MELISSA'S STORY

When Melissa, at twenty-five, started forgetting things and gaining weight, she attributed it to the stress of getting a divorce.

I thought I was going nuts and needed to see a shrink, but one day I noticed that my right eye was swelling. I also had double vision. I went to an optometrist. He said, "You might have a brain tumor," and walked out of the room! I was in shock. He sent me to an ophthalmologist who did a MRI to rule out a brain tumor. He said, "I think you have Graves' disease," and referred me to an endocrinologist. It was the end of 1994. Instead of radioactive iodine, he opted for PTU [an antithyroid drug]. He explained that I could get a sore throat from it. He also said I had both Graves' disease and Hashimoto's thyroiditis.

After her doctor doubled her dosage of PTU to treat her Graves' disease, Melissa developed a sore throat and returned to her endocrinologist.

I thought I had the flu, but he said, "No, you have agranulocytosis." My white blood count was 600, and I had a 104° fever. He wrote the diagnosis down on a piece of paper and said that I needed to see my family doctor.

I went home and called my family doctor, but I couldn't get an appointment right away. Two or three days later, when I went to see him, he said, "This can't be right; you'd be dead!" But he didn't do blood work. He said it must be the flu and gave me an antibiotic and sent me home.

While I was shopping for cold medicine in K-Mart, I almost passed out. My son was with me, so I took him to his dad's and went home and got in bed.

When my fever got to 105°, I went to the emergency room, but they didn't know what to do. My endocrinologist was at a conference, out of reach. I stayed in the hospital four or five days. I got blisters in my mouth and nose and my eyes. It was awful! I think they had me on about ten antibiotics.

When I went home, I was feeling weak and not sleeping well at night. At first, I was afraid if I went to sleep, I wouldn't wake up. Then I just couldn't sleep. It was hard; I couldn't really care for my son who was three years old at the time. He had to stay with my mother. I missed work for two months.

Unhappy with her endocrinologist, Melissa asked her family doctor to refer her to someone else. After explaining the various treatment options to Melissa, her new endocrinologist recommended radioactive iodine treatment. In January of 1996, Melissa took 15 millicuries of radioactive iodine to treat her Graves' disease. By April of that year, she was hypothyroid and began taking levothyroxine.

I wish I had opted for iodine the first time. I think I would have if I had really been educated about the options. I was scared about it at first; I thought my hair would fall out or something.

I don't remember having any symptoms of hypo­thyroidism after taking the radioactive iodine, but [my endocrinologist] monitored my blood every month. Within maybe three months, I started taking [levothyroxine].

Several years after her successful treatment, Melissa remarried and became pregnant.

I had no trouble getting pregnant. I think the first time we tried I got pregnant! We had to increase my [levothyroxine] several times during the pregnancy because my thyroid levels fluctuated. I was concerned that the [levothyroxine] would affect the baby, but a specialist did a sonogram on the baby's thyroid and said he was fine.

A month before the baby was born, my father died, and, a month after the baby was born, I had gallbladder surgery. A month after my surgery, my grandfather passed away. There was a lot of stress in my life. Any­way, I don't know why-I just stopped taking my [levothyroxine] .

When Melissa went to her endocrinologist for her routine follow-up visit, her TSH was very high, over 150 mUlL, and her free T4 was very low, less than 0.2 ngldL (nanograms per deciliter).

When I went back to see [my endocrinologist], all the tests came back out of whack, but I felt fine. He said my TSH was really high. I started taking [levothyroxine] again because of the blood work. I didn't feel any better afterwards; I felt the same.

Before all this, I didn't know that anybody in my family had thyroid disease. Then I found out that a year before I was diagnosed, a male cousin had a goiter removed. And my grandmother said, "Well, you know your granddaddy's sister had thyroid problems all her life."

My advice ... is don't go to just any Joe Blow on your HMO-go to a highly recommended doctor. Pay the extra; it's worth it.

Just like Melissa, many hyperthyroid patients eventually become hypothyroid. Even though Melissa had a dramatic encounter with hyperthyroidism, her story offers two important lessons about hypothy­roidism. First, if a hypothyroid patient stops taking her levothyroxine, she will become hypothyroid again. Second, a patient can have a very high TSH level and not have many symptoms of hypothyroidism. The converse is also true-a patient can have a modestly elevated TSH level and have many symptoms of hypothyroidism. In either case, a patient should not stop taking levothyroxine without her doctor's recommendation.