Dear Dr. Roach: I had a total thyroidectomy in July 2022 for Graves’ disease. All the time leading up to this and almost all the time since, I’ve only had one short “active” period of thyroid eye disease (TED). My only noticeable symptom was double vision, but it went away after surgery.
However, in May of this year, I suffered a dog bite in the back of my leg, which required antibiotics and a tetanus shot. The double vision started again a few days later and has persisted. A routine blood test showed an elevated TSH level just above the high end of normal, 4.79 mU/L to be exact.
I was also under a great deal of stress while caring for my mom, followed by her passing and all the work that came with settling her estate. I used to smoke a pack of cigarettes a day, but since the surgery, I smoke a single cigarette a day. Could any of these things have contributed, either singly or collectively, to the development of double vision?
I’ve read that selenium supplementation may help with TED. My insurance won’t cover Tepezza, and the possible side effect of hearing loss is more frightening than living with double vision. By the way, I did manage to obtain a stick-on prism lens for my glasses. It helps a lot, but only for long distances.
A.C.
TED is a complex problem associated with Graves’ disease, an autoimmune disease that causes excess thyroid hormone production. The fat cells behind the eye can react to the autoantibodies, causing inflammation and growth behind the eye. They push the eye out, causing a bulging appearance called proptosis. About half of people with Graves’ disease will get TED.
I don’t think the dog bite, antibiotics, tetanus shot, or caregiver stress worsened your eye symptoms, but smoking absolutely worsens TED and reduces the effectiveness of treatments. Even a single cigarette a day can cause damage.
Keeping thyroid levels in the normal range helps. A high TSH almost always means a low thyroid hormone level and often a need to increase the dose of thyroid replacement. Selenium supplementation is recommended by some experts, with a usual dose of 100 mcg twice daily. (Brazil nuts are extremely high in selenium; about two to three Brazil nuts a day will provide the recommended dose.)
Surgery used to be the primary therapy for severe TED, but the new drug teprotumumab (Tepezza) has changed the treatment. Unfortunately, it is both very expensive (a course of teprotumumab costs hundreds of thousands of dollars, often not covered by insurance) and has the side effect of hearing loss in about 20% of those who take it. For this reason, careful hearing assessment during therapy is recommended, and the drug may have to be stopped.
Other immune-suppressing drugs, like tocilizumab and rituximab (commonly used with rheumatoid arthritis and other conditions) or mycophenolate (usually used in transplant patients), are sometimes used by experts when teprotumumab can’t be used.
Treatment of TED needs to be based on the severity of the condition. Mild disease often goes away by itself over the years, but severe disease does not. Very severe disease can be sight-threatening. If the medications are ineffective or can’t be used, then surgery may be necessary to preserve vision or correct double vision. Some people get surgery for cosmetic reasons as well.
Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to [email protected]
