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Friday, October 8, 2010

Symlin: Yes, I'm finally writing about it!

So I promised to write about the drug Symlin and now I'm actually gonna do it!

When I was diagnosed with diabetes no one told me "be careful about how much you eat because you don't know when you're full anymore." I was 9 and that was ok because my little 9 year old stomach wasn't big enough for the amount of food I had to eat anyway and I was underweight from that whole being an untreated diabetic up until that point. However, when I was 12 and got my insulin pump I was told "you can pretty much eat whatever you want now." That is the WRONG thing to say to someone who's had precisely prescribed meals for years.

For the next several years I proceeded to eat whatever I wanted in whatever AMOUNT that I wanted. No one told me about portion control and diets only ever talked about cutting fat, never caloric intake and I tried a lot of them. They certainly didn't say "Hey, Hey you...You know that hormone that tells your brain when your stomach is full? Yeah, you don't HAVE that!"

"Wait, what? I don't have that? Why don't I have that? Why in the hell didn't anyone TELL me that!"

That was my response in late 2007 when the wonderful endocrinologist at UNC Chapel Hill told me that diabetics do not make the hormone amylin. Amylin is a hormone that your pancreas secretes with insulin when you eat. Diabetics don't secrete insulin...so no amylin. Stupid immune system.

This was discovered LONG ago in the grand scheme of my life (and way before I became diabetic) so why in the world did no one tell me? Probably because there was nothing to be done about it and it wasn't actually a necessary hormone. I would have explained why I went from being reasonably thin to slightly chubby and struggling to stay just that after I got my pump, though.  In 2005 somebody started making Symlin (synthetic amylin) but I wasn't told about it then, either.

I think a lot of people don't know about Symlin because doctors don't think to inform their patients about yet another thing they have to stab themselves with. My doctor at home was actually surprised that I started taking it (it was prescribed by the school endocrinologist) because it was an injected medication and she thought I wouldn't want something like that. When I had asked Dr. Vimmerstedt about my weight loss efforts and how they always seem to be thwarted she told me about it, though. If there was anything I was willing to try, it was something to help me get thinner.

Sylim has to be taken with meals in shot form. When you first start it, you get really nauseated and you have to slowly step up your dose. Your body builds up a tolerance to it. All of that was worth having control over my eating.  I am now only hungry when I'm hungry and when I eat enough to be worth taking my Symlin (you have to eat a certain amount to take it) I don't feel like I could eat another 10 servings of whatever I'm eating if only my stomach would stretch that much.

I used to only know I was full when I had eaten so much it hurt. I'm very willing to be prodded with more things if it means I can be more normal. Now that makes very little sense: why would it be normal to have to stick needles in yourself all the time? The normality that I'm looking for is function normality. I don't want to feel sick. I don't want to leap over hurdles to control my eating. I want my body to function as close to a regular human's as possible.

I mean I'd rather I have the metabolism of a 15 year old boy so I could be skinny with no effort but I'll take what I can get. Super skinny is probably over-rated, anyway.

2 comments:

  1. Funny, I've been diabetic for over 20 years now, and I didn't know about amylin. I'd heard about Symlin once in passing, but didn't know what it did. So it's not just you. And yes, super skinny is WAY over rated. You want to look good in a dress, not like a broom with a dress hanging on it ;-) I met you and your BF a couple Sundays ago, and Heather told me you two always come in after I leave. I'll hang out a bit longer tomorrow and maybe we can chat, as I now have a couple years of experience with my CGM. Glad you love Dexter!

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  2. Yeah...amylin is way more important that I think doctors realize. It's made my quality of life better. Part of me will always want to be a stick figure but the non-crazy version of me just wants to lose 15 pounds and still look like me. It's hard to push the crazy out, though.

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