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.
Peggy,
It is just incredible for me to learn how long some have had to deal with this…my endo mentioned that the head of her medical team once had a patient that had been suffering from an insulinoma for 30 years before being correctly diagnosed! Apparently, prior to being diagnosed, his previous doctors decided he had epilepsy (I guess due to the seizures).
Yeah, I think driving is out for now, unfortunately. The state of Florida has a law stating that if one has had a seizure (or anything else that can impair driving), he or she cannot drive for 6 months, and I have to agree that this is probably something I shouldn’t engage in right now.
Concerning the doctor issue, this might be more of a question for Jon to answer, but I think if you ask the surgeon these questions, (s)he is required to give that information. Otherwise, I imagine the referring physician could tell you about the surgeon’s background. Good luck with this!
ST,
Glad to hear from you! It is encouraging (albeit a little scary) to read of others’ surgical experiences. I will know after April 10 what kind of surgery I will be looking at, so I will keep everyone updated. Due to the location of the tumor (at the pancreas head) I have this sneaking feeling that I am also looking at open surgery. Best of luck to your wife and family!
To Peggy,
Hi Peggy,
Your blood sugar was 26, that is really low. So it sounds like you have had all the tests and nothing comes up. Have you gained weight from all this. I gained over 20lbs in a year, when I was excerising everyday and eating around 1500 calories a day and couldn’t seem to lose weight. My doctor told me it was menopause since I had a hysterectomy when I was 46, I didn’t believe it for a minute, not the way I was excersing and my rear end was getting bigger, I had never had a big rear in my life. That is one of the signs of insulin resistance. I knew something was wrong. My Uncle who is a physician in San Francisco told me a year ago I might have an insulinoma. When I went to my stupid doctors they said I didn’t according to my lab results. Little did they know that you need to do a 72 hour fast to diagnosis this condition.
You don’t live very far from me. I live in San Diego. I had my diagnosis at UCSD down in Hillcrest, my CT and MRI didn’t show anything, not until I had the endoscope did it show up. My insulinoma was very tiny, about the size of your fingernail.
Before I went in to the hospital to have my surgery, my surgeon told me to drink sugary drinks all day to keep my blood sugar up. If your blood sugar drops that low in the middle of the night I would keep Gatorade or grape juice next to your bed. I’m telling you that grape juice I was drinking before my surgery had 42 grams of sugar in it.
The reason I lost so much weight is because I couldn’t eat for 10days after my surgery and I had a huge amount of drainage . But I needed to lose the weight and have 20 more lbs to go.
Good luck with everything.
Susie,
They said my blood sugar was at 26 when the EMT’s tested me. I’m sure it’s been lower, because this time I came to rather quickly. Other times this has happened, once I was awake, I couldn’t answer any of the questions they ask you about your life or the world in general for quite some time.
That is a horrible feeling. The reason I didn’t let them take me to the hospital, besides how much the ambulance costs, is that this has happened quite a few times. I woke up in the hospital twice, and they just shoot me full of glucose and then send me home with a large emergency room bill. I did have an endoscopy last year, and they didn’t see anything. I am going to have another one soon. I just hate to have it performed by the same doctors that couldn’t find it the first time. I don’t think I have much choice with my insurance. Did you say that you lost 22 lbs. after surgery? That’s why they didn’t want to do exploratory surgery back then, I weighed only 105… I’m just going to have to go for it now. It’s all worth it though, right??
I live in Orange County.
Aileen,
I have had two 72 hr fasts and my insulin was higher compared to my glucose level both times. My first test was done 13 years ago and yes, I have been having symptoms for that long. Has anyone else here had symptoms for longer than a couple years besides Lauren?
I didn’t drive for awhile at first, I know how frustrating that can be. You could always suck on candy for short trips. But if you’re not familiar enough with your symptoms yet, it’s safer not to drive.
Thank you for the info on Dr’s backrounds. I will check with the Dept. of Health. However, the info I would want is their amount of experience specically with insulinomas, not just with pancreatic surgery, and also their success rate.
Lauren,
They have so many tests now to locate insulinomas, I wouldn’t worry about them not being able to find it first before they operate, not at Mayo anyway.
You know, I had the fiber before I went to sleep the night I didn’t wake up.
Questions:
Does anyones sugar get lower when their sick? I ‘ve been real dizzy, so maybe I have an inner ear or a sinus thing.
Have any of you had to be revived with glucose?
Peggy,
What was you blood sugar levels when you wouldn’t wake up the other morning. I can’t believe they didn’t take you to the hospital.
You need to get a endoscope to see if they can locate the insulinoma. Life will be so much different for you once you get it taken out.
Where do you live?
I stumbled upon this site during my search on Insulinoma. My wife had insulinoma and the surgery has been completed.
She had the classic symptoms of insulinoma (confusion, loss of orientation, blurring of vision, stupor, memory lapses), always in the morning which will subside after eating something. While we were in the US, these symptoms persisted for 2 years and no doctor (multiple opinions) were able to diagnose. Given that we had 2 kids and being from India, we returned to India. Our family and friends circle in India included some eminent doctors/surgeons which made us do so. She never had seizures in the 2 years in US but had a couple after our return to India. She was diagnosed with insulinoma after the fasting hypoglycemia test and with CT and endoscopic ultrasound, the lesion was reasonably located.
Now that the first nightmare ended (undiagnosed illness), the next one started. Unfortunately her lesion was vascular and adherent to the pancreatic duct and was on the body of the pancreas. One option was distal pancreatectomy wherein she loses 50-60% of the pancreas which would greatly increase her chances of becoming diabetic. Other option was to save the organ and enucleate but her duct will get damaged. The surgeons advised the second as she is 30 yrs old.
The surgeons tried laparascopic (which they felt was not possible for success) and ended up doing the open surgery. As thought, during removal of the lesion, a hole formed in the pancreatic duct. After that the treatment was very cautious with TPN nutrition, various antibiotics and pigtail drains. Regardless of the cautious care, she developed acute pancreatitis and developed infection after about 2-3 weeks. As per the doctors, where the hole is in the duct, necrosis developed and it is not healing. Stent (ERCP) was tried and it came through the hole/cavity instead of bridging across the duct. Her drain is now about 20cc/day and dwindling. The time she has been hospitalized so far is 8-9 weeks (hospitalized last week of Jan 07).
Her options now – (a) Stricture in duct and atrophy (no surgery needed). (b) Stricture in duct and surgery called jejunostomy (intestine to duct link). (c) distal pancreatectomy.
Stent (ERCP) can be retried but the surgeons are worried that it may lead to infection and chances of success is also considered very low.
As she is healing well now, (a) or (b) looks promising. Still looks like another 3-4 weeks of stay resulting a total of 3 months stay. Hoping and praying she will get better soon.
I know the above might create a bit of uneasiness for a few but still better to get the surgery done and get through the insulinoma effects. BTW, my wife’s sugar levels are normal now.
Jon
With so little information on the net for Insulinoma it has been such a comfort to read and be in contact with so many people going through the same things.
Because of this site I was able to get in contact and meet Helen. She had been through everything last year and was such a comfort to me when I only knew the information my doctors were able to give me.
Considering the number of people who have contributed since the beginning its seems there has only been two of us from the UK and in the same area. It was such a coincidence that we had the same doctors and surgeons.
Talking with people in the US in the same situations, having the same symptoms and trying to cope with it all has been just as valuable.
I am sure everyone will agree this site has been invaluable to all of us and will continue to be. Perhaps it may give a wider view for doctors studying this particular area as I am sure first hand information and experiences count for so much.
Thank you again for creating this ‘comfort zone’ !!!
Regards
Angie
PS I have started swimming again, even after only 3 days it is really helping the muscles in my abdomen recover.
WOW, I can’t stop reading your nice and open-hearted comments. If there are four cases per million per year, what percentage of the world-wide insulinoma sufferers population have read this little article and HOW percentage of you have written your kind comments, questions, answers and anecdotes?
This is amazing. Thank you for maintaining this site online.
I’m wondering if we can join all the medical data (lab work, CTs, etc) and make it public to the world.
Best wishes for all of you,
Jon M. Iñarritu-Castro, M.D.
Hey everyone,
Funny you should all mention eating through the night. My husband use to wake me in the middle of the night, but hasn’t for a long time. I guess it’s time to start again since he couldn’t wake me this morning and had to call the paramedics. You know what I hate the most about that? Besides waking up to seven strange men standing in your bedroom staring at you, they always shoot you with so much glucose. My bs was at two hundred and twenty something! And I do great at 60! I guess their not allowed to give you any less. At least I’m back in the land of the living. I also hate what that does to my daughter. I guess this means it’s time to make a decision, even if it isn’t the best doctor. I spent all day with my mom who is still in the hospital after pancreatic surgery. Watching what she’s going through is what’s made it hard to jump on the wagon.
I have lots of questions for you all, but they’ll have to wait until morning – I’m going to go eat a snack.
Thanks for being there
Homa,
You have been through my worst fear right now! Surgery to no avail, I can’t imagine. That really has me worried! I’m glad it is uncommon. As far as eating I normally try to eat something with a lot of fiber in it. Fiber stabilizes the blood suga from all the research that I’ve done and I believe it to be true. I will eat a piece of double-fiber bread w/ peanut butter usually and I started popping 2 fiber pills before bed as extra precaution.
Homa,
I have been eating a snack before bed only for the last couple of months…this was done on the advice of my endo, since I am prone to nocturnal hypoglycemic seizures. Since I have started doing this, I still go pretty low, but not so low that I have seizure-type episodes. I usually eat a granola bar or cheese and cracker…if I run super low when I check my glucose in the middle of the night, I will drink OJ to get the sugar up quickly, followed by something that will burn for longer (wholegrain carbies, usually). I agree that this is a huge pain, but I think it is responsible for the disappearance of my seizures.
Hi Laren
It did not take them that long to schedule an appointment. I would say only a couple of weeks. They will mail you a big package that you have to fill out, so that they can get some background information on you. They want to know everything. the only thing they did not ask was who who was my first grade teacher. lol.
I believe CT is a CAT scan. I had it done three times before but they were not able to find the tumor. I guess mine is just too small.
Hopefully we both will be able to go to Mayo soon
good luck
Hi Peggy
My case of insulinoma is confirmed. The 72 hour fasting which only lasted nine hours for me showed that indeed I have insulinoma. They just have not been ablt to find the tumor yet. I am one of the very few people who has had unsuccessful exploratroy surgery. I did a lot of research on it. and the rate of finding the tumor through intraoperative surgery is very very high, I guess it just was not in my case. The only test i have not done is the calcium infusion test. I am sure they will do that at Mayo. you do want to go somewhere with experience in doing that test. I do not know how I manage to keep my blood sugar up with as little as i eat. The only time I eat really well is before bed. which brings me to a question I like to ask everyone. Do any of you snack before bed? Since most of my episodes happen first thing in the morning, I have to eat something before bed. On weekends when I get to sleep more at nights, I have to set the alarm to get up in the middle of the night and snack on something. That is the worste feeling in the world to have to get up in the middle of the night to eat, but I guess it could be worse. I usually eat a bowl of oatmeal and a little bit of peanutbutter or a peice of cheese before bed. If anyone snacks before bed, what do you usually eat?
Best of luck to everyone
Homa.
Peggy,
Thanks for your words of encouragement…since you have been living with insulinoma for so long, I was wondering if you have had your blood tests at least confirm the high insulin/low glucose levels? If so, have you simply identified symptoms of insulinoma that far back? I am pretty sure I have only been experiencing these symptoms for the last two years, but when I hear of others who have had it for much longer, it makes me wonder.
I have heard that diabetics often check glucose levels before driving, so I haven’t attempted that yet. I really miss being able to drive! It is a little bit intimidating, though, since I am not always able to sense the hypoglycemic episodes coming on.
Concerning the doctors, I just happened to luck out with an endo who has had experience with insulinoma…it was a complete fluke. However, I just found out who was going to be handling my surgery, so I have been looking up his information on the web (my endo has assured me, though, that he has performed this type of surgery often). I am also going to a university hospital, and many of our doctors here have CVs available from the hospital website, so this might be an option for you. The CVs would at least indicate the physician’s areas of interest and educational background. Also, the state of Florida provides a website through the Dept. of Health where a physician’s qualifications can be confirmed (practitioner profiling). This might be an option for you in your state…I hope this is of some help!
Good luck with your progress!!
Thanks Peggy, I have thought of that, if I don’t hear something soon I may try that route. Homa, how long did it take Mayo to make an appointment for you after you gave them the referral or contacted them? Is a CT scan a CAT scan or something special?
Lauren, Homa,
I wish I could join you two at Mayo! We could have a party 🙂 It looks like we’re the only ones so far that haven’t had insulinoma confirmed.
Lauren, couldn’t a doctor in your area perform the endoscopy, or at least a CT? They may have to do them over again at Mayo regardless, but it seems if they could find the tumor first you would be more of a priority on their list. You’ve lived with this a long time, I know how anxious you are to have it resolved.
Homa, thanks for the info. You really don’t eat that much? I wonder how it compares? Have you had the calcium infusion test yet? I’m going to ask for that. If I ever feel confident enough to make a decision on who is qualified enough to treat me. I haven’t had good luck with that so far.
Aileen,
Welcome to this unusual club. Insulinoma has affected our lives in a way that is impossible to explain to anyone else. You’ve done a pretty good job of it though. The way I get around driving is to monitor my sugar every time I get in the car, take short trips only and always have glucose handy. I do pretty well recognizing my symptoms now. After living with insulinoma for 15 years, it is hard to imagine how different my life would’ve been without the dependency. I’m a different person mentally than I use to be. But, you learn to make the best of it.
Since you seem so capable, do you mind if I ask for advice on how you would go about researching how much experience
a doctor from a particular hospital(UCLA or USC)has?
If I hadn’t already been through it I wouldn’t be so hesitant.
Hopefully your surgeon will have good news on the type of surgery that is neccessary and your life won’t have to be put on hold much longer.
Peggy
I am not sure when I am going. They are suposedly reviewing my case first I am just waiting to hear from them. I could basically schedule to go for testing at anytime, granted I have about 2 weeks notice to book decent priced airfare. The surgery will be a different story. Its hard to imaging recovering from a major surgery so far from home. I’m in New Orleans where are you? I want to get this over with! I would ideally like to have the surgery in the summer when my kids are not in school.
Hi Lauren
I think I am going to the same doctor. I can not remember, I have to chekc it again. My doctor at duke hospital is referring me Mayo. I will let you know when I find out.
I am also hoping to only go for two trips. I am planning on going for three to four days the frist time so that they can get all the tests done. Because it is not like we can just run over there for another test anytime they want us to go.
That would be neat if we have the same doctor. When are you planing on going there? They were supposed to call us in February to schedule an appointment but instead, they send me a letter informing me of my appointment that was already made. Of course we could not go at that time. I guess big places like Mayo are so busy that they just make the appointment for you and you better make it there, or otherwise you got to wait for a while. I understand they are busy, but hard to drop everything and go when they want you to go.
I am not sure when I am going to go there. April is a really bad time for me. I am exteramly busy with work. so I will have to see.
Keep me posted
good luck
Homa
Lauren,
Yeah, 200 is a lot, but I remember the technician telling me that. Apparently, the spiral ct scan produces something like 30 image slices per second, so perhaps this is indeed the system that was used on me.
Good luck with finding a specialist!
Homa,
Thanks for the response…from what I can tell, there are apparently quite a few cases of patients who have both PCOS and insulinoma, but not many of these have been documented in the medical literature. This could be related to the fact that the median age at time of the diagnosis is rather high (in other words, when most women are menopausal). At least, that is what I gathered from the articles I have read. Two citations that might be of interest to you are: Stanciu, I.N. et al. 2003. Insulinoma presenting with hyperandrogenism: A case report and lit. review. Journal of Internal Medicine 253: 484-489 AND Murray, R.D. et al. 2000. Clinical presentation of PCOS following the development of an insulinoma. Human Reproduction 15:86-88. If you or your doctors cannot get these, I can send them to you. In both cases presented, the symptoms of PCOS disappeared after surgery. Interesting, at the very least, but it seems to be a subject of scientific debate.
I wish you the best of luck in your search…don’t give up hope! Please keep us all updated on your progress.
Thanks Homa, I am waiting on a Dr. Service at Mayo to review my files and admit me. Its already been a week. Did you have another doctor refer you there or are you just making an appointment and going? Do you know what docotr you are going to see? I’m hoping I will only have to make 2 trips, one for testing and one for surgery.
Hi Aileen
I also have PCOS and insulinoma. I was diagnosed with PCOS about four years a go, At that time I was not diagnosed with insulinoma, but I know now that I had it. I have been having low blood sugar episodes for the last five years. They were finally able to diagnose it two years a go. I do wonder if the PCOS and insulinoma are related, since insulinoma is so rare. If you find out any infomation on it please let me know.
You are very lucky that they were able to locate the tomer. I did the CT and MRI and some other tests but they were not able to find it. So last September I had an exploratory surgery for eight hours, and they were not able to find it. I am not giving up and going to another hospital and I am sure they will find it.
Hi Angie
I am so glad to hear that you are doing better. Sorry to hear about your loss of gall bladder, it least they didn’t have to remove a part of the pancreace. That is something I am worreid about. Hope the rest of your recovery goes well. It has been six month since my surgery. I still have bouts of pain here and there, but it has eased up and it is not as intense, and I feel the improvement. I just hate going through all that for nothing. Oh well, hopefully next time is the charm. Just wanted to let you know, the recovery may take a while. I wish someone had told me that when I had my surgery. It sure would have helped.
Peggy
I also have more symptoms during that time of the month. I would say most of my episodes have happened at that time. I do not know what is the correlation there. I did gain good bit of weight in the last five years. I have gone from being 100 pounds, (yes 100, I was a skiny little thing) to 140 in three years. I needed the weight gain, and now I am just about average. But the weight gain came all of the sudden. about the time I started having episodes. I used to try so hard to gain “one pound” and I could not, and in matter of month, as soon as I was diagnosed with hypo, I started to gain a pound or so a month. My weight has been pretty stable for the last year. I am not your typical person with insulinoma. i do not eat much at all, which is not good either. but I still gain the weight. I have decided to avoid the scale completely, since it won’t do me no good to get on it. It will just frustrate me.
Laureen
I am also planning on going to Mayo soon. I was supposed to go last month but somethng came up and I was not able to go. I know what you mean about it being far. i can not imagine going somewhere that far for surgery. I have done a lot of research, and I can not remember the numbers, but they have an impressive number of cases of insulinoma that they have treated. something like over two hundered something in the last twenty years or so. That is a lot, when you consider the low rate of people who are diagnosed with it. I will keep you posed and let you know how it is up there if I go and you let me know how it goes if you go there before me. I did want to let you know that they would probably do the 72 hour fasting test at Mayo again. I have been diagnosed and had tests and surgery and all kinds of stuff done to me, but at Mayo just like any other hospital, they do not accept anyone else’s tests and have to do their own. It is hard to start all over again, but I am willing to do it and be free of insulinoma. It will be my third time going for a 72 hour fasting, maybe third time is the charm, ha
Best of luck to everyone
Homa
I really don’t know much about that but 200 images does seem like a lot, my endo is referring me elsewhere after glucose testing and one MRI which showed nothing. The hard part for me right now is the waiting for a specialist to take my case.
Lauren,
Thanks…my endo diagnosed it. Since she is associated with the university’s research hospital, she has had a few of these cases referred to her. I didn’t ask, so it is possible that my ctscan was just the regular computed tomography, but isn’t the spiral ctscan supposed to generate more images? Mine resulted in 200.
Damn! I was hoping your surgeon was closer, I’m in New Orleans.
Welcome Aileen! Did you go to someone specific to insulinoma treatment that found it or did your regular endo find it? Is a CT scan just a Cat scan or is it that spiral one I keep hearing about?
Lauren
Ive just written a long reply and I crashed so here I am again…
I ended up taking 2 x 50mg of Diazoxide morning and night. I tried taking lower doses but they werent sufficient. However because of taking 200mg per day I suffered from odema in my legs and ankles so had to take a diuretic. Which in turn made me horribly itchy and had dry skin patches.
I often had ‘lows’ and the odd hypo but in the short term it was better than nothing. Because of the effects my doctors suggested it was not going to be suitable to depend on the drug which made me consider surgery more seriously – diazoxide can stop working after a while.
I did experience increased hair growth, which was fine on my head as my hair had got thinner but wasnt too happy with hairy toes!!! This also could have been were my body was functioning better so my hair and nails improved.
All in all I sound so attractive!!! – Ive shaved my toes and it hasnt grown back!
Good luck
Angie
My surgeon is Dr. A.R. Moosa at UCSD Thornton Hospital in La Jolla, CA.
Hi…it has been very encouraging to read the messages here. I am a 35 year-old female who has recently been diagnosed with insulinoma. It has taken approximately two years for me to be diagnosed (it was finally established in February of this year). Originally, my episodes were infrequent, brief bouts of momentary confusion and blurred vision, the first one occurring at the end of 2004. I didn’t have another one until the fall of 2005. Given the irregularity of the episodes, I assumed it was stress (I am a graduate student) and never gave it another thought. In December of 2005, I traveled with my husband to Europe and had a series of sleeping episodes (periods of deep sleep lasting 12-15 hours from which my husband was unable to rouse me) that we later thought was related to jet lag. However, when we returned to the U.S., I experienced a couple more of these episodes without any apparent provocation. My GP had my glucose tested at this point, and it came up at 61, which is a little low, but apparently not low enough to cause any alarm. When I traveled to South America for the summer (where I conduct my field work), I started having frequent episodes of “zoned-out†behavior, in which I couldn’t follow conversations, didn’t make much sense myself, and had trouble with physical facility, such as walking and vision. On occasion, this problem seemed to be relieved by food, but I never quite made the connection. I also started having pronounced “seizures†at night. When I returned to the U.S., I started seeing a neurologist, and consequently had a MRI of my head and an EEG done, both of which turned up normal. At this point, my neurologist had no idea what was going on and my husband and I were left very confused, feeling as if we were losing our minds.
Also playing into this whole story is that right around the time these episodes started occurring, we were trying to get pregnant…I was diagnosed with having a uterine fibroid (which was surgically removed) and thought that would be the end of it. However, I started having more frequent anovulatory cycles, and my reproductive endocrinologist, thinking I had polycystic ovarian syndrome, prescribed Metformin. Once I started taking this medication, my nocturnal seizure episodes increased in frequency (I have read that this is a common reaction to Metformin for those with insulinoma). Given the links between insulin and PCOS, I started going back to the idea that my problem was hypoglycemia, and did an overnight fasting test with my GP and came back at 35! I then started seeing an adult endocrinologist, and after a clinical fasting test, she was able to confirm insulinoma. I just got my ctscan done this week (I was overseas again for about a month, thus a delay) and a type 1 insulinoma tumor is clearly visible at the head of the pancreas. I have been referred to a surgeon (fortunately, I am at a university that has a research hospital), so I am still waiting on that.
I know some earlier messages on this site referred to the need to do open surgery when the tumor is located in this part of the pancreas, and I just wondered if anybody else had information and words of wisdom in this matter. The thought of surgery is very, very scary, but it is non-negotiable; the insulinoma has completely changed our lives (me not being able to drive or exercise, weight gain, having to get up in the middle of the night, putting my dissertation on hold, dependency on my husband’s care). Also, it is possible that the PCOS and insulinoma are connected, so it is potentially contributing to the infertility. In addition to the surgery question, I am curious if you all know of others who have had both PCOS and insulinoma.
So glad to find you all!
Angie, do you remember your exact dosage when you finally got it right?
To find the yahoo boards, go to Yahoo’s website and go to groups and do a search for insulinoma, there are also 2 hypo boards. You will have to register. A while ago there was input from a few people who had the surgery but lately its just been me and another chick going back and forth on that board. Like I said there’s much more input here.
Susie- who exactly is your surgeon, where is he and is he hard to get? I have MD Anderson and the Mayo in Rochester reviewing my case right now.
Lauren,
How do I find the Yahoo boards??
Peggy
Peggy
Hi its 09.00 as i write this and yesterday it was about the same so I must be 8 hours or so in front. Its getting bad I have to check in here morning and night now to see whats going on!!
My sugar levels never went very high but I really only tested in the mornings as that was when I had most lows – around 10.30 am or so. there was never any reason but I was always lower at weekends! I never had black outs but I think thats because my body just coped with being so low for so many years. It was just something that I was used to without knowing anything was wrong. When they first diagnosed this I really didnt take it seriously and wondered why everyone was running around in a flap!
Lauren
I was on diazoxide for 10 months or so. It took a while to get my dosage right. I had odema in my legs so had to take diuretics, which in turn caused itching and dry skin. I still had hypos but not as many but my sugars didnt really go very much higher either.
I lost 7lbs or so over the two weeks I was in hospital for my op – My appetite wasnt good after the operation but I was encouraged to eat after 2-3 days – I hoped to lose more but after a while i was eating semi normally – although my stomach was a little delicate for a while.
Got to go – Ill be back later !!
I had my surgery on Feb 2 and I lost 22 lbs. My surgeon wouldn’t let me eat for 10 days, he wanted to give my pancreas a rest since he had to remove part of it. Then I had terrible drainage problems when I got home, they started me on the statin injections which really helped. My drainage is now 99% dried up. I still don’t sleep well since I have to sleep on my back and my abdomen hurts alot. I wear a adjustable type corset that helps with the pain. I wore it the whole time when I was in the hospital, i only wear it at home when my incision starts to bother me.
I was never on that diaoxide. Because none of my doctors thought I had a insulinoma. I was told I had reactive Hypoglycemia.
This has been the longest recovery of my life, I had 2 C-sections and a hysterectomy and those were a piece of cake compared to this surgery. All I can say is I don’t have to worry about those horrible blood sugar problems anymore.
My surgeon says it’s a horrbile disease and the insulinoma definitely puts the weight on. He kept on telling me that. My surgeon is one of the best in the country on pancreatic surgery, he’s been Chief of Surgery and written many manuals on pancreatic surgeries. People from all over the world fly in to see this guy, he’s so good.
When I had to do those 72 hour fasts, I would eat dinner and then start my fast after dinner, the doctors wanted my blood sugar to drop under 40 and be symptomatic, showing signs of hypoglycemia. I got down to 35. I would get so anxious, which is another sypmptom of a insulinoma.
Hope this helps.
Good luck!
susie
Angie, did you lose any weight with the surgery? were you on an IV? I’ve been reading the insulinoma board on the yahoo boards as well(there’s much more feedback Here) and a couple people there said they lost about 20 lbs just with the surgery!
Angie,
I’m glad you’re feeling better! I guess I’m not the only one who’s up in the middle of the night sending these. Is that because you still can’t sleep comfortably? I was wondering, is the time recorded on here our time? Did you actually send it at 2:42 a.m? Just curious.
I have always heard that insulin makes you put on weight! I’ve have been real careful about what I eat, but the amount of quick sugars I’ve been consuming over the years has definitely added up. I’m most looking forward to going back to eating lots of vegetables or just a salad for dinner. Although, now I’m so use to thinking FOOD all the time, it may not be as much fun as I thought. Well that 72 hour fast will should start you out on the right track!
Condolances on the loss of your gall bladder!
Michelle, it’s been what,3 weeks? Has your pain gotten a
lot better? Your sugars sounded just like mine, but did they ever get very high?
Angie, did yours? Or did any of you ever have to have glucose shot into your veins in order to wake you up?
Since they can’t find a tumor so far, I’m just curious if I’m any different then all of you.
Lauren, I think you’re taking the highest dosage of Progycem. I’ve taken it for years. It never really raised my sugars, but I went for a couple years without having any trips to the E.R. It doesn’t work that well any more. Do you still have to have the 72 hr test since you’ve already been diagnosed? Maybe Mayo will require it?
I have had it done twice, and I was told not to eat that morning, but since I know myself better than they, I always do anyway. It doesn’t take long for me to drop.
I can’t remember what my levels were, but they did say that the insulin was high compared to the low sugar.
The part that worries me is, the first time it was done..13 years ago, he said although it was high, they expected it to be even higher. The other thing is this new doctor saying that there is some women who have lower sugars without an insulinoma. He didn’t give any other explaination.
I sure wish Jon would comment. (hint hint)
Susie, Amanda, where are you???
Has anyone here used diazoxide/proglcem? I started on it yesterday. My dosage is supposed to be 100 mg 3x a day. I’m a spaz and I accidentally doubled my 1st dose. Let me tell you 2 hours later my bs level was 90!!! I wanted to cry I was so happy I felt so good!! This morning I realized what I had done and I took the regular doses. I haven’t noticed a change at all my sugar has been in the 50’s all day. I’m wondering if it takes a while to get in my system or should I be upping my dose? What dosage is anybody else taking?
Lauren
When I went in for my 72 hour fast I went in the night before and ate a meal at 5pm and started fasting at 6pm. This was because they did not want be going hypo on the way in, this could be especially worrying for you if you have to report to the hospital in the morning without eating breakfast.
You said they would monitor you until you reach 50? That would be ‘3’ here as we use a different scale. Ive been trying to work out all the levels everyone quotes. (0.6 mmol/L = 10 mg/dL – ie 1.8 mmol/L = 30 mg/dL) Are you impressed!!!!!
My endocrinology tests came back as 2.5 which roughly 40. Anything lower than 50 is considered unusual and below 30 is serious. In the Uk if you go below 1 you are probably in a coma! which would be less than 20.
When I had my 72 hr test they stopped it at 1.6 which would be 26 ish but I went in at 36 which was low anyway. (These figures are approximate!) 50 seems to be quite high especially when you are around 45! Its good tho you wont have to do the 72 hr test. I ended up dreaming about biscuits after 24 hrs it was really odd as I kept having to remember I couldnt have anything! Lucky the NHS food isnt that good as I actually didnt feel I was missing out!!
Everyone!
Ive just been for my follow up appointment. Everything looks good! I feel good as far as my sugar levels go! Still have pain here and there and sleeping is slowly improving.
However my surgeon informed me they removed my Gall bladder – good to know now!! I might have missed it! He said he removed it as it ‘was in the way’!!! Good job nothing else got in his way!!!
the insulinoma was just an ‘insulinoma’ nothing worse! and my gall bladder was slightly inflamed – well so would you be if youd been removed!
I may have to go back for another 72 hour fast to check everything is ok – this is a bit dodgy as Ill have to do the whole 72 hrs this time. I only did 30 before they stopped it and that was ok but 72 AAAHHHH!
They may also monitor things for a few years to make sure it doesnt return!
There are a lot of comments on here about weight gain and this is my pet gripe! No doctors here would attribute weight gain to the insulinoma and put it down to overeating because of being hungry due to low sugars. I really disagree here and as I monitored what I ate over the years and was trying to lose weight this really frustrates me.
I didnt put on a huge amount but my weight increased gradually 14 pounds over two years. this wasnt much in all but when you are continually battling to lose, that its a lot! Ive recently been reading the ‘Greek doctors Diet book” which talks a lot about insulin and diabetes and he basically says too much insulin puts on weight. At the end of the day an insulinoma screws up your metabolism!
There is very little info on this anywhere. The surgeon who performed my endoscopy asked me about my weight and seemed very interested but it took me so long to come round afterwards he had gone!!
Im hoping it will all fall off now and Ill be thinner than ever – ha ha Ill let you know.
Seriously I am hoping my metabolism will get back to a more normal balance and Ill at least be able to control things a little better!
Sorry this is very long this morning! Im still indignant over the loss of my gall bladder!!! Ha!
Myrah – where are you?
Susie, Amanda and Michelle – Hope you are still recovering well!
Best wishes all!
Angie
Thanks Brendan, I don’t think my case is nearly as bad as yours. I’d guestimate that 3 hours after eating a large breakfast I’d be 45-55 range. Believe me I don’t like the thought of going to Mayo, the flights from New Orleans are outrageous, my husband just started a new job and I’ve got two small kids so I’ll probably be on my own but being that they haven’t located it yet here I want to go the best.
Lauren,
My 72-hour test was slightly different: they told me to eat a large breakfast beforehand to ensure that my glucose was at a peak. It only took 3 hours to get down to 32, at which point they did another series of blood draws. They allot 72 hours because they want to also verify that you’re not injecting yourself with insulin to artificially drop your blood sugar. Apparently they also check to ensure that your insulin isn’t from animals (which artificial insulin for diabetics often is, apparently). For someone with your symptoms, it won’t last anywhere near that long.
They did other things during that visit, though. They were so concerned about the rate at which my blood sugar dropped that they also took the opportunity to put in a PICC line during that stay (as well as put me through CT and MRI scans). The PICC line was a pain, but made it much easier to manage my glucose levels. Basically, you end up with a catheter in your arm with a port that’s connected to a pump that you wear in a pack around your waist. I was shipped 1 liter bags of a glucose solution every three days, which I had to clear out most of the food in my refrigerator to house. I was getting 1 liter of the solution pushed into my veins every 8 hours, which kept my blood sugar above 65. Prior to that, I was forced to constantly carry around food (and my blood test kit) to make sure I could keep it up.
The Mayo’s supposed to be one of the top places for endocrine tumors; I considered it, but it was more important to me to be near my wife and home, and I was lucky enough to find a doctor locally who’d done them before (and, of course, also was a specialist in laparoscopy).
I also wanted to pose this question to anyone. For the 72 hour test I was told I would report to the hospital in the morning, don’t eat breakfast, they would draw my blood and then monitor me until it hit 50 and then then they would draw it again and I would be released. Well what if your blood sugar is already about 45 when you wake up. Seems silly to check into the hospital just to have blood drawn and just to be released. My doctor said I didn’t need to do the 72 hour fast because he had proof from my insulin and peptide level from the five hour test that I probably had insulinoma. Is this enough or is there something else they test for in the 72 hour test that predicts insulinoma? He is now referring me to the Mayo in Minnesotas(i live in New Orleans)
Thanks for the reply Peggy, my condition has always been worse that time of the month and if ever I had a really bad episode it was during that time. I have also been steadily gaining wait the last couple of months as my condition have worsened. I would absolutley refuse ANY doctor that told me that women’s blood sugars were just low. There’s definitely something wrong with me and I have had all my hormones tested and they’re telling me they’ve ruled out everything else but insulinoma. My blood work results were, I had blood drawn, drank glucose, dropped to 46 in 2 hrs and they drew again:
1st test early morning: glucose 53 mg/L, proinsulin 62.1H pmol/L, c-peptide 1.8 ng/mL, insulin 8 uIU/ml
2nd test: proinsulin 20 H, glucose 46
I’d love somebody to tell me what these numbers mean. My doctor told me that my insulin levels were high not for a normal person, based on what my blood sugar levels were.
How do anybody else’s compare?
Peggy and Lauren,
My sugars were consistently low, especially when I had an ‘episode’ which is what I called my hypogylcemic attacks. On an average day they were in the 50’s or 60’s and in the 30’s when I had symptoms. When you do the 72 hour fast, the cpeptide and insulin levels will determine if you hav insulimoa as it is diagnosed biochemically first.
Best of luck.
Michelle
Hi Lauren,
I’m glad you found us! I know how it is to feel as if I had been going through this for the last 15 years alone, before I found this sight. It took me a long time to discover I had low blood sugar, and I think because of some brain damage that had occured as a result, I became severely depressed. Thankfully, that passed eventually and my mind learned to adapt. Maybe THIS is the right time for us to find our answers. As hard as it has been living with this condition, I have to believe that “having done this sooner”, may not have been in our best interest. They have come a long way in the past 15 years, with the amount of information availabe and with medical procedures. It hurts to know how my having this disease has hurt my family, especially my girls, but I pray that it has also made them stronger, and more compassionate people.
I can relate to how you feel about having surgery if they cannot locate a tumor. If I was sure they knew they could find it, I would’ve been there years ago, but I wouldn’t go for an exploratory surgery without a doctor who has had a lot of successful experience with this. The good news is, my mothers doctor said that if they locate a tumor, they can tag or tatoo it so they will be able to find it when they go in. And don’t forget now there is a chance that someone can do it laparoscopically.
I haven’t spoken to my mothers surgeon much, since he is not my doctor, but he told me he wasn’t convinced I had an insulinoma based on the ranges of my sugars. I had told him that my averages were from 40 to 60. He said some women just have lower sugars… This has raised a lot of questions for me. You don’t have to answer of course, but if anyone cares to, I would really appreciate the input.
I usually only test my sugar before I drive and when I feel low(which is all the time). Today I tested all day long and found that I went from 83 to 39 whithin one half hour, and 101 to 41 within 40 min. I ate carbs the first time, and protien and carbs the second time. Does this sound unusual to anyone who has had insulinoma?
Was anyone lower as a result of monthly cycles?
Has everbody gained a lot of weight from this condition?
Lauren, Did they tell you what your insulin/C-peptide levels were compared to your glucose? Were your symptoms worse when they first started?
Just so you know,I definitely have had some months that are worse than others.
Sometimes I feel like I’ve written too much(like now), but please don’t feel that way. Comments don’t come that often and I’m sure anyone who is interested will be happy to read them.
I’m sure Mayo can find some answers for you, and you will enjoy many healthy years with your family. I will be anxious to here your results.
Peggy
Hello all, My name is Lauren and I am so thankful to have found you’re comments. I have been searching the web constantly for info but unless you’re a ferret, input from others is limited. I’m 34 and I’ve been diagnosed w/ insulinoma recently strictly based on 5 hour fast, blood sugar, cpeptide and insulin levels. I had an MRI but they saw nothing, however only an analyist looked at it. Two doctors here in New Olreans have told me I have insulinoma. When I wake up in the morning my levels are around 45. They don’t get above the low 60’s all day unless I eat something really sugary. My average levels all day are between 45-65. When I was in high school I did a glucose tolerance test and it went down to 36. Thats the lowest I’ve ever been. Has anybody else who has actually found an insulinoma had levels this range or were they much lower? My local endo doc has sent my files to MD Anderson in Houston and also the Mayo clinic in Minnesota as they are supposed to be the experts. It is refreshing to hear that some of you did not not have anything show up in preliminary scans. I am absolutley terrified of having surgery with no outcome. I have 2 small kids at home. I have ALL of your same symptoms for about the past 15 years. It has gotten worse in the last few months which is why I decided to actually pursue the cause. Now I am kicking myself for not having done this sooner. My family has suffered as a result of my being constantly “out of it”.
Thanks for reading this whoever does and I won’t be so long winded in the future. Lauren
Amanda and Michelle, welcome back!
I have been having some real lows lately. 37 today and yesterday and it’s been affecting me mentally. But I am so glad to hear you’re both out of surgery. How have your blood sugars been? It will be interesting to see how you both recover differently from open surgery and laparoscopic
though they were a week apart. My mother had pancreatic surgery on Friday. She’s not having any pain yet. It seems like they could prevent that, at least when you first wake up. How soon before you could eat Michelle? It’s great that you could both choose such experienced hospitals. I’m sure I won’t have that kind of a choice with my insurance, since they won’t even send me to UCI which is so close, but how did you find out about John Hopkins Michelle? I’m trying to find out what I can about UCLA and USC. I received a referral for an endoscopy at UCLA, again, and an endocrinologist at USC as a second opinion. But I’ve been to both, and I still have this condition 13 years later! Sorry, I think I’m a litttle tired.
Just to let you guys know, I have an old scar from kidney surgery, and I forget it’s there. Same color as my skin now.
Be sure and use that cream for scars.
Angie, are you still having stomache pains after 4 weeks? Bummer. You have a great attitude though.
You are all tough women!
pEGGY
Hello Everyone,
Sorry for taking so long to update you all. I came to Johns Hopkins in Baltimore city to localize the tumour which they did in both the Endoscopic Ultrasound (EUS) as well as a CT Scan with contrasts. They said it was located on the middle towards the tail of my pancreas and was 2 cm. The surgeon’s fear was that is was on top of the pancreatic duct and that it was within the organ which would mean he wouldn’t be able to enucleate it and would have to do a distal pancreatectomy (remove the tail portion of the pancreas) and splenectomy (remove the spleen). I am thankful to report that my surgery went well on Monday, March 5th and lasted approximately 3 hours (total of 4.5hrs once I was out of recovery). They were able to perfrom the surgery laproscopically and hand assisted, so I have 4 port holes, the drain in my side and an incision about 3 inches long below by breast bone. The pain was really bad when I woke up in the recovery room and once they tried a few different pain killers to find the right one it slowly subsided. I have to say that the worst pain was the trapped gas from blowing up my stomach. This was excruciating especially since the pain killers didn’t help that. I have also been having terrible back pain which they have told me is normal as the pancreas wraps around the back as well as the front of the abdomen. I was standing the next day and then walking very slowly, hunched back, the following day. They discharged me from the hospital within 5 days after the procedure and I am now in a nearby short term apartment rental. It has now been 11 days since the surgery and the pain is getting better day by day. I still can’t stand up straight or get out of bed on my own, but I am getting more mobile each day.
For those of you who will need a JP Drain (attached to your pancreas and extending outside your stomach), my experience is that the fluids start out bloody in color, and then turn more urine colored and eventually start to thicken and may clog the drain with blood. It startled me because the sheet I went home with said to notify your doctor right away if it turns straw like or bloody. I called the hospital and a nurse said it sounded like I had an internal infection, but after speaking with my surgeon he assured me that this is all quite normal and what they want to see as the fluids slow down.
I saw the surgeon yesterday in the hopes of getting my drain out, but he wants to wait until the fluids decrease to about 20cc a day. I am going back to see him on Monday, March 19th to hopefully get it out. He then wants to do another abdominal scan before I go home.
I must say that John Hopkins Hopsital has been fantastic. I am from Bermuda and was researching the best place to come. It isn’t readily advertisied, but Johns Hopkins does the most pancreatic surgery than anywhere else in the world and I would highly recommend them.
Thank you Peggy for remembering me and for asking how I am doing.
Everyone’s updates have been great. For those that still don’t feel too great I wish you a fast recovery and for those that are doing better, I am happy for you.
Michelle
Amanda
Your message has just come through so Im quickly replying… Try and eat something regularly even if its a little as it really helps the stomach pain. I found the days I couldnt eat much the pain got worse but gradually as you eat a bit more solid food it helps to “get things moving”! I tried toast to start with!! I did live on custard for quite a few days!
Stomach pain has actually been the worst tcause of pain throughout all my recovery so far. Even last week which was 4 weeks plus I had awful pains but they have eased this week.
I wonder why your epidural wasnt already set up during the op? Mine failed after two days so I cant imagine the pain you were in when you woke!
Are the hospital gowns as good there as they are here in the Uk, I had the surgical stockings on too which were so attractive!!!
Good luck keep us informed, dont worry someone is here ready to reply!!
Angie
Well hello everyone!
Before you get too far into reading this, let me apologize for any bad spelling! It is hard to be too articulate when you’ve just had surgery!
I am 4 days post-op and am feeling pretty decent. I had my surgery Tuesday morning and it lasted approximately 4 hours. I ended up with an incision that is probably about 7 inches long across my belly, in a curved shape above my belly button. The surgeon said that he tried to keep it as small as possible, but had to go fairly large due to the size and location of the tumor. No whipple was necessary, just a normal enucleation.
I hate to say this because I don’t want to scare anyone, but I was in the most excruisiating pain as I woke up immediately after surgery. I could barely move from the pain, but they had that under control after a couple of hours. That was definitely the worst part.
My progress has been going fairly quickly. I got up for a short walk on Wednesday and was put on solid foods the same day. I haven’t had much luck eating the normal diet, so I’ve been mainly sticking with jello and juices. Yum. My stomach has been pretty tender and I’ve been feeling a little bit queezy. I have been sleeping a ton, but I figure that is largely due to the medications they have me on.
Immediately after the surgery, I had an epidural that was removed yesterday. I’m now on Percoset, of which I take 2 every 6 hours. Right now, the thing that is the hardest to deal with is the discomfort in my stomache. I would love to be able to eat something, but I just don’t think I can. I feel a little weak and shakey from not eating, so I am hoping it will pass soon.
Right now, I’m sitting in the guest waiting area to use the computers. I’m wearing my fancy hospital gown, IV pole and cathedar attached. I guess that you can’t have any shame when you’re recovering!
Thanks so much for all of the kind words prior to my surgery. It really helped me get through everything! Hope all is well with everybody.
Amanda
Debra,
You sure have beeen through it! I worked at my daughters school for 10 years. They actually hired me with my condition. It’s great to work at a place when you know they accept you, however wierd you get. Teachers would bring me sugar all the time. We got a new principal last year, and my doctor said the stress was too much for my sugar, so I quit. My daughter is 15, and yes I’ve been having trouble ever since. If I were you I’d stay home with my daughter, it goes so incredibly fast. My older daughter just moved out of state a couple of weekends ago.
Funny, the doctor just called to tell me my sugar is a little low…oh, really? And I am low in iron. That explains my exhaustion. Maybe it’s something simple like that for you Debra.
The really bad news is my insurance won’t send me to that doctor with all the experience. I’m not surprised. I guess I’ll look into UCLA or USC. (contracted hosp.) Does anyone out there have any suggestions for me?
Phil,
I meant to thank YOU for the info on Thorton Hosp doctors.
I guess I’ll go where they tell me.
Peggy,
Thank you for your reply. I only had gestational diabetes (that I know of) before the pancreatic resection. However, with my Mom, uncle, grandfather, and a cousin having diabetes, I have a feeling Type 2 Diabetes would have been in my near future (even without the insulinoma.) However…, looking back, my weight gain has been on a steady climb since college. I do believe that I may have had the insulinoma for years, but I never really had any super lows until the birth of my daughter. Also, when my gestational diabetes was diagnosed in January of 2004, I began logging my blood sugars. I did have several lows (in the 50’s) when pregnant (usually in the morning) but didn’t drop into the 30’s until after her delivery. (And I mean literally 5 minutes after her delivery.)
I like your idea of putting our heads together to try to explain this unusual disease.
Also, since having the surgery (which was my first surgery, other than Laser Eye to correct a stigmatism) I have been diagnosed with other problems:
1. Gallbladder Problems (diagnosed Biliary Dyskinesia after a HIDA scan) means no stones in gallbladder, but it does not process properly-leaving me with pain when it has spasms.
2. Tumour located in my Thyroid (I had to have a Thyroid Needle Biopsy) Thankfully, it was benign.
3. I had severe hives and even on one occasion, I had severe swelling of my face. Doctors did tests and found virtually no allergies.
4. When Doctors were completing an MRI to check my pancreatic function after surgery- when I began having the Gallbladder troubles, they also spotted a Hemangioma (a usually benign tumor on my liver.) My surgeon who completed my Pancreatic Resection also documented this on my chart, but didn’t mention it to me after surgery. My next door neighbor (who is a doctor) said that the only reason to remove them is it they continue to grow or cause pain.
5. Also, I am very fair and have had many sunburns in my lifetime. However, in the past 2 years, I have had several moles turn out to be a dysplastic type. One required an additional excision to examine the tissue further.
6. I began having the sensation that something was stuck in my throat at times. Also when eating raw carrots, or bread, I would get the sensation that food was stuck in my throat and would need to drink liquid to prevent choking. I had a Barium Swallow which diagnosed an Esophageal Ring. They told me it was OK for now, but that it may need dilated if it continues to cause any problems. AND LASTLY…
7. I had trouble conceiving. I have several small cysts in my ovaries, and was diagnosed with a Septate Uterus (heart shaped uterus) and took Clomid 1 month before conceiving.
I guess what I’m getting at is…I have literally fallen apart (so to speak) since having the insulinoma removed. I know I’m 38 and not as young as before, but I didn’t have any health issues (other than difficulty conceiving) before the surgery. Anyone else experiencing issues after their insulinomas were removed?
I read that people who have high carb diets are more likely to develop insulinomas. I have always been a carb freak, so quite possibly there is some truth to this.
My surgeon had only removed 2 previous insulinomas in his career. One of his patient’s tumor reoccurred much later in life. Anyone else hear of them reappearing?
Peggy, how long ago did you have your daughter? Have you been having trouble ever since? MRI’s and CAT scans were not sucessful in locating my tumor. When the angiogram was completed, it was only when they injected the calcium into the vessels into the tail of my pancreas did the insulin levels raise rapidly and at high levels of output. So, no doctors actually saw my tumor, they just suspected that it was in the tail due to my levels. This is why I had to have exploratory surgery to find and remove it.
Just curious, are you working with your low blood sugars? I had taught first grade for 15 years before having my daughter and wasn’t able to return to work until November 2004 (my surgery was on September 24, 2004.) However, now I am exhausted all the time working full time. I am considering staying home with my daughter next year.
I hope that doctors can locate and remove your tumor laparoscopically. It sounds promising since he has removed 50! That is amazing! It kind of makes me think that the odds of 4 in a million must be higher. Best of luck to you Peggy. I’ll keep you in my prayers.
Deb
Hello,
Amanda,we will be thinking about you.
Hi Debra, so is the diabetes a direct result of the pancreatic resection? Seems like it would be, but didn’t you have it before you were diagnosed? I’d also like to know about the calcium stimulation, they found the tumor through the angiogram. But they couldn’t see it, is that right?
I remember my first serious hypo episode was shortly after the birth of my daughter. Strange.
Wouldn’t it be great if we could all find something we had in common that could explain this unusual disease…lets see, I use to be a health nut before I realized what was wrong with me. Lots of carrot/beet juice. I had a couple abdominal surgeries..lots of x-rays. Anyone else?
Brenden, thanks for the info on doctors, Thorton Hospital sounds rather nice.
My mother happens to have some pancreatic trouble right now,
so I asked her doctor how much experience he’s had with insulinomas. He’s removed 50! And He’s the only one in our area that can do them laparoscopically. That sounded promising, the trick will be to get my insurance to send me to him. And of course they still have to find it! I’ll have to repeat all the MRI and CT scans and have another endos-
copy. So that’s where I am right now.
God’s best to everyone!
Peggy
Amanda,
The very best of luck to you on your surgery tomorrow. Your surgeon is right – my wife Susie’s insulinoma was on the head of her pancreas too, so laproscopy was out of the question. I think it can only be performed if its elsewhere on the surface of the pancreas, and can be enucleated. Susie’s much smaller (13 x 10 mm) than yours, and the surgeon had a hard time locating it, so as I mentioned in previous posts, he had to be pretty aggressive and “bold” about taking out a bit larger piece of the pancreas to get it out. She’s had a lot of draining that we’ve had to deal with the last three weeks, but she’s taking a statin drug so it is tapering off quite a bit in volume now. I’m no medical expert by any means, but it sounds like your insulinoma is much bigger so it shouldn’t be nearly as difficult to locate. The week long stay in the hospital sounds right, though Susie was there for two weeks, mostly due to some of the issues that came up in her particular case. Fortunately, the insulinoma and the hypoglycemia are totally gone (Good Riddance!!).
I’m sure you’ll come through everything with flying colors – best of luck!!
Phil
Amanda,
I just read that you are having surgery tomorrow. I will be praying for you and for your doctors. I’m sure you will have a speedy recovery. I had similiar surgery on the tail of my pancreas and I’m here if you have any questions.
Take Care and God Bless,
Deb
Hi again everyone!
It has been great reading updates on everyone and hearing how things are going. I have met a few milestones in the past couple of weeks. Actually, I am about to head up to Stanford Hospital to have surgery done tomorrow by Dr. Norton. I met with him on Friday and he explained that my tumor is about 2cm and is located on the head of my pancreas. Because of its location on the head, he is unable to perform laporoscopy because it is too dangerous. So, he’ll be performing an open surgery. Scarey! I am confident in his abilities and am sure that all will go smoothly. He expects that I’ll be in the hospital for about a week, but I’ll be sure to update everybody on how I’m doing as soon as I’m able to. I will be thinking good thoughts of you all and would appreciate if you’d do the same for me.
Take care and stay strong!
Amanda
Hello Everyone!
I was so thankful to finally read about other live humans afflected with insulinomas. I too had an insulinoma removed in September 2004. I wonder how long I had the insulinoma. I had gained around 50 pounds in the last 10 years. I was fairly thin in high school, but have seen a steady climb over the years. Did anyone else gain weight due to their insulinomas? Also…I had my first child at age 35. Minutes after delivering her, I had my first super low blood sugar (around 32.) I may have had several lows, but wasn’t measuring until I was diagnosed with “of all things” gestational diabetes during my last trimester of pregnancy. I am probably one of the worst candidates to get an insulinoma because Type 2 Diabetes runs in my family. I had the insulin resistance before, with and after the tumor. I had a pancreatic resection – they removed around 1/4 of the tail of my pancreas due to a 2.5 cm tumour. I was insulin dependent after the surgery. My incision is roughly 8 inches long above my belly button. I had an epidural for 3 days and was out of the hospital in 5 days. I don’t have lows now, and am diabetic. I take oral Metformin (to control high blood sugars) and give myself 1 injection in the evening (Humilin N-long acting insulin.) I am interested in possibly having a second child. Has anyone had a child after surgery. I am worried that the insulinoma will return. Especially because my extreme lows came on shortly after the birth of our daughter. Most doctors say it shouldn’t, but noone knows for sure. Did anyone have more than 1 tumor? I have read that multiple tumors can appear…even without MENS..just as insulinomas? I also fear that the diabetes at age 38 may also be a complication. Sorry I am just rambling on…I am an elementary school teacher and my students will be coming in anytime. Please everyone share experiences!
Thank you.
Deb from Nebraska
P.S.-It took my doctors 6 months to find the tumor. I had 2 hosptial fasts, CAT scans, MRI’s, ultrasounds, and finally with a angiogram with calcium stimulation, they thought that it was an insulinoma due to lab results. However, noone actually saw the tumor. It was my surgeon who located it during the actual surgery.
Angie,
Susie really liked your post – like I said, I think you two are indeed kindred spirits. She wanted to know if it would be possible to call you on the telephone. Our email is philsuzy@san.rr.com – perhaps you could email us?
Thanks,
Phil
Angie,
What a terrific post and response! I would think you were Susie from what you told me in parts of your email! Its really early here as I read it (5 am), but I know Susie will love it once she’s up and has read it. You two are kindred spirits, given what you are experiencing right now in your post-surgical period and your mental makeup about your health and recovery!
Its very interesting about Susie’s interactions with her surgeons. They both give Susie a hard time about her extreme anxiety about everything. Dr Tracey (a woman) teases her a lot but has compassion for her misery. Dr Moossa, the head surgeon, is a much older man and though he has compassion, he gets very annoyed by her complaining, and doesn’t have too much tolerance for it. My wife has a very ambivalent relationship with him, but I always remind her that she should thank God he did the surgery because the insulinoma was so hard to locate; Dr Tracey said that she wouldn’t have been able to locate it. BTW – Dr Moossa got his university degree and initial medical training at the University of Liverpool in the 60s, so he is a countryman of yours.
We started Susie on the statin injections a couple of days ago, and like you said, the very fine needle doesn’t hurt going in (just a little tiny prick at times). The surgeons removed one of the drainage bags that was really bothering her a couple of days ago, and I can already see that the amounts collected by the remaining bag have fallen quite a bit. They were down to 50 – 60 ml every 6 – 12 hours the past few days, but when I emptied her bag yesterday, the amount collected was hardly measurable. We’re supposed to do the injection 3x/day for 2 weeks, so I really think they are going to help quite a bit.
Take care and keep us posted on your progress. It is amazing how people from around the world can communicate so easily now via the Internet!
Best wishes too!
Phil and Susie
Phil
I love the internet for exactly the reasons you said – a few years ago how could we possibly imagine having such conversations across the world – I love it!!!
The thought of going through this and them not having found it is quite awful or even if you knew you’d have to opened up again at a later date and go through it all again is very frightening!
When I saw the Registrar before surgery he was going through all the complications and as a final point he said ‘of course there is a chance it will be cancerous and we wont be able to remove it but you’ll have a few years left’!!!! I thought well thanks for that!! im sure he meant well and I took it lightly but hey how about dropping a bomb!!
If the statin drug is the same as I had it is a very fine needle and was painless to administer. It was given to me straight after surgery for about 10 days. The reason im not too sure is because I was having injections to thin my blood twice a day. These really hurt and left bruises and lumps, and carried on until I left hospital.
I dont think I could inject myself but a friend, from this site, had to inject herself instead of taking diazoxide and she was given ‘training’ and managed it. She said if you can do it once you can do it again. I imagine its like sticking a sewing needle into your finger to get rid of a splinter!
Tell Susie that I am a very down to earth, sensible, objective person normally but where my health was concerned in hospital I was neurotic. I worried about everything! I had a two panic attacks and hyperventilated. I got myself worked up after being told I had a very low heart rate and they were concerned so I thought I was going to fade away in the night. I had terrible trapped wind one night and the nurse offered me an ECG at 3 am. I got so anxious one night that I had nerves twitching all over my body and convinced myself I had a neuro disease!! I suppose a lot of this is night fears but its very real at the time and you need reassuring with so many things as you dont know what the doctors know.
Hopefully she will be able to laugh at all this in a few months time. Major surgery to this extreme is more than traumatic and its only natural to worry when you think something isnt right. I do think Im better when I know everything possible to know but then you can worry for no reason. At the end of the day if shes worried so what if the doctor thinks she is neurotic its your peace of mind and your body not theirs and its happening to you not them!!! Ask everything, bring up all your worries, tell them how you feel however silly. Peace of mind is worth millions!! I did!!!
Im finding my stomach pains really tiring and at times it feels like my insides are falling out, I suppose thats because of the stomach muscles being weak. That and being unable to sleep properly at the moment is getting me down but it can only get better – unless ive got some terrible intestine complication, see!- I am joking!!! Its so easy to worry when we arent doctors!
Hope you got on well at the hospital and Susie feels better soon. I think its along road to recovery but the hypos are gone!!!
Best Wishes
Angie
Angie,
Thanks so much for the very quick response. I entered my latest post before I went to bed last night, and here I am at 6 am reading your response! I think you’re in the UK (I think about 8 hours ahead of the US West coast), so that probably explains it. Ah, the miracles of the Internet!
I’m not sure exactly what they did when they went in, or what kind of “replumbing” they did. All I know is that the insulinoma was very small (13 x 10 mm), and if he hadn’t taken such aggressive procedures, they wouldn’t have been able to take it out, because they had a very difficult time even locating it. It showed up well in the endoscopy ultrasound, but once they got in there, it was very, very hard to find. Actually I think what they did was to take out the part of the pancreas they thought the insulinoma was located in, and the surgeon indicated it was a much greater amount than they had anticipated. All I know is that the assistant surgeon said Susie was very lucky that Dr Moossa has done it, because she and the original surgeon that was scheduled to do it would not have been able to locate it. I can’t imagine what it would have been like to have been opened up and STILL have hypoglycemia because they wouldn’t have been able to locate the tumor! What a nightmare scenario that would have been.
Of course, they’ve been concerned about the drainage, but they are confident it will stop. When it first started draining, we were draining 150 – 200 ml every couple of hours, but it has slowed down to about 50 – 60 ml every 6 hours or so. I have to ask you – what were your experiences with injecting the anti-seepage drug? Did you do it yourself, or have someone do it for you? Was it painful? How often and how long did you do it for (I think you said about 10 days)? Did it help you “dry up”? She is absolutely terrified to do it, because they’d like me to administer them (she seems to lack confidence that I can do it – imagine!!), and is concerned about side effects. They require subcutaneous injection with a very fine needle (much like insulin shots taken by a diabetic), so it doesn’t seem like it would hurt because it isn’t intravenous. Also, the surgeon told my wife to try not to worry about possible side effects; he likens it to be scared of walking into a building worrying about if the roof will fall. He says that pharmacists and drug companies have to disclose all possible side effects simply to protect themselves legally, but in reality, she is unlikely to experience few if any of them.
I think she’ll feel much better when they remove the bags because they are now really irritating her skin. We’re going back to the hospital tomorrow for followup on this – I think they’ll probably remove the bags, have me change surgical dressings again (because the flow has fallen so much) and get her going on the statin drug to dry her up.
The big issue here is that my wife has always been extremely excitable emotionally about her health issues (its probably genetic – her paternal grandmother and her mother were also like that). I wish there were a way to calm her down about the whole thing. She is getting better, and will make a full recovery, but its hard on her now. I try to reassure her that everything will get better, but she gets very distraught and tired of the whole thing at times.
Brendan,
Yes laparscopy is the way to go if the insulinoma is easily detectable and can be enuncleated if its on the surface of the pancreas. However, in cases like my wife’s, where the insulinoma is really hard to find, laparscopy is virtually impossible to do to successfully remove such small, hidden-away insulinomas. That pancreas is really tucked away below everything else like the stomach and intestines. I sure wish my wife could have had it, and avoided the long recovery, but they simply wouldn’t have been able to locate and find it. Best of luck to you.
Phil
I had my surgery on the 6th Feb so its just 4 weeks. Although the surgeon told me it was more likely I would have to have a resection I was very lucky and it didn’t come to that. My tumor was in the head like Susies and it was near a tract so they were worried the tract may have been breached. I only had one drain in the end and very little in comparison came out. I know I was given an anti-seepage drug twice a day by injection to start with but that stopped after 10 days or so.
I have increasing mobility and am cutting down my pain killers slowly at the moment but I am still far from back to normal. I am also having a lot of stomach pains and I seem to have a very sensitive stomach in regard to food. I don’t know if this is to do with the diet or lack of it in hospital as really they didnt touch anything other than the pancreas during surgery.
Im still very uncomfortable and sleeping is still far from easy.
Are the doctors concerned about the amount of drainage your wife is suffering?
I presume that after such an aggressive resection as you described Susie must have had quite a few ‘joins’ and ‘replumbing’ work done. This is what actually frightened me so much. My imagination would have run wild about what they had actually done and I know it would have caused me several mental problems as Im like that. My consultant explained that the resection would enable him to do the safest operation under my circumstances to stop any leekage from the pancreas. However knowing that he would be sewing the pancreas into the actual intestine and rejoining up my stomach would have knocked me for six.
Do you know exactly what they did?
I seem to have been very lucky but can imagine what your wife is going through. She will probably hit big milestones soon and suddenly make huge improvements especially if the drains can be taken out. I know when I eventually got rid of mine it was odd at first that I wasnt still carrying it around.
I really wish her well and my thoughts are with you both – hope to hear things improve soon!
Angie
Just a footnote – My consultant in London has done 37 insulinomas over the years, I think that everyone in the Uk with this is actually sent to him as the specialist here. He was very nonchalant about it and gave me a lot of confidence that this was nothing to worry about! I did tho!!!
The statistics show that success rate is considerably better with an experienced surgeon which of course is common sense.
With hindsight when looking for a surgeon I think I would ask him about how he would deal with the complications that could arise and how many different outcomes he had had.
Best wishes to all Im off to take my painkillers!!!
Maria,
If it’s possible, I would highly recommend laparoscopy. My recovery time was very quick – I was 30 at the time of the surgery, and I was in the hospital for a total of three and a half days. I had a drain in my side for an additional three, but that was the entirety of it. I certainly had some abdominal pain and was told to avoid heavy lifting for a month, but I was able to return to work in less than two weeks. I think it very much depends on the location of the tumor, and whether it can be enucleated (and whether or not the surgeon is experience with laparoscopy).
It can be difficult to find surgeons with experience removing insulinomas because they’re so infrequent. Without going to a specialty clinic like Mayo, it’s very hit or miss. My surgeon, Dr. Andrew Bourne, was based in Eugene, OR, but has now moved to a surgical practice near the Northern California / Oregon border. He was very good, and had done six of them prior to me, but I’m sure there are good options elsewhere.
Brendan
Angie,
Susie’s husband here again – I wanted to ask you a question. When exactly did you have your surgery? I think it was around the same time Susie did (Feb 2). What have been your recovery experiences so far?
The reason I’m asking is that as I have mentioned in other posts, its been, and continues to be, a very difficult post-surgical recovery for my wife. As I mentioned, she’s had a lot of drainage of digested fats and pancreatic fluid from her surgical site. It has slowed down significantly in the past week, but her two drainage bags are really chapping her skin and she has been in a great deal of pain. The surgeon had to be very aggressive in his surgery in order to remove the insulinoma (he had to remove a good chunk of the pancreas near its head) and I think that has led to the drainage. They prescribed a statin drug that I have to start injecting her with 3x / day to dry up the drainage. I was wondering if anyone else was having some of the same post-surgical complications. She has also been having a very rough time with the mental and emotional impacts from this 2 month ordeal of diagnosis, pre-surgical wait, and post-surgical recovery. It’s been very hard on the whole family since the beginning of this year.
Jon Mikel,
Thank you for your kind words of encouragement, and your terrific site. It has been comforting to connect with others that have also had to deal with the effects of hypoglycemia and insulinomas. It’s good to know we’re not alone.
Peggy,
I would highly recommend Dr AR Moossa and his assistant, Dr Jackie Tracey, at UCSD Thornton Hospital in La Jolla, CA. Dr Moossa has over 40 years of surgical experience, was the Dean of the UCSD School of Surgery for over 20 years, has authored a standard surgical textbook (in its 15th printing) and over 300 articles. He specializes in surgery of the pancreas. He might initially strike you as a crusty old fellow, but he is actually a very kind, highly intelligent, often funny man. If you haven’t selected a surgeon, please keep him in mind. Also, Thornton Hospital is (for a hospital) a very nice place. When you enter the lobby, you’d think you were in a Hyatt Hotel or something like that. If you have to spend a couple of weeks recuperating in a hospital, that’s probably the place to be. Let me know if you have any questions.
Hi Maria,
I’m glad you found us. I don’t know where you’re having your surgery but I’m sure they will do whatever procedure is best for your situation. Everyone hasn’t said how large their tumors were, but I would be interested to know also. 2.5 cm seems big though. Good thing, since that made it easier to locate and they will probably be able to remove it easier as well. I will be thinking about you on Thursday. Hope everything goes well, be sure and let us know.
Michelle and Toni…I’m real curious to know how you both are doing!!
Hello all –
Well I too have been diagnosed with insulinoma – 2 weeks ago. I have a 2.5 cm insulinoma by the head/neck area. I am scheduled for surgery on Thursday. I did the blood test – which took about 3 hours since I hit a low every day around 10 a.m., next to CT scan, which they could see the tumor since it is so large, then a biopsey procedure last week where they place the ultrasound down my throat to get a better look and look for cancer. So, that went fine with good news and they scheduled my surgery for this week. I have been told that I should expect to be in the hospital for around 5 to 7 days or so, but they wrote me out of work for 6 weeks. I don’t meet with the surgeon until Wednesday so not sure how they plan on doing my surgery yet. I hope it is easy and goes well. This is my first surgery – I am 31 years old. Thanks for the website and I have been reading it for several weeks now. Glad everyone is doing well. I have had this for about 2 years or so, with lows in the 30s and 40s everyday. Is my tumor larger than most or has anyone heard of one that big? Do you think they will remove it laparoscopic or not? Thanks again and wish me luck!
Dear All
Im so glad I found this page on the web and feel quite proud that I started it!!!! Thank you to Jon for creating it!! Its just been so good to read about other people and finding information that was any use!
I really look forward to finding new messages and hope that those of us who gradually get further down the line can be of help to the others.
I actually left my house yesterday to walk down the road to a friends house – very slowly I might add – it wasnt far but by the time I came back I was very sore. However today I feel better and easier so I think thats a clue to recovering, build up very gradually but do something every day if you can. I sat and rested all last week and didnt really feel any progress. Its all new to me. I realised today that I feel ‘normal’ but without tablets! I was thinking I didnt feel much different but then remembered that that was because the diazoxide was helping to stabilize me most of the time. Im looking forward to feeling more energetic than I have for years!!!
Peggy
I think that the laparoscopic option comes with both a doctor with the experience and a tumor in the right place although I have heard that it is sometimes easier for them as they work under high magnification.
My body adapted to the low blood sugar over the years and when the nurses were running round waving food at me cos my levels were so low I was sitting there wondering what the fuss was about – I know now what they were worried about. In UK we seem to measure the blood sugar differently, usual blood sugars are 4 to 6 and low is anything under 2.5 to 3. Under 1 and you are heading for a coma if not already in one!! My lowest was 1.7 at work when I felt light headed! Most of my weekends my levels were 2.3. I believe I have suffered with this for years but cant really put an exact time on it – I just thought it was me and that i had odd turns!
My tumor was about 1.3 cm and that seems to be an average size. I know many are smaller but still cause such awful symptoms.
Amanda
My ‘wound’ is about 8 -9 inches across and an inch above my navel, slightly to the right where they did the work on the head of the pancreas. It was subcutaneously stitched and taped on top which is fantastic as I have no stitch marks and when healed will hopefully look just like a crease across my stomach! Another lady I met in hospital had had a tumor removed from the tail but hers had been stitched and was more to the left. It seems each doctor has his own style! My drain is causing more trouble healing as here they just leave it open to heal outwards and upwards! As it was a half inch tube it was quite worrying having a hole into my abdomen! It is slowly healing now and I dont think that will be too bad either.
Best Wishes to all!
Angie
Amanda:
I definitely had a similar experience with my memories of my hypoglycemic episodes. When I think back to them, it’s as though it’s a slide show where I remember a single image from every ten minutes of actual time. It’s fantastic that you were diagnosed so accurately. I was misdiagnosed with temporal lobe epilepsy for nearly two years prior to finding the endocrinologist who solved the mystery.
I have four scars from the laparoscopic surgery, and my experience is apparently typical. They made an incision for a drain, two for retractors, and one for the laparoscope itself. Each is less than an inch long, and they’re scattered around the center of my abdomen. If you used compass directions, there’s one NW of my belly button, one NE of it, one E, and one SE. Apparently they fade more over time (particularly if you use vitamin E cream, or is it A? I don’t recall).
Brendan
Amanda,
Welcome to the club! You’re my daughters age, I think you are our youngest member. That’s a good thing because you will come through surgery well. Hopefully, your case will allow and your surgeon will have the experience to perform the laparoscopic procedure as they did on Brendan. What a difference it would make in recovery time, and – with the souvenir you were left with! It sounds like Stanford is that place for you. Isn’t it great to have this information available. I’m glad that your diagnosis came relatively quick. Take it from me, this is not something you would want to deal with for very long. I know what you mean about feeling “drunk” and having a blurred memory of the whole thing. Very common, although frusturating. Those episodes are what you want to avoid. (hopefully you have a glucose monitor) There has to be a lot of brain cells dying, it adds up after a while! Take it from someone who can tell. 🙂
I’m glad you’re on the right track and I trust that things will go well for you. Your attitude is an inspiration.
Angie,
you’re still on our hearts. Thanks for starting the corespondence, hope you’re back in the “routine” soon.
Phil and Susie,
I’m sorry the recovery period is so difficult for you. I’m sure it will all be worth it and am feeling more “bold” in pursuing my treatment. Thanks.
Brendan,
if it weren’t for your experience, I would not have the nerve to start all over. Thanks.
Jon,
awesome thing you’re doing with this publication. Thank you!
Everyone,
Thanks for the encouragement!
Peggy
Angie: It’s awesome to have you right back!!! I told you that everything will be ok.
Lacey and Peggy (Lacey’s mom): Welcome to this forum. I hope that this page could help you in the hard way of diagnosis and treatment of insulinoma.
Phil: Please give Susie my best wishes. I know she will be fine.
Amanda: Best of all in this “adventure” and thank you for sharing again the link. I wish you the best of all and please come back again and post about your experiences.
Hi again,
I wanted to say a quick thanks to Myriah for posting the link about the specialist at Stanford. I actually have an appointment scheduled with him next week! I’m glad to have found somebody that has a lot of experience with this surgery. When only 1-4 people out of a million get insulinoma, it is hard to find a surgeon with specific experience. For those of you who missed the link, here it is again:
http://cancer.stanford.edu/features/patient_care_news/insulinoma.html
I will keep you posted with how everything goes. Hope all is going well!
Amanda
Hi everyone,
I came across this site while researching insulinoma, and figured that I would join the pancreatic tumor club and leave a message. I’m a 23 year old female who was just diagnosed with insulinoma yesterday. I’m lucky in that it has been a really fast process. From reading some of your experiences, that does not sound like the norm. I started having serious hypoglycemic episodes about 5 months ago with all of the typical symptoms: confusion, dizziness, lack of coordination, blurred vision, etc. The best way I’ve been able to describe the episodes is feeling as if I’m drunk. Once I “come to” after eating or drinking something, I often have a blurred memory of the episode. Has anyone else experienced that?
Anyway, I scheduled an appointment last week at Sansum Clinic in Santa Barbara (GREAT place!) to try to figure out what’s been going on. After fasting for 12 hours and having blood work done, they saw that my blood sugar was very low (37) but that my insulin was high. Apparently, that is a classic sign of insulinoma. I met with an endocrinologist two days ago, and he scheduled an emergency CT scan for yesterday. I met with the endocrinologist again after the scan, and he showed me that I do have a small, single tumor right on my pancreas, and presto! I have insulinoma.
I’ll be meeting with a surgeon in the next week or so to start getting ready for the next step. I’m not too worried about surgery, but am terrified about what kind of scar I’ll end up with. Can anybody tell me what kind of souvenir they were left with?
It has been great reading everybody’s stories and experiences with this. We are a rare bunch!
Thanks,
Amanda
Hi Everyone,
Its been interesting reading some of the more recent postings, especially those of Lacey and Angie (Brendan – your’s were great too!). My wife Susie was the one who had the pancreas resection/insulinoma removal at UCSD Thornton Hospital on Feb 2. I thought I might respond to a couple of things.
Lacey – I have to tell you that Susie’s recovery has been no where near as quick as you might think it was. Tomorrow marks one month since the surgery, and she is no where near back to her normal health. Since her particular surgery was so difficult, she’s had to deal with an incredible amount of site drainage of digested fats and dead pancreatic fluid. They had such a hard time locating the actual insulinoma that they had to take out the part of the pancreas they thought it was in. The assistant surgeon told us that she thought the lead surgeon was “bold” and she wouldn’t have been able to locate the tumor on her own. So yes, even though it a little more than a year from her first hypoglycemic episode to resolution, its still been difficult. Her episodes during that year drove her nuts and upset her life so much, she told me she couldn’t understand how anyone could put up with it for that long, let alone 12 years!! Susie really thinks that your mom should get exploratory surgery if they can’t locate the tumor by the 72 hour fast or by more conventional imaging methods.
Angie – We are envious of how easily your surgery went and how well your recovery seems to be progressing! I can tell you, its been, and continues to be, a very difficult road to recovery for Susie, given how difficult her surgery was. You sound like you’re experiencing some of the same post-surgical issues, like the uncomfortability when sitting up. You’re like Susie was – she dreaded the surgery, but went through with it (eliminating the hypoglycemia), and looks forward to her full recovery in the next month or two.
Best of luck to you and to Lacey’s mom!!
Phil
Hi Angie!
I am Lacey’s mom, Peggy. I’m so happy to hear that your surgery was successful and all hypoglycemic episodes are in your past. What a relief! And thank God you did not have to have the whipple procedure. I don’t know a lot about it but I assume the tumor would have to be in the right place in order to avoid that. I also wonder about the laparoscopic technique. Does the insulinoma have to be in the right place in order to have it done laparoscopically? Or is it more a matter of finding a doctor that has the experience?
I really do have a lot of questions. Some of them are keeping me from moving forward with this. I don’t have very good insurance and that is the reason it has gone on for so long. The good news is that our bodies are amazing in that my brain has learned to adapt to the low sugar. I hardly have any symptoms at all anymore. The bad news is of course I could fall to dangerously low levels at anytime without warning, which I do quite often.
Maybe Jon could answer some of these questions for me-like what are the chances of this not being an insulinoma, but something else like nesidioblastosis? Is that more common, or less?
And what is the average size of an insulinoma? 13x10mm seemed rather large.
Angie, how big was yours?
Phil, I hope your wife, Susie, is recovering well. I would like to hear more about how it went for her, since UCSD is somewhat in my area.
If I wasn’t hesitant to leave my e-mail address,(I was advised not to by my daughter) I would love to hear about other hospitals as well as doctors.
This is such a difficult disease for anyone to understand that has not personally gone through it. I am so grateful for the opportunity to discuss some of these issues with all of you.
Hi Everyone!
I’m back! Three weeks after surgery and Im back on my computer – just!
The operation went well – the tumor was removed ‘easily’ according to my surgeon and I avoided having the dreaded whipple operation. This I think has really helped my mental outlook and I am so relieved not to have had that done.
I was in surgery altogether for 6 hours but this included being brought up to the ward. I had an epidural through out surgery and into the following two days – it failed to block after two days and was replaced by a morphine pca, (which was great!)
I had no real problems from the actual surgery, was ‘uncomfortable’ and ‘sore’. It felt like an iron bar was resting across my stomache but not in any real pain! I did have problems with trapped air which was really painful and ended up with a water infection from my catheter. I developed a temperature of 39.7 which held up me going home but left hospital two weeks after the op. My blood sugars have been totally normal almost straight after the operation itself and I feel completely relieved its over and has been a success.
I’m now recovering at home and have more mobility than I expected, sleeping is uncomfortable. Laying flat was a problem as I couldnt sit up but as the days have gone passed I am stronger and able to roll up a lot better.
I was so afraid of having the surgery its the most frightening thing I have ever done but my doctors were brilliant and the care I received especially at first was excellent.
I’m still here, I’m recovering, I feel normal, looking forward to getting back on my feet and back into routines – I cant quite believe it yet!!
Anything I can do to help anyone or any questions, I want to help as I have been!
Good luck to all
Angie
Lacey,
Your mother’s symptoms sound very similar to what I was feeling – and all of the test results you’ve described are consistent with a possible insulinoma.
When using imaging tests to find it, you’re at the mercy of the analyst who reads the results. They have a protocol they’re told to follow, but it’s a rare enough tumor that not many have experience finding them. Ultimately, I had both an MRI and a CT when they were looking for mine. The CT scan finally showed it to their satisfaction, but my surgeon actually used the MRI result when planning the surgery – it showed up there, but the analyst missed it.
If they really can’t localize it with either of those methods, I think they typically fall back to ultrasound. I would highly recommend your mother consider the additional options, even if they’re surgical. if it’s an insulinoma, her life would be so much different if the tumor can be removed. My blood sugar went to normal levels immediately post-operative.
As for your question about “organizing, planning and creating,” that’s also very familiar. My job and home life were a wreck because of the mysterious, frequent, and unpredictable bouts of confusion and exhaustion. I’ve very fortunate that my wife was so supportive. I had incidents where I couldn’t even succesfully buy groceries.
Good luck to both of you…
Brendan
My mom has been reading this website every day, increduously, because she can’t believe that she has finally found somebody — more than one somebody — that has gone through what she has been going through for the past 12 years. She’s particularly jealous of Phil’s story about his wife, Susie — so good to hear she is doing well, by the way — because it sounds like the diagnosis and surgery has all happened relatively quickly. This hasn’t been the case for my mom.
For the past 12 years, doctors have peformed tests, suspected insulinoma, and yet have not been able to find the tumor. She has had three “72-hour fasts,” which is a funny name because it only takes her two or three hours to drop really low. (She does not have reactive hypoglycemia, as her sugar usually stays between 30-60.) The tests found that insulin levels remained high when glucose was low. This is why they think she has insulonoma, but they haven’t found a tumor. She has had MRIs, CTs, endoscopy, and an angiogram (she thinks that was when they were looking for a tumor?).
My mom has increasing trouble waking up, and my dad has made a habit of waking up in the middle of the night to make her drink something. Relatively often, she has episodes where we need to call the EMTs. She doesn’t have the energy to exercise (walking up a set of stairs drops her sugar so low that she has avoided exercise.) Strangely, she has only gained 15 pounds over the years, even though she eats constantly. And she only weighs 120 now (though she only weighed 105 before, even after having two kids. She’s 5’4″). My mom is 48 years old now.
She has been on diazoxide, on and off, since the beginning of all of this. It’s not working anymore for her. She’s wondering how long it’s supposed to work … ?
My mom kind of hopes there is insulinoma, if that means it can be removed. The tumors can be really tiny, she’s been told. But shouldn’t they have grown over time? She is not interested in having exploratory surgery, but even after all these years, we’re really hoping they find something so she can return to a normal life. After having so many seizures she has lost the ability to organize, plan, and create. Has anyone else experienced this?
Her blood sugar gets much lower during her menstrual cycle. Is this normal for insulinoma? And are there symptoms of insulinoma that are exclusive to insulinoma (as opposed to just too many pancreatic cells, like “hyperplasia”)? How common is hyperplasia? How big do insulinomas have to be in order to be seen?
Toni: My mom had night sweats, outbursts and blurred vision during the first couple of years, but no longer. How did your 72-hour fast go?
Angie: We hope you’re doing well.
Michelle: Did they ever find the tumor?
Everybody: My mom thinks it’s so important for people who have these rare cases to find each other like this, and to communicate. So please continue.
Angie,
Presently my wife Susie is in UCSD Thornton Hospital in La Jolla, CA recovering from an insulinoma removal/pancreas resection surgery that took place last Friday Feb 2. Boy, I could write a book telling you about what we have been through the past year trying to diagnose her hypoglycemia! She is presently in the difficult phase of her post-op period, just having come off the pain medication. However she was walking around yesterday and I am happy to report that even though she hasn’t had anything to eat or drink since Friday morning (midnight Thursday), her blood sugar has remained in the 80 – 90 range. Pre-op, she would have been totally hypoglycemic (20 – 30 range) by later in the day on Friday.
Her hypoglycemia started last February with a couple of really strange episodes of behavior. However, we really noticed it for sure a few days later when, after getting off a ride at Disneyland, she was walking sideways and acting in a very bizarre manner. After taking her to the emergency room at a local hospital, they told us her blood glucose was down to 35. As she drank a sugary drink and a white bread sandwich, we could see her returning to her normal self. Her uncle, who was the formal Chief of Medical Services at Kaiser and a practicing physician for over 50 years, told us he suspected she might have an insulinoma (he only saw 2 cases of it in his entire career!!). However, for close to a year, she went from doctor to doctor, and each told her her blood chemistry tests simply indicated that either she was diabetic or had reactive hypoglycemia. In the meantime, she had several very scary episodes and a 20 lb weight gain, though she eats healthily and exercises regularly.
This all came to a head at the beginning of 2007 when on two consecutive days, she experienced episodes so bad that she wasn’t responding to anything we gave her to eat or drink. We had to call EMS two days in a row, they infused her with glucose and took her to the ER (her blood sugar readings on those days were 27 and 30). On the second day, they admitted her to the hospital. She was in two different hospitals for 2-1/2 weeks while they did three supervised fasts, a CAT scan and MRI. They finally found a 13 x 10 mm insulinoma on an endoscopy and she had the surgery last Friday. It was difficult for the surgeon to find it, but he did and my wife is finally on the road to recovery. There was a 10 day period (between diagnosis and surgery) in which she was discharged, had to use a glucose monitor and keep her blood sugar up. Like you, she was absolutely terrified about the surgery, but finally had it. She’s now in her difficult post-op period, but once she’s past that, she’ll be cured.
So keep your chin up and go bravely! You don’t want to live with this horrifying hypoglycemia stuff!!
Dear Angie
Thank you very much for answering my question about the calcium fusion test. It eases my mind knowing that it is not that intrusive. I wanted to wish you luck on your upcoming surgery next week. Keep us posed as to how you are doing once you are feeling better.
Best of luck
Homa
Toni,
I agree with Brendan, your symptoms are consistent with insulinoma.
Remember that the symptom complex is due to autonomic nervous overactivity, that could be FATIGUE, WEAKNES, HUNGER, SWEATING, IRRITABILITY, CONFUSION, BLURRING OF VISION and DEPRESSION.
Please write us as soon as you get the results of the 72 hours fast test.
Dear Myriah,
You don’t bore me at all.
All this symptoms you have are consistent with insulinoma.
I would like to know what are the results of the bloodwork (insulin and C-peptide).
Maybe you could have high insulin levels when you have hypoclycemic episodes.
Why don’t you look for a second opinion?
Remember, It’s not normal at all to have hypoglycemic episodes and if you really don’t have insulinoma the differential diagnosis should be done with:
Familial persistent hyperinsulinemic hypoglycemia
Primary islet-cell hyperplasia (nesidioblastosis)
Non-insulinoma pancreatogenous hypoglycemia (which only produce postprandial hypoglycemia).
Dear Angie,
The start of enzyme replacement therapy depends in the type of procedure for insulinoma resection. Since insulinomas are small (usually <1.5 cm), usually single (only 10% are multiple and usually associated with MEN 1 syndrome) and usually benign, the first procedure to perform (if possible) is the enucleation of the tumor wich will return your funcionts as normal without need of oral pancreatic replacement therapy.
In some kinds of procedures (like Whipple procedure or total pancreatectomy -God forbid-) you should start ORAL pancreatic replacement therapy. In this cases you should take this replacement therapy.
Insulinomas are often on the surface of the pancreas. Most of this tumors have a lining around them that separates them from the pancreas.
Diazoxide adverse effects are,
*1% to 10% of patients will develop:
Hypotension, dizziness, nausea, vomiting and weakness.
*less than 1% of patients will develop:
Angina, anorexia, burning, cellulitis, cerebral infarction, constipation, extrapyramidal symptoms and development of abnormal facies with chronic oral use, flushing, headache, hirsutism, hyperglycemia, hyperuricemia, inhibition of labor, ketoacidosis, leukopenia, MI, pain, phlebitis upon extravasation, rash, seizure, sodium and water retention, tachycardia and thrombocytopenia.
I think that your new hair growth will fall as soon as you stop taking that drug.
This blog is just for educational purposes (patients and medstudents). I'm glad to help in anything.
Best of all with your surgery. Please let us know how was it.
Toni,
Those symptoms sound very familiar. It’s miserable (and life changing) and it’s impossible to explain the severity to other people.
When I did the 72-hour test (which actually only took four hours to complete, as my blood sugar dropped from my post-breakfast 64 to 35 in 3 hours of inpatient care), and was succesfully diagnosed, my endocrinologist had a PICC line inserted into my arm with a glucose infusion. I had the PICC line all the way through surgery a month later, and while it was somewhat of a hassle, it kept my blood sugar at a stable level during the entirety of my post-diagnosis/pre-operative phase. I was lucky enough that my health insurance covered the whole thing, as they shipped me glucose every couple of days in huge boxes.
Oh, other tips that helped me: I bought a blood glucose test kit (like diabetics use), and tested my blood sugar levels every one to two hours. If I went below 60, I’d eat something that’d help raise my level without spiking it too high. Orange juice is a classic choice, of course, but I found some protein sources (like nuts) to be valuable as well.
I know it’s frightening to think about the surgery, but it can completely resolve the problem, and it’s life-threatening to just try to cope with a case that severe. I’m lucky that I didn’t get into a car accident or walk in front of a bus prior to understanding what was going on. My mental state is much improved, and perhaps it’ll have the same effect for you.
Good luck,
Brendan
I am so glad I found this website. I am going inpatient next week to do the 72 hour test etc. to determine the cause of my almost daily hypoglycemic episodes.
My episodes have been going on for over three years (now that I think about it); however, I didn’t find a doctor who gave any concern to them until November 2006 when I went to an Endocrinologist associated with Vanderbilt Hospital in Nashville.
The following is a summary of my symptoms and experiences:
1. My blood sugar levels go as low as 27 and stay in the high 50’s and 60’s “on a good day.” Of course, my head feels as if I’m intoxicated and often feel “hung over” for many days.
2. I work 8-5 in an office and can barely make it through the day without wanting to take a nap. There are many days I have to take one or I feel like I’m going to fall out from exhaustion.
3. I have days when I am starving and want to eat every 2 hours. However, eating often doesn’t seem to keep the blood sugars at anywhere near a normal level.
4. Most recently I’ve been experiencing night sweats so bad that I will actually have sweat running down the middle of my back and chest. I wake up with my pajamas wet and damp. (Until 2 weeks ago I blamed this on pre-menopause as I am almost 47; however, at my annual exam in January I had labs done which indicated my hormone levels were normal.) I talked to the Endo who confirmed this was another symptom of hypoglycemic episodes.
5. I have a history of depression which is controlled by medication. (Genetic predisposition and some pretty poor life choices don’t help!) However, I find that I get so angry at times that I want to scream and will have to let whoever it is who has upset me know exactly what they’ve done to upset me. In doing so, I don’t spare ANY words. I’d describe them as more of honest outbursts than just plain hurtful ones. In any case, we all know that doesn’t get you very far in this life! Most people don’t like to hear what they are doing that is so wrong!
6. I have had a problem with blurred vision for the last several years. This hasn’t been attributed to the hypoglycemia by a doctor but I wonder if it could be.
I have undergone major abdominal surgery in the past 6 1/2 years and am really scared to find out whether I have in insulinoma because then I will have to make a decision to have it removed. I just don’t know if I can handle being cut again. I’m not scared of surgery and actually am a very good patient who is compliant and heals quickly but am tired of being the person who is ALWAYS having some kind of surgery.
I’d love some feedback from others regarding this post. No one around here understands what I’m going through and I feel they think I’m just exagerating my symptoms but if they only knew how bad I felt most days.
Just like now, I’m lightheaded and dizzy. I’m not feeling like I do when my sugar is low but feel this way sometimes. Go figure.
Thanks for letting me vent.
Hey Jon it’s Myriah,
Providence said I had it and to go see this guy Dr.Liao that they recommended. Then I went to see him and right then and there said just from the blood work he didn’t think I had insulinoma. He had more blood taken for tests and he said it would show if I did in fact have insulinoma. He called me yesterday and said that no way I have it. He said that he would get me on a medicine that could help the hypoglycemia. However it was only a 70% chance that it would help. HE said all my swelling and hair loss are not going to help with this medicine and to go back to my regular doctor. Apparentely, my blood sugar levels are PERFECT and nothing unusual. IF that were the case then why would he say I even have “severe hypoglycemia”?
I am stuck. I can’t even wear jeans anymore. IT literally rips my skin. You can see every imprint and make of jeans. I have bought the top 5 designer jeans out there and now am over a thousand dollars in the hole hoping they would not hurt somehow. I am so tired. I am struggling to keep my weight off and I can NOT work out what-so-ever. I will come back from the gym with my body swollen and little blood specs on my ankles where my socks were. (Not actual blood out on my sock just little blood vessels all over) I gain a minimum of 5 pounds of solid fluid after the gym. That’s with a low impact workout.
My hair is barely on my head. My skin is WHITE as a ghost. I am Italian and I have never been anything but olive skinned. Obviously, something is not right. I use to model before my son was born and now I look and feel like I am a corpse. The circles under my eyes are so bad it looks like someone hit me.
Apparently the specialist, (David Liao of Western Washington Medical Group) got his training from Harvard and University of Washington. I have no reason to believe he is wrong in his diagnosis.
I have no one else to talk to about this. I am working only 3 hours a week to keep my job. I am on bed rest the next day because of the toll it takes on my body.
I am willing to hear any opinions you may have. I am stuck and I feel like a freak show. My husband doesn’t understand and I think he just wants his wife back. I don’t complain because he works 60 hours a week and he himself has undergone 2 open heart surgeries by the age of 25. His next surgery is next year and he will be 33. I want to be well so that I can be super strong after his surgery. Thanks for listening and I hope to trust you are a Medical Doctor.
I can handle pain, but the pressure of this is unbareable. I am 118 pounds now and feel bigger right now than I did before I delievered my son. I was at 172 pounds when I delivered. THat feeling that I am going to pop is scary. I am like a bad zit that needs to just go away. I am scared if I fall or something all this fluid is going to come out and drown us all. ha ha 🙂
Well that’s all my rambling for now. Hope I didn’t bore you.
Is there any way I can have the blood work released? I also agree about the scan like in Homa’s case. Dr. Liao said that wouldn’t need to be done and there was NO WAY I have insulinoma. None of the blood work indicated any abnormalities. Grrrrrrrrrrrrr I’m not making this up!!!! IF I were at least I would keep the hair on my head! 🙂
I have been suffering with hypo ‘episodes’ for the past three years and recently did a 72 hour fast in the hospital, which confirmed that I have insulinoma. The next step for me is to have the various imaging tests to localize the tumour. I am terrified of having surgery, but am also relieved to know that it can be removed and I will hopefully lead a normal life again. Everyone’s experiences have been helpful to read. I wish you all luck and hope you can live a normal life again soon. I am anxious to hear how your surgery goes Angie. It sounds like you have done your research and I am sure that everything will be fine. Best of luck.
Michelle
Dear Jon
I have been wondering if you know anything about the need for enzyme supplements if you have the whipple procedure? I imagine that when part of the intestine and the gall bladder are removed you lose those areas that secrete such enzymes?
Do you have to take them in tablet form?
Do you take them before every meal?
What happens if you dont?
I just like to be pre-warned!
Oh yes do you know anything about the effects of Diazoxide?
Ive developed increased hair growth from literally my head to my TOES!!! Will this fall out when, as I have, stopped taking it?
Thanks for any info you can give.
Ps Are you using this blog for research? I think its excellent to be able to read and discuss all this and not feel stupid.
Dear Homa
You asked about my infusion test…. well I didnt find it bad at all really.
The worst part was the local anaesthetic injection into my groin. Then there was a lot of pressure as they put in the tubes with the wires in. This may not be exactly correct but I will describe it as I remember and going by what I was told – probably in lay mens terms. I didn’t feel anything much as the wires were pushed through the artery, I think I had one in a vein as well.
I watched on the monitor as the wires appeared and as they directed them into the various arteries that they wanted to test. I find things like this very interesting. As the calcium infusion was released I could see a slight fog rising on the monitor and felt an odd warm flush go through my body – wierd!
That was it really! I had to lay flat for four hours afterwards as the vein or artery could rupture. Eating soup horizontally is a real challenge!
I believe they test the hepatic artery going into the liver as well so that they can pick up any rogue cells that may have found themselves an escape route. I think, but may be wrong that this gives one indication of whether the tumour has possibly matastisized.
I hope this helps a bit – I honestly found it fairly routine in the general scheme of things.
Good luck, keep me informed!!
Angie
Myriah
How can they say you dont have insulinoma from blood work alone? With all your symptoms and already one opinion you have whay reasons do they have?
My hospital confirmed the insulinoma after the fasting test. You probably know that normal peoples pancreas stops producing insulin when the body does not have any food intake but the insulinoma continues to secrete insulin so our blood sugar continues to drop. Surely this is the test beyond blood work that they need to take account of.
I seem to have been so lucky that my doctor had a colleague in endocrinology and just happened to be on the ball. All I can do is wish you luck and keep positive that someone will get to grips with this for you. Dont loose hope!! Give them hell!!
PS I wish I was 120lbs!!!! (Im 5ft 7 and weigh 160 lbs which is at least 14 -21lbs more than I want to be, 14lbs of that Ive put on in the last 2 years and thats trying to lose every week)
Best of Luck
Angie
Angie: I wish you luck in your surgery
Myriah: WHAT? How did he figure that you don’t have insulinoma? Do you have the results of your last blood work?
Anyway, you have the right to ask for a second opinion.
Several insulinoma cases are diagnosed at surgery with transoperatory ultrasonography, like the case of Homa.
Best of all,
Jon
Angie,
I am SO bummed I could cry. Just got more blood work back and the Endocrynologist told me I did NOT have insulinoma. He said I was hypoglycemic and only 70% chance that my symptoms improve. Also my sweating and my average 10 pound weight gain/loss isn’t a part of this. He said it is not hormone related and that he doesn’t know what to do. I have been to EVERY specialist and have all my symptoms personally documented. I went to my son’s school today and had to walk around for an hour. I just about passed out. Providence misdiagnosed me and told me I had insulinoma for sure and that they needed to give me an MRI and or CT scan to find it. WEll just wanted to give you the heads up. You take care and I will be thinking of you. I know your surgery will go great and I still want to hear all about it when you get back energy to write.
Sincerely,
Myriah
Dear Angie
I did go through some tests before surgery. I had a CT and endoscopy, but there were not able to find the tumor on either one of the tests. My doctor decided to go ahead and have an exploratory surgery, Since it appeared that the tumor was very small, instead of doing the calcium infusion test. Surgery does have a high success rate in finding the tumor.I am going to another hospital in the next couple of month and start all over again with diagnosis. I am sure they will do the Calcium infusion test this time. I have heard that it was an invasive test. I know you mentioned that you had it done. How was it? was it really invasive?
I wish you luck with your surgery. The good news is that they had found your tumor so it eliminates the guessing game. they can just go in and remove it. I am sure you won’t have any complications afterwards. My only advice is to take it easy. don’t push yourself and just let your body heal. It takes a while, To not have to deal with insulinoma, is very much worth the trouble of recovering after surgery. It sounds like that your surgery is fast approaching. I wish you the best and good luck
Homa
Oh no! You absolutely did not sound demeaning! If I didn’t want to hear your opinions or input, I would NOT have even written!!! As sick as this sounds I am so excited for your surgery. When you are all ready and better I would love to hear all about it! I know your surgery will be a success and I am so glad you are on your way to feeling much better! Thank you for all your insite. The picture on this site makes me glad I am not a surgeon. The whole thing doesn’t look right to me! 🙂 Take care and I hope you liked that site! Myriah
Dear Myriah
You seem like you are going through such a nightmare, and I can not begin to imagine how bad this is for you. I hope I didnt sound demeaning, but the amount of sugar you have to get through is just so horrific. It is easy with a little knowledge to make quick judgements and I hope your doctors start taking you more seriously!
Insulinoma obviously has many far reaching effects on our bodies and I suppose as it is so rare all the answers probably are just unknown. I hope you find a way through this quickly and wish you well! I will look up your site!
Angie
Kind patients and readers,
If anyone here wants more detailed information or even illustration of the surgical procedures, please don’t hesitate and contact me here.
Best of all,
Jon
Angie,
Oh yeah one more thing. I did try the small snacks thing and resisted the cravings. Unfortunately that’s when the blackouts started to happen. I got so shaky and ate something that wasn’t fruit or candy and then I blacked out about 30 seconds later. Same thing the rest of the times I have tried. I have showed my family and it’s almost like a comedy.(of course it’s not funny)
Thank you for the book advise as well I will be sure to check it out. I was a HEALTH nut before this because of some modeling and traveling I use to do. I am just glad I still have some hair left on my head. Thank you so much for your advice. I have been researching this on my own for years! You have no idea to know how good it feels to not be so alone.
myriah
Myriah
Hey Angie, thanks for the reply! I am leaving a site I found about what I have. Almost the same story except she only had her syptoms for two years. I guess the show “house” took after this story! As for the sugar levels, I know!!! I also eat fruit like a mad lady. PER DAY I eat a full Safeway bag of green grapes and 2-3 grapefruits. I even have them sent to my house! OUt of control. The weird part is that my glucose levels are PERFECT! Even a regular blood sugar test, perfect! I wake up in the night all night long eat a grapefruit first and then all the candy! I of COURSE struggle with my weight because it is so bad. That is a huge side effect of insulinoma. For me I am huge. I change on an average of 5 pounds a day. Yesterday I was at 122 and the day before I was 116. A few months ago I was 107. I feel like one of the toy capsules you put in the water and watch them turn into an animal! I had to go to the doctor both days and they laughed right out loud. THey weren’t going to weigh me on the seconds visit, so I told them too. They were shocked! Of course all the swelling hurts like mad, but what can I do? I am only 28 years old and feel like I am 180. The Endocrinogist is now running a ton more labwork and I have to keep pricking myself like diabetics do. I am so jelous you have surgery soon. I want this thing out of me in the worst way!!!! I have a three year old and I want to try to keep up! I am so glad someone has this(not to be rude) because it’s hard to talk to a Ferret! 🙂 I am excited for you to see this site, you will LOVE IT! Talk to you soon hopefully, and I wish you the best of luck! Everyone the best of luck! This thing is so debilitating!!!!!!!!!!!!!!! grrrrrrrrrrr
Myriah
http://cancer.stanford.edu/features/patient_care_news/insulinoma.html
It is certainly interesting getting a few more opinions and experiences….
Dear Brendan
It sounds like the laparoscopy is obviously a successful option if possible but so far my surgeon has decided it can not be done this way with mine.
I do feel that my hypo episodes are not nearly as severe as those of you who have blacked out but feel that going on the information they could easily become as worse with out warning. Many of my symptoms have only come to light and made sense since being diagnosed, the severe night sweats, fuddled speech and distorted sight! I have had a one weird episode recently, when I felt disorientated and a bit “out of it” almost like a lapse in time, seconds I’m sure, but I have definitely been confused once or twice! (Mind you that may be normal!!!)
Best of luck!
Dear Homa
I’m very shocked that you had to go through such serious surgery when they couldn’t find the tumour! Did you have scans and tests? I went through extensive procedures, MRI & CT scans then the calcium infusion test, which can be a full body or just pancreas and liver area and finally the surgeon requested an endoscopy before he would even consider an operation.
I wish you luck in the future.
Dear Myriah
It seems terrible that is has taken such a long time for you to be diagnosed!
Unfortunately for you such a huge ingestion of sugar will only raise your insulin levels which in turn lowers your blood glucose. I have read a lot about diet and insulin. The more sugar you eat the worse you will be. Such a sugar intake creates huge fluctuations in your body with severe lows. Try and resist your cravings and eat cereal bars or fruit instead, even if you eat a lot of small low sugar snacks it surely must be better than such a huge sugar based diet.
I would imagine your doctor should advise you of this so dont take my word for it, read up on diabetes as it has very similar advice for keeping a balance to help diabetics control their symptoms.
An interesting book to read is the Greek Doctors Diet Book by Dr Fedon Alexander Lindberg. He carefully looks at the effect of insulin on the body which I found quite interesting as many times my problems with keeping my weight under control have been ignored even after diagnosis. He says that too much insulin makes you fat!!! Im only part way through so bear with me!!
Ive got two weeks to go now and just want to get it over and get on with recovering!
Thank you for adding to this page it makes really interesting reading and hopefully more people will find it the more goes on!!
Look forward to hearing more!!
Angie
I have been going to the doctor since I was a 1 yr. old. I have had my thyroid and blood sugar level checked every other year of my life. I am 28 yrs old and have insulinoma. I am meeting with a doctor in a few days to go over treatment and surgery stuff. At one years old I sneaked out of my room and got up on the kitchen counter and found the sugar bowl. My mom found me shoveling straight sugar in my mouth. From then on out I have needed sugar like crazy. A pound a day, and now I am up to two pounds a day. Once again I went to the doctor and had more blood taken. Then they found this. I have all the side effects listed. Blackouts and all. I wish the best for all of you. So wierd. Myriah
I am a 38 year old who has had insulinoma for the past four years. I had surgery four month a go which was uncussful. They were not able to find the tumor. It was an extensive surgery and it took me more than a month to get back on my feet.
I am going to another hospital in the near future to start all over again. Since surgery is the only cure for insulinoma, I know I will have another surgery eventually. I am not worried about that part. I am more ready for it this time. Since I know what to expect. It would be a little easier. I just hope they can find it this time.
I have had more hypo episodes since the surgery and they have gotten more intense with blackouts. I would like to know if anyone had to go through second surgery to find the tumor and if anyone experineced the hypo episodes suddently getting worse. It is hard to have something that not many people have. Nice to see how other people who have insulinoma are coping with it.
good luck to everyone
Homa
Angie,
I’m a 31 year old who had an insulinoma removed laparoscopically last year. My life was severely impacted by hypoglycemia – confusion, blackouts, disorientation were a daily occurrence – and the surgery has made all the difference in the world. I spent a month on a glucose PICC line prior to surgery, but because it was done via laparoscope, I was out of the hospital and mostly mobile three days after surgery. I had to have a drain in my abdomen for a further four days, but following that I was able to go to work and function normally. Had I not had it, my hypoglycemic episodes were getting worse and worse, so I’m sure I would’ve eventually gone comatose had it not been treated.
If you have any questions, let me know, but I would very much recommend surgical treatment. It has returned my quality of life to me.
Brendan
Hi Angie,
I think it may be better if we talk if you would like to that is. If so email me at helen.bruce@swessexpct.nhs.uk.
I would like to mention names etc and would prefer not to do it via the website.
Looking forward to hearing from you.
Best wishes
Helen
Dear Helen
Thank you for taking the trouble to reply to me with your experiences. February is looming up quite quickly.
i would be interested to know where you had your surgery, Im going to be going to the Royal London, Whitechapel.
Since writing the above I have done a bit more reading and have looked into things a little deeper and although at one point I felt it was a very drastic option I now see that having the surgery eliminates any danger of the tumour turning malignant and suffering any more major complications. I have the occaisional hypo, for no reason as I can see, and I know my blood sugar is still low a lot of the time. I have also read that the hypos can turn more severe without warning and this was something to really think about.
The largest worry I have over the surgery is the whipple procedure and the complications resulting from that. As far as having an epidural, I havent discussed it at all, in fact it hasnt even been mentioned. I am going for my pre-admission in the next two weeks so I am hopefully going to find out a little more about the whole thing.
Thank you again for writing and am very glad to hear everything went so well for you. Anything else you think of would be very much appreciated.
Best Wishes
Angie
Hi Angie,
I am a 36 year old that had insulinoma and had the tumor removed last April and all is well.
It was a very big and scary decision to make, however as you I did not want to live with this condition. I am pretty sure that the decision would of been taken out of my hands anyway as I had a reaction to diazoxide (which I believe I was my consultants first patient to have a reaction). I then went onto injecting myself 3 times a day with octreotide which got quite depressing at 10 o’clock at night when you’re tired. Anyway whilst on octreotide I was still having hypos not as often though, therefore I think I was heading towards the surgery.
My op went well with no complications and was in hospital for 2 weeks. I had an excellent surgeon with whom I had a lot of confidence and trust in, he is a top consultant surgeon of Hepatobiliary and Pancreatic Surgery. I can suggest (if you have not already done this) that you do some research on your surgeon and most importantly ensuring he/she is experienced in doing this procedure.
Are you going to have an epidural during and after the op? If you do I would suggest that when they want to take you off the epidural you go onto the patient control morphine then onto the oral morphine. They took me off the epidural and straight onto the oral morphine which did not work, I was in terrible pain. I think you need to go down the different level of pain relief evenly. They did this as they thought I was doing very well and would cope with just the oral pain relief.
I would say that the first two months after surgery is difficult in getting back on your feet and sleeping was a nightmare for me as I like to sleep on my side/tummy. Besides the little hurdles during recovery I am happy that I went with my feelings of getting the tumor removed and trust me I had loads of questions and doubts but my gut feeling was to do this.
I hope that my words have helped you and only you can decide what route you take. I will check this website in case you have any more questions. Wishing you the best for a successful operation and speedy recovery.
Take care
Helen
I wish you luck with the surgery. I think that everything is going to be o.k.
Get well,
Dr. Jon Mikel Iñarritu-Castro
I am suffering from an insulinoma (I am not a ferret or a dog) and have just elected for surgery in feb 07. I would like to hear from other people who suffer or who have had the surgery or/and their experiences. All i keep finding is experiences from ferrets not people, so glad I have something in common with them!
It seems I have been living with low blood sugar for years and have put up with it thinking this is a peculiar part of me. It was only after a blood test this year that deduced my glucose levels were particularly low that started the ball rolling – and baby has that ball rolled!
After a 72 hr fast – I lasted 30 hrs with two hypos, an MRI and CT scan i then had a calcium catheter test and recently and endoscopy, all confirming what they thought and what it was doing. I have been prescribed Diazoxide tablets to control the insulin and now a diuretic to control the odema from the diazoxide.
Now, I am booked in for surgery and freaking! The medication really helps but not all the time so really at 40 I really dont want to live like this, however scared of the surgery. I actually dont know what it will be like to be normal again and just hope that I dont suffer more complications from the surgery that will make me question whether it was worthwhile having the operation or sticking with the medication.