Gulp.

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?

Comments

[EGSuzie]

Whoa! That is scary...you are exhibiting much worse symptoms than she, and yet they still aren't sure what's wrong with you? Would you consider a pancreatectomy if it seemed prudent?
On another note...it's pretty cool that I can read that study and know exactly what islets and beta cells are...we're studying that right now in A&P class. If you can understand all of that without formal education...maybe you missed your calling. Come on...wanna be a nurse like me?? ;o)

[jennifer]

What are the side effects of life without the pancreas??
Didn't I read somewhere that the effects may return down the line even after it was removed??
This is crazy but how much longer can you go on with the roller coaster life??
Oh and another 20 questions-
Does she also share the seizure like symptoms or is that a whole separate thing??

[MM]

I'll respond more tomorrow - but the seizures are supposedly entirely separate but coincidentally happening at the same time.

[Annie C]

I have to ask, have you ever read this blog?

http://junkfoodscience.blogspot.com/

[MM]

Yep. I link to her in the sidebar. But, once I copied parts of an article of hers I really enjoyed and she gave me a serious hand-slapping, so I no longer actively look at her content.

[Sharon]

I've got to say if I was living with what you are - I would get tested. At the very least find out what would lie ahead - because I don't know how you are holding up in your current state (and I say that with love - I give you a lot of credit, I would have freaked the hell out long before this)

[MM]

Sharon,

Freaked out has happened, but there really hasn't been anything to do about it - but wait - and delay.

[MM]

procrastinate...

[John Fit]

I love where you're going with this. Keeping a Journal about your weight loss and progression is awesome. If you want any helpful tips make sure you check out my site. I'd love to help you out with keeping on track.

Consider me your online trainer.

John Fit

[Sarah]

Lol at John Fit spam. I don't think a personal trainer is going to help you with this!!
Keep on swimming :)

[MM]

I went to delete it - and it was too funny. John Fit To The Rescue!

[atyourcervix]

I wonder - what happens after you have 70% of your pancreas removed? Does it fully "fix" the hyperinsulinism problem? Or does the remaining insulin producing cells in the pancreas go into overdrive to produce even MORE insulin? What happens if they take out too much of the pancreas, and it doesn't produce enough insulin.....because then you become diabetic, and need to give yourself insulin injections....??? Just some things that ran through my mind.

[MM]

Supposedly - most folks do not become insulin dependent? But....

[Gwen]

I'm wondering, what happens if a person has partial pancreatectomy and regains weight later on? (I am NOT suggesting this will happen to you or your friend--just the scientist in me thinking.) My general understanding of this condition is that our obese bodies required more insulin than the post-WLS body does (and perhaps, produced more in a pre-diabetic, metabolic syndrome like state) and now can't make the adjustment. (I might be wrong with that simplified understanding.) So if one were to regain weight and increase their insulin demands again--does the resected pancreas have the ability to adjust? I'm just wondering. You've done so much reading on this, maybe you've run across this somewhere.