A friend of mine, another roux en y'er, just got back from her testing for her hypoglycemia issues, and it's confirmed: She's got nesidioblastosis, and she's scheduled for a partial pancreactomy next week.
"Hyperinsulinism is a disorder in which the insulin cells of the pancreas (beta cells) secrete too much insulin and at the wrong time. Excess insulin causes low blood sugar. Ordinarily, beta cells secrete just enough insulin to keep the blood sugar normal. With HI, the secretion of insulin is not properly regulated, causing excess insulin secretion and low blood sugar.
Normal blood sugar is 70 - 100 mg/dL. Anything less than 60 mg/dL is low, although severe symptoms due to hypoglycemia are not likely unless the blood sugar is below 50 mg/dL. Prolonged or severe low blood sugar can cause seizures or permanent brain damage."
That's a partial explanation for babies that are BORN with this disorder - it's not something that adults generally ever have - unless they were born with it. It's a genetic disorder, except in the cases of the adults that are popping up that happened to have roux-en-y gastric bypass, because this unique metabolism situation triggers hyperinsulinism in some of us.
She and I have been commiserating via MySpace messages - because we have the same symptoms - she says the way I describe it is much more severe. The diagnosis follows a calcium stimulation test - among other things - but I'm waiting to hear back from her about how it all went, and if the surgery is "voluntary," and what happens next.
Update: She says the docs have told her that it's not going to go away, it's only going to get worse, so she can choose to wait until it does, or deal with it now.
..and then of course, I'm wondering:
Do I want to get tested - and if I do - and it turned out that, "Gee, you do have this, Beth," wouldn't it be funny because I self-diagnosed what, more than two years ago?
The next step is the invasive testing, IF dietary changes and carb-blocker pills didn't work, or the hypoglycemia becomes worse. I do not know if it will increase.
At this point, it's pretty severe, and I eat around it, planning not to eat food that will make me drop unless I am "supervised." If I eat a normal diet, like any other typical post-RNY'er, I'm crashing all day long.
Normal isn't ever going to work. But, life without parts of a pancreas, like 70% of one? Is that normal?
