Hypoglycemia events from unstable insulin levels

[Bubbe]

I have confirmed hypoglycemic events; glucose below 70, even to 30.  Begins with some visual disturbance I can't describe, then I get shaky, sweat, heart pounds as sugar falls.  Glucose intake helps quickly.  Glucose tolerance test showed erratic insulin, irrelevant to the glucose level.  Began about 10 months post gastric bypass surgery, but father had similar episodes and older sister is hypoglycemic.  Several months ago, reports published that many post bypass Sx people have benign pancreatic tumors causing hypoglycemia.  Seems, though, no one yet sure if those tumors should be removed -- it corrects hyppoglycemia, but no one knows how long it will be before more grow.  My doctors feel it best to try to treat the unstable insulin, but the endocrinologist admits he is going through uncharted territory and merely "guessing" what to do.  I was put on Metformin (Glucophage) 500 mg. a day gradually increased to 1500 now.  I still get events, maybe a little less, but they are not predictable and never were -- I cannot relate them to diet, sweets, lack of sweets.

Has anyone else had this history or does anyone have an idea how to handle/treat it?

[drifter_c]

Hi bubbe, I have a genetic defect in a gene called hadh which is part of fat metabolism pathways. It causes unstable insulin when you eat too much protein. It turns on insulin but then it doesn't turn off properly and stays high for too long causing hypoglycemia. I kept getting random hypoglycemic episodes but didn't know why. Now I eat a low protein low fat diet and am doing much better. Maybe it would be worth trying it, with your doctor's input. I don't have the other problems you mentioned so maybe it is irrelevant.

[JDRF-Team-JW]

Hi Bubbe,

I am a volunteer who has lived with Type I diabetes for 11 years. Being a diabetic I sure know what it feels like to experience hypoglycemic episodes and I'm sorry you're going through these, especially since you say you can't predict them or relate them to anything you might be doing. That must be frustrating.

I can't offer any medical advice and I haven't been through what you have, but I've done a little research on pancreatic tumors, as they relate to hypoglycemia, and below are excerpts from a couple of websites, which I would encorage you to look at:

http://endocrine.niddk.nih.gov/pubs/men1/men1.htm
"Occasionally, a person who has MEN1 (Multiple Endocrine Neoplasia Type 1) develops an islet tumor of the pancreas which secretes high levels of pancreatic hormones other than gastrin. Insulinomas, for example, produce too much insulin, causing serious low blood sugar, or hypoglycemia. Pancreatic tumors that secrete too much glucagon or somatostatin can cause diabetes, and too much vasoactive intestinal peptide can cause watery diarrhea."

http://www.pancreatica.org/faq.html
"The most common functioning pancreatic endocrine tumors are insulinomas followed by gastrinomas, glucagonomas and VIPomas, respectively.
Insulinomas are islet cell tumors which secrete an excess of (predominantly) insulin. These tumors will typically first present symptoms between the ages of 40 and 50, are more common among women and tend to be small, solitary tumors located in the pancreas itself. The clinical features of this tumor are related to the effects of insulin-and thus primarily demonstrate symptoms related to hypoglycemia which are relieved by food intake. Other general symptoms include episodic sweating, tremor and rapid heart rate, as well as hunger, nausea, weight gain, and sometimes even central nervous system symptoms (including rarely, seizures)."

Perhaps these websites can help you find more information on how to deal with this condition.
I also wonder if you experience any hyperglycemic episodes (where you suger rises above the normal range)? I was also under the impression that Glucophage (I was on it by mistake for a while -wasn't treated by an endo at that time) was for lowering sugars in Type II diabetics. Has your doctor explained to you how is the drug helping you? I know it's frustrating when the doctors merely seem to guess how to treat us but sometimes that's necessary to try and find a solution. However, if this trial period is not giving you the results you need I would speak to your doctor or get a second opinion. Have doctors actually diagnosed you with pancreatic tumors? Or is it one of the possibilites your doctor is exploring in order to find a cause of your hypoglycemia?

I hope you feel better soon!