Society of Certified Senior Advisors: Understanding Thyroid Eye Disease

Thyroid Eye Disease can cause pain and disfigurement, but treatment makes an impact.

You’re probably familiar with the most common age-related eye conditions: glaucoma, cataracts, dry eye, and age-related macular degeneration (AMD). Thyroid Eye Disease, or TED, while less common and less familiar to most people, still affects about 63,000 individuals in the United States.

An autoimmune disorder, TED causes inflammation in the muscles and fatty tissues behind the eye. When the area behind the eye becomes inflamed, people with TED might notice these symptoms:

Bulging eyes
Dry eyes
Watery eyes
A gritty feeling in the eyes
Double vision
Difficulty closing the eyes completely, resulting in a “stare”
Pain in or behind the eyes

Most people experience symptoms in both eyes, but it’s possible that only one eye feels the effects. For some, a frustrating part of the disease is that it changes the appearance of the eyes and face. In a recent study on patient experiences with TED, some participants noted that the disease has a negative effect on their self-confidence. Others said that it makes daily activities like reading and driving less comfortable. One person shared, “This is a very difficult disease that causes tremendous damage to one’s health, ability to be independent, and psychologic well-being. As is the case with other autoimmune diseases, it is unpredictable, triggers other, significant health problems, and is always with you.”

People are most often diagnosed with TED in their 40s or 60s, but onset can happen for people in their 20s through 90s. Women are four times more likely to be diagnosed than men. That’s because women are more likely to develop hyperthyroidism, a condition in which the thyroid releases too many hormones. Thyroid Eye Disease usually occurs along with hyperthyroidism, which in turn often occurs with Graves disease, an autoimmune disorder. TED is sometimes called Graves’ eye disease.

Diagnosis Can Be Frustrating

Many people with TED say they struggled to find out that they had the disease. In the same recent study, one participant with TED said, “It was hard getting a diagnosis. I visited 2 local doctors who just prescribed eye drops that did nothing. It wasn’t until I went to a major teaching hospital in a large city that I received a correct diagnosis.”

If you suspect you may have TED, ask your doctor to examine your eyes and eyelids. A blood test can confirm if hyperthyroidism is contributing to the symptoms, and your doctor may also order imaging: an orbital ultrasound, CT, or MRI.

According to Dr. Eve M. Glazier and Dr. Elizabeth Ko of UCLA, “There is no known cure for the condition at this time. That means treatment focuses on managing existing symptoms and monitoring their effect on vision.”

A New Treatment

Thankfully, treatment can make a big impact on the symptoms of TED. Steroids can help reduce inflammation in the initial stage of the disease, so getting a diagnosis early can make a difference in the long-term effects of TED.

Currently, Tepezza (teprotumumab) is the only FDA-approved drug to reduce the symptoms of TED. Approved in 2020, the drug can help reduce eye pain, redness and swelling, double vision, and bulging eyes.

If your doctor prescribes Tepezza, you may receive an IV-infusion of the drug every three weeks for about five months. TED is relatively uncommon, and Tepezza treatment isn’t available everywhere. Some patients may have to travel for these infusions. Tepezza is usually covered by insurance or Medicare.

In some cases, people with TED might decide on surgery. Eyelid surgery helps the eyelids close over the cornea and reduce the risk of eye damage. Orbital decompression surgery involves making the eye socket larger or removing some tissue from behind the eye. Eye muscle surgery can also help reduce eye bulging.

Lifestyle changes can also help reduce TED symptoms. Number one: smokers should quit, since smoking increases the chance of developing TED by seven or eight times, and it drags out the inflammatory stage. People with TED can also find relief by:

Wearing sunglasses
Using cool compresses on the eyes
Taking selenium, if a doctor prescribes it

Thyroid Eye Disease is complex, like other autoimmune disorders, and can have a serious impact on individuals’ quality of life. The TED Community Organization provides support for people with TED and their families. Check out their website for online support groups, patient story podcasts, and many more resources.