Living with Graves’ Disease? Then be on the Lookout for Thyroid Eye Disease

Graves’ Disease Awareness Month is recognized in July of each year. As part of this year’s awareness campaign, the nonprofit organization Prevent Blindness and Horizon Therapeutics collaborated to create the FOCUS initiative. The goal of this initiative is to foster greater awareness among the Graves’ disease community about another illness called Thyroid Eye Disease (TED). Although TED is a separate condition, this rare disease often appears alongside Graves’ disease, and this population of patients is at heightened risk of TED.

Thyroid Eye Disease patient Susie first began experiencing swelling underneath her right eye, which spurred her to visit her doctor. Unfortunately, Susie’s concerns were not taken very seriously; she was given some eye drops and sent on her way.

“My doctor didn’t seem to think that there was anything to worry about, but I had a nagging feeling that something more serious was going on.” – Susie

Ultimately, Susie’s condition worsened to the point where her eye would no longer fully close and it felt like it was going to fall out of the socket. It was only then that the doctor referred her to an eye specialist, who ultimately diagnosed here with Thyroid Eye Disease. The process took an agonizing four months, during which the chronic pain and light sensitivity began.

“I wanted to get involved because there was so little information and I didn’t want other people to have to go through everything that I did.” – Susie

Weill Cornell Medicine’s Dr. Gary Lelli, who is experienced in diagnosing and treating Thyroid Eye Disease, says that around half of Graves’ disease patients may develop at least mild symptoms of Thyroid Eye Disease.

“All patients with a diagnosis of Graves’ disease should be regularly monitored by an eye care specialist.”

Dr. Lelli says that doctors who specialize in eye care should be able to recognize the disease, and even general practitioners should know when to refer their patients to a specialist. This is because Thyroid Eye Disease can cause the eyes to bulge and protrude from their sockets, giving patients a distinctive appearance. However, Thyroid Eye Disease is often misdiagnosed for more common conditions, like dry eyes or allergies.

One of the biggest challenges is that the symptoms of Thyroid Eye Disease can be subtle at first, and may develop slowly. This can lead to delays in treatment and diagnosis.

Though Thyroid Eye Disease affects everyone differently, patients often have their eyelids pull back or retract, leaving their eyes more exposed. This often leads to pain, irritation, and dryness. As the illness progresses, vision loss is also possible. If the muscles behind the eyes swell up from inflammation, the eyes may become misaligned, leading to double vision, which is highly debilitating.

The most severe cases often occur in men (although women get the disease more often) and in those who see symptoms appear more quickly. Smoking and older age are other potential risk factors for severe symptoms. Dr. Lelli commented that a certain treatment for Graves’ disease can increase risk or even trigger the onset of Thyroid Eye Disease symptoms:

“Treatment with radioactive iodine for hyperthyroidism, which is caused by Graves’ disease, can worsen or cause the onset of Thyroid Eye Disease symptoms.”

Treatment options for Thyroid Eye Disease include artificial tears, use of humidifiers, prisms or obstructing one eye (to help with double vision), stopping smoking, treating their underlying Graves’ disease, taking the antioxidant selenium, steroids, radiation therapy, surgery, and the medication teprotumumab (marketed as TEPEZZA®).

If you think that you may have symptoms of Thyroid Eye Disease, Dr. Lelli recommends meeting with a specialist as soon as possible. Click here to get started.


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