Thursday, November 14, 2013

The Girl Who Was Hungry

A little less than two years ago, my sister came to visit. We are both type 1 diabetics, and there's a sort of sad hilarity in our conversations at dinner.

"I'm out of reservoirs for my pump. You have one I can borrow? I need tubing, too. And maybe an insertion set if you can spare one."

"How many carbs do you think are on that plate? I bet I can calculate the carbs on this table faster than you."

"Yay! Food with lots of fat! Fat slows the absorption of carbs! Fat is a diabetic's best friend!"

"This entire side of my abdomen is now over-saturated. I've run out of places to put the needles that will still absorb; I think I'm going to have to start sticking the needles in my feet."

"Your pump is purple! That is so cool!"

"Your pump is blue! I love it!"

"Did you hear about that celebrity that was diagnosed with diabetes and claimed it was type 1 and that she cured herself by not eating sugar? Bahahahaha!!!!"

Yeah. It's pretty hilarious. Sometimes it's like a code no one else at the table gets.

Two years ago, though, she pulled out a new drug to shoot up before dinner. Something called Symlin that her endocrinologist told her every T1D should take now. I'd never heard of it.

"What's it for?"

"It makes me feel full. I never felt full before. I used to just stop eating because I saw other people stop."

That was the oddest thing I'd ever heard. She never felt full? How could you not feel full?

After she left, her words stuck in my head. In the afternoons, I realized I was always famished. Like eat a horse and the saddle with it kind of hungry. I'd eat lunch, and feel like I'd eaten nothing. The entire day from lunch to dinner was a struggle not to shove everything in the house into my mouth. I'd been that way for so long, I thought that was normal. Wasn't that everyone's afternoon? Isn't that what vending machines in office buildings are for?

But now I was thinking about it. And I realized that when I put dinner on my plate, it had nothing to do with how hungry I was, but how much I thought a reasonable portion should be. I didn't get seconds most of the time because I didn't think I should. But I rarely left the table full. I mostly left the table thinking I could eat an entire new plate of dinner if someone placed it in front of me. Or not. But probably I could if it were there.

And slowly I realized... I was hungry all the time. And I realized that maybe wasn't how everyone else felt all the time.

It's easy to think we are always at the pinnacle of science and medicine. Sure, we don't have a cure for many diseases, but gosh look how far we've come! Look how much we know! I thought we knew everything about T1D except how to cure it. In reality, we are still, every day, learning things.

Just a decade ago, the thought was to cure T1 diabetes with pancreatic transplants. If diabetes is caused by the pancreas breaking down and not working, you just replace it, right? When the transplanted pancreases also stopped working, some smart scientist discovered that the pancreas doesn't just break down... it is attacked by a person's own immune system. The immune system, for some unknown yet reason, sees the organ as a foreign object and attacks it. Put in another one, and it'll attack that, too. The problem isn't even the pancreas... the problem, it turns out, is the immune system.

In light of this sudden awareness that I was hungry all the time, I began researching this new drug my sister was taking, and I found out something mind-blowing. A scant few years ago, scientists discovered that the pancreas, contrary to popular belief, actually makes TWO hormones... insulin, and something called amylin. This second hormone, amylin, is the hormone that helps your body use the insulin it produces better and more effectively. It keeps the liver from dumping excess sugar into the bloodstream and helps keep the glucose from the digestive track from building up in the blood. Beyond that, though, it slows the digestion of your food and sends the signal to the brain that you feel full.

Mind. Blown.

When type ones lose their beta cells, they not only lose the ability to produce insulin, they lose the amylin as well, and over time, like a frog in cold water set to boiling, you forget what it feels like to feel full. Food goes in the mouth and through the stomach like water, barely stopping to fill it up. You brain doesn't get the signal that your stomach is full. And all that glucose from the food (not just sugar foods, but everything from milk to vegetables have glucose in them) rushes straight into the bloodstream, where the insulin cannot possible work fast enough to catch up.

This is all so complicated. Much more complicated than it sounds, because everything is connected.

Type 1s don't make insulin, so they have to take it in the form of shots (or through a pump). That insulin, over time, makes many diabetics gain weight. (This is controversial, unfortunately. Science has shown it to be true, just ask the NIH, but insulin manufacturers and many doctors and websites resist this idea.) The more weight you have, the more insulin your body tends to need. The more insulin you take, the more weight you gain. It is a vicious circle that I've found screamingly, cryingly, depressingly true.

Add into this not being able to feel like you've gotten enough to eat.

Over the past five years, despite a five-day-a-week gym membership for two years, despite walking miles a day for the others, despite kettlebells and zumba and small-portioned meals, my weight kept going up.

And here... suddenly here is the key.

A synthetic hormone called symlin that mimics your natural amylin, that will make me feel full, slow the glucose into the bloodstream so that the insulin I take has time to work, makes the insulin work better and blocks the liver from dumping glucose so that I take less insulin, so that I can finally lose weight, so that my blood sugars are more even and low.

It sounded like a miracle.

Do I hear angels singing?

I began hounding my endocrinologist. My endocrinologist was frustratingly resistant to symlin. He didn't think it was effective. He didn't think it worked. He thought it was far too expensive. He told me if I wanted to lose weight, I should walk more. He told me my blood sugar averages were fine, even though they'd gone up above the acceptable range. He disregarded my research. He wouldn't listen to my reasons. He shooed me out the door.

This went on for a year. Finally, last May, I parked myself in the chair and said, "I want Symlin. It is my money, and my body. I want the chance to have what your body makes naturally. I think I should have the chance to at least try it, and see if it works. And I'm not leaving until I get it."

So I got a prescription. And a healthy dose of skepticism.

Three months later I went back. I'd cut my insulin use by a whopping 30%. My blood glucose averages (taken by a test called an HbA1C), which had peaked at 7.5 - a whole point above what is considered decent control - were down to a near-non-diabetic 5.5. I'd dropped 17 pounds. My doctor was speechless.

I feel fantastic for the first time in years. I have energy. I am not falling asleep at 2pm every day in the middle of work or struggling to stay awake while driving. I hardly ever have to correct a high blood sugar reading.

I am not hungry. I didn't even remember what not hungry felt like.

I feel like... like me.

Today is World Diabetes Day. It is Type 1 Diabetes Day. We, as type 1s, are suppose to help others know what it is like living with diabetes.

Yes, it is shots. Yes, it is counting carbohydrates and being careful of what we eat. Yes, it is the danger of heart disease and kidney failure and amputations and blindness, but less and less of that as knowledge increases and medicine catches up. Yes, it is pricking my fingers ten times a day to check my blood sugar. It is all of this.

It can be feeling hungry. All the time. Not because we have no self-control. Not because we crave the foods we shouldn't have. It is because we don't have the hormone you have that tells us we are full. It's because we don't have the hormone that let's our stomachs fill up as we are eating.

I may not be a celebrity who is able to somehow, miraculously, reverse the damage done to the pancreas and make myself not diabetic anymore. But a little science on my side goes a long way to making me feel like I am.


  1. This is all super fascinating, but all I'm thinking as I read this is CRAP! I just finished final edits w/ my Type 1 diabetic girl and can't USE THIS!!! Also. I just learned a way lot :-D THX!!!

    1. Ha! I didn't know any of this when I wrote my book either. In fact, I don't think Symlin was even on the market yet. I've talked to other diabetics and they don't all have this problem. Of course, when my sister told me, I didn't know I had the problem. Unlike insulin, amylin is something you can get used to not having. You don't need it to survive, and the disappearance of it is gradual, so many people don't notice.

      This was a lot of stuff to wade through. Thanks for sticking with it. :) And I can't wait to read your book. :)

  2. I have two reactions to this post :( and :) . I'm so glad you are feeling better and sad you have to deal with all of that.

    Diabetes better watch its back that it has such a strong writer working against it. :)

    1. Ha! Not sure I'm much a force of nature against it. :)

      I'm all for education, for "awareness," because I hope it makes us more compassionate with others, but I know there are many more things out there people are living with that are worse than this. This is small potatoes. An inconvenience. I'll take that over most other people's struggles any day. :)

  3. Mind. Blown.

    Yep. So much we have yet to learn!!!

    1. It's crazy, isn't it? What we know about anything in this world is just a pinprick of what there is to know. I actually find that... heartening. :)

  4. This blog post is excellent probably because of how well the subject was developped. I like some of the comments too though I would prefer we all stay on the suject in order add value to the subject!
    Quick House Sale San Antonio

  5. Good for you being your own advocate, Heidi! That's an awesome story. My mom is a Type 2 diabetic--but this drug is only for Type 1, right?

    1. So far it is only approved for type 1, but because it is so effective in helping curb appetites, I think the company is in the process of trying to also get it approved for weight loss. That would be the only real help to a type 2, if they need the weight loss. Otherwise, since a type 2 has a working pancreas, they already make the hormone. It would be interesting to know if it would help them use the insulin they already have, though.