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Coping With Graves' Disease Lasts a Lifetime

By Dennis Thompson
HealthDay Reporter

FRIDAY, April 8 (HealthDay News) -- At first, everyone thought that Sasha Asumaa's problems were those of a typical teenage girl.

The 16-year-old was always tired and had trouble sleeping. She was moody and grumpy. Teenage stuff.

Except she also felt sick, like she had the flu all the time. She threw up nearly every morning before she went to school.

And she had shingles. "Only old people get that," said Asumaa, now in her mid-30s and living in Marietta, Ga. "Just weird stuff." Her liver counts were so bad, she said, that doctors figured her for a drug and alcohol addict. And her heart raced so much that her heart rate would be 130 beats a minute when she was lying in bed.

She was tested for mononucleosis. She was tested for laryngitis. Nothing came back positive. Then her mother urged their family doctor to test her daughter for thyroid, noting that problems with the gland ran in her family.

"They tested it -- and, of course, it was through the roof," Asumaa recalls. "He said, 'You have a thyroid problem. You need to go see an endocrinologist.'"

Asumaa said she waited three months to see the specialist recommended by her doctor, but when she did, the endocrinologist quickly determined that she had Graves' disease, a type of hyperthyroidism.

"I started taking thyroid-blocking medication," she said. "It worked somewhat, but I didn't take it like I was supposed to. I was 18. I had no idea what I was dealing with. I didn't know how it was affecting my body."

Doctors urged Asumaa to undergo radioactive iodine treatment, which basically destroys the thyroid. "Even at 18, I was like, that's pretty extreme," she said. "I didn't want to just zap my thyroid and then have to take a thyroid pill for the rest of my life."

But after doing some research, Asumaa came to the conclusion that radioactive iodine would be the best thing for her.

"Basically it turned out that no matter what I picked, I was going to have to take something for the rest of my life, so I went for the easier option and took the radioactive iodine," she said.

She recalled with horror the way the radioactive iodine treatment was administered: "This nurse had on these radiation gloves up to her elbows and took the pill out with these tongs and said, 'Open your mouth.' It scared the hell out of me."

The procedure remains much the same today, said Shawn Farley, a spokesman for the American College of Radiology. Radioactive iodine pills are usually kept in lead capsules, he said, and medical personnel and patients alike use lead-lined gloves when handling them.

Asumaa said she spent the next two days living like a leper. People weren't allowed to be within six feet of her because of the radioactivity, she said, and she had to flush the toilet twice when she used it.

"I felt fine for those two days, and then I felt really awful, like I had the worst flu ever," Asumaa said. With her thyroid gland gone, she began to experience hypothyroidism. She said she put on weight quickly, gaining about 30 pounds in a month. It took about six weeks to figure out the right dose of thyroid hormone, to bring her back to normal, she said.

Or sort of back to normal. "I'm not even sure what normal feels like anymore, to be honest with you," she said. "I get more tired than the normal person, and I have to take it easier."

In 2006, Asumaa was diagnosed with thyroid eye disease, a common side effect of hyperthyroidism. The condition, in which the eyes bulge, is slightly painful and somewhat unsightly, she said, but she's dealing with it as she's dealt with all her thyroid problems.

"I'll have it for the rest of my life," Asumaa said. "I have good days and I have bad days. Every few weeks I'll go through a cycle like that, where I don't feel so great and don't have a lot of energy. But I can function. I work. I have a happy life."

More information

A companion article explains thyroid disease.

SOURCES: Sasha Asumaa, Marietta, Ga.; Shawn Farley, public relations manager, American College of Radiology, Reston, Va.

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