First-Ever Awareness Week Sheds Light on Thyroid Eye Disease

Key Takeaways

Thyroid eye disease (TED), also known as Graves’ eye disease, is an autoimmune disorder that is often related to Graves’ disease of the thyroid.
TED affects a person's quality of life and can threaten vision if left untreated.
Thyroid Eye Disease Awareness Week promotes advocacy for the condition and informs people about the treatment options available.

This week, eye care experts are drawing attention to a type of eye disease associated with thyroid disorders during the first-ever Thyroid Eye Disease Awareness Week. The awareness week, which lasts from November 16 to 22, is intended to educate the public about thyroid eye disease (TED), how the condition affects patients, and the new treatment options available.

One community that is supporting TED Awareness Week is Listen to Your Eyes, a Facebook group for individuals with TED and their caregivers. The page will host free live webinars from experts in TED throughout the week. Patients living with TED can also find support and connect with specialists on the group’s website.

What Is Thyroid Eye Disease?

Thyroid eye disease (TED), also known as Graves’ eye disease or Graves’ ophthalmopathy, is an autoimmune condition that causes inflammation and swelling to the muscles and fat behind the eye.

TED most often occurs in middle age and is five to six times more common in women than in men. Smokers also have a higher incidence of TED.

Graves’ Disease vs. Graves’ Eye Disease

Graves’ disease is an autoimmune disorder that attacks the thyroid gland, causing it to produce excessive amounts of thyroid hormones. About 90% of patients with TED/Graves' eye disease have underlying Graves’ disease, and 50% of patients with Graves’ disease will develop TED/Graves' eye disease. However, TED can occur in individuals with normal or low thyroid levels.

Symptoms of Thyroid Eye Disease

During the acute, or active, phase of TED, increased pressure behind the eye will cause the eyes to appear to bulge out of the eye sockets. If the eyes are pushed too far from their normal position, the eyelids cannot fully close during blinking or sleeping, causing dry eyes. Prolonged eye dryness can damage the cornea, the transparent protective layer on the front of the eye.

Gary Joseph Lelli, MD

If you treat quickly enough, you can prevent vision loss.

— Gary Joseph Lelli, MD

TED then enters a chronic, or inactive phase, during which some symptoms such as redness and swelling may improve, but scarring and damage occur. TED can reoccur, or "flare up" over time.

“In its natural course, we typically find that patients have a progressive inflammatory process for about three years, and then the disease enters a phase where the patients are not changing, but they are still worse than they were before [before their diagnosis],” Gary Joseph Lelli, MD, a board-certified ophthalmologist specializing in oculoplastic surgery at Weill Cornell Medicine, tells Verywell. "If you treat quickly enough, you can prevent vision loss."

How TED Affects Quality of Life

TED takes a tremendous emotional toll on the people who have it. “Many of these patients are females in the middle of their career and family life, and it is difficult for them to work and take care of those around them,” Lelli says. “They struggle with driving, working, and reading.”

TED can also complicate social interactions and make sufferers feel self-conscious about their appearance. “It can be hard to know which eye they are looking at you with when speaking,” Lelli says. “Over weeks to months, they begin to look like a different person. They stay inside more and don’t want to share photos of themselves.”

Treatments for TED

Any individual with underlying thyroid disease, or symptoms of TED, should first be evaluated by a specialist who treats TED. “Patients with TED should get their eyes checked by a neuro-ophthalmologist or oculoplastic surgeon,” Lelli says. “They also need to have a good endocrinologist to manage their thyroid.”

Gary Joseph Lelli, MD

I’m glad that people are learning more about it. It definitely is a disease we need to raise more awareness about.

— Gary Joseph Lelli, MD

Early diagnosis and intervention can prevent disease progression. “The sooner we make a diagnosis, the better able we are to manage or treat the patient if something changes or progresses,” Lelli says.

At-Home Treatments

In addition to treatments that an eye specialist might recommend, there are also some simple measures you can take at home to relieve the symptoms of TED.

Using lubricating eye drops to relieve dryness
Taping your eyes shut at bedtime to protect your eyes at night
Applying cool compresses to your eyes to decrease swelling
Wearing sunglasses to protect your eyes from light and wind
Elevating the head of your bed to reduce swelling and pressure in your eyes
Taking selenium supplements (the antioxidant might help some people with thyroid disorders)
Wearing eyeglasses with prism lenses can fix double vision for some people
Quitting smoking, which can worsen TED

Medication

Steroids can be prescribed to patients with TED because they treat the swelling and inflammation associated with TED. They are a common treatment for Graves’ Eye Disease.

In 2020, the U.S. Food and Drug Administration (FDA) approved the drug Tepezza to treat TED. The medication, which is manufactured by Horizon Therapeutics, is the first drug created exclusively for TED.

Tepezza blocks the receptor site in the eye that is attacked by the immune system in TED, stopping the inflammation and preventing further damage. The medication is given intravenously, once every three weeks for a total of eight doses.

“In the past, we would ‘watch and wait’ before starting medications, but this is early treatment,” Lelli says. “I have seen patients begin to respond within one to two doses.”

Surgery

Surgical options are available to patients with advanced TED who do not respond to other treatments.

Eyelid repositioning surgery stretches the eyelids forward to cover the eyes, reducing irritation from eyelids that do not fully close
Eye muscle surgery can correct the double vision that occurs when eye muscles are pulled out of alignment by swelling
Orbital decompression surgery involves the removal of a bone between the eye socket and sinuses to allow more space for swollen eye tissues.

What This Means For You

Thyroid eye disease (TED) can have a serious effect on a person's quality of life and can lead to vision loss if it's not treated. If you have thyroid disease, you could develop the condition—especially if you also have other risk factors.

Talk to your healthcare provider about seeing an eye specialist. If it is diagnosed early, there are several treatments for TED, including medications and surgery.