Here is the promised Graves Disease update. The last time I posted about Graves Disease was just after I was diagnosed in June. You can find that post here.
The medical aspect:
Today I went to my second Endocrinologist appointment at University of Chicago Medical Center. When I came back from Israel, my internist in Madison recommended that I start seeing an endocrinologist in Chicago, because of all the bloodwork that is needed to manage Graves. So, in September, I met with the Endo Dr. Before meeting with her, I was all prepared (mentally at least) to consider the prospect of Radioactive Iodine Therapy. If this therapy was going to be done, it needed to be done before school started, since it really will put your body back into hyperthyroidism and afterwards, into hypothyroidism. Since, Graves Disease made me feel completely mentally dysfunctional I didn’t want that to hang over my last year at University of Chicago. But, I haven’t had the therapy. In fact, the endocrinologist was not enthusiastic about trying the therapy as a first option.
The first thing the endo doctor wanted to try was to slowly lower my does of methimazole, which is a thyroid production blocker. In fact, she wants to see that I can be either stabilized at the lowest possible dose of the medication or be put into remission. If I am able to reduce my medication to that level (it will be reduced a little bit every 2 months, after checking my thyroid levels), then I don’t have to have the therapy. At my first appointment, my levels were still not right, and I was told to continue on my initial dosage. I was told to go off the beta blocker, which was preventing the spread of the thyroid hormones into my tissue AND keeping the adrenaline that the thyroid creates from making my heart pump like I was running a marathon ALL the time. Going off the beta blocker was fine, and I have suffered no ill effects. During my visit today, I was told that I can reduce my dosage (of the methimazole) by half a pill. I will go back into the doctor’s office the first week in January, I’ll let you know what happens. This slow reduction will take (if successful) about 18 months.
The psychological aspect:
I feel so much better than I did last winter and spring. I have energy until much later at night, and can focus much much better. I am beginning to get better grades in my classes, too. I wrote a paper and turned it in last week. This was the first paper that I got back since last fall that didn’t have the words “this paper is disorganized” in the comments. That is a major positive change.
While I feel better, the idea that I have an auto-immune disease has taken some getting used to. It was such a crazy, quick diagnosis story, too. And having to get diagnosed, scanned, and medicated before the trip to Israel made my head spin. In fact, I’m pretty sure that I spent most of the time I was in Israel getting used to the idea instead of enjoying Israel. I know that my body was getting used to the medicine. It is said that it takes about 6 weeks for your body to adjust to new hormone levels. Which was about the whole time I was in Israel. The implications of the diagnosis are huge to me. Even though allergies were a pre-existing condition, they were manageable, even with a rider. But, with the way insurance is now, there is no way I would even be able to buy private affordable health insurance. (so call your congress representatives and ask them to support the public option!) Even now, on our mediocre insurance plan at school, I have a lot of medical bills to pay. I was not prepared for these new bills, which are replacing fun in the budget. The cost of blood tests and doctor’s visits is deep, especially to a grad student. This disease has increased the responsibility I have to myself. I’m grateful, though, that I was diagnosed this last June and that this disease, while costly and annoying, is at least livable and manageable.
