The Graves' Challenge

Rob's Story

Living with Graves' is simple for some yet extremely difficult for others. After trying different drug based therapies to lower his hyperthyroidism that led to allergic reactions, Robert had his thyroid completely neutralized through Radioactive Iodine-131 treatment. Robert had great swings in terms of energy, motivation and overall disposition to continue his climbing aspirations but still has been able to climb great peaks to inspire others despite his daily dependence on Levothroid, a replacement hormone that controls his autoimmune system.

Understanding Graves' Disease

This information is provided by the Thyroid Foundation of America, Inc. (TFA)

What Is Graves' Disease?

Graves' disease is one of the forms of hyperthyroidism in which your thyroid gland makes too much thyroid hormone and upsets the working of the rest of the body.

This thyroid disease was named for the Irish physician Robert Graves who first described it more than a l00 years ago. It is also called "diffuse toxic goiter" -- "diffuse" because the whole thyroid gland is involved; "toxic" because you look feverish, hot, and flushed, as if with an infection; "goiter" for the enlargement of the thyroid gland which swells in the neck.

Who Gets Graves' Disease & Why?

Perhaps 10 to 15 percent of people in the United States have an immune system which is vulnerable to autoimmune disease -- that is, to having the body's own system of protection against infection turn against some part of the body itself. In Graves' disease, cells of the immune system attack thyroid cells, stimulating them to make too much thyroid hormone.

Graves' disease is not the most common of thyroid diseases, but because of its involvement with heart and eye problems, it can be one of the most serious. Both President and Mrs. Bush developed Graves' disease while in the White House.

It can occur at any age, and is 4 to 8 times more common in women than men. It affects perhaps 0.32 percent of men in the US and 3.2 percent of women.

It is not known exactly what sets the disease process going. Sometimes a severe physical or emotional stress, loss of a job, death of a loved one, comes before the development of Graves' disease. Occasionally a young mother may experience Graves' disease (or another form of hyperthyroidism) after pregnancy.

Symptoms

* Like other thyroid problems, Graves' disease usually begins slowly.

* You lose some weight, or find it easy to keep your weight down.

* You begin to have problems with muscle weakness, especially of large muscles in upper arms and thighs. Your hands may shake.

* You have trouble sleeping.

* Your pulse is faster and may be irregular.

* Your hair gets finer, and breaks easily.

* Your skin is thinner and you may perspire more.

* You have more frequent bowel movements.

* For women, periods are shorter, and may be further apart.

* Your thyroid gland enlarges and you may notice the swelling or "goiter" in the lower front of your neck.

Associated with Graves' disease in many cases is eyelid retraction, making your eyes appear larger. About 5 percent of patients experience more serious eye problems, in which the tissue around and behind the eyes becomes inflamed and swollen. This may make your eyes protrude, and it may be difficult to close them completely at night. Rarely, there may be problems with double vision or diminished vision.

Diagnosis

If you have several of the symptoms described above, your doctor will perform a number of tests to check the level of the thyroid hormones in your blood, and the level of "messenger hormone" (Thyroid Stimulating Hormone or TSH) that the pituitary sends to the thyroid controlling thyroid function. If the thyroid hormone level is high and the TSH is low, it is clear you have some kind of hyperthyroidism.

A scan of your thyroid gland will show whether the whole gland is overactive (as in Graves' disease), or whether one or more nodules or lumps is making the trouble (as in Toxic Nodular Goiter), but a scan is not needed in all cases.

Treatment Of Hyperthyroidism, Including Graves' Disease

Whatever the cause of your hyperthyroid condition, whether Graves' disease or some other problem, the treatment has two aims -- (1) to block the action of the hormone throughout the body so that symptoms are relieved promptly; (2) to stop the thyroid gland from overproducing thyroid hormone, on a temporary or permanent basis.

Treatment of the eye problems in Graves' disease, if they develop, is separate and needs to be done by a specialized eye doctor (ophthalmologist).

Medications To Block The Action Of Thyroid Hormone In The Body

Various drugs (called beta-adrenergic blocking drugs) can decrease the effect of thyroid hormone in the body, including: atenolol (Tenormin®), nadolol (Corgard®), metoprolol (Lopressor®), or propranolol (Inderal®). These can often improve symptoms in a few hours, and can ease the situation until something more permanent can be done, or they may be the only needed treatment for some patients who have a temporary form of hyperthyroidism.

However, beta-blocking agents are NOT USED with patients with asthma or heart failure and are used WITH CARE for patients with diabetes.

Treatments To Stop The Gland From Overproducing Thyroid Hormone

Some drugs make it difficult for the thyroid to use iodine to make its hormone such as propylthiouracil (PTU) and methimazole (Tapazole®). These drugs are often used on a temporary basis (6-24 months) to see if the body will recover on its own. About 5 percent of patients may become allergic to these drugs, usually developing a skin rash. Very occasionally a patient taking propylthiouracil or methimazole may have a sudden drop in the white blood cells which fight infection -- therefore if you are on either of these drugs and get an infection, you need to have your white blood cells checked that day. The usual type of infection that occurs in this circumstance is a bad sore throat or an infection in the mouth or gums. This is an emergency for which you should be examined and have your white blood cell count tested by your physician or at a hospital emergency room.

Radioactive Iodine Treatment

The thyroid gland is the only part of the body that makes use of iodine, which makes it possible to treat Graves' disease on a permanent basis with radioactive iodine. This treatment destroys much or all of the gland's ability to make thyroid hormone. When and if hypothyroidism develops, it is easy and safe to replace the missing hormone with thyroid hormone pills taken once a day. The short-lived radioiodine is taken by mouth, does its work as it is concentrated in the thyroid gland, and quickly decays or is excreted in the urine. Usually patients become normal or develop an underactive thyroid (hypothyroid) after one treatment, but if not, the treatment may be repeated for a second or third time. Once hypothyroidism has developed, the right amount of hormone can then be given in pill form -- for the rest of your life, with periodic thyroid tests to adjust the thyroid doses as necessary to keep you well.

Surgery

In some cases, it is preferable to remove some or all of the thyroid gland by an operation. In such a case, the thyroid levels are usually lowered or blocked by drugs first. An experienced surgeon is needed to work in the complicated neck area. Usually patients are hypothyroid after surgery and require life-long thyroid hormone treatment.

After Treatment

After any kind of permanent treatment for a hyperthyroid condition, including Graves' disease, it may take some months for the situation to stabilize and for the right dose of hormone supplement to be found. Furthermore, a thyroid gland that has ever functioned too high can go into thyroid failure as a person grows older, though this is most likely in patients who have had Graves' disease rather than hyperthyroidism from other causes. If you feel that you are getting too revved up again with hyperthyroidism, or too dragged out with an insufficient supplement of thyroid hormone, be sure to go back to your doctor for the basic blood tests so that you can be treated if necessary and return to good health.

Your thyroid hormone levels need to be checked regularly for the rest of your life.