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A Specialist Examines the Obscure Disease That Gives Eye Trouble to Thousands—and to Barbara Bush

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Among the many roles modern-day First Ladies have had to play is that of public health educator. Through the personal experiences of Betty Ford, the nation learned important lessons about substance abuse, breast cancer and even face-lifts. Nancy Reagan’s battle with breast cancer was also public record. Now Barbara Bush is shedding light on a more obscure disease. Last March, the First Lady has said, her thyroid “just went wacko.” She had inexplicably lost close to 20 lbs. in the previous weeks, but it wasn’t until her eyes became swollen and irritated that she sought medical attention. The diagnosis: Graves disease.

Named after Robert Graves, a 19th-century Irish physician credited with first recognizing the ailment, Graves is the most common form of hyperthyroidism, or enlargement and overactivity of the thyroid gland, located at the base of the neck. An estimated 7 million Americans have thyroid disorders; of these, perhaps I million are Graves sufferers, with women being stricken about 10 times more often than men. Last spring Mrs. Bush, 64, was given radioactive iodine to slow down the hyperactive gland. In August the steroid prednisone was prescribed to treat the inflamed tissues that caused her irritated eyes and double vision. Those problems have persisted, however, and this month she received a 10-day course of radiation therapy. The First Lady reportedly feels fine but will not know for several months whether the treatment has improved her eye problems.

Dr. Leslie J. DeGroot, 61, professor of medicine, head of thyroid research at the University of Chicago and a practicing endocrinologist, has studied diseases of the thyroid for more than 30 years. Married for 35 years, DeGroot and his wife, Helen, have five children (two of them doctors) and live on Chicago’s South Side. Although he has not treated the First Lady, DeGroot talked with correspondent Giovanna Breu about this distressing disease and what may lie ahead for Mrs. Bush.

What causes Graves disease?

It is one of several autoimmune disorders in which the body becomes allergic, in a way, to some of its own organs. In this case, antibodies form that stimulate the thyroid and cause it to enlarge and produce excessive thyroid hormones. The normal function of these hormones is to help regulate metabolism—the rate at which the body burns carbohydrates, proteins and fats. In Graves disease, excess hormones cause these body fuels to be burned too fast.

What are the symptoms?

People are jittery or anxious, they have trouble sleeping, their hearts pound, they sweat excessively, lose weight, have diarrhea, their hands shake and often their eyes become prominent. That is because a complication of the disease is inflammation and swelling of tissues behind the eye. A bony cone surrounds the eye, so those tissues can’t go anywhere except forward. Also, if the muscles that control eye movement become weakened, people may have difficulty moving their eyes and develop double vision, which is devastating. They have trouble driving, can’t go to a movie or raise their eyes to look at things. Their eyes can also be very irritated and teary.

Can Graves disease be fatal?

Usually it is easily treated. In the most severe form, called a thyroid storm, the heart rate may rise sharply, and there may be delirium, coma and possibly death. But that’s very rare.

What is the treatment for Graves disease?

There are three common treatments. One is medication that inhibits the production of excessive hormones. About one-third of the people get permanently better after a year on these pills. Radioactive iodine, which Mrs. Bush received, is the second common treatment. It may be given to lower thyroid function to normal, or in a larger dose to destroy the thyroid, after which you have to take thyroid hormone replacement pills. In almost all cases, radioactive iodine controls the thyroid overactivity. The third alternative treatment is surgery in which part of the thyroid is removed.

Despite iodine treatments, Mrs. Bush still suffers from eye problems. Why?

The eye disease is a related but separate problem that may persist after the basic hyperthyroid condition is under control. The eye problem is not a result of excess hormones, although what does cause it is not really known. Only about 2 to 3 percent of Graves sufferers get a severe case. I would say Mrs. Bush’s is moderately severe. I have patients whose eye disease is much worse than hers.

How does radiation therapy correct the eye problem?

The X rays are aimed at everything in the eye behind the lens and may kill the cells causing the inflammation. About 30 percent of the people have a good response. It’s not a perfect treatment. It’s not harmful, it’s just iffy. If Mrs. Bush is among the lucky third, her symptoms might get better in the next few months.

What can be done if radiation doesn’t work?

Operations can remove bone and expand the area behind the eye so swollen tissue can move into it. Blood washing has been used to remove the antibodies, and drugs can be prescribed to inhibit the immune system. But these last two treatments are borderline experimental.

Are there any less drastic remedies?

Patients with double vision may cover one eye or wear prism lenses. In the end, though, many people must live with double vision for some time.

What is the long-range prognosis?

In almost all instances, the eye disease commonly runs a course of worsening and then gradually improving over about two years. With treatment, most people will enter remission. It is very rare for it to continue to get worse.