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.
I have an malignant insulinoma with metastatic spread. Insulinomas do not turn from benign to cancerous tumours. My consultant, who is one of the World leaders in this field, assured me that it is an either benign or malignant tumour. And that only 5 to 10% of all insulinomas are malignant.
A very useful guideline on insulinomas can be found at: http://gut.bmj.com/cgi/content/full/54/suppl_4/iv1
Hi Sue,
I have never taken a GTT (I assume that stands for glucose tolerance test), but I wouldn’t think it is so relevant in regards to an insulinoma. As many have written before, a supervised 72h fasting test is the way to get a diagnosis for an insulinoma. If insulin, proinsulin and c-peptid are elevated when your blood sugar gets very low, then you can be pretty sure it’s an insulinoma.
I have taken a few “normal” fasting tests, and none of these looked very odd in themselves. My blood sugar was low, but normal, and insulin was high, but normal. Not until they fasted my for 2½ days did my blood sugar get critically low, while my insulin etc was way higher than normal ranges. I think it varies how and when these insulinomas are active, but a “normal” person would not have elevated insulin etc after fasting and while having low blood sugar.
With your symptoms I would definately ask for a 72h test. For most “insulinomiacs” it doesn’t last very long anyway.
Good luck!
Wow! Thanks to everyone for their story. I have been fighting low blood sugar for probably 15 years. I handle it by eating every two hours. Lately, though, it seems like that isn’t quite cutting it. The low b/s creeps up on me anyway. I have had a few mornings in the last 6 months where I have the HARDEST time opening my eyes and actually waking up. I didn’t think until recently that maybe my b/s was too low. And, I have been having night sweats that I assumed were menopause, but now I wonder if my body is reacting to low b/s and trying to bring it up. When I do a fasting b/s and insulin, they are always normal: b/s around 85 and insulin around 8.8. Has anyone at all with an insulinoma have a GTT that sent their sugar AND insulin up into the 170s, then the precipitous drop into the 50s? I know that sounds like reactive hypoglycemia, but like I said, it was controllable until recently. Now, eating is my goal everyday. I have tried going on a low glycemic diet(in case it for sure was reactive hypo.), but the less sugar I have in my diet, the more hypo I get. None of this makes sense to me.
Hi All!
Well as some of you on her know I have insulinoma twice and they have both had exactly the same symptons, have behaved the same, but I have had to deal with them differently. The first I had removed, along with part of my pancreas and all of my spleen. With this insulnoma, I often was in a coma in the morning and had to be woke up by glucose being put on my lip and spooned into my mouth. It was hell. I had some good days when it seemed like there was nothing wrong and then other days when I was away with the fairies. Eventually I fell asleep on a bus , and I eventually woke up in a hospital having suffered a very severe hypo,being only 0.4. The second insulinoma many yers later which I have now is being ongoingly treted with large amounts of diazoxide. The medication does work even though I dom have a few bad days; and nights!! Anyway, I have learned to live with it, I have had to. Its possible if you can take diazoxide, but it does mean you have to live the rest of your life differently to if you are insulinoma free. After my first op, I had my life back as I had once knew it, now I have to accept the limitations I have. I have loads of tips on how to cope but it would be a book rather than a thread on a forum! LOL! Anyway, if you can have it removed go for it, you can more than likely go back to whatever normal is. Good luck and love to all.
Janet
Marylin
Its all very well to say ‘live with it’ but it gets worse! the symptoms do not stay the same as the tumor gets bigger which it probably will the more insulin will be produced and more damage is done to your body. For the body to operate on continual low blood sugar things like migranes get worse. My sight was affected occaisionally , my hair went very thin and my skin and nails suffered. I didnt know why any of this was happening but the difference after my op with normal blood sugar has been amazing. Also the diazoxide tablets that I took to help balance my blood sugar gave me horrible water retention and they said I was too young to contnue on medication as my problems were quite bad to start with.
It can also turn cancerous, only 10% are but who knows. And are you willing to chance it?
Its a frightening thing but I think everyone who has been through the op – whipple or not – will say they wouldnt go back to that life.
Angie
Hi All,
I have not been on for a while but I have been reading you post’s just about every day. I have been going back and reading from the start of this blog. It all is very helpful to me trying to figure out what is going on.
I am trying to get ready for my trip to Mayo and gathering info and questions to ask up there. I see my doctor up there on the mornning of the 19th and see the surgen on the 21st. I guess my doctor’s down here think their is an insulinoma and from the way they have set up the appts it looks like the doctors up there think that is what we are dealing with. I have a lot of the symptoms you all talk about.
Angie Phillips
I was so glad to hear how they do the cal. test. I have been thinking they will be doing it on me to find this little devil. I am afraid of the test and the way you tell it I think I can handle it.
Sue
It looks like you got a lot of answere’s. It is good to see so many sharing what they have gone through.
My husband still thinks I can learn to live with this. If it is just plain Hypo. I will have too but if it is the insulnoma I think I want it out of me.
Well I hope you all are enjoying the fall and getting ready for all the holiday’s comming up. I’ll keep you posted as to what happends on my trip.
Bless you all, Marylin
I may as well add my two cents..For years my poor hsband had to wake me up and give me milk one or two times a night. (it was too hard trying to get me to chew anything when I was out of it.). For a while I woke up through the night on my own and knew my sugar was low but could feed myself. Some months I would wake up in the morning fine without eating through the night . Then there were more than a dozen times I woke up with a bedroom full of paramedics. And three times I went to sleep and woke up in the hospital! I was lucky I woke up at all! It’s not only different for everyone, but different even for one person! Crazy ,inconsistent disease. Glad it’s all behind me! I trust it will be for you as well.
Peggy
Sue, I never set an alarm or anythign to wake up at night to eat. I would keep granola bars or protein bars on my nightstand for when I happened to wake up. I did wake up with low blood sugar every day and that probably would have been avoided by eating during hte night, but I decided sleep was more imporatand and I just ate every morning right away. Good luck!
Laura
Sue,
I was actually told by my specialist to set my alarm to wake at 2 or 3 in the morning and eat and drink something because one morning, if I did not, I may not wake up. He said your body just adjusts to those very low levels but there comes a point where it doesn’t cope and off you go into a state of unconsciousness. So I ate every couple of hours throughout each and every 24 hours. I was even taking diazoxide at the time as well. I am well now and my life is great, I cannot believe how I dragged myself through each day before I finally got the diagnosis.
Jane
Sue,
I often could sleep all night but occasionally would wake up and need to eat in the night. I usually had problems in the morning if I didn’t eat right away or a couple hours after any meal if I didn’t eat something. My blood sugar drops were not consistent as to time of day. Have you tried eating a really good breakfast including protein and carbs? If you do and still have blood sugar problems, then you have a problem.
Great to have the updates back!
Sue,
My symptoms have generally been pretty mild, and I have never had any problems during the night. At my 72h fast, I lasted 2½ days, which I think is quite long compared to others. My blood sugar was 1.7 mmol/L (or 31 mg/dL, just multiply by 18) at the end though. I think perhaps having had the condition for so long (over 8 years I believe) has made me more used to low levels.
I am still awaiting more tests, as they are unsure if the growth the have found on my pancreas (through EUL, MR anc CT scans) is in fact the insulinoma. It probably is, but they want to be extra cautious.
I believe you will find other posts by people, who have not had such severe symptoms that they had to eat or get assistance during the night.
Best of luck,
Nicolai
HI Sue
I never ate during the night, however I never knew I had this condition until a year before my diagnosis. I think if it had been any longer i would have had problems. I used to wake in the night with profound sweats completely drenched – this is one of the problems that led me to go to the doctors – this was a symptom of extremely low blood sugar and it was my bodies way of warning me before I got to the stage of not waking. I also have to say I was dieting, on Slimming world but high carbs for many years, although I was having trouble losing weight I was also eating the best thing to keep my blood sugar level. (ha ha level isnt the actual word but I would have had far more severe trouble if not)
I had a catheter calcium infusion test if that is what you are talking about. They insert a tube into your veins in the groin and pass it up to other major vessels to release calcium near the liver and pancreas to test if and where more insulin is produced. If it is produced anywhere other than the pancreas it usually means you have rogue insulin producing cells or insulinoms in other parts of your body. This would be detected by having a full body infusion test.
As far as I know eating calcium does not increase low blood sugar, a bit unsure of my facts here but I would imagine it has to be a concentrated amount to stimulate insulin production otherwise they would be able to test orally rather than surgically. This would be unreliable due to the other foods ingested and would not be able to detect where the insulin was being produced.
All good stuff tho and very clever, I was awake during it and saw the wires on the screen releasing the flow of calcium near my liver and kidneys and pancreas.
As Kim says the symptoms do change the bigger the insulinoma gets – towards the time my op was due I had a few very odd times – losing time and feeling very bad, very shaky and would suffer hot sweats specially after any exercise. My normal sugar levels were 2.2 (UK system – cant remember the conversion but 1 here is coma, my lowest was 1.6 and I was still walking around) I believe because I had had this for 10 years my body could cope with very very low sugar but it was pushed over the edge when i started more regular swimming and training.
I do go on – sorry – anything you need to know just ask someone will help!
Angie
Hi Sue,
I think things are getting back to normal with this site. My experience was that as my tumor became more “mature”, I had to be more diligent about eating. At first it was mostly stress and physical activity that brought about a low that evolved over a period of about a year and a half to the point where I had to eat during the night or I wouldn’t wake up in the morning and I had to eat every two hours just to “keep my head above water”. So the symptoms change over time and from day to day, but with the gradual result that the tumor seems to be producing more insulin on a more steady basis as time goes on.
I’ll ask again. Maybe my last post wasn’t seen well as I see everyone talking about not getting updates. I just joined a couple of weeks ago, so don’t know what the original format was like.
My question is, is there anybody with an insulinoma that COULD make it through the night without having to eat? I just have trouble all morning keeping my blood sugar up, but as I eat, eat, eat, later in the day I have less trouble.
The second question is, I read that they can use an indwelling catheter to test for insulin release when exposed to calcium(calcium stimulation test). Has oral calcium ever caused anyone to have extra insulin release, causing extra problems with drops in blood sugar?
Thank you all, This place, with people who have experienced insulinomas, is a WEALTH of information!
I think the site is working correctly again… I hope so for all our sakes. It is an absolute life-saver!
Good luck to all
John
Thanks so much for the update on the site.
Is something wrong with this page. I have not
got any information in several months.
PS It kept asking me to sign into Twitter but I just ignored it and carried on. It seems to have worked.
Jane
Thank God!!! 😉
Jon Mikel,
Aa haa! I wondered what had happened to the notifications. Good to have it back.
Jane
Dear readers and creators of UnboundedMedicine. Most of us are experiencing difficulties in receiving notifications of new comments. This was my mistake (since I’m not a programmer) because when I upgraded the blog’s version I didn’t notice that I haven’t re-activated the plugin “subscribe to comments”
I don’t know if its already fixed, please let me know. Maybe you will have to subscribe again.
I’m so sorry for this inconvenience.
The pictures are better now. As much as we think about the pancreas, I don’t think any of us really wanted to see one. Thanks to whoever or whatever controls that part of the site.
By the way, I am just over two months from surgery and feeling great. I feel almost back to normal and am definitely living a normal life. Good luck to those still working on a solution and know that time moves quickly at least when you look back on it.
April
The new format has thrown me a bit, but good to see the site going, having such an unusual illness, its this kind of site that is a God send to all sufferers. Love to all.
Janet
Charlotte
I am so glad this horrible disease is over for you. It sounds like all went well. I had fever the first day and it was because I did not inflate my lungs enough. Be sure to breathe really deep and cough. It know it will hurt but just support your abdomen and do it. I stayed up most of the night working on deep breathing, had a night sweat and my fever broke. I had high sugars for two days post op and my surgeon refused to let them give me insulin. She said to the staff you have no idea what this gal has gone through, no insulin!!!. I was back to normal by day three and have stayed right there. It is great to see your post and I wish you a speedy recovery.
Hi everyone. Just realized that things couldn’t be THAT quiet on this site … and indeed they werent, just a format change I guess. I have a lot of catching up to do!
April
Thanks for the warnings about the photo’s at the top. I did not look at them because I didn’t know what they were.
Charlotte,
So glad you are doing so well and so happy you are insulinoma free now. “YEA”! Thanks for sharing with us about your surgery. It is a big help for us that are still waiting for the surgery.
Pamela,
Nice to hear from you and thanks for your encouragement.
Blessings to all,
Marylin
sorry for the half-post:
Hello everybody!
I am now happily insulinoma-free and hopefully back in my home in just a few days 🙂
I was in surgery tuesday 22th Sept for 3 hours and the Norwegian specialist and the Danish upcoming specialist did a wonderful job. My insulinoma could be enucleated with just a few clamps and two stiches and I was awake already in the surgery
I have 3 small inscicions and one hole for drainage. It drains very little but I had a fever yesterday and a little bit today so they are checking the amount of enzymes in my drain and also my blood for various infections.
I am already on a minimum of pain killers but I have to get something extra for this night as I have diffilculty breathing right when it hurts too much.
I am extremely grateful for the fine treatment I have had in the surgery department and the best of it all is of course that MY BLOOD SUGARS ARE NORMAL !!! They were high the first days but falling quickly to normal level.
To all of you on this list waiting for diagnosis and surgery – keep faith. I hope for the best for all of you.
Best regards
Charlotte
Hello everybody!
I am now happily insulinoma-free and hopefully ba ck in my home in just a few days 🙂
I was in surgery tuesday 22th Sept for 3 hours and the Norwegian specialist and the Danish upcoming specialist did a wonderful job. My insulinoma could be enucleated with just a few clamps and two stiches and I was awake already in the surgery
Hi All – Long time no posts!!!!
Like Pamela I havent had any posts since 5th August so am very behind on all the news! The site looks great? Is it automatically subscribed because it lost me!
To all the new people I found this site in 2007, and was the first to write on it. It has been a fantastic help and comfort. Many people have passed through it before, during and after their op. Many of us still view and write hoping to help with any info that we can.
Angie – and im still around and about!
I have not got the posts in so long as well! I joined this blog over a year ago when i was diagnosed…. and the support, and encouragement was amazing! I hope to get caught up with all our new members, and hope i can help with any advise or support! Im sending encouragement to those of you struggling…. you can be cured! hang in there! Don’t give up! Love and prayers!
Pamela
Do we have to have these photo’s at the top of the page? Really, none of us need to see that especially if we are getting ready to have surgery or if we just had it.
Don’t look if you haven’t already.
April
I’m sorry. On my last post I meant a fasting INSULIN at 8.8!
I have had fasting b/s at 100, and fasting glucose at 8.8. I still fight all morning to not get blood sugar drops. I always HAVE to eat lunch by 11:00, or my b/s drops. Even if I eat something a little at 10:00, like a handful of cereal(Life). Today, I didn’t get my lunch until 11:30, and as I was eating, I started shaking. I tested and my b/s was 52. Is it possible to have an insulinoma with my fasting numbers above, and then maybe it starts dropping all morning, even with eating? I’m so tired of this.
Hi Jackie I understood what you ment, no problem. Thanks for your post’s. I do appreciate all the encouragment. It is getting real now and I am getting the jitters. I will do fine but I don’t know about my husband.
We are going on line and look up some inexpensive motel’s up there. It looks like we will be spending a few day’s up there if I do have surgery.
Well thanks for your post.
Blessings
Marylin
Marilyn
I read my post and it did not say exactly what I meant. Fifty years is wonderful. But now that I don’t have this awful disease everything is better than ever. It is hard to describe but you will soon know what I mean. Once that awful tumor is gone it is like a new lease on life. I hope that soon you will get to experience a new beginning tumor-free.
Marilyn
Happy Anniversary early. The best years are yet to come. The next anniversay will be awesome.
Hi to All,
I hope you are all doing well today. We have another beautiful day going on here in Indiana and I do appreciate it so much.
Ron and I are going to have dinner with all the family for our 50th anniversary on the 10th of Oct before going to Mayo for test and surgery? I will enjoy being with family and the distraction will be good.
Again I want to thank all of you who have shared on this blog. It is a great help but I am sure you know that since most of you have gone through what I am dealing with right now.
Thanks and blessing to all!
Marylin
Thanks Jackie!
Well I did hear from Mayo and I am going to see the doctor at 8AM Monday the 19th of Oct. and see the surgeon on the 21st. So the ball is rolling and I am glad.
I am going to get my notebook organized with question’a and stuff to ask when I get up there.
Blessing’s to all
Marylin
Marylin
No better anniversary present than getting your lift back. I hope they diagnose this sooner rather than later and get you on the road back to a far better life.
Woops it is insulinoma! What can I say I can’t spell.
Heidi
Boy! I didn’t even think of the insurance thing. I guess I have been real lucky so far. Really I have only driven a car about 4 or 5 times in the last 6 years. I am just not comfortable going out on my own and when I go out with friends I ask if they will drive. I didn’t think of how I have restricted my life until just the last couple months.
Since I see how the rest of the insuloma’s patients have had recovery from this thing it has made me think of what I have given up. Until a couple months ago I didn’t know what an insuloma was and now I can see my freedom returning.
I talked to the doctors at Mayo secretary yesterday and she confirmed that the doctor has rec. my records and since the doctor I was ref. to is semi retired he told her to get me in with another doctor up at Mayo. He said that way I could get in this month. She is going to call me back with more information. I kinda wanted to stay with Dr. Service since my doctor here referred me to him but I guess they all are good doctors up there and have experience with this insuloma thing. So the ball is rolling. I am glad and I know it sounds dumb but I pray they do find an insuloma so I can get better and get my life back. I just have to get my husband on the same page.
What can I say, He just loves me so much he is afraid of things not going right. I am a lucky one. We will be married 50 years on Oct. 10. I may have told you that before I don’t remember. Well we will celebrate up north at Mayo it looks like????
Thanks for taking the time to blog appreciate it so much!
Marylin
Marylin,
Our local doctor told us that if Mike didn’t test his blood before getting in the car to drive, he would not be covered by insurance if he had an accident, because he would not be able to prove that he was stable. He had seen several insulinoma patients over his 30 years practicing here, and he knew all the issues we would face. With our heavy snows and icy roads, we took him seriously and Mike always tested particularly after work when he had only been snacking since lunch.
You’re getting closer!
Heidi
Hi Jackie,
Thanks for the advice! I had a doctor tell me a year or so ago to be sure and check my blood sugar before I got in the car to drive anywhere. I thought he was being extream but I did what he said. He also told me I may have to go to Mayo and I thought he was out of his mind. That is called DENIAL !WOW !
I am with the game now and I am working hard at doing the right things. All the info. from this blog has helped open my eye’s to how real it is.
I am glad I read some of the blog’s before I went in to talk to the new doctor this last June. I understood what she was telling me and I listened close and I didn’t blow her off like the other doctor. She is sending me to Mayo.
I do keep sugar and some peanut butter in my purse all the time.
Thanks for your help!
April,
I want to thank you also for your support and advice.
As a matter of fact last night it occured to me to go back and read from some of the blogs in 2007. I started writing down the names of some of the test and some of the medication’s I saw on there. I didn’t know what I was going to do with that info but if the doctor at Mayo mentions any of them I will know they had been used before and also I will be able to ask about some of the test. I am so ahead of the game since I have had all of you to feed information off of.
The fact that you have reaffirmed what I have done is a great help. I don’t know why I even thought of it. My husband was so against me doing that. I let him read your note and he understands it is better to be armed with information when we go in together and we will be going in the same direction instead of fighting one another on this.
We will hold onto the positive and kick out the negative and keep our spirits up.
Thanks for your help!
Marylin
Marilyn
Several of my relatives were very worried about my having surgery and were giving all sorts of advice without really understanding what the issue was. My Dad thought I should wait until my children were grown before I had the surgery!! I found that for me it was best to focus on the facts. I made a notebook with all my test results and notes I had taken while talking to doctors. I included information from the web that helped explain what an insulinoma was and I even had a color coded diagram of the pancreas. I had a special place to write questions that I thought of. When it came time to make the final decision, I went over all the information I had gathered with two people whose opinions I respect and value. My husband and my sister. After getting their input I made the decision. I chose to avoid discussing my condition with people who told bad hospital stories or insisted that I had or could have cancer. When I got calls from these people I let my husband handle the call. So my advice is to get as much information as you can and focus on the facts. My husband went with me to all the appointments and I let him ask as many questions as he needed so he was just as informed as I was.
One of the hardest things about this condition was making the decision to have the surgery but I think it was worth it for me. I feel so much better.
Good luck. Hopefully you will hear from Mayo soon as before long you will have much of this behind you. Meanwhile, eat often and try to plan some simple fun things to do to keep your mind off insulinoma.
Hi, my name is Christopher and I’d like to thank the folks who have posted their stories here. They provided some helpful context. Now it is time for me to do the same.
I’ve been eating for what I thought was pleasure for the last 20 years (I am in my late 30s). From time to time, I’d get fuzzy-headed at work, so I’d have a quick junk food snack and I’d snap right back into action. As these little episodes slowly became more frequent, I got into the habit of drinking sodas all the time. Then 2yr ago begain the night sweats, tingling in the fingertips, all these little minor symptoms that are very easy to live with. I had not seen a doctor in five years, and generally felt very healthy despite being about 80lb overweight. I began slowly putting on more and more weight over the last year, changing pants sizes every other month, and urinating two or three times a night. I have terrible eyesight in any case (due to keratoconus), so I did not notice any new double vision, although I probably had some. I still felt great, so I didn’t worry about it.
All this changed at the beginning of August this year. I had recently transferred to a new city (Albuquerque) and changed my diet towards more home cooking and less fast food. Ironically, this healthy diet soon revealed the real problem.
One Friday, I had a LOT of food, so the next day I ate a light breakfast and sat down to watch some TV. The next thing I recall clearly was answering questions (badly) asked to me by paramedics. My uncle had called them after I’d had some kind of fit. He’d called the ambulance. They measured my blood sugar in the low 20s, and given my size, they assumed I’d overdosed on insulin injections somehow. When they learned that I was not a diagnosed diabetic, they took me to the hospital.
As you know, spontaneous hypoglycemic episodes are very unusual — very few things can prevent the release of energy from stored energy in fat and muscle. My blood sugar levels were impossible to stabilize, because even at maximum IV drip rate on 10% glucose, my BSL still plunged quickly in the absence of food. Octreotide injections happened to be ineffectual, although proglycem luckily did have some effect. The nurses checked my BSLs once every other hour, feeding me snacks as I needed them to keep me. Even so, I still made it into the 30s and low 40s a few times as my stay stretched into weeks. So much fluids being added to my body made my arms swell, making finding new IV sites more and more difficult. Eventually, a PICC line got inserted into my right arm (inserting one in painless, by the way), which solved the volume limitation.
My local docs consulted nationally, eventually working with the docs at Mayo in Rochester. One suspect was insulinoma. To exclude other possibilities, they ran a bunch of blood work. No antibodies against insulin, no signs of artificial insulin, and very high simultaneous levels of proinsulin, insulin, and c-peptides. The latter meant my body was making insulin contstantly, and at a rate triple the normal maximum human level. They used Whipple’s triad and put me on a 72hr fast; I barely made it into the 2nd hour before my BSL dropped into the 40s and I began having very mild fuzziness. Stong chance of insulinoma!
CT scan failed to reveal the tumor. So did an ultrasound exam. They had a nuclear imaging facility at the hospital, but even after pumping me full of markers, no sign of the tumor. (All of this is painless, by the way.) Finally, they used endoscopic ultrasound (examining my pancreas via an ultrasound unit inserted orally into my stomach (this is far from painful; they put me under light sedation and I found the experience fascinating), and finally imaged (and biopsied) the tumor, about 2cm in size, located in the neck (center) of the pancreas. The surgery looked dangerous; using endoscopic surgery was not possible in my case due to my size (360lb, 160lb overweight by time of admission) and my dangerously high blood pressure. Due to the quite likely chances of complications, I opted to have my surgery at MD Anderson Cancer Center in Houston Texas, after reading many good things here in this blog and elsewhere about their expertise.
In my case, I could not be discharged from the hospital to await surgery at another facility, due to the need for constant glucose IV drip. So, my insurance company listened to my doctors and I traveled via medical flight to Houston. Upon arrival to ICU, they switched me to 20% glucuse and re-upped my rate, finally giving me more frequent BSL readings above 100. They reimaged my tumor, discovering it to be larger (2.33cm by 1.91cm) and quite near ducts in the pancreas. Just prior to the surgery, I was up to 35g of glucose per hour IV rate (this is something like 23 cans of Sprite per day, if I have my maths straight). They installed an epidural, and I had my insulinoma removed on the morning of September 1 during a 6hr surgery. The tumor did turn out to be too close to ducts to ennucleate. Instead of attempting a Whipple bypass, they elected to remove the tumor, the left half of my pancreas, and my spleen. I woke up pain-free with a stapled-up incision running from just below my breastbone down and slightly to the left of my navel, and a drain site a few inches to the left, and a catheter for urination.
Late the following morning, they got me out of bed and I moved to a special mechanical chair, with a few small steps, sitting there upright for most of the day. The next day, I took a few small steps around the room. They began giving me a liquid diet almost immediately, and although my appetite was much reduced, I still began eating foods that were more and more normal over the following days. Many morbidly obese folks have a paralyzed diaphragm following upper abdominal surgery and I was no exception. If you wake up with less than third of your normal lung capacity, do not worry. They gave me a few small plastic breathing tools and attached me to a lung expander six times a day. It took five days, but suddenly I began to breathe twice as deep, and then even more deeply back into my normal range. All those breathing exercises are painless but very worthwhile. My urination catheter came out on the fifth day. By the sixth day I was strong enough to walk unassisted under my own power, dragging my IV pole behind me doing laps around the nurses station. Day 6 also saw the removal of my worthy epidural, switching to pain pills. By they seventh day, I was pain-free without even occasional pain medication — the very low amount of pain I felt throughout post-op makes me extremely thankful for their apparent skill! At the time of surgery, I was up to about 380lbs — most of which was fluid retention (remember the swelling?) — and that fluid finally came rushing back out of me via massive frequent urination. By the 9th evening I was down to 345lbs and feeling much relieved. I was discharged from the hospital on the 10th day after my surgery, and am now finishing my recuperation at my relatives’ home in the Houston area. I anticipate a return to work within about a month.
Some observations:
1. Some people think that having a high-carb diet will lead to insulinoma. I think that only the reverse is true: an insulinoma will lead invariably to a high-carb diet. So will personal preference, a sweet tooth (guilty as charged), or a million other unrelated things.
2. The clinical test for insulinoma is Whipple’s Triad in combination with 72hr fast. There is no use worrying about insulinoma until you fulfill the triad under doctors’ supervision. I was lucky in my case; my early endocrinologists immediately consulted nationwide to find advice. If your local doctor seems obstinate, make sure he knows about Whipple’s Triad before losing faith in him. Many endocrinologists will go their entire medical career without ever encountering a single insulinoma patient, so it is encumbent upon you the patient to make sure they know about how to use the triad to hopefully exclude insulinoma from whatever your problem turns out to be.
3. Before your insulinoma surgery, ask about the epidural. They are doing amazing things with pain medications these days and an aggressive pain management plan will be invaluable. My epidural was very low pain to install and worked perfectly. Mine had a pain button attached to it, and my doctors insisted that I use it as often as I felt any discomfort at all. Epidurals can remain in place for up to seven days post-op, by the way, depending upon technique, and there is zero risk of addiction no matter how many times you press the button.
Thanks again to everybody who has posted here. Pancreas surgery is dangerous, but advances in surgical technique are happening every day. Keep up your hopes!
Charlotte
You are in my thoughts and prayers. You are so close to getting your life back. This is exciting.
Marylin
My heart goes out to you. If you can keep in mind to eat something immediately when you feel this coming on. Or drink orange juice and then eat something because you have to get some sugar on board. But I remember when the lows hit I could not rationize anything. You mind just will not work. And the scary thing is that it happens so quickly and with little warning. Once, I was in a meeting and rushing around and missed the symtoms. Next I remember leaving and driving and ending up on a grassy area in the middle of a parking circle. I drove like that and have little memory of the drive. After that haapened I woudl take my blood sugar before getting in a car and kept glucose tablets with me at all times. It is worth whatever you have to do to get rid of this awful condition.
Hi All,
So glad to see some of the past surgery people chimming in to the blog. It is so good to hear how things are going . It gives us who are waiting hope for the future!
I am would like to hear some feedback from those who went to Mayo for test and surgery. I would like to get a feel for what to expect when I go there. I also want to thank those who have already gave me feed back. It all helps so much. I want to make a well informed decision when the time comes.
Untill I see the doctor’s up there I am still in the dark. I have been told that my fasting test indicates that is what we are dealing with,. I am going on what my doctor told me. I have had gastric by pass surgery and that is going to make things harder because they can’t do some of the test because my insides have been altered.
I have the awful night sweats and the vision that goes weird. I was helping my husband in the back yard picking up limbs after having a tree cut down and the activity put me into a sugar low and I ran into the house to get dinner on the table and in my confused state, I burnt my self and got 2ne and 3rd degree burns all down my left leg.
My husband is real worried about me choosing to due the surgery and I feel for him but I want a more normal life back.
I do thank all the people who have encouraged me already and I am sorry to keep repeating my self. I guess it is just all the waiting that is driving me nuts. ( Well I will use that as an excuse) I am a little nutty anyway!!!
Looking forward to hearing from you. Thanks!
Marylin.
So we need to post to still get the emails? I have missed them. Even though it was my mother who had the disease, and even though it was almost two years ago that she had her surgery, I still feel the traumatic effects of it all, and find this connection still an important part of my life. My best to all who are awaiting surgery, and all who have kept the ball going with their sharing of knowledge and experiences.
Hello to all,
I miss keeping up with everyone. I’m really glad the support is still going on. I wanted to post, not because you need my.. anything you’re not already getting from the awesome bloggers recently , but so I will still get the emails. So keep up the support! This is one connection that won’t get old.
Peggy..a new person for the past year and 7 months!
Heidi,
I am so happy for you and MIke. It must of felt real good to get beck in the class room. Sounds like the kid’s love him a lot.
The best to both of you. You have been through a lot the past few months.
Many blessings,
Marylin
Charlotte,
I wish you good luck with your surgery. I will keep you in my thoughts and prayers.
Marylin
Hi all
Just got a call from the hospital minutes ago:
I am scheduled for laparoscopic surgery on tuesday 22th september 🙂
Please wish me luck!
Rgds
Charlotte
Hi everyone!
School started this week and Mike returned to his elementary school assignment after being away since March 17, 2009. He was welcomed heartily by 350 students who were hugging him and greeting him loudly. You’d think they missed him or something! He fits into his normal work clothes, and can stand in front of a classroom of kids for hours at a time.(without his sidekick litre of orange juice by his side). I would say that means he is totally cured. One student told him she was so glad he didn’t die! she was so scared for him. (Me Too!).
What an experience this last 18 months has been. We are truly grateful that we had talented people working with us, and for all the support we got from friends, family and complete strangers. I wouldn’t want to do it again, but we got through it with just a few more grey hairs and knowing we are loved.
Those of you waiting for diagnosis and surgery – hang tough – help is coming and you will get through it.
Heidi
April
Thanks for the note!
I am glad to hear you are doing so well. This time next year I hope this will be just a memory for you and all will be back to a normal active life for you.
I am giving a lot of thought to all of this and after I speak with the doctors at Mayo I will know for sure what has to be done and I will put my trust in what thay say. It is so much help reading what everyone has gone through.
Thanks and God bless,
Marylin
Marylin,
I had my surgery July 23, so I am about two months from surgery. I have had no blood sugar problems at all, even if I skip breakfast or lunch. The recovery is slow but at this point I am driving, taking care of my kids and doing everything I would normally do. I haven’t started vacumming or mopping yet and someone else has to carry the laundry downstairs. I am taking advil everyday for pain around the incision. I only had the drain in for a few days in the hospital.
I had my spleen removed but that was for a different issue that was discovered as part of the process of finding the insulinoma. I don’t think that happens very often for most insulinomas. Best wishes in making the decision. It was a hard decision to make but I am glad I did it, now. .
Jackie
Thanks for the info. It is sure good to have people like yourself to talk too. I have gone back and read several of your comments and others. All the info I can get right now will a big help when and if I have to make a decision about surgery. I am still waiting to hear from Mayo. I hope it will be sooner than later.
Thanks again,
Marylin
After surgery there was a recovery period of about six weeks. I did not have the lap procedure so there was a really big incision. So rest, managing a drain (mine was in for 9 weeks) and gradually increasing activity was the course. I am not on any insulin and my diet is not restricted. I am finally free and it is wonderful. And I don’t have to check my sugars anymore. It does not matter if I eat or not my body is back to normal. It is worth the pain and recovery.
Hi Anyone,
I am wondering how things are after surgery?
Some of us have to have just part of the pancrease removed and some all of it. One person had the spleen removed also.
What are some of the restriction’s after these operations? Are you on insulin the rest of your life or other med’s. Is your diet still restricted? Does your sugar still drop or is it ok?
Thanks for you answeres!
Marylin
Charlotte Hi !
Thanks for the info on the video. I may take a look at it.
How long have you been waiting to get a date for the surgery?
Keep us updated on how things go and let us know when your surgery is going to be.
I hope it is going to be sooner than later.
I have just started the waiting and wondering what the test will show.
Kind regards
Marylin
Dear all
like most of you all I am so very frustrated about the time we use for waiting………………..
I have come this far: the Norwegian doctor has agreed to travel to Denmark to do the laparoscopic operation. Unfortunately there is no date for surgery yet. Waiting waiting again……
I have stopped taking the drug Diazoxide. Now I can see that it never did any good for me. It worked the first days (never nights) then it stopped working. If I stopped taking the drug just for a day or two it would make my bloodsugar bounce, mostly downwards.
So I stopped and my bloodsugar is more reliable without the drug than with the drug. I still eat 2-3 times every night, take a nap after my kids has left for school and try to live a normal life despite the insulinoma while waiting for the surgery to be scheduled.
Sideeffects were excess body hair (which haven’t fallen off yet!!!), water retention big time, some shortness of breath and a very annoying feeling in my body that something is wrong.
Since I have a very curious personality and try to dig up every information about my disease I have found a video for download on http://www.websurg.com showing an insulinoma being removed by laparoscopic surgery. Price for the download was Euro 10 or USD 14,95. A very fair price for an interesting video. Just a tip for you if you may be interested 🙂
Kind regards
Charlotte
April
Thanks for the info.
I did give Mayo a call and talked to someone who was taking Dr Service call’s yesterday. She said that the doctor was on vacation this week and his secretary would be in next Tues. So I will check back with her on Tues.
I guess I am just anxious to know something. I will just have to be more patient.
Hope you have a good Labor Day.
Marylin
It took at least three weeks. Maybe longer. I know my doctor knew the appointment time before me. They faxed him but the letter took a little longer to come to me in the mail. If it has been a while call them and see it it has been scheduled yet. I know they have to get all the records and the doctors review them before the appointment is scheduled.
April
Hi All,
I have a question for those of you that went to Mayo for test and surgery? How long did it take to get you appt. at Mayo once your doctor sent your medical records to them?
Thanks for your reply’s.
Marylin
Heidi
Wow sounds like a great time for you guys! I am so glad to hear Mike is doing so much better.
Thanks for letting me see the other side of all this. I don’t think I will go white water rafting but I will do a lot of things that have been put on the back burner right now.
I am still waiting to hear from Mayo but expect I will hear soon. It has been 11 days since the doctor sent the info to Dr Service.
You guy’s keep on having fun!!!!
Later Marylin
Hi Marylin
We are very well; our family spent the day driving 300 km to Mt. Robson (the highest mountain in the Canadian Rockies) to go white water rafting on the Fraser River. It was warm and lovely with level 2 and 3 rapids. We are pleasantly tired and thoroughly satisfied by the workout and wonderful views. It was a long day, but we are happily exhausted.
So yuo can see that Mike can now do everything despite our despairs of the spring and early summer. He is truly healthy again and 5 months post-op we only have the scar and an unused glucometer to remind us of what this was all about.
Your answers will come soon and then the cure. It will be a blessing once you are on this side of the problem.
Take care
Heidi
Tatia
Thanks for your posting it is so encouraging to us as we try to make the right decision about this surgery.
Day by day I have more of my life taken away do to this problem. Today I go out with friends but I am worried about my sugar dropping. It is uncomfortable and embarrassing.
I am waiting for my information from Mayo Clinic. I hope they will except me as a patient. In the meantime I will enjoy the comming on of fall and all the changes that are going on in my back yard in the trees and flowers. I hope my very slow growing tomato plant will give me some tomatoes before Christmas! (Ha Ha)
Thanks
Marylin
Hello again,
I think the new look of the blog is great! I guess that is why I haven’t been getting updates lately when anyone post a new blog. Hope everyone is having a nice end of summer! For those of you who are still trying to get diagnosed, awaiting surgery or dealing with a loved one who is in middle of either of these I send you my thoughts of support. I am now almost 9 months post op. You will have your life back so please do not give up the fight. I hope by chiming in I will now get new posting updates. Look forward to hearing everyone’s progress.
Tatia
Heidi
It’s good to hear from you! How is Mike getting along now? How are you doing with the low sugar?
Back in the 80’s I belonged to a support group called Overeaters Anonymous. I did well following a program like you discribed eariler where you cut sugar, white flour out of your diet and also I ate only 4 meals a day. O.A. does not give a diet out but they help support your program. It is on the same guideline as A.A. I lost 80 lb’s in 9 mo’s on this eating plan. I felt pretty good also. I am sorry I stopped going to the meetings.
As you can see Ron and I are just getting started on the search for a true answere to what is going on. So far things are pointing to the insulinoma but when we go to Mayo we hope to get a straight answere. Until then I will try to be on my best behaviour.
Well I do appreciate all the input and Ron is holding up ok so far. I just had a sugar low and he shoved the fruit juice and peanut butter in my face. Yum! 🙁
You guy’s take care and keep me up on what is going on with you…..
Marylin
Hi Marylin
As the spouse of one of ‘you people’ I know how scary this is for your hubby, but the surgery is the only cure for a real insulinoma tumour, so you both have to be strong and let it happen. Even with Mike’s horror show of a recovery which I am sure you have read about, I wouldn’t have life with the insulinoma back again. I have a functional husband back and my marriage is starting to heal. Before I knew what was wrong with him, I really thought we were coming to the end of our marriage, because he had changed so much. Who knew it could be something making him that way? I still loved him, I just didn’t like him very much for a while, but that was the insulin talking and he is back in my good books now.
So tell Ron to make his own snacks for now and be ready to be a full time nurse for a while, but it will be worth it. You will both benefit from this surgery once the worst days are over. We did!
Take care!
Heidi
April
Thanks again for all the information. It sure does halp a lot and I am sharing your note with my husband. He keeps telling me we have to think about this because this is serious and could get complicated but I assured him I would make sure of my decision about surgery. (“bless his heart”) He loves me and with my attitude lately I don’t know why.
My doctor sent my info. to Dr Service also. She said she had met him one time at a seminar and he scolded her because she didn’t realize that insulinomas could be found in patients that took the fasting blood test may not show the high insulin along with the low blood sugar. She didn’t know it was Dr Service she was talking to when she made the statment. He ask her if she had really read his papers on the subject. She was excited when my test was so perfectly text book. She apologized to me for her excitment at my testing but explained that she never had a patient with this and that it is kind of a rear thing. To her credit she is the one who found out what is wrong with me.
Everything I read about this and also both my doctors kinda confirm that surgery is the treatment.
I am glad to hear that you can eat anything you want now. That is such a relief to be out of that low sugar thing. It sounds like it is all worth going through.
Well Ron is asking what there is to eat around here so I guess that is my hint to cook something.
Thanks again for your information.
Marylin
Marylin,
Mayo was our big summer trip !! What fun! We did go up to Lake Pepin over the weekend we were there which was nice because I am a Laura Ingalls Wilder fan.
Overall I found the doctors, technicians, nurses etc. were very good. I saw Doctor Service who was very experienced and talked to Dr. Vella on the phone and he was helpful as well.
I hope they get the appointment made quickly. I think it took a couple weeks for our appointment packet to come in the mail after my doctor had sent all the tests to them. They just gave us an appointment time and assumed it would work for us. They have a little phamphlet with hotel information they will send you.
Good luck. Five weeks from surgery things are getting slowly back to normal. We started school this week – I am homeschooling one child and the other goes to school- so I am no longer in recovery-but I am staying pretty tired. Still taking a late afternoon nap while the kids run amuck on their own.
No more blood sugar lows. I eat what I want, when I want. Mainly just at meal time and munching veggies in between. I have lost ten pounds from the extra I gained from all the eating to keep blood sugar up.
My husband of 13 years went up with me and took care of me hand and foot. As well as helping me make it to all the tests and quizzed all the doctors to death. It is great tot have a good spouse to help out in times like these.
Take Care, and let us know what happens,
April
Hi April, Thanks so much for you information. I am sorry I didn’t get on line until today to check. What you have told me has made me feel better about what to expect. The first day after the doctor told me she was referring me to Mayo, my husband and I sat around just about all day waiting for a call and at 2:00pm we called up there and found out it does not work that fast.
It is interesting to see how fast they work.
You had a lot going on in one day. Did you like the doctor’s?
It sound’s kind of like when my husband goes to the VA. You go in for a blood test and the doctor has all the results by the time you go into see the doctor about an hour later.
We are going to drive up there and I guess we will have to find a motel to stay at. I wondered how many cloths to take so with the heads on how many days you were up there I will be sure and have myself covered just in case.
I will be sure to check out Mac’s and also the Italian geletto. I do love chocolates also.
I just hope they can find the little devil and we can move forward and get life back to some kind of norm.
Ron keeps waking me up when I take a nap and when I sleep at night to make sure I have not gone into a coma. The poor guy, I feel sorry for him. It has not happened and I don’t think it is going to happen to me. He is just a worry wort. He loves me and I appreciate that. We will be married 50 years in Oct. We kid and say this trip to Mayo is our big 50th celebration trip. (no joke) ha ha.
April thanks for taking the time to answere me and it sure does help to know what to expect.
I hope you are doing alright now.
Marylin
I have a question again. Thank you all for letting me “pick” information from your personal experience.
I have been fighting low blood sugar for 20 years. I just try and eat every two hours while awake, and usually head off any major drops. However, lately I’ve had major drops that don’t respond very quickly to eating. I have also started a calcium/vit. D routine. So, I joked with my husband that either calcium or vit. D must be playing with either my sugar or insulin levels. Then, I looked it up on the internet, and I read about the Calcium Stimulation Test!!! Does anyone if it is actually possible for oral calcium to be making me spit out more insulin into my bloodstream and making a sugar crash??
Marylin,
Mayo sent me an appointment card with several tests already scheduled. I had a morning blood test, a Cat scan and ultrasound and appointment with the endoncrinolgist on the first day. I made sure I didn’t eat anything before the blood test. Before the other tests they let me drink juice which they have in little cans if you need it. When we got there they scheduled other tests as needed. They get results really quickly, and seem to be quite flexible in their ability to schedule tests as needed. It was stressful with having tests, then going back to the endocrinologist to get results, then having to wait until the next day for another test. But in retrospect it went really fast. We flew up in June hoping to stay a week but ended up staying about 10 days – my situation was a bit complicated – I don’t think everyone takes that long. And then went back a month later for surgery.
We made sure to tell them that we were anxious to get back home and we wanted everything to go as quickly as possible. They seemed to understand this.
I highly recommend eating a Mac’s which is right outside the Mayo Clinic on the right. after you get through with testing. They have breakfast all day and it was great.
If you need a treat go inside the little mall in the back of the square and get some Italian geletto. Or some fancy chocolate.
Good luck, I think they will take good care of you there.
Thanks to both of you for your responses!
Sorry about mispelling you name Sue:(
Hi Sur
You asked about the sweats. I have them several times a day and also at night. I am soaked when I wake with them. Then right after the sweats I freeze. I also wondered if they are related to the insulinoma. I asked the doctor today but she couldn’t answere my question? I hope the doctor at Mayo will have an idea about it. They sure are uncomfortable arn’t they.
Marylin
Hi April
Good to hear from you about Mayo. It looks like I am going there. My doctor told me today that is the next step and she called a doctor up there to get me on his appt. book. His secretary is going to call me and get the ball rolling. I don’t know if they will go ahead and do test’s when I go there or if I will have to go back at another time???? I hope we will get things rolling so I don’t have to make trips back and forth. Did they start testing right away on you the first trip up there?
Thanks Marylin
Sue,
I did have heat surges sometimes when my sugar dropped, especially at night. Sometimes I was just very hot. Other times I woke up sweaty and hot.
Marylin,
I had a positive experience at Mayo Clinic in Rochester. If you aren’t getting answers at home I would go there sooner than later. They insisted on repeating almost all the tests, so most likely you will have to repeat anything you do at home if you go there.
I have a question. I get drops in blood sugar. When you had your insulinoma, and your blood sugar dropped, did you get heat surges? Besides the shaking, I’ve noticed that’s what happens to me. Then, I notice in the middle of the night, like after 3 am, I start getting these heat surges until I get up and take in some kind of sugar. Does this sound like anyone else’s experience? thanks.
Hi John,
Thanks for your input! Tomarrow is my appt. with my doctor to go over the MRCP and my husband and I have been talking about what to expect from her. The MRCP came up neg. I think the doctor will tell us to go to Mayo but what if she doesn’t? That was our big question for the evening. We have written down question’s to ask her but we are thinking she is not going to be able to answere them. I guess the smart thing is to ask her to ref. us to Mayo and talk with someone who has had more experience with it. I just happened to read this blog tonight and fate would have it that you left this note that has been encourageing and has given us some feeling of direction. Thanks much for taking the time to share with us.
I have been overseas working recently and reading all the new postings here wherever I was. My heart goes out to those who are having difficult times.
All I can add to the discussions and reports is – whatever it takes, get the diagnosis and get the surgery and get your life back. All the angst brought on by hyper- and hypo-glycaemic episodes, all the worry, the passing-out moments, the feeble times, the rambling speech, the lack of focus – it all goes after surgery. You stop gaining wait from all the night-time snacking, you can once again miss lunch or eat breakfast late without danger and enjoy a varied diet without always searching for carbs and sugars. I write this as a coeliac, too – for whom diet is absolutely crucial and a daily trial!
After the serious insulinoma surgery and subsequent abscess I am still a coeliac – but so healthy, strong and healed. Insulinomiacs of the world unite and beat this nasty little enemy! Share the experience with others who have spent years seeking answers and finally getting them. The road to health might be a rocky one, people might try to accuse you of making things up, some will tell you it’s nothing to worry about, you’ll get negative test results alongside positive ones – but you know this is not make-believe. Insist…
My best wishes to all
John
Thanks again Heidi for your infinite wisdom.! Interesting that the dietician provided the direction of using apple juice or pop (or other sugar) to treat the lows.
Hi Audra,
NO I avoid high sugar foods always. I eat mainly complex carbohydrates because it gives me that long slow burn and I can go longer and not feel low or hungry. I don’t drink juice or pop ever, although I will enjoy a lemonade in the hottest days of summer, once in a while. I don’t use sugar for baking either, and have switched to Splenda for baking. I eat only a little homemade raspberry jam occasionally but almost always with peanut butter which is a protein. I prefer the real fruit to juice any day.
As I mentioned earlier, I do not check my blood sugars because I know by feel what is happening. (I have been doing this for over 25 years and know my body chemistry quite well). I am not a skinny minnie by any means, but when I eat correctly I don’t gain weight and i can pull off a few pounds too.
Please recognize that the more refined sugars you eat, the more you trigger the pancreas to make more insulin – that is it’s job. When I am feeling low I have a couple of whole grain crackers and a slice or two of lower fat cheese and maybe a piece of apple. Some fruits are very high in sugar (like bananas) and are considered high glycemic, so they will again induce a reaction from your pancreas.
Since you don’t have a tumour to feed, what you need to do, unlike an insulinomiac, is stop hitting the gas pedal with high sugar foods when you feel low. That is why you are rocketing up and down. Try moving away from sugar and refined foods, to a more whole grain, whole food type of diet and you will educate your pancreas to put out the insulin in a slow, steady manner. It does work! People with the insulinoma don’t have that option because the tumour is working all the time, but you are lucky in many respects, since your pancreas is just operating on a highly ‘reactive’ basis – you give it high sugar – it responds on overdrive. You feel like crap, you feed it high sugar; it responds again. So change what you feed it, and it will change too over time. Long slow-burn foods will need less insulin so your pancreas will start to settle down and be less ‘reactive’.
As to your feeling of shaky and racing heartbeat – I equate that to the result of your insulin rush processing the sugars and you get a very quick high from it – it is like getting giddy drunk. I have a friend who’s husband also is a reactive hypoglycemic and he has always said he could get drunk on a slice of white bread – who needs beer?
Just a word of warning, – the more stress I am under the harder I find it to eat appropriately and that makes the stress so much worse. It can be like there is a battle of stress hormones in my body and all systems start to fail. That is the time you have to be the most careful because you really are heading for trouble if you don’t rein in the sugar consumption at that point.
if you would like to chat on a direct level – you may email me at home: hshearman@shaw.ca, since this is sort of off topic for the insulinoma subject.
Heidi
Audra,
Glad to hear that you are not going to have to go through the surgery. I know trying to get the right eating schedule is hard as I am struggling with the same thing. All the good advice that is shared in these notes is so helpful and supportive.
Good luck with you efforts.
Marylin
Hi Heidi,
You have so much good experience to share with all us us. I do appreciate all the info. I can relate and I shared you note with my husband. It helped him to understand what is going on.
Thank you so very much!
Marylin and Ron
Hi Heidi,
Thanks for your thoughts. I like your analogy of keeping a steady foot on the gas. I just checked in again at 3.7 aargh! Do you treat your lows with a high glycemic source like apple juice and then recheck, eat a snack, etc? 15 minutes after apple juice I’m only at 4.1 but now feel a little shaky and have a bounding heartbeat. I don’t get it! I think tomorrow I’ll try not treating my lows and see what happens (as long as they aren’t too low). I’ll check out the books you’ve suggested. Thanks again!
Hi Audra,
How interesting! I always have seen the differences between my hypoglycemia and what was happening with Mike. I have a very strong up and down cycle when I eat inappropriately (ie high sugar items with no low glycemic foods to balance). I can eat ice cream after a meal, but not on its own. The lows are more emotional than anything Mike felt. I cannot tolerate alcohol at all – I rush up and then crash big time. When I crash from eating inappropriately I usually end up crying and shaking.
I think you shouldn’t panic about not being perfect on the dietician’s recommendations. Like many things we all tolerate medicine differently. Food is the medicine here and you will have to tinker with your diet to make it work for you.
My major recommendations are to avoid white flour and sugar foods. Limit your high glycemic foods like rice, pasta and potatoes (the canadian diet, eh) and focus on small portions of protein, and large portions of veggies. And yes, I only cook one meal per sitting and my guys have made the switch to whole wheat everything just fine.
You might want to look at the GI Diet books by Rick Gallop as they are great guidelines for eating to control insulin. I don’t follow them religiously but I have found them to be wonderful tools for managing out entire family’s dietary health. The author says his books are good for diabetics, but that style of food is also good for hypoglycemics. Small meals, more often – it’s kind of like keeping a steady foot on the gas rather than racing and hammering the brakes.
I find it easier now than I did 25 years ago, when I was drinking and partying and not paying attention to these important things. The key is to eat small portions. I eat when I get hungry and then try to stop. Only when I get stressed out do I go off the rails and then I gain weight.
Other than handing fasting glucose tests I have never actually monitored my sugar. I just know how it feels and try to prevent it. And if I am getting grouchy sometimes Mike says “have you eaten recently dear?”
Good luck with finding your path – it is a challenge sometimes but not as bad as those with the tumour.
Heidi
Hey Heidi,
I’m back home from NIH. I had some surprising results. It took me 38 hours to “crash” during my fast at which time I dropped to 2 (43). I did experience some nausea, vomitting, and felt spacey but was not too uncomfortable (as I have been with previous episodes). Apparently, my insulin was almost undetectable so the conclusion is that I do not have insulinoma. I was happy with this news and we proceeded on to further testing. The next day, I underwent a mixed meal test which involved drinking boost plus which was meant to simulate an average meal. In 5 hours, I dropped to 3 (48). It was determined that I likely have reactive hypoglycemia and I met the dietician who gave me al kinds of info.
Apparently, having the high sugar snacks to treat my lows that I started doing when I believed I had insulinoma was actually exacerbating my symptoms.
Sorry Heidi, bear with me there is a question for you in here…
Now that I’m home, I am trying to be extremely diligent in following the dietician’s recommendations. However, in spite of doing so, I am continuing to drop below 4. An interesting observation I have made is that when I am 3.5 or 3.9 I actually feel well. When I did feel shaking and experienced hunger and a bounding heartbeat was one hour after eating when my sugar reading was 5.5. As someone who has reactive hypoglycemia, I”m wondering if this is something you can relate to.
Although not having to undergo surgery is a relief and even though it may seem rather silly, I feel frustrated that I will not have the cure that having surgery would have offered. As well, I still have the weight and if I have to continue to eat this way, there seems to be now end of it in the near future.
My husband says I’m just being impatient because I just returned home and have to give this a try but it seems to me that I shouldn’t be bottoming out if I am following the dietician’s recommendations.
Thoughts?
Hi Marylin
Mike had his surgery on March 19, 2009 in Vancouver BC. We live in Canada, in a small city called Prince George, in northern BC about 500 miles north of Vancouver. His tumour was in the head of the pancreas on the back side and hard to reach apparently. However, he got away with just a resection of the tumour.
Unfortunately he developed a post-operative abscess that made him very ill for weeks, and although we were released after 18 days in the Vancouver General Hospital and allowed to fly home, he ended up back in hospital in PG a week later and spent another 3 weeks recovering further. When finally released in early May, he came home with a drainage bag that was finally removed on July 23rd, after a CT confirmed the abscess was completely gone.
Mike lost ove 40 lbs from the start of the operation to now. He is completely stable, blood sugars normal and has finally resumed a more normal lifestyle. He will return to work as a teacher in September 09.
We are doing fine now, but it was a very difficult year from his original collapse in April 08 to now. I had lots of help monitoring Mike’s sugars, since he works with a large staff of women who took great care of him for me during his work day. Just tell your hubby to be strong and insist when he notices you are acting oddly that you must have something to eat or drink immediately. Mike is a very easy going person normally, but I still had lots of arguments with him. He kept a qt. bottle of OJ beside him at school so he was able to sip it regularly, since teaching does not allow you to nip out for a quick snack any time you want. Then his staff would ensure he got right into the staff room for his scheduled breaks and get his lunch. At home he was a bit more flexible with his timing, since he was not exerting himself so much, and after getting up in the middle of the night to eat for months, he eventually gave it up because he was more exhausted than if he slept through the night. However, he would need to have some OJ the moment he got up. I have found that the lows always bring on the argumentative side of Mike, and I just dealt with him like he was my son – do it or else!
I hope that helps.
Hi Sue,
We found that eating some protein at every meal time or snack was essential to keeping Mike’s sugars stable longer. He would have cheese, or peanut butter or meat most of the time. We eat a virtually sugar-free diet anyway, and found that he did much better on the foods that were whole grain, and with small portions more often. If he ate white bread or pasta he would burn through it much faster. We also snack on whole raw almonds and eat high fibre foods. Actually our family’s diet is basically following a low GI Diet. High GI foods are too easy to digest and tend to stimulate insulin production as well. Ultimately it’s not about when you eat it is about what you eat and in the case of insulinomiacs, that still isn’t enough as the tumour grows and produces ever more insulin. Needless to say this constant eating makes you gain weight very easily, but after the surgery it comes off quite well.
Try eating smaller portions, more frequently, whole grain everything (you will get used to it) and make sure you get protein every time. It may make a difference in how long you can go between lows. Keep your sugar intake down to a minimum and use it when you are in a low to give you a boost until you can get a proper snack. And get yourself to an Endocrinologist for proper testing. I have known for 30 years that I am a reactive hypoglycemic and I have always been able to manage my sugars with a proper diet only. If you can’t, then you need to be tested for this condition.
I hope this helps….
Heidi
Hi Sue,
I am just beginning to learn about what Hypo. really is. I was told years ago I had it and I must have kept is under controll by eating every time I felt bad. It was like an addiction to sugar. I did gain a lot of weight over the years and at age 63 I had gastric by pass surgery and lost 150 lb’s. I felt real good for about 2 years. I did have pancretites about 4 months after the surgery and it seems like the hypoglycemia kicked in worse after that. I started the hot flashes about 10 months ago and the night sweats and then I will freeze after the hot flash. I suspect that is part of this thing. Like you I have wondered about that. It has been a big help to rea what the others have written. I also got on line and looked up Hypoglycemia and it gives some symptoms. You should talk to your doctor. Let him/her know how you feel and what you suspect might be going on.
Well it is late here and I am going to hit the sack. Got a big day tomorrow.
Good luck
Marylin
Thanks Heidi
I appreciate your comments and it is helpful to know that others understand and can support me as I try to adjust to the idea that I am going to have to follow through with this search for the little devil. Today my mind set was this will pass and life goes on.
I made an appointment with my doctor for the 19th and I expect she will send me to Mayo. My husband and I called Mayo today to see what the process is to get in there and they said my doctor will have to send orders up there and then I will get in for testing and so on. It just seems so extream.
Did your husband have the surgery? If so where did he have it done? How did he do after?
I don’t know what I would do if I didn’t have my husband to help me. He is a wonderful man but I do frustrate him. He has a hard time getting me to eat on a schedule of every two hours. I am stubborn and especially when the sugar drops I fight what ever he wants me to do. That is the Hypo. reaction 🙁
Heidi, thanks again for the input and I wish the best for you and your husband and son. Blessings Marylin
I have another question. Did anyone find that emotional stress made your blood sugar drop? I swear if I get nervous I can tell my sugar is dropping, so I usually grab a snack and then it feels somewhat controlled.
Hi! I’m new. I was reading all the stories, mostly paying attention to all the symptoms everyone has been through. I have been fighting low blood sugar for about 20 years, getting worse lately. I read how you all would eat every 2 hours, etc. I have been doing that for years!! If I don’t, I drop into the 50s at 2 1/2 hours. I keep a box of cereal in my bedroom in case I feel shaky in the middle of the night. I have been having night sweats off/on all night, and thought just menopause, but now wonder if it’s not me getting hypo and the glycogen kicking in all night long!
Some of my fasting glucose is 90ish, some lower in the 70ish range, but on the 5 hour GTT both sugar and insulin went up to 180, then sugar crashed below 53 at 3 hours. I have always felt like I was “feeding” my insulin!! For years, if I say, ok, I’m going to eat no sugar and eat healthy, I get shaky and weak that first day. Anyone have any insight into my sugar levels? Thanks.
Sue
Marylin,
As the partner of a former insulinomiac, I can tell you it is most frustrating to understand what is going on with your spouse, However, Jackie is right – you need to keep eating to stay conscious. You will gain weight and you will have those weird moments when your family is looking at you because you are not making a lot of sense, but some days it won’t matter how careful you are, things are going to be off target and you will need to accept it,
We found Mike reacted quite strongly to weather changes, He had a much harder time in hot temps vs cooler days. Things depended on how much sleep he got the night before, and while he managed to keep teaching until his surgery, he was just about useless around the house because he had used up all his reserves to stay on track at work.
Your husband’s job is to watch for the subtle but telltale signs of an oncoming low and make sure you have access to some food or juice and to keep you safe if you start to wobble. All the people around you need to understand that you absolutely cannot control this, you can simply try to cope with the lows when they come.
And have patience with yourself and your husband as it is so confusing to see someone you have known for years behave so differently. I honestly thought for about a year before Mike collapsed and got diagnosed, that our marriage was in significant danger because he had changed somehow and I just wasn’t recognizing him any more. When i discovered that he had this illness, it all started making sense and I found out that he would eventually go back to normal. That is finally starting to happen and I am so glad that my hubby of 21 years still loves me. The entire process was also very hard on our teenage son, who recently said that the period before diagnosis was like his real Dad had somehow died and left us with his shadow. I have described it before as living with a ghost, but one who does weird things.
You are not too old to feel better. This tumour gets bigger over time and the effects get stronger, so the surgery is the only ‘cure’. Hopefully your endocrinologist will get you into Mayo for the next step soon.
Best of luck
Heidi
Thanks so much for all you input. I did get a call from my diabetes doctor today and she wants me to call her office and get a follow up appt. I guess she will give me some advice as to what she wants me to do. I did talk to my brother in law today and he has been going through bone cancer and he went to Mayo when he was getting no where with doctors in town and he is very glad he did go to Mayo. He said to call there and get things rolling so I can get my life back in order as quick as I can. It is just hard for me to get my head around all this. I do so much appreciate all you input. It is such a help to know I am not alone and there are people who understand. My poor husband has been blaming the lows on me and the way I eat or the activity I do. But a lot of the time I just don’t know what is going to set it off. Jackie thanks for telling me about your surgery. I was thinking I might be to old to worry about doing it but life this way stinks. Thanks All! Marylin
Marylin, your symptoms sound so typical and it is not unusual to have difficulty finding the little devil. You have lots of life left. I am 59 and had my surgery last January. You go to Mayo and fight to have this found and removed. No one that has not gone through this understands how debilitating these low sugar attacks are. Keep monitoring your sugars often and eat enough to keep them up. I gained over 30 pounds eating for my life.
Marylin – Welcome. Don’t be too disappointed regarding your results to date. As you will read in many previous postings, many have had to have more invasive testing such as Endoscopic Ultrasound and/or Calcium stimulation sampling to get the location nailed down. It took us 8 months to find my husband Mike’s tumour. If you can go to the Mayo, do it. They have experience. This is rare enough that lots of regular doctors just don’t get it.
Keep in touch with your specialists and make sure they are getting you referred to the next people – you have to be your own advocate in our experience.
Audra,
Glad to hear your fasting test is done – what an ordeal! Mike’s took very little time – he was already at 2.7 at 7 am when we walked into the hospital’s lab and they just did the blood draws then and there. I think the NIH is doing the protocol exactly because they are working on a study – they need to be very careful that people are not injecting the insulin themselves so they start with a meal then wait you out. Our doctors already had tested Mike once when he was taken into emergency nearly unconscious and had sugar of 1.7 on arrival. They were already convinced he had it, just needed it on paper to forward to the next specialist. I wish you all the best results and good luck with the rest of your testing. Maybe being part of a study will be interesting!
Heidi
Testing comments
Hi All,
I have been reading all your notes and I appreciate you sharing your experience. I am just getting started with this insolinoma thing. I was told back in 1968 I had Hypoglycemia but didn’t have much trouble with it until I had pancreatitis in 2003 after I had gastric by pass surgery. Since then I have had these awful sugar low’s and my husband and I have been struggling with it and we finally got our own sugar tester and kept track of what was happening. My family doctor just blew it off. We tried to tell her how bad it was. I would come home from work tired and fall asleep in front of the TV only to wake up sweating and having to run to the bathroon confused and almost helpless to care for myself. My husband and I took the advise of a friend and bought a Accu-Chek testing kit and started checking my sugar. I would be at 27 and 29 when it would wake me up. I told the nurse at the doctor’s office and she said she didn’t know it would read that low and that was it. So again at the advice of the same friend I made an appt. at a diabetes and endrocrinology center. Well now it is two years later and she had me do a fasting blood te. My poor husband was a wreck while I was doing it. The doctor had me eat a breakfast of pancakes at McDonald’s and wait two hours and then go to the lab for the blood test. I went from 219 to 33 by the time they drew the blood. About and hour after I left the lab I got a call from the doctor’s office saying the lab called them with the reading and the doctor wanted to know if I was ok. When I went in for the follow up the doctor said she didn’t expect that I would have such a reading. My sugar was low and my insulin high. She said she suspected an insulinoma and she wanted me to have some testing done and then go to Mayo Clinic and have the pancreas taken out. Well now! I have had a MRI and two MRCP’s and they didn’t show anything. From what I read that is not uncommon. My gastroenterologest has referred me back to the diabetes doctor and I am waiting to hear what she wants me to do next. I supect she is going to tell me to contact Mayo Clinic. I am wondering if it is worth going. I asked what would happen if I didn’t do anything and the gastro. doctor sain I could run the chace of going to sleep and not wake up. Oh! what to do??? I am 68 years old and I hope I still have some time to enjoy life. My husband and I will celebrate our 50th this October. Thanks for listning to all this. I needed to hear from someone who knows what I am going through. Marylin