Grave's Disease: A Personal Story
July 11, 2013

Grave’s Disease: A Personal Story

I have Grave’s disease. It is an auto-immune thyroid disease. Basically, it put my thyroid gland on overdrive. The thyroid gland is a small area of tissue next to the wind pipe that you probably don’t think much about until it starts misbehaving. The purpose of the thyroid is to regulate metabolism. The thyroid hormones, T4 and T3, tell every cell in your body to produce protein and use oxygen as needed. The pituitary gland gives instructions to the thyroid about how much of these hormones are needed. The need increases with exertion, stress, fear and illness.

Grave’s disease occurs when an antibody mimics the signals usually given by the pituitary, causing it to over-produce the thyroid hormone. My body thought it had to metabolize at a high rate all the time, every day. In other words, I became hyperthyroid. This took a toll on every cell I have. The cells never get to slow down, even during sleep. There are lots of symptoms: rapid heartbeat, excess sweating, weight loss, fatigue, restlessness, hand tremor, and menstrual changes. My period just stopped and never came back. I became weaker as I lost large muscle mass. The Grave’s disease also affected my eyes. Fatty deposits behind the eyes built up and pushed the eyeball forward. You could see the whites of my eyes all of the way around the iris. Fortunately, this did not progress any farther and later subsided. In extreme cases, it can cause your eyes to bulge completely out of their orbits. I was more freaked out by that idea than anything else.

There are two ways to treat Grave’s disease. One is to take anti-thyroid medication. This method has some drawbacks. The meds have to be taken in precisely timed doses several times a day and they can have severe side effects. Sometimes, after about a year or so on these medications, the thyroid might return to normal, sometimes not.

I was strongly encouraged to take the second alternative. This one involves basically killing the thyroid gland by swallowing a pill of radioactive iodine. I was a bit anxious about that idea.

When I went in to take this pill, I found that it comes in a lead-lined container and the doctor wouldn’t touch it. He dropped it in my hand and told me to swallow it. I was advised to avoid small children and pregnant women for several days. I was assured that the radiation only affects the thyroid gland because the thyroid needs the iodine to function and would absorb the radiation. Any extra would be excreted in my urine. Sure enough, I didn’t have any lasting effects from the procedure except for becoming hypothyroid (too little thyroid hormone,) but that was expected. Hypothyroidism only requires one pill a day and is less likely to cause problems once it is regulated.

There was one other event on the way from being hyper to being hypo. It takes several weeks for the thyroid gland to quit producing hormones completely, and during that time, for some reason that I don’t completely understand, I became more hyperthyroid than ever. I was given beta blockers for heart palpitations, but the other symptoms were miserable. I was so weak that I couldn’t climb stairs or lift a gallon milk carton. One evening I was lying on my bed and there was a wrinkle in the sheet under my leg. It gave me a horrible leg cramp. That period finally ended, and things got much better, though getting the whole thing regulated took much longer than it should have. And that is a story for another day.

Image Credit: Jonathan Trobe, M.D. – University of Michigan Kellogg Eye Center

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