My story with diabetes is tangled, complicated, and not over yet. It started with my father being diagnosed with reactive hypoglycemia years ago--probably about nine or ten. Then I was diagnosed with Hashimoto's Disease when I was fourteen, which forced me to go see an endocrinologist.
The pediatric endocrinologist I saw denied my reactive hypoglycemia symptoms, insisting that if I had it, I'd have fainted several times. I didn't like him in general, and I was very, very happy when he stopped taking my insurance a year later.
A year after that, when I was sixteen, I went to see my father's endocrinologist. My father pushed me to tell him about my symptoms (shaking, irritability, starving hunger, severe headaches, whenever I hadn't eaten for a few hours), and he offered me a meter. I documented my blood sugars whenever I felt low, and three months later he sent me for an oral glucose tolerance test.
The OGTT didn't show anything really significant, except a high fasting insulin level (which I'm not entirely sure was accurate). My doctor diagnosed me with reactive hypoglycemia, and that was, supposedly, that.
A few months later, I started seeing numbers in the 140's and 150's in the week before my period. These were accompanied by paralyzing fatigue and headaches, as well as a feeling of just not feeling well. My endocrinologist assured me that they were hormone-induced.
At that point, the worst experience I'd had was a 160 at a school weekend retreat. I missed some of the program on Friday night--specifically meant for seniors, which I was. And I was 60 an hour later. Needless to say, I felt awful that night.
This continued through my first year of college. I also had extremely stubborn lows during finals that year. My endocrinologist tried to convince me that I had insulin resistance that May. I was 18, 5'2", 142 pounds. Not ideal, but certainly not a body-type (or lifestyle) for insulin resistance. (I walked two miles a day, minimum, just for my walk to and from school.) I asked for, and received, antibody tests for type 1 diabetes. They came back negative.
The next year, I started seeing an allergist/asthma specialist. She tried to control my asthma with steroid inhalers, which didn't work all that well.
I don't remember which inhaler did it, but one of them drove my blood sugars up, up, up. The day I hit 200 in class from one slice of thin-crusted whole wheat pizza, I had enough. (I fell asleep in class and was 50 a half hour later.)
I called my allergist, who told me to call my endocrinologist. He put me on Januvia, which evened out my blood sugars. No more highs, and, oddly, no more lows.
About a month and a half later, my new pulmonologist (who my allergist recommended I see), pulled me off the steroids so she could run a test called a Methacholine challenge, which is used to prove or disprove a diagnosis of asthma. When I went off the steroids, I went off the Januvia.
A month later, I started seeing highs like I'd never seen before. Nearly everything I ate sent me above 150. Even though I came down within two hours (usually), the damage was done and I'd often be out of commission for the rest of the day.
After a full summer of this, I saw my endocrinologist in October. After seeing my high c-peptide, he told me that he thought I had an enzyme deficiency and told me to stop eating grains.
So I did. And even after stopping all grains, I still had problems. In fact, the more carbs I cut out of my diet, the more I had to cut out. It came to the point where the only carbs I could eat were uncooked fruit, non-starchy vegetables, and milk. And even then, I needed to start cutting out milk.
Highs at this point started within ten minutes of eating and lasted for three to four hours. During the first month of that spring semester, I hardly got any schoolwork done because I was always so tired and feeling so sick. When I saw my endocrinologist that February, he finally, finally stuck me on Metformin.
The Met 500mg worked well for the first week. Then I started seeing highs again, though I'd stopped feeling them. I was so happy about that that I didn't care what numbers I was seeing.
When I started feeling highs again, I called my endo. He pushed the Met up to 500mg twice a day. During that phone call, I asked him if I was the only one who thought this was strange. He asked me if I'd ever heard of a disorder called MODY. I had, but I let him explain it, anyway.
The last time I saw him, I asked him to re-run the antibody tests. He did, and, of course, they were negative. He also pushed the Met up to 500mg three times day.
I'm back to pushing for MODY testing. My insurance claims they'll cover it if there's pre-authorization and the medical necessity for it. I tried to get tested through the Kovler Diabetes Center in Chicago, which runs a MODY research center. They'll test you for free if you fit certain guidelines. They didn't want to test me because I don't have a linear three-generation history of diabetes.
I called my endocrinologist's office today for the pre-authorization. Is it sad that I'd rather battle it out with my insurance company myself than let me endo's office do it? Because I don't really trust them to get it done and get it done right.
I'll keep you updated. This feels like it'll be a long haul.
"You feel like a candle in a hurricane/ Just like a picture with a broken frame...You get mad you get strong/ Wipe your hands shake it off/ Then you stand" ~Rascal Flatts
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