I would love to hear your stories of how you felt and what your labs were. Also, what did the doctors finally do to diagnose you. Thanks.
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replied June 16th, 2014
Hi Sue, i don't know if you are still around here. i am going through a process of figuring out that i probably have an insulinoma and so i'm searching the web for information from other people who have dealt with it. It's almost 5 years since your post. But for what it's worth, i've had kind of mild manageable and sporadic hypoglycemia symptoms for about 8 years, i'm guessing, in retrospect. The only time i felt it was lunch time, i got symptoms of irritability and spaciness, and i learned that i needed to eat lunch so kept food in the car, every day for lunch i ate a small can of salmon, a rice cake, and an apple, and that took care of it fine. I didn't have symptoms any other times of the day except that i did start feeling a lot more tired around that time. In more recent years i was getting more and more tired, exhausted, and i thought it was life circumstances wearing me down, and i retired from my job in January of last year. i thought i would bounce back after a short rest but it didn't happen. i continued to feel exhausted all the time, i didn't want to do anything. I wasn't depressed. i just felt wiped out, like adrenal exhaustion. I had been taking sleeping medication for a long time, Ambien for a long time, and then in late 2012, i added Lunesta, so when i felt groggy in the mornings, i attributed it to that. In January and February of this year, i tapered off the Lunesta. During that period of time, once near the beginning and once at the end, i had two very scary episodes. On the first one , i got up in the morning and i fell while walking to the bathroom. Thinking it was from the sleeping meds, i got up to keep going but i immediately fell again. Then i realized something wasn't normal. I had impaired coordination. Somethig was wrong with my brain. i was able to walk but carefully. i was not able to type. I had a very hard time trying to put some water in a pan on the stove to heat it up to make instant oatmeal. When i got the oatmeal, i was eating it and very quickly, i realized the incoordination had gone away, fast. i could type, i had normal coordination. And it was clearly caused by eating something. The second episode a month later was much worse. I woke in the morning to see that i was falling out of my bed. I fell to the floor. i couldn't get up. i was sitting but i couldn't move around, i was too out of control of what direction i was going to go in. i couldn't pronounce my dog's name. i knew it was like the other time and that i needed to eat something. i crawled to the kitchen and got a piece of rye bread and started eating it. Very quickly, i felt the change, i knew i could get up and walk. i was normal again. A few days before this happened, i had had routine blood tests. My glucose came back 32mg/dL. my doctor emailed me to ask how i was feeling. i told him i was feeling normal, which i was. Normal is not very good--groggy, not very energetic. i thought it was from the sleep meds. But now, once i got that critically low blood sugar test, which my doctor thought was a lab error because i said i felt normal, once that happened, i knew i had something seriously wrong. I told my doctor and he referred me to an endocrinologist. I started eating 5 times a day instead of 3. Oddly, before all this happened, i would have dinner at night and then i would not eat again until about noon. i would wake up in the morning and i would take my dog for a half hour walk, i would do some yoga, i might straighten up the house, then i would have breakfast. i actually often felt pretty good in the mornings, motivated, having some energy. But after the second episode and the low glucose test, i stopped the habit of long leisurely pre-breakfast mornings, i started doing home glucose testing. My morning tests were just like the one at the lab, in the 30s or sometimes the 20s. Gradually when i started eating more times during the day, the 7, 14 and 30 day averages on the glucose meter started edging up a little, still not very high but better. To me, if i get a result in the 40s first thing in the morning, i cheer for joy--that is a good result for me. To me, the 40s is high.

So i went to see the endocrinologist. What a waste of time. He seemed to think i was not being honest in reporting my symptoms. in retrospect, i think the only kind of patient he treats are diabetics and because my symptoms weren't like what he sees with diabetics, he said "It doesn't add up." because i told him i have hepatitis C (mild, asymptomatic) he said he suspected it was something caused by my liver and he told me i should see a liver doctor. i do know that the liver plays a role in glucose regulation so i went to a gastro doc. He said he saw no reason to thing, given my condition, that my liver played any role in the symptoms i was reporting. Right before my appointment with this guy, i had two more episodes of scary extreme symptoms. Two days in a row, i woke up in the morning laying on the floor in my bedroom with no memory of how i got that way, i was disoriented and confused and i couldn't get up, struggled to get up but i couldn't, for about 10 minutes. Then finally i could sit up and i saw my valuable vintage guitar lying on its face, with no memory of knocking it over. i had been unconscious for some period of time and no memory of what happened. i crawled to the kitchen and ate a piece of bread. I could walk after that but i didn't feel very good. i felt tired for days. The next day, the same thing happened again, i woke up and it was 7am and i thought i would get up and have some breakfast. The next thing i knew, i woke up and it was around 10am and i was laying on the floor next to my bed with no memory of how i got there or what happened in the previous three hours. I ate a protein bar that i had put in my bedroom the night before, and then i could walk. I also had peed on myself during the time i was unconscious. i probably had a seizure but who knows, i live alone.

I saw the gastro doc the next day after that. He said, "It's odd that no one has tested your insulin levels to rule out insulinoma." He ordered some blood tests. He gave me a referral to a new different endocrinologist.

The blood test included glucose and insulin, not C peptide. It included some other stuffl. i had read about insulinoma by the time i got the results---it was a non-fasting afternoon blood test. i had eaten three times that day, the most recent was about an hour before the blood test, i ate in the car while driving there, tuna, rice cakes, apple.

The result was glucose, 54, insulin 58. i was pretty sure that was suggestive of insulinoma. I saw the gastro doc again last week and he said it looked like i probably had an insulinoma. Tomorrow i'm going to see then new endocrinologist. So, i'm expecting to be told to have the 72 hour fast but i will ask that i can have it as an outpatient, i already know that my glucose will be in the 30s every morning without fail, it was 28 a couple of days ago, but close enough. About once a month it makes it into the 40s. So, i expect i can go to one of those ambulatory outpatient centers as soon as i get up in the morning and i can have them draw the blood and they will see the glucose is 30 something and they will take the C peptide and insulin and proinsulin and that one where they rule out that you are doing it to yourself by taking diabetic medication, sulfanourea or something like that. They can take all that, and then they can give me dextrose and send me home. That's what i want to do. If they decide i have insulinoma, i will go to the guy the gastro doc referred me to for an endo ultrasound, hope it will locate the tumor. I will have the surgery done where there are skilled people who can do the IOUS. Yes, i've been reading and learning more than i ever wanted to know about insulinomas. Bottom line in answer t your questions--i think just the insulin and glucose tests together, showing low glucose not suppressing insulin, where insulin is high, is pretty diagnostic of insulinoma though i guess other stuff has to be done. How i feel is, i would like to feel good again, i would like to have energy, not feel groggy, not feel kind of fragile. And certainly not to wake up laying on the floor with no idea how i got there. i live alone.

My only child, my daughter, and my son in law, are about to have their first baby, due 7/2. They are about 500 miles away and i am going to go to where they are, to be there for this event. I sure wish the baby wasn't coming for about 3 or 4 more months so i could take care of the insulinoma but instead i will put the insulinoma on hold until after the baby is born and i get back here.

I sure hope you are doing well.
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replied April 1st, 2018
Hi jaw444,
Your story sounds all to familiar. I am at the beginning of my diagnosis for an insulinoma and am desperately trying to find info and people to talk with that have had similar experiences. I have an MRI scheduled for Tuesday, already had the 72 hr fast. How are you doing now? I see this post was from several yrs ago but am hoping this will reach you.
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