 4 – 5 a day. I’m 38yr old female of good health.
Reading your mail I to have an extreme craving for sweetness and have the most vile mood swings if I dont eat when I need to. But to top it my symptoms:
blurred vision, weakness dizzyness, edge of passing out, confusion, tiredness, crying, panic. Low blood sugars of 3mmols @ which point I’m freaking out.
I have been to my Genral Practitioners twice and to A&E accident and emergency twice and I feel as if they think I am making it up as when I get there I am on the recovering pathway due to my glucose intake. However I get terrible pulpitations as if my heart is coming out of my chest when I am coming up and I go as white as a sheet. Aswell as feel a little nauseaus then it settles down depending on how much glucose I have taken. I hate it, it upsets me so much.
However my G.P. has now descided to refer me to an endocrinologist at a privete hospital so I can hopefully atleast be diagnosed. He believes its an insulinoma or that is how he is treating it. I will inform you of the plans but my G.P seems to think I will also become an inpatient for the 72hour test. This totally terifies me. I can not bare the thought of loosing control to the hypo.
Anyway good luck to you all and I will keep an eye out on the e-mails.
Bev
Hi Lauren,
I know how you feel. You know what is scarrier than having tests done, is having reactions to low blood sugar! This weekend I took a ride to the E.R. in an ambulance because my husband couldn’t wake me up again. It’s definitely worse than it use to be, my sugar was 26 this time. But the bill was the real scary part. I’ve had multiple MRI’s and CT’s, 3- 72 hr fasts, an angiogram and an endoscopy. You don’t have to be afraid of the tests they’ll do, they’re painless. As I remember, you’ve already had some blood work and an MRI. I hear the high resolution CT’s are of greater value for this. It seems with all their expertise now, they wouldn’t go in without finding something first. I know there’s still that possibility that it could be more than one simple tumor, but I try not to think about that. Really, Homa was the exception out of all the people who have been posting on here. At least they know what they’re doing at Mayo, and they have all the right equipment there.
Chances are pretty good that they will find it for you.
If I can just hang on ’till Mon. maybe they’ll find mine too!
Has anybody besides Homa gone through extensive screening and not found their insulinoma? I am going for testing Mon and I’m terrified of this!
Peggy,
Thanks…it is pretty wonderful to be on the road to recovery. My husband and I measured the length of the scar, and it is closer to 2 inches. Initially, the pain was quite intense, and the doctors put me on morphine for the first three days (self-administered). Even so, it makes me cringe to think of the first time I got out of bed to use the bathroom…the pain was awful! Now, I am not even using advil, but to be honest, I think it helps that the incision is so small. I am sure that if it was larger, my abdominal muscles would be taking much longer to heal.
Best of luck with the endoscopy…let us know how it goes!
Lauren,
I definitely have to give the credit to my surgeon…his name is William Cance, and he is the chief of surgery at Shands Hospital at the University of Florida. He has quite a bit of experience with this type of surgery, and I suspect that since he works out of a research hospital, folks with insulinoma are referred to him from much of the Southeast.
And yes, my eating habits have changed! I am only eating three meals a day…no snacking. The doctors put me on solid food two days after surgery, so I only experienced a 5-7 lb. weight loss from the hospital stay. I suspect that since my dietary and exercise habits have changed, that this trend will continue (at least I hope so!).
Aileen and Amanda, how have your eating habits gone since surgery? Are you able to stomach any food yet Aileen? Amanda how long before you were eating again? Have you lost much weight?
Aileen that is awesome! Especially after reading one guy have a 13 inch scar! and walking around in 5 days wow! Who was your doc and where did you go?
Kathy,
34 is unusually low glucose, which is why they would think it was an insulinoma. However, did they have to give you glucose or anything when it was that low, to bring you back up? If your body can do that on it’s own, I doubt it is insulinoma. Men-1 sounds like a posibility. Since you have the problem with the pituitary and pancreas..I thought MEN-1 was the parathyroid though, rather than the thyroid. Anyway, Men-1 would cause hyper not hypothyroid.
I know how it feels to have terrible headaches, I woke up this morning with a migrain. The last one lasted 2 1/2 days,
and I was very dizzy and week. That happens a lot to me, even when my sugar is o.k. I do have low blood pressure as well as cold hands and feet. That could all be due to low thyroid. (Hashimotos)
I know how hard this is for you, but you are so fortunate to be going to Stanford. I’m sure they will be happy to look at your films, as well as take their own. Put your trust in them, they know as much as there is to know about endocrine problems.
Soon they should have it all figured out for you.
Peggy
Aileen,
You’re cured! Congratulations. 🙂
I can’t believe you have a scar less than 2 inches, how incredible. I want your doctor. That’s awesome you can just take ibuprofen. How was the pain when you first woke up? Did they give you something stronger than percocet to begin with? It’s great that you’re walking everyday, I hope you continue to recover quickly. Your news was very encouraging!
I finally have a date for another endoscopy…May 7th
Same day you go for your tests Lauren. Hopefully this time they will find it!
Peggy & Anyone who can interpret this test result
I have my 5 hour glucose tolerance test in front of me and what it states is
My fasting glucose number was 82
After I drank the solution they did one 1/2 hour reading that was 175, one hour reading was 134, two hour reading was 34 (Confirmed by repeat analysis) 3 hour glucose reading was 55 4 hour reading wa s 76 and five hour reading was 81 so what does this all mean I don’t know. I am curious if anyone who has this insulinmoa also has low blood pressure my blood pressure has been pretty low also running 90/52 which is very low for me not sure if the two go together or not. Thanks anyone and everyone for any help you can offer.
God Bless Kathy
Peggy,
Just wanted to thank whoever started Dr. Norton’s site on here it is somewhere in the begining I wrote to him and his office callled me today they would like for me to come out and be evaluated I am very nervous because I don’t know this is what I am dealing with so I am going to go tomorrow for my fasting glucose and fasting insulin test, cpeptide test we will await those results then I will have to make the decision on what to do. He did alot of endocrinlogy has has a good background I also had a mircoadenoma back in 2005 had test repeated 2006 and test showed nothing I was told by many doctors that a microadenoma of the pitutary does not just disappear so I don’t know what to think. I also has Hashimotos disease I have nodules on my thyroid and the insulinomnia I am not sure I don’t seem to fit the pattern all of you have which bothers me. I have the Glucose Tolerance Test he could look at and I have the two pictures of the MRI’s of the pitutary with one in and one out. I have the two thyroid scans that were done also. I was wondering if I could pay him to look at that information and let me know if any of that is causing my problems also could be looking at perhaps MEN;s not sure this is all guess work I am not sure. I have all the symptoms of hypoglyemia but they don’t seem to leave me much at all and I don’t hear people on here saying that I seem to be in bed almost all day with these horrible headaches, blurry vision, dizziness every symptom is there but what else could be causing this to happen. For me to spend the money of course my life is worth any price but it seems like you people eat and get relief of the symptoms I don’t I have it almost all the time. Anyway just wanted to share and post and say hello to everyone and for the ones who are in surgery hope you are recooperating in my prayers for the ones who are home recoperating hope all of you are doing well and also enjoying your new life which you all so deserve maybe one day I will be like you guys not sure. Talk to you soon.
God Bless Kathy
Peggy
Thanks for the information I am really sick with all this I can’t lift my head from the pillow the headaches are so bad and dizziness is crazy nothing seems to help I have severe insomnia and am constantly hungry whatever this is is crazy I feel like I am losing it I can’t seem to get answers. Thanks for posting me I am not sure I even post right I never see a message in my email box I check here everyday hoping someone will maybe identify with what I have. The doctor told me he never saw anyone’s level drop to 34 in all the years he has given people a glucose tolerance test which I found to be a little odd as I read here people’s drop low all the time. Tomorrow I pray I am going for a C Peptide test and a Fasting Insulin and Fasting glucose test and I will have to take it from there.
Kathy
Aileen
Glad to hear you are doing so well I am wondering if I will be where you are one day if one day all this nightmare is going to end for me and finally get diagnosed. Keep up all the good work and hope you are up and well real soon. God bless
Kathy
Hey all…
Just wanted to let you know how things were going. I am 5 days post-op and am doing well. I had open surgery (which was no surprise, since the tumor was on the head of the pancreas) and ended up with a 1.5-2 inch scar. When I first saw it, I assumed that the surgeon had performed laparoscopic surgery, but it turned out he was extremely skillful in going straight for it (with the help of the ctscan). I was in the hospital for a total of 4 days, with two of them being in the intermediate intensive care unit. My sugar levels shot up 15 minutes after removal of the tumor, so they began administering external insulin so I wouldn’t turn into an instant diabetic (apparently the presence of the tumor causes the pancreatic islets that produce the insulin to become “lazyâ€). I was taken off the insulin after 12 hours since my pancreas adjusted quickly…I am still on the high range for glucose (@ 100), but the doctor said that should taper off eventually. I still have a ways to go, but I have already weaned myself off of Percocet (I take Advil instead when I feel some pain) and I am taking short walks at least once a day. I know our bodies are all different, but like Amanda, I just wanted to let people know that the surgery is extremely worth it, despite all of the pre-op anxiety. My surgeon also received the results of the pathology test on the tumor, and it was confirmed to be benign. Also, like Amanda, I can already feel the change in my energy level (although I need to constantly remind myself that I still need to rest). Another interesting thing is that I have started to have intense dreams again, which is crazy, since I stopped having memory of these as the hypoglycemic episodes became more frequent. For those of you who are preparing for surgery, have faith in your medical team, and just know that compared to what we have been dealing with on a day-to-day basis, the surgery is so worth it. And for those who are still searching for answers, persevere and keep yourselves on the doctors’ radar screens. I finally got fed up with being sent to the neurologist and the psychologist all the time, so I feel my stubbornness is one of the reasons I finally feel some relief now. I also found a really great endocrinologist, which is of course essential, as well.
Kathy,
I also have PCOS, and what I have learned is that although the association is rare between the two disorders, there is some logic associated with it: In addition to causing sugars to drop (since insulin regulates carbohydrate metabolism), an excess amount of insulin can also stimulate thecal cell production of androgens, perhaps leading to symptoms of PCOS. There still seems to be some mystery surrounding this issue.
Keep us posted on your progress!
Peggy,
Thanks for your kind thoughts…they mean a lot to me.
Amanda,
Congrats on your quick recovery…I was thinking about you, as well, and am glad to hear of your progress!
Angie & Peggy
I will look through my records and find it. Her lowest level that I remember was 34% which is extremely low. That is why I asked you to get a CT scan of the pancreas now because that level plus the persistence of her symptoms would suggest an insulinoma of the pancreas. Not a cancer but a small area producing too much insulin. It is sometimes very difficult to find, however.
Poor soul, she suffered so long with her diseased gallbladdrer and her pelvic symptoms. I am sure a local CT scan would be as good as anywhere.
God bless,
This is a letter that was emailed to me from my doctor does this sound like you guys or anyone out there my glucose levels seem more toward normal but I have all the hypoglycemia symptoms does this letter he sent mean anything to anyone reading it. Please respond thank you.
Kathy
Sandra
Hypoglycemia is low blood sugar. If you do not have low blood sugar readings you do not have hypoglycemia!
Obviously you have something else with similar symptoms. The doctors should be treating you and trying to find out what you do have, however they will not do a fasting test without low blood sugar evidence as there would be no point. The fasting test measures the blood sugar levels dropping due to continuing production of insulin when the body should be regulating the levels and insulin production should be dropping off.
Something is obviously wrong so good luck pushing your doctors……
Angie
Amanda, that is so wonderful hear.
Sandra, it sounds like you need to find better doctors/specialists. Have you considered going to the Mayo clinic in Rochester? They have like 43 endocrinologists there and supposedly specialize in insulinoma.
Hi Amanda.
Thanks for that! I had been wondering how you were doing and I am SO encouraged to hear how well you are recovering.
I’m sure it has a lot to do with your young age, but also how fit you must be. You are an inspiration Amanda. Now I am even more determined to start trying to work out before my time comes
Stanford Hospital sounds like the place to go, if only I had better insurance. I’m still waiting to hear from UCLA to have another endoscopy scheduled. Hopefully this time they will be able to locate it.
How exciting for you to be returning to work! It’s good to hear how life gets better. Good luck with the marathon, and
keep dancing, for all of us! 🙂
All
You are truly a bunch of good people and what fighters each and every one of you are I watch your struggles and how you support one another and it is so nice to see in life that you are truly all lookin out for one another and building a beautiful site for people to coome to.ALSO A GREAT BIG THANK TO DR. JOH HE ALWAYS GIVES HIS SUPPORT IN ALL THIS AND ENCORAGEMENT.
GOD BLESS KATHY
Hi All!
It has been awhile so I thought I would drop by and let you all know that recovery has been going great. I am a little over 5 weeks post-op now and could not have asked for an easier time. I had open surgery performed as the tumor was on the head of my pancreas and was in the hospital for about a week. I’m left with a scar that is about 8 inches long, but it is only a very thin red line at this point. I doubt that it will even show much once it is healed. Dr. Jeffrey Norton at Stanford Hospital is a genius and I highly recommend him and his team for any insulinoma needs!
I did have a drain in place, but it was removed before I left the hospital. That was actually the most painful part of the whole the process. As the drain was pulled out, my abdominal muscles were sent into some kind of intense, localized spasm. It was terrible! The pain from that actually lasted about a week. I was off pain killers after about two weeks (including hospital time) and experience very little residual pain. Every now and then I’ll feel some pins and needles, especially when I am trying to sleep. I am not doing any strenuous exercise yet, but I do try to go out on long walks and hikes as much as I can. I actually even went out dancing a few nights ago! I was training for a marathon before I found out about the insulinoma, so I am looking forward to getting back into that in late April.
What is amazing is that I feel completely different now. My energy level is through the roof, I can actually wait until I’m hungry to eat, and I just generally feel more productive. I am going back to work on Monday (my surgeon approved a 3-month recovery and I used about 1.5 months) and couldn’t be more excited. Work was starting to be such a struggle with the insulinoma and I think it is going to be a completely different situation now.
I just wanted to let everybody know that surgery does not have to be difficult. We all have different bodies, but for me it was all so easy and I hope that some of you have a similar experience. I completely feel for the people who are having more difficulties and wish that I could take some of that away from you. Stay strong and keep fighting through recovery. Once you get past surgery, we really are cured and life goes on in a completely different (and better!) way. Keep your sights set on that and I trust that you will get through it with no problems.
Take care and stay strong!
Amanda
Lauren
Thanks for all your help with all of this stuff I am just so upset I find what is happening to me and has been the symptoms of hypoglycemia are so bad it is so weird that the humbers are okay. I still did not get the copy of the GTT test in the mail tried calling the doctor for a copy and he is old fashion he was not in and believe it or not does not have a fax. I called up another doctor I know and begged him for a fasting insulin test and he said why would you want that if your sugar has been pretty good there is no reason for me to order it and would not why it is such a hastle. What concernes me that I dont hear anyone mention is that my small blood vessels seem to be attacking me with the colds hands and feet and I thought I read if this happens it could be insulin resistant I am so afraid I am stuck like this for life. I take vitamins and eat healthly I can’t image what else could do this I guess there are other reasons to get hypoglycemia but I am not too aware of them. I pray to god there is something out there to help this whatever it is. Can you have a normal sugar level and a high insulin level? If you had that happen do you know what that would mean? If so are there any drugs to treat this if my insulin level is high? Sorry Lauren I am so desperate at this time and doctors are tired of all this when they don’t know what it is they don’t want to be botherd. Any suggestions or ideas from anyone I would greatly appreciate.
God Bless Kathy
Hi Sandra,
Wow, how coincidental that you posted on the same day as Kathy. Sounds like her hypoglycemia came about, or at least worsened after she had her gall bladder out! You must be farther away since I got your post long after I posted mine at 3:26. I guess you’ve seen that our replys go directly to your e-mail, even before they are posted here. I can’t remember who, but I think someone else on here commented on having worse hypos after surgery. I think it was…Homa? I don’t know if they removed her gall bladder or not. Check her earlier posts. She may not be on for a while, I remember she said that April was busy, and she’ll be having another surgery soon to look for insulinoma.
So, just curious, why did you have to have your gallbladder taken out? And how low does your sugar get?
It’s not very fun, I hope you can find some answers.
I’d like to know how to do a search engine as well.
Kathy,
I looked up those websites, pretty interesting stuff.
You know even if your sugar isn’t as low as others with this disease, it’s still low at 68 or 70! Enough to be feeling the effects. I remember the first time I went to emergency my sugar was only at 6o. ( that was 13 years ago) just talked to a diabetic nurse yesterday, and she explained that you have symptoms according to how far you’ve dropped rather than how low you go. I’ve often wondered how I could have symptoms at 50 that were more noticable than at 38.
You’ll know more when you get your GTT results back. They judge insulinoma on how high your insulin is compared to your low glucose level.
Lauren,
May 7th.. 18 more days!
Aileen,
I know you can’t read this because today is the day! But if anyone is reading this for you I hope they will let you know that you are in our thoughts and in my prayers. Let us know as soon as you are able how you are doing and how the surgery went.
Keep a good thought, as this will all be behind you soon.
Laparoscopic – four incisions of about 1/2 inch to 3/4 inch each, I’d estimate (plus one in my arm for the PICC line).
Brendan did you have laproscopy of regular surgery? How big was your incision?
My name is Sandra and somehow I got on to this website I had put into the computer gall bladder surgery and hypoglycemia. I was wondering is there anyone here in this group who has had this happen after gall bladder surgery. I had my gall bladder taken out and it seems like now I have such bad hypoglycemia I have to wonder was it all worth it. If anyone can relate or has had something simillar to this please let me know I am searching for answers. Also if anyone could direct me on how to do a engine search I would appeciate it. I was under the impression if you do a engine search you can put in all your symptoms and come up with some ideas as to what is wrong. Thank you everyone for any input. Also not sure put when you post how do you find out if you have a reply? I was wondering does it automatically send something to your email? Sandra
Aileen
Thank you for replying also this has really gotten pretty bad and has me so puzzled that someone can have all the symptoms of hypoglycemia but not be registering low numbers. I am waiting for the doctor to send my results on the GGT test to me he said I did something in the second hour not sure what he meant but I thought he said be careful you are going to run into diabetes if you don’t watch what you eat my god I have been eating healthy for years I was quite surprised. I am hoping to get the results in tomorrow’s mail. I am very discouraged I have been battling with for years with so many things, first I suffered for twenty years having been to gastrointerlogist for that many years with so many symptoms of weight loss, nauseau, pains in my stomach and just general pains and had 6 endoscopes and had 5 colonescopies and finally I went from 170 lbs to 114 lbs in six months all that time and all those years it was my gall bladder just wanted to send you something interesting you never know who will need this and let whoever is on this site read the interesting stories of how he does he test differently then most. Anyway he took out my gall bladder and he said I had a deformity in it from birth he traced back my testin and symptoms for over twenty years and says how hypoglycemia and gall bladder can go together but since having it out I still have the symptoms of hypoglycemia if not right now they seem worse then before in certain ways at least I can eat now before I was so sick I could not get out of bed. http://www.docsmed.com/default.htm click on to the picture with the girl in it and also read the articles it is so interesting he does the test different then most doctors I had to travel to him to finally get my gall bladder out and he has people come from all over the world thought my nightmares were over but looks like I have the hypoglycemia pretty bad. I think I could also have PCOS not sure but I have looked up those symptoms and they look like they produce high insulin levels but not sure how the hypoglycemic fits in the picture http://www.ivf.com/pcostreat.html another website that some people might be interested in that mention PCOS and pregnancy.
Thanks Kathy
Angie
Thanks for the reply. I have been from doctor to doctor but don’t understand how I can be this sick with every symptom of hypoglycemia but my numbers don’t run low sometimes 68 to 70 as the lowest. I also thought about PCOS and perhaps the insulin levels are elevated but the glucose is normal I am not sure just trying to find a place I can get some help and answers. My eyes burn terribly like something is being released into them, the blurry vision, the dizziness, headaches, the constant hunger, maybe the burning in the eyes is caused by a allergie but it all happens together when it happens which is most of the day, I have the terrible cravings for sweets but will only eat no sugar but natural products in my food and no real white flour, I have been basically eating a hypoglycemia diet for quit awhile so I am quite confused also to what is going on. I thought it I posted something someone here might be able to identify with me some of what is going on. I am glad you surgery is done and that you are recovering along with so many others. What you have done here along with Dr. Jon is unbelievable you have made a whole new life for so many people who really had no where to turn I know it was a place I found myself to turn to if you or anyone can think of anything this could be please let me know I will keep posted.
God Less kathy
I was able to work part-time within a week. Once the drain was removed after a week, I went back full-time the following day. I work at a software company, though, so there was no heavy lifting or time spent on my feet. Additionally, it sounds as though most people have had to have much more invasive surgeries performed, so it’s probably an atypical result.
To those of you that have had surgery how long were you away from work? Just trying to plan.
Kathy,
I was wondering if your symptoms are sporadic…I only ask because when my first symptoms appeared, they were few and far between. In fact, the first time I did a simple fasting glucose test (I stopped eating after midnight and went to the lab in the am to get my blood tested), I registered at 61. Low, but not so low that my GP was alarmed. Hence, it took several more months before I was sent to an endocrinologist and diagnosed with insulinoma. Although I didn’t have a glucose meter when I first started noticing some of the signs, I imagine that my glucose levels (most of the time) were not super-low. It wasn’t until over a year later that the symptoms became more frequent (perhaps indicating tumor growth??). Not sure if you fall into this category, but if your first blood tests come up normal or close to normal, and you are still experiencing the symptoms, insist on doing the fasting test again.
Good luck!
Dear Kathy
Anyone who can help you will jump straight in!! If you have clicked the right button at the bottom of your message you will get an email any time there is any kind of posting – Everyone appreciates messages from anyone!
I dont know if I can help at all with your questions on hypoglycemia. I would imagine if your glucose is not registering as low you would not be classed as hypoglycemic – anyone jump in if you think Im wrong! – If you are experiencing such symptoms that you have read about here but dont have low glucose levels you may have to look to another diagnosis.
If you do not have low sugar levels i doubt they will investigate for insulinoma. Have you had any recent diagnosis from doctors as your sypmtoms cant really be ignored what ever it is.
Im a lucky one as they found what I had before I knew what it meant and before I started blacking out! Im finding out how ill I was now that I feel normal!!!
Good luck, any questions post them and someone will help out im sure and let us know how you get on….
Best Wishes Angie
Angie
I am not sure if I am doing this correctly or not I have never worked on one of these forums before but if I need some help is it where I have to ask questions to a particular person or will anyone jump in for some help on her. What is very puzzliing to me perhaps you or anyone reading this is that I have all the horrible symptoms of hypoglycemia but my numbers on my glucose meter are not registering as low on it so I am quite confused. If you or anyone can give me some input as to what could be happening or a direction I could take I would appreciate it. I am glad you are recovering from your surgery and wish you the best of luck and am glad you were finally able to get diagnosed and have your surgery and my prayers are with you and your family for a full recovery.
God Bless Kathy
Hi Lauren
Im planning – have booked to go away with my family 26th may – our whitsun bank holiday week, so that will be just under 4 months from my op on the 6th feb.
As its a family holiday my husband will be there to carry stuff! I feel ok now but its the strains of carrying things and sharp movements that get me. I still have stomach pains frequently which I suppose is settling in pains!! Its sort of slow progress now as I look and walk ok from an outsiders point of view but I think it will be a while till Im totally fit and able!
Im flying again in july with just my kids so i hope ill have a better idea from may how ill get along.
Good luck!
Lauren and Angie,
Thanks for your kind words…I am getting a bit nervous, since the surgery is only a couple of days away. And then there is the whole issue of the recovery.
Out of curiosity, Angie, I was wondering if you could tell me whether or not you thought travel would be possible after a certain period of time? I am just trying to make my plans for the summer, and since I work overseas, I have been wondering how long it may take before I feel comfortable in making any trips. I know that every case is different, and I won’t know anything until the surgery is over, but it does bring some comfort in knowing about other people’s situations.
Lauren, good luck with your testing!
To All of you on here
I wish you all the best of luck. I have read the entire night to read all the posting and am begining to truly believe after 25 years this is what I am suffering from. The problem is I don’t have a real doctor to work with me and get all the necessary testing. I live in New Jersey and would so much love to hear from you guys as to what steps need to be taken. I definietly have the hypoglycemia but nothing seems to help it I am 50 years old and very sick from all of this so if anyone could offer me any help I would so much appreciate it. Thank you and god bless.
kathy
Aileen
I dont think this will be of much help but I had a study sent to me by my uncle in Australia. It covered 247 people over 50 years and only one had a whipple but there were 9 re-occurencies from where I imagine not enough of the tumor was taken. This isnt very current tho and there were a lot of very different scenarios.
I dont think anyone commenting on this site has had one!
I believe the surgeons have to cover themselves so warn you of the worst case scenario, and of course when they dont have to do it you think they are wonderful!
Best wishes and good luck for the surgery – take it easy afterwards and be patient! it is quite a long road to recovery as Im finding.
Deb,
I’m sorry – I misinterpreted your post. I thought you had yet to have surgery, and were polling to find out how commonly diabetes occurred post-op. My apologies; after re-reading your original introduction here, I realize now that my post was not actually useful.
sorry,
Brendan
Brendan
Thanks for the reply. You have your blood sugars well under control. I’m happy for you. Thanks again for your response.
Deb
Deb,
I had laparoscopic enucleation performed a year ago, and I’ve had no trouble with diabetes. My blood glucose typically ranges from 80-120 depending on my eating habits.
Brendan
Hello All,
Just a couple quick questions. I would love to hear responses from anyone who would like to reply. How many of you are Diabetics as a result of your enucleation or partial pancreatectomies? Were any of you Diabetics before the surgery or the onset of your low-blood-sugars? Also…has anyone had their insulinoma symptoms come on directly after delivering a child? And lastly, has anyone had a successful pregnancy after having their surgery? Any complications?
Thank you,
Deb
Good luck Aileen! I’m jealous! I am going to get testing done to find mine May 7th. I’m just praying they find it. I’m sure you will do fine, you will be a whole new woman after its over!
Helen and ST,
Thanks for your words of encouragement…I will need them. Yes, it is impossible to say whether or not a whipple operation will be necessary, unfortunately. My doctor thought from the ctscan that the tumor was positioned well (i.e., not near any major plumbing) but he won’t know for sure until going in. Does anybody know the percentage of insulinoma surgeries that end up as a whipple procedure (not like this will bring much comfort, though, given that we have already beaten the odds by getting the tumor in the first place!)?
Aileen,
Wish you a successful operation and a speedy recovery. My prayers are with you and hoping all’s well.
To Aileen,
The advise that our (Angie & I) surgeon Mr B told us both to prepare for a whipples as you cannot know until they start surgery if it is a whipples or enucleation. It is a year next (18th) week since my op so I know how you are feeling right now, funny really to think about how messed up & scared I felt this time last year & now I am back to normal, it is good news that your surgeon is experienced. I will pray that you have a successful operation and it turns out to be an enucleation.
Best of luck.
Helen
Peggy,
Since MEN-1 is a genetic disorder, I think family history can play a big part in the diagnosis (i.e., cases of hyperparathyroidism, pancreatic/pituitary tumors). In my case, I think the doctors were able to rule out the possibility of MEN-1 since my calcium levels were normal (if MEN-1 was an issue, the calcium would be abnormally high).
All,
My surgery is next Thursday!! Having finally met my doctor, I am at least relieved that he is so experienced with insulinoma surgery, but it is nonetheless scary. As I expected, it will be an open surgery, since the tumor is located at the head of the pancreas. And as I am sure many others have experienced, there is no guarantee that the surgery will be a simple enucleation. He seemed pretty confident, though, that he would be able to remove the tumor without taking part of my pancreas, but it is impossible to say now if the tumor, for example, is not imbedded in a pancreatic duct (I guess this is when an intestinal tract must be sewn into the pancreas, no?).
Wish me luck!
ST,
It’s good that you can be with your wife, I’m sure that and being able to see her children will help her to heal more quickly.
Susan,
The only thing harder than having this disease would be to have to watch someone you love struggle with insulinoma.
I assume she has already had a CT or MRI. Just be sure that her doctor has experience with insulinomas so you can be confident with their decision regarding surgery. As most of us can tell you, it is very difficult trying to manage these episodes with food.
My mother is 84 years old and is recovering from pancreatic surgery she had 3 weeks ago. She did not have an insulinoma, but the surgery was similar. She is doing quite well. The hardest part for her was getting back to eating enough. She lost quite a bit of weight.
I will be going for another endoscopy soon, since they haven’t been able to locate mine yet either.
Aileen,
How did they test for MEN-1?
Ditto. Your comments are greatly appreciated! I know my mom has had many tests done, just not which ones. They are quite sure it is insulinoma and she now wears a bracelet stating that. The paramedics who came to the house once when she had passed out didn’t know what insulinoma was. She perks up immediately with a glucose iv.
Thanks, ST, that was most helpful!!
Susan,
I am not a doctor. Given what my wife has gone and going through, I have read a lot on this medical condition.
XRay cannot determine insulinoma. Further tests like the fasting glucose test, insulin levels and C-peptide will reveal insulinoma. Then a combination of endoscopic ultrasound, CT scan and/or octreoscan can help localize the tumor. If the tumor can be successfully localized and if and only if it is on the tail of the pancreas, laparoscopy surgery (which is considered minimally invasive) might be an option in her case. In most cases when laparoscopy is decided, doctors still may have to make a decision on open surgery during the surgery itself (due to various reasons one of which could be excessive bleeding). So, the doctor/surgeon would have to make the final decision given your grandma’s age and the past history of heart attack.
Minimum I would suggest is for her to see a gastroenterologist.
Lauren,
Insulinoma would fall under endocrine neoplasm. It is a functioning pancreatic islet cell tumor. Functioning tumors secrete or produce excessive enzymes/hormones. Non-functioning tumors may just block something and/or rupture/bleed. MEN is a syndrome which implies multiple tumors instead of a single tumor.
Once again, I am no doctor. The above is based on the information I have read/gathered.
Some detailed information here: http://www.emedicine.com/med/topic2677.htm
Thank you for your advice, Lauren. I will see exactly what she has had done.
Susan, if I were you, due to her age, I would get more insulinoma specific tests done, endoscopy, oestricide-I know I spelled that wrong. Xray is definitely not good enough. Get the exact location of the tumor and then decide what your options are.
I don’t think the Xray actually showed them, but the doctors are quite sure they are there because she has all the symptoms of insulinoma. It took a while to get the diagnosis, though.
Susan, I would say surgery is still an option. Does she know where her insulinoma is? Becasue that makes a big difference on how severe the surgery would be. From what I’m reading here if its in the tail and could be done laproscopically then the surgery might not be that bad at all.
As a followup to my question, the surgeons at MD Anderson have listed under their expertise on their website, endocrine neoplasms, non-functioning pancreatic islet cell tumors and MEN but I don’t specifically see the word insulinoma. Isn’t insulinoma a functioning pancreatic cell tumor? Should I be concerned? They have scheduled me an appointment. One of the surgeons there did do her surgical residency at the Mayou in Rochester but from what I know so far its really important to find a surgeon who has specifically removed a lot of insulinomas.
My 82 year old mother has insulinoma, and I was glad to find a community of non ferret patients who are sharing their experiences. My mother’s surgeon recommended against surgery due to her age, so she treats herself by eating at regular intervals, including the middle of the night (the prescribed medication has bad side effects for her). It takes her all morning to get her blood sugar level high enough to be able to legally drive. As a result, she is gaining a lot of weight. This is bad for her in many ways, and there is no end to the weight gain in sight. She had a mild heart attack last year and gets winded easliy with the mildest exertion. I was searching for information on diet which would maximize her sugar level, but would minimize her weight gain. She has been told to concentrate on complex carbs and protein to achieve long term stability, but those carbs lead to much weight gain. Do you think surgery should still be an option?
Does anyone know of insulinoma removal being done at M.D.Anderson in Houston TX? My doc referred me here and also to Mayo. I know Mayo are suppoesed to be the experts but Houston is 10x closer for me.
Angie,
Whipple is done if the lesion/tumor is on the head of the pancreas. It is considered major surgery. At the same time, there are experienced surgeons who would have done quite a few. In the past, it might have been considered complex (still is), but with improvements in technology and lots of experience, it is done with great success.
If a lesion is on the tail, then distal pancreatectomy is done (in most cases, laparoscopically too) and comparatively minor to other pancreatic surgeries.
In my wife’s case, as the lesion was on the body part, Whipple is not needed/advised. Based on location if lesion was on the top or bottom side, it could have been a ‘V’ or inverted ‘V’ resection or just an enucleation. This could have been done laparoscopically too. Unfortunately for us, not only was the lesion in the middle of the pancreas in the body part, it was pushing against the duct too. If distal pancreatectomy was or is to be done, her pancreas till that part and possibly spleen would be removed. So, the attempt to just remove the lesion. The pancreatic duct healing on its own is a toss-up because the oozing juices/enzymes do not allow for healing from what I have read and also takes quite some time (months/weeks instead of days). In our case, in spite of her getting a vast amount and various antibiotics and very careful care, she developed infection which made the healing of the duct impossible.
Peggy,
My wife does feel depressed at times in the sense that if she will ever get better, as there were a few Whipple procedures and even organ transplants done by her surgeon and they were discharged after recovery. She had comparatively less complex surgery but still not healing.
She misses the kids the most. As the hospital we are in is famous for multi-organ transplants in India (and they do handle quite a few transplants), kids under 12 are not allowed (for the safety of the kids in fact with regards to infection). If I am with her, she is cheerful and looking forward to recovery. So, I have taken extended absence from work to be with her. Kids are allowed to visit once in a while as an exception in our case and they did so couple of times.
ST
Ive been following your posts concerning your wife and her problems. When my surgeon discussed my surgery my tumor was 2mm away from a small duct and he warned me that he would have to do the whipple operation as it may have breached the duct. He did not seem prepared to cut into the duct as it would seep pancreatic fluid. He didint mention it possibly healing but was taking the ‘safest’ option.
I think your wifes surgeons have taken this option to avoid removing a larger part of the pancreas and perhaps doing the whipple as it seems to be such a large operation in comparison.
Im only guessing here but while my surgeon played down the whipple op others have been quite horrified to hear I may have had to have that done. Its so hard to make guesses when we know so little about the surgery and the way they all work.
It would be very interesting to get one of those surgeons on this site to comment tho the poor guy may be un-indated with questions!!!! –
Jon what do you think?
Good luck ST!
Peggy,
From the looks of it, my wife requires surgery again. When it will be done depends on her drainage reducing to a much smaller amount and also how well her duct heals. About 2 weeks ago, the doctors had said we will monitor another 2-4 weeks or so before a decision on which type of surgery. She is in her 3rd week on this pigtail drain and we still have to wait as the drain has not gone down. Depending on her duct healing, there are 2-3 possible surgery options. If there is no healing, a major part of her pancreas would have to be removed which they are trying to avoid. I am also in touch with the Univ of Minn hospital and checking to see if something can be worked out.
Susie,
My wife also is on the somatostatin injection (octeotride) thrice a day. She has been on it for almost 3 weeks. She was on the same drug right after the surgery for couple of weeks and then it was discontinued for a while. Her diet is also a very low fat diet.
Her drainage problem is more due to her pancreatic duct cavity as it is not healing/closing.
Good luck with your healing and wishing you a speedy recovery.
As for people who get to have a major portion or the total pancreas removed, there is a procedure called islet cell transplantation (donor cells) or auto islet cell transplantation (own cells). This is mostly in clinical trials and very expensive (>US$150K). In some cases (total and major pancreatectomy I think), insurance does cover but post transplant costs can still be expensive due to the high cost of immunosuppressive drugs. Some hospitals do offer financial assistance as it comes under clinical trials. Very few hospitals are centers of excellence for this (Univ of Minnesota Hospital, Northwestern Memorial Hospital in Chicago, Univ of Miami School of medicine, Univ of Alberta in Edmonton Canada, Univ of Leicester hospital in UK and Kyoto Univ hospital, Japan). There are other hospitals that are doing the trials but the above are considered to have more experience. The islet cell transplantation eventually could end up as a cure for diabetes. As of now people who lose a major portion of their pancreas end up diabetic and their own cells can be transplanted instead of seeking a donor.
Angie and Lauren,
Reading your last comments gave me the -I needed to call my doctors and try to get things moving. I was on the phone for an hour before I finally broke down. It’s so difficult to play their game, and it is a game with my insurance. They leave the ball in my court, and for some reason that I can’t explain, I can’t seem to get the ball rolling. I have an appointment with my new GP on Thursday, maybe she can give me some answers.
At first I use to work out three times a day and I just took diluted juice with me, which worked well. I remember bike riding and once I went over the handle bars! Since then I stay on the ground. I’ve tried to find someone to walk with me, but to no avail. For some reason I can’t seem to do it alone. Somehow I’ ve lost the motivation to exercise at all since then I know I’m not the one to talk, BUT, you will feel so much better if you do it. And remember there’s a lot of health benefits besides just losing the weight. Your heart for example.
Lauren, just think of the future, you have a lifetime of good memories to make with your family.
ST,
How long before they know if your wife will have to have surgery? How is she dealing with all this, is her faith strong?
Everyone,
HAPPY EASTER…keep the faith!
Wow, I know I wrote 3 paragraphs earlier today and sumitted them – but they’re not here! Do yo think this is short term memory problem? 😮 I’ll try and remember what I said in the morning.
To ST,
My drainage right now is hardly anything. I wear a couple of gauze bandages with tape and change them every 4-6 hours. My surgeon gave me a statin drug, you have to inject it 3 times a day to dry up the drainage. It was a 2 week dosage.
Your wife should be on a very lowfat diet if she is having drainage problems. My surgeon told me the drainage can come in waves. for a few days I won’t have anything then all of a sudden it will start up again. My drainage has really slowed down so I’m hoping it is finally coming to an end.
Brendan,
In my wife’s case too, she was diagnosed with idiopathic epilepsy. In some sense, I triggered the diagnosis of insulinoma. What I derived after watching her on a day-to-day basis and of her symptoms and scouring the web, I felt she had fasting hypoglycemia. I raised this with the doctors as I was not sure if this was her disease/condition or something else was causing it. When in US, doctors shot this down as her blood glucose was normal whenever we visited them. While in India, though initially the doctors felt it as a case of idiopathic epilepsy, as I raised questions of fasting hypoglycemia, they put them together and eventually were able to diagnose the insulinoma. Her first couple of seizures/unconscious episodes, after IV dextrose, she was just a day in the hospital and sent home. After the 3rd seizure and also since the neurosurgeon was a close friend of mine, he began consulting various specialists to determine her problem.
Thanks for your responses.
Susie,
I saw in this thread that you were operated on Feb 2 and in a recent post that your drainage is still happening. How much is it draining?
All,
I was getting a bit joyous last week as my wife’s drainage was in the 20-35 cc and thinking stricture was forming. But, suddenly it has shot up to 70 cc the past 3 days.
As for her earlier eating habits (she was undiagnosed at the time), my wife used to carry granola/oatmeal bars. There were days when I found her sweating/shaky in the morning, I would give her a glucose drink first thing which became almost daily during Nov/Dec 2006. In her 2 year history of symptoms, she gained significant weight only in the last 3-4 months before surgery. This was the period she would get early morning seizures / unconsciousness when I used to call an ambulance to move her to the hospital.
Lauren – Trust me, I have a whole new perspective on medical care after being undiagnosed and misdiagnosed for so long. Even if you’d have pushed it with a general practitioner, most of them are inclined to diagnose with the most obvious problem (typically something neurological). The statistics on insulinoma sufferers point to them being treated for epilepsy quite often, which was the case with me. Additionally, even when blood draws are done, we can find ourselves with blood glucose levels that fall on the very low end of “normal” if we’ve just eaten a meal, so the people interpreting the results just ignore that element of the report.
Hilariously, I was only diagnosed properly when my cousin, who is both a GP and a ferret enthusiast, suggested that I should look into the possibility of a pancreatic tumor. That got me to my first endocrinologist after two years of epilepsy treatment. I’m happy you’ve finally gotten to a point where you know what’s going on!
Thanks so much Angie and Brendan that makes be feel so much better. I only wish I had been more agressive in a diagnosis years ago, all this time wasted when I could’ve been a better wife and mother, instead of going through life “out of it”, in a daze and cranky!
Lauren
I know this may sound hard but dont let this take over your life!
When I felt low I tested my blood and kept it in the back of my mind, I carried around a cereal bar and if at any time I felt slightly odd Id eat it.
I battled with my weight all the way through the last two years as things got more difficult to lose weight and when I was diagnosed I still went to my slimming classes and maintained rather than lost. I still ate salad but made sure I had some cheese or complex carb as well. Make sure you are eating a healthy diet with emphasis on the complex carb – which is basically recommended for a healthy diet anyway, also carry snacks with you at all times.
Eggs/protein will not make things worse, it means something else is needed at that time to boost your sugars. The fastest way to get glucose levels up is to eat sugary foods but this will give you a see-saw effect and the highs will be too high followed by a rapid drop that is why they recommend complex carbs. However in emergencies as in a diabetic hypo a mars bar is the recommended treatment! – Ideal for Peggy!!
My doctor only said test my blood if I felt I needed to as it would take over and become neurotic about it. Unless you have had the blackouts that Peggy has, be aware but dont get too scared to live.
It is good now to think that if I miss breakfast or eat later I wont have a low! It is also hard when you have had the worries in the back of your mind for so long that suddenly you dont have to worry anymore!
I would like to say if you like chocolate too much before the op – you still like it afterwards!
I can go back 10 years with various symptoms that could be attributed to this that I just lived with thinking it was just me and my querky body so it is good to feel normal suddenly. The tumors are supposed to be very slow growing. However if they grow substantially they will remove them straight away as this could mean something more sinister.
Peggy
Why are you having to deal with such terrible symptoms. Why are you not a priority!
Surely they should start trying to sort it out and not send you home. I dont really understand how your medical insurance works and why you are not under care now. This isnt just a hypo that most of us have suffered it is an extreme danger to your life.
To Aileen,
Yes my insulinoma was at the head of my pancreas, but when my surgeon went in they couldn’t find it, but they knew the location of it so that’s when he took a piece of my pancreas out. I went into surgery with my blood sugar below 60. So when he took the part of my pancreas out with the insulinoma on that part, my blood sugar shot up to 119. Yes it was a very bold move, but my surgeon is highly skilled and one of the best in the country for pancreatic surgery. The only side effect to all this is the drainage deal, i’m still having drainage but it’s finally slowing down.
The surgery is no piece of cake. I had a NG tube down my nose for 4 days, horrible, never had anything so awful in my life, and couldn’t eat for 10 days, since my surgeon wanted to give my pancreas a rest. I still sleep on my back, just started sleeping on one side but still uncomfortable. But I guess we all have to go through this not to have horrbile blood sugar problems anymore.
I have been walking a mile everyday for the past week, so I guess I’m making some progress. I’m taking the dog to the vet for her checkup and we’re going to Opening Day to the Padres tomorrow. So yes my life is almost back to normal.
But now I don’t have to worry about always bringing my orange juice with me and my Nutrigrain bars everywhere I go. I can let myself starve if I want to plus I have a new body, much thinner.
When is your surgery?
Lauren,
I also lost weight after surgery – and it was an incredible relief to not have to be constantly aware of where I could get carbs/juice/whatever on a moments notice. As I’m sure you’re aware, the psychological stress of knowing your blood sugar could make you, well, “crazy” at any moment was pretty hard to take. All told, I’ve lost 20 lbs since surgery a year ago and have no particular food cravings anymore.
Susie,
Just out of curiosity, I was wondering about the details of your surgery…could you tell me a little more about it? If I remember correctly, your tumor was located at the head of the pancreas (just like mine). I haven’t spoken with my surgeon yet, but my endo said she would have preferred the tumor in the tail, since the head location can lead to other complications. Did your doctors mention why they decided to remove a section? And has your recovery improved? I was just wondering, since I will be going through surgery (hopefully) soon.
Susie, thats what I wanted to hear! Sounds too good to be true, I can’t wait!!
To Lauren,
Since having my surgery I have lost 24lbs. I had my surgery on February 2. Yes it feels great not to have to eat all the time. I eat a bowl of cereal in the morning and then don’t eat anything between breakfast and lunch. Lunch time I only eat a tiny bit, a bowl of soup and maybe a piece of fruit. You will be a new person after your surgery. Yes I have skipped meals and nothing happens to me, back to normal.
Good luck with everything!!
Brendan,
With the description of some of your symptoms, I recognize parallels with my own: I also find myself scanning my e-mails over and over again to make sure that I haven’t misspelled anything or repeated myself. I think the short-term memory loss is one of the things I have the most difficulty with, since I used to take my cognitive skills for granted…not anymore!
Yes, I do have a glucose meter, and over the last couple of months, I have found that it takes longer for food intake to induce a rapid increase in detectable sugar levels. For example, if before dinner my glucose reading was 38, a half-hour after dinner it might only be at 42. It just seems like before, intake of sugar in any form had an almost immediate effect, but this no longer seems the case. I have also tried this with juice (which generally has had the greatest immediate impact on my readings) and the effect is similar. I will definitely continue to watch this, though.
Helen,
Exactly…like I explained to Brendan above, I am always double-checking myself these days. I know I have probably repeated myself to friends and colleagues or asked them to reiterate things…I feel so bad about this, but at this point, I have been pretty open with everyone about what is going on, just so they can understand these problems a little bit better when they come up.
I also have had a couple of bad bouts of hypoglycemia while exercising, which is why I have taken a hiatus from everything except walking (and even with that I bring an emergency granola bar and juice). I used to run and bike on a regular basis, but before I was diagnosed, I was just having too many scary episodes with moderate/heavy exercise…it’s a shame, but at this point, I feel like it is too much of a risk to continue.
Peggy,
I was also not much of a snacker before these episodes started coming on, so I am finding that it is difficult to make the switch. Like many of you all have mentioned before, I too enjoyed eating salad on a regular basis for dinner, but I have found that it is just not conducive to keeping my sugar up at night…not having to eat all the time is one of things I am really looking forward to after this operation!
Thanks for your kind words regarding the surgery…I will keep everyone updated with the time/date. When do you go back to look for the tumor? I can’t remember all the details of your earlier conversations, but have your doctors ruled out the possibility of MEN-1? Apparently, that genetic disorder induces multiple small tumors to grow in the pancreas, often too small for the ctscan to pick up. My doctors initially tested me for this, given my family’s history of thyroid problems. Good luck with everything!
Thanks Helen – very helpful.
I’m curious those of you who had surgery-do you find yourselves eating a lot less or skipping meals? I am dying to be able to not eat. I’m sick of eating! I am so ready to lose some weight but I just can’t! If only I could exercise but any decent calorie burn drops my sugar really quickly. So then I have to injest more calories to get back up. So why bother? Its a vicious cycle! My pants are getting really tight!
Aileen,
Short term memory loss is definitely a result of low sugars. Short term memory loss is definitley a result of low sugars. (just kidding) I noticed it the first year I was diagnosed, though I remember having symptoms of hypoglycemia years before that. It’s gotten worse through the years, but now it’s blamed on my being 48 years old.
Good luck with those frequent small meals. Before this problem I ate very little so it took a long time to get use to eating every 2 hrs. I use to complain about it but it’s hard to get sympathy from people because you have to eat. They would always say, “I wish I had to eat all the time.” You get use to it though and it really is the best way.
That really is a good sized tumor. I think the growth rate must be pretty slow. I’ve had it this long and it still is too small to see. Although, my last test was a year ago. We’ll see what shows up this time.
Only two more weeks! I am excited for you, though I would be feeling nervous as well. I keep thinking I would like to gat prepared physically before I have surgery. I’m not as healthy as I use to be. It’s great you are taking care of this while you are young. Stay strong and think positive.
Hi Lauren,
I think that following the low GI diet is possibly a solution as it helps to maintain sugar levels as we need ‘good’ carbs – plenty of whole grains such as barley and oats, dried peas and beans, root vegetables and whole fruits to maintain the sugar level. However I am not suggesting going on a diet just maybe including these in your daily diet and also eating every 2-3 hours. Also keep glucagon/glucogel for an emergency.
When I was in hospital for testing before I had my 72 hour fast as I was in a local hospital prior to going to Barts in London to endocrinology, they (local hospital) suggested I eat loads of carbs, I was eating (per day) 2/4 jacket potatoes, biscuits, toast with jam and porridge in the morning and I was still having hypos & sick of eating, eating & eating, plus I had put on about 4kgs (8.8 lbs). Then I met someone who suggested I try maintaining my sugar level by ensuring I have bran, fruit, lentils & seeds etc in my daily diet.
I did try to post this yesterday with some website links but I don’t think it’s allowed. One of the sites I tried to put on was a BUPA website with some info on, so go onto bupa.co.uk website and look in health information, then diet & nutrition, then The long slow burn. This has some useful tips and ideas.
Hope this is of some use.
Helen
Aileen,
I agree with your endo with regards to permanent brain damage. I had all the common symptoms as my consultant listed of blurred vision, palpitations, sweating and weakness, as hypoglycaemia produces adrenaline which causes these effects.
The lack of food to the brain results in the signs seen which usually are periodic. Other signs are: depression, lethargy, blankly staring with poor response to sound or touch and periodic weakness. More severe signs are stupors, seizures, severe weakness, and coma/irreversible coma.
I know I struggled with concentrating and always double checking with myself or colleagues on my spelling. Whilst in conversation I would forget what I was talking about or why I was talking about it – not very nice.
I also experienced 2 episodes where I collapsed with the second episode I lost consciousness; this was bought on by exercising.
Aileen,
Anecdotally, I definitely think my short-term memory has been affected. It’s obviously impossible to quantify, but I also have more difficulty with things that have always been fairly easy for me (like typing and spelling). I’d been undiagnosed or misdiagnosed for over five years, but only for the final three did I have blackouts and confusion. Prior to that, my symptoms were frequent migraines that I could treat with Imitrex, a migraine medication. It turns out that low glucose can trigger migraines, but I had a family history of them, so they chose to just treat the symptoms.
I definitely followed the “frequent meal” plan, but they ended up becoming “frequent nearly-full sized meals” as my sugar levels would drop precipitously if I couldn’t keep up. As frustrating as the PICC line was, it allowed me a normal schedule. Do you have a glucose test kit? My strategy initially was to test myself every hour to find out how quickly my levels dropped, which gave me a baseline expectation of how frequently I needed to eat (and how quickly certain foods raised my levels).
Brendan
Peggy,
Yes, I am still waiting on a surgery date, but should know something more concrete after I meet with the surgeon next week. My endo indicated that the date should be in the next couple of weeks, which is both exciting and scary at the same time. I guess that it’s important to get the tumor out as soon as possible, since it already large (1.8 x 2.2 cm). Has anyone heard about the growth rates on these things?
Also, regarding the brain damage question: I asked my endo about that, and she cited a study involving hypoglycemic patients, and permanent brain damage could not be substantiated. However, I have this feeling that short-term memory loss is becoming more of an issue with myself. I have always had the ability to remember minute details of my daily activities without needing to write lists, but I have found lately that I am unable to do this so well. I am forgetting things ALL the time now…very frustrating! I guess this makes sense, since if I am walking around with a glucose level of 40, my brain is getting about half the sugar it needs to function properly. Anybody else having issues with this?
Also, with all this discussion of food, I was wondering if anyone has had experience with the “frequent small meals” plan. My endo advised me to follow this regimen, as it would keep me going stronger throughout the day, and would possibly reduce some of the weight gain. In other words, taking a normal-sized meal for breakfast and splitting it into 2 or 3 portions, to be eaten throughout the morning hours. I find that I am having an extremely hard time following this pattern, but it makes sense.
You guys are right on. Beans and hummus are my favorite carbs! I had a taco salad for dinner last night with a little chicken and ton of black beans and corn mixed in.
I had something before I went to bed too, but my husband said I was acting scary around 4:00 a.m. and had to get me to drink some milk. I don’t remember. Usually that works well, but not always.(I should have had a sweet potato) I remember thinking I had a problem with eggs too, I still wonder.. I drop pretty fast after eggs, even with a few potatoes and toast.
Homa,
I miss those salad lunches too…someday.
nesidioblastosis, I think,is just an abundance of over
active cells in your pancreas. I know it’s a disease that affects babies, but I’ve read that there have been a few adult cases. I wonder how rare that is? If I find that site again, I’ll let you know. Hope that packet comes soon.
Aileen,
Are you still waiting for a surgery date?
Lauren,
Beans are an outstanding source of complex carbs. I would eat hummus for my lunch with some pita chips and a salad and I never would have low blood sugar problems.
Wow that explains a lot. I was wondering why 3 eggs and a piece of wheat toast would only last an hour or so!
Homa- I eat a huge (I mean obnoxiously huge) salad for lunch and I put a can of drained and rinsed black beans on tops. Beans are one thing that will hold me for hours I guess its the fiber and they are a complex carb. I started eating beans for breakfast for this reason.
Lauren,
I could never eat eggs in the morning, I would always get hypoglycemia. I always had oatmeal in the morning.
Susie
Susie
Thank you for the great suggestion with sweet potato. I will definately give it a try.
If you guys have any other good complex carb examples, please share them. As much as we have to keep snacking and eating regularely. I am sure we could use new suggestions and new food to try.
Peggy
That is neat that you eat oatmeal before bed too. I like it because it is hot and comforting and as funny as it may sounds it doesn’t require much chewing. It is hard enough to eat somethng before bed. so I try to make it as simple as possible, lol. I eat the oatmeal and couple of spoons of peanutbutter before bed. I have never heard of that disorder that you mentioned. goodness, i can’t remember what it is called. I resarched it on the internet. I don’t think that is what I have. I started having symptoms when i was in my 30’s. But I will be sure to bring it up with my doctor.
Lauren
I agree with Peggy and Susie that we need more complex carb than protien. Before I was diagnosed with insulinoma. i was trying to eat mostly protien specially before bed, and I would end up having an episode. for a while I thought I was alergic to eggs. I would eat eggs or eggs and sausage for breakfast and then an hour later my sugar would drop very low and I would have a major episode. I was told later on by my doctor that in the morning, my sugar was probably low and I needed some carb to bring it up. from whatever I have red on insulinoma it states that we need more food rich in carbs, be it complex carbs of course. Since we produce so much insulin. I miss just haivng a salad for lunch. I know if I do that right now, i would be asking for trouble.
Best of luck to everyone
Homa
To Lauren & Peggy
My doctor recommended the sweet potato. My kids have so many activities after school. I would microwave one, poke holes in it first then I would wrap it up in foil, sometimes I would put a little Smart Balance on it, take a plastic spoon with me and eat it in the car while taking my kids to there activities. The sweet potato would hold me over until dinner. Also on The Oprah Winfrey Show she had that Dr. Oz guy, he said the sweet potato is the most perfect food, tons of fiber, Vitamin A, folic acid.
Let me know how it works for you. When you have severe blood sugar problems like we all do and did, protein doesn’t help. A complex carb is the best thing.
Good luck!
Susie
That is definitley true. I’ve been gaining weight like crazy and I’ve generally always been a skinny person but over the last few months I can’t stop gaining because I’m eating round the clock. I think I will try omiting some of the cheese and other protein and try relying more on oatmeal and whole wheat crackers! and of coarse, sweet potatoes! Maybe that will help.
Lauren,
Great idea from Susie, I’m going to do that too. I always appreciate suggestions,even though I should just be able to figure these things out. You know, I’ve always know about how protien is suppose to be a slow source of sugar, but it doesn’t seem to help me at all. When I have protien with a meal, I drop just as quickly. The only thing that works is high carb! although it has to be a complex one with a quick source to get me up and then last any lenghth of time. I know it goes against all the dietary rules, but I think that’s because the insulin output is constant regardless of what you’ve eaten. However I still try and have small portions of protien often.
Thanks so much Susie I will try that! That’s much better than peanut butter and cheese as far as calories!
To Laura,
My doctor told me to eat a small sweet potato in the afternoon when my blood sugar would drop. This really helped me. It’s a complex carbohydrate.
Homa,
Thanks, I’m still waiting to get a packet and its driving me crazy, I have suffered with this for so long now that I have a solution I want it done ASAP!
Do those of you that eat carbs, oatmeal, rice milk, whatever to sustain, do you eat a source of protein as well? Or just the carbs? I was always told that I needed the protein to keep me going, of course these were the same people that told me my problem was strictly dietary!
ST,
I forgot to tell you that I have been praying for your wife. I’m sorry it has been such a long difficult road for her. I’m not sure I understand, the stricture and atrophy,
how would her pancreas be able to drain? My mother had the intestine to duct procedure and is on her third week of recovery. She seems to be healing properly so far. Hopefully the right option will occur without the need for a distal pancreatectomy. Please keep us informed.
Susie,
I tried to continue with my lifeline vacation every year, which is yosemite. But I always have an episode. One year they couldn’t wake me so they took me to the hospital. Last year they had to call the paramedics. The time before that we made freinds with a doctor there, who was looking for a site and got one next to ours. I think the problem for me is the altitude. But I will never give up our trips there.
Homa,
I just got your comment. Thank you. I get by with keeping rice milk with me. I am constantly drinking that all through the days.
Helen,
Nice to hear from you again.
Peggy,
That would be pretty cool to have a party to meet everyone that has gone through this. You could call it the insulinoma party. I know what you mean about your house becoming so disorganized. Last year I wanted to volunteer and my kids school but they wanted volunteers in the afternoon and that’s when my blood sugar would always drop. I was always to scared to volunteer because I would have to pull out a snack or if the snack wasn’t enough I might start acting real funny. So I never did it. It starts to overtake your life. Forget about traveling, can you image being stuck in a airplane, one would have to take so many snacks with them or tons of sugary foods.
Hopefully you’ll get your’s taken care of soon.
Every afternoon now when I’m so hungry and don’t eat anything I don’t have any more blood sugar drops, I’m back to being normal again. That’s when I would really get hypoglycemia, every afternoon between 3:00 and 4:00, my body was like clockwork. I never went anywhere without a small carton of orange juice.
Well take care.
Thanks Lauren,
My husband doesn’t check my sugar when I get that low, I think he’s to nervous trying to decide whether or not to call the paramedics. It took me years to get in the habit of checking my blood sugar often. I have a perscription for enough strips to check it 8 times a day. Have you trained your husband to do it for you? He really needs to. At least to bring you the monitor a few times a day. My daughter does that for me.
My doctors won’t confirm this, (just regular G.P.’s) but while taking the diazoxide, I have frequent bladder infections. I’ve wondered if this is because of water retention? I wake up with huge bags under my eyes because of it. That is so attractive. When i first tried to go off Diazoxide, I had like a rebound effect. I got real low, so be careful. I’ve always had a liquid form rather than the tablets, but it does not raise my sugar that much. Maybe you could be on a lower dose that would not cause so much water retention.
Aileen,
Insulinoma for 30 yrs! I don’t feel so bad anymore. I wonder if they ever record how much brain damage is caused.
Has anyone ever read that someone could have a hypoglycemic seizure if their blood sugar was only 60? Does anyone have an experienced Endo that wouldn’t mind answering that question? I have a neighbor who has hypoglycemia, and has just recently had two seizures. The last time they tested her sugar at 60, which is low for having just had a pasta dinner. They haven’t found a cause yet…how weird would that be?
Homa,
I’m eating oatmeal before bed! It’s difficult since I am always full,but a good idea. I can’t remember if I already asked you this, but has anyone suggested nesidioblastosis? (sp?) I’ve read that there has been a few adult cases. They might have to take part of your pancreas to find out, which I am not too willing to do.
Susie,
I’ve only gained about 15lbs. Maybe I have a lower insulin output? I wish I could find my records. My mind (and house) has gotten so disorganized since this disease.
After I read your last e-mail, I had a dream that I met you and your husband. You were very pretty 🙂
If I had the money, I would throw a big party and meet all of you. It’s a weird bond to have, but I’m glad your there.
Lauren
The doctor I am supposed to go see at Mayo is also dr. Service. I just have to fill out the package they sent me and schedule an appointment. or let them fit me in. I think I will do it after April when things settle down a little bit. don’t let what happened to me worry you. It is important to stay positive. It was my worse fear, but I would still rather go through all that to at least TRY to resolve this situation. I am confident they will find it at Mayo though. Thank you for sharing with me what you snack on. Any tips helps. Let me know when you are going to go to Mayo. I will keep you posted. You had asked me a question last week and I forgot to answer it, sorry. I live in Charlotte North Carolina. so i am not close to minnesota either.
Aileen
Thank you for sharing what you snack on at nights. It sure helps to see how other people are coping with insulinoma and how everyone is managing it. At least we try to manage it to the best of our abilities. Good luck with your doctor appointment and hope that they would chose the least invasive procedure. The important thing is that they have localized your tumor.
Good luck
Peggy
I am sorry to hear about your episode. I have blacked out before and could barely remember what had happened, but they have always been able to feed me something to wake me up. Your blood sugar was very low. The lowest my blood sugar has been documented is when I went for glucose tolerance test five years a go. Of course I had to go fasting, and I was ok when I walked in the doctor’s office and later found out my blood sugar was 29. When I went back the next time, the nurses were astonished that I was functioning normally at 29. Wonder how low it goes when i have an eposode.
I kind of had a mild episode today. didn’t really black out, but I slowed down. took me for ever to do simple tastks, but all in all not too bad, considering it could have been a lot worse. You have been dealing with this for a long time and I hope you will be able to have it taken care of soon.
Jon
I wanted to thank you for posting this coment board. It has been such a valuable resource and a source of comfort knowing that there are others who understand what we are going through. I wish I had found it beofre I had my first operation. I did so much resarch trying to find out about recovery after surgery. Since I had never heard of anyone else who had gone through this. I did not know what to expect. Next time when i go in for my second and hopefully successful surgery I will be more prepared thanks you
Best of luck to everyone
Homa
Glad your still with us Peggy, wow! Thats low. I have blacked out before, last Monday was the last time, but I’m never with it enough to think to check my blood sugar and nobody does it for me. I know I’m still “with it” at 45 at least I think I’m still with it my husband thinks differently! This board has been so helpful to read, it helps the time go by as I sit here waiting for a surgeon to get back with for seems like eternity!!
Hi Lauren,
I had a bad reaction to diazoxide, I had hives rash from head to toe. I was doing fine on it for the first 2 weeks then I started with very itchy ankles, then by that evening my legs were covered in a rash, by 3am I could not take anymore and got into a cold bath to relieve the itching. I went in to see my consultant who was sure it was the diazoxide, he asked that I stop taking them and wait for the rash to go then start up on diazoxide to ensure it was the tablets causing the rash. Yes it was the tablets, as the itching started up and before I could get a rash I took some antihistamines. But I believe this is a very rare reaction to have.
I have had my operation last April. Thankfully it all went well. Our surgeon here in London (our being Angie & I), tells his patients that he does not know until he has opened you up whether it will be a whipples or an enucleation. So it was very scary to go into theatre not knowing, but having faith & confidence in my surgeon played a big part in going through with the surgery. Also that I am 36 and did not want to live with insulinoma and taking the chance of being told 10 years or so down the line that it needs to come out. He is a perfectionist and will do his utmost best for you; I believe he took about 3 hours to find my tumor, which to me reflects his perfectionism, in total I was in theatre for 8 hours, had to have a scan whilst in there. When I woke up I was comfortable enough besides the tube that goes up your nose into your chest, that had to come out as it was not doing it’s job, I was vomiting therefore it was bypassing the tube. I was in high dependence unit for 2 days and had an epidural for about 4 days, which was great. They put that in before I went to sleep to help with pain afterwards. Then they tried to take me from the epidural straight to morphine tablets which I can say did not work for me. I was in agony for 7 hours, felt worse than giving birth to my son. My whole stomach area was burning, think this was the nerves feeling very raw. Anyway they eventually came and set me up with a patient control system which is Intravenous Morphine where you safely self-administer pre-determined doses of analgesia, until you feel comfortable. Overall that was probably the worst part of the whole experience for me. I was in hospital for 2 weeks with a few minor complications.
I had all the tests between October 05 & May 07:- 72 hours fast and I lasted 36 hours before my sugar level was 1.2 mmol/L (don’t know what that is in mg/dl) but normal readings are between 4 & 6 and border line is 2.6 mmol/L, I had double vision; sweating; disorientated and shaking. They think I had only insulinoma for about 2 years which is when my symptoms started but they were only a bit of spaced out feelings and blotchy vision. I got more symptoms as time went by and also started to happen more frequently. A month before I was diagnosed I had 2 episodes where I collapsed, as I was running around in the park with my son and obviously my sugar levels had dropped very low and in the last episode I did not know what was going on around me. I still did not know at this stage what was wrong with me.
I had 2 MRI scans, ultrasound, CT scan, glucose intolerance test, angiogram. My tumor was only half the size of my thumb nail. So after confirming that I have a reaction to diazoxide, they put me onto injecting myself 3 times a day with octreotide, which would control my hypo episodes but I still had them whilst on this medication, therefore this was another deciding factor to go through with the surgery.
So this is a very difficult journey for anybody to go through and a very lonely with an extremely difficult decision to make. The best advise I can offer to anybody is most importantly your surgeon has to be experienced in this procedure and if you have all the faith & confidence in him/her, preferably a specialist in pancreatic surgery; go with your gut instinct and research.
I am coming upto a year now since my surgery and am doing very well, they are going to see me over the next 5 years (yearly visit) as I was young to have had insulinoma. I agree with Angie get back into your normal routine and if you did some form of exercise get back into obviously very slowly. I have not got back into swimming and feel that if I had done so my muscles would be a lot stronger now, but I am doing some tummy exercises to strengthen my muscles.
Anyway I hope I have been of some help and wish you all the very best.
Take care
Helen
Has anyone else had bad experiences with diazoxide(Proglycem)? I started taking it Tues and it did help with my sugar levels I actually got up to 103 which has never happened before. However I started gaining weight and retaining water big time! I started on diuretic which helps but I still feel huge! I think I’m going to get off of it so I don’t have to buy all new clothes!