Know the Symptoms of Thyroid or Graves’ Eye Disease

This can lead to lots of tearing, which can blur vision, as well as sensitivity to light. What’s more, says Jules Winokur, M.D., vice chair of ophthalmology at New York City’s Manhattan Eye, Ear & Throat Hospital, “a retracted lid can lead to a lower blink rate. And if you don’t blink, tears aren’t being spread around the surface of the eye.”

If TED is left untreated, inflammation can get worse. Progressive swelling may cause increased pressure and pain in the back of the eye socket, which worsens with eye movements. The eye muscles can also tighten and hinder eye movement, possibly leading to double vision. “If the swelling from the buildup of tissues in the eye socket is bad enough, the pressure can cause compression of the optic nerve, resulting in progression of vision loss,” says Matthew Zhang, M.D., an oculoplastic surgeon at Seattle’s Eye Institute at Harborview and an assistant professor of ophthalmology at the University of Washington.  

In the later stages, you can get a protuberance or bulging of the eye because the muscles and soft tissues behind the eyeball swell up, pushing the eye forward.

There are two phases to the disease. When TED is in its active, inflammatory stage, symptoms such as sore, gritty, puffy eyes can last from six months to two years. But for most people, things will quiet down and get better on their own. The second phase is the stable phase when the active inflammation quiets down. “The disease will burn itself out,” Zhang says. “But often, patients will be left with some degree of protrusion of the eye, eyelid retraction or double vision that requires medical attention.”

Quality-of-life issues

Not all of the challenges are physical. According to a survey of physicians treating TED, patients find it difficult to function in social situations, with about a third experiencing anxiety and/or depression. Problems with the alignment of the eyes and double vision, in particular, can affect the quality of life. “Double vision can knock you out of commission — you can’t drive or do normal activities,” Winokur says. “And there are people who are in constant pain from dry eye. They use eye drops and get relief for five minutes, then go on the computer and can’t work.”

Fortunately, help is available. The Graves’ Disease and Thyroid Foundation offers resources and online support groups for those suffering with thyroid eye disease, including at onegravesvoice.com.

Easing eye discomfort

A doctor who suspects you have Graves’ eye disease will first examine your thyroid for abnormalities and make sure that an overactive thyroid — if that is the cause — is well controlled with anti-thyroid medications. However, although Graves' disease and thyroid eye disease share a similar biology — both are caused by the immune system’s attack on healthy tissue — one doesn’t necessarily cause the other. TED can occur when thyroid levels are high, normal or low. 

For those with mild TED, a few simple things can alleviate discomfort. Slipping on a pair of sunglasses may help with light sensitivity. Adding prisms to your glasses may do away with double vision.

Irritation can be managed with cool compresses, over-the-counter artificial tears or prescription eye drops to boost tear production, or an eye gel at night. “If the eye is pushed forward and more prominent, you can’t close your lid properly when you’re asleep,” Pearce says. “A lubricating gel can protect the surface of the eye.”

Oh, and if you’re a smoker, consider this one more reason to stop: Smokers with Graves' disease are about twice as likely to develop TED as those who don't smoke, and smoking makes TED worse.  

There is also recent evidence that selenium, a mineral mainly found in grains and nuts, may be helpful. “If a patient’s diet is poor in selenium, we may recommend that they eat Brazil nuts, which have a high amount of selenium,” Pearce says. “It’s also an antioxidant, so it helps with inflammation in the eyes. Or we may give them a mineral supplement with selenium in it.”

Doctor-assisted treatments

Corticosteroids. For more aggressive symptoms, your doctor may suggest corticosteroids (particularly prednisone) to reduce inflammation. “Eyes that are inflamed — lots of redness, watering and tearing, swelling of the eyelids or the whites of the eye, and grittiness — can be treated very nicely with steroids,” Pearce says.

Tepezza. Another option is Tepezza, FDA-approved in 2020 as the first prescription medication to treat TED. It’s given via an IV in your arm every three weeks for a total of eight times. Tepezza stops the growth of the muscles and soft tissue behind the eye to reduce eye bulging, double vision and pain. Promising, for sure, but you’ll want to talk to your doctor. For one thing, there may be side effects. (Recently, more than half the participants of a small study experienced hearing loss to varying degrees after being treated.) And there’s the jaw-dropping price tag: Tepezza is estimated to cost $15,000 per vial, with the six-month treatment costing about $200,000. Insurance coverage and patient out-of-pocket costs vary, depending on insurance plans. 

Surgery. Ultimately, even after TED is under control, people may need rehabilitative surgery to correct the appearance of their eyes — to return the eye to its previous shape.

• Orbital decompression surgery is usually done when pressure on the optic nerve is threatening vision. An endoscope is carefully maneuvered through the nose and the sinus near the eyes, and pieces of bone and tissue are removed to give the eye more room to fall back into place. “It also reduces some of the compression around the optic nerve,” says Winokur. A pair of outpatient procedures, performed using local anesthesia, can tackle other problems.
  
  
• Eye muscle surgery is performed when scar tissue, which forms around eye muscles, becomes stiff, causing eyes to become misaligned and leading to double vision. A surgeon repositions the muscles, bringing eyes into alignment.
  
  
• Eyelid repositioning surgery can help when the muscles of the eyelids are too tight, causing the eyelids to open too widely. Eyelid muscles or tendons are released, allowing the eyelid to return to a more natural position.

Even after corrective surgeries are completed, you may be left with some unwelcome souvenirs. “Because your eyelids swell up with inflammation and fluid, and because you probably rub them a lot,” says Pearce. “That stretches the skin. People are often left with saggy, baggy eyes.” Swollen and puffy tissue around the eye can be tightened with blepharoplasty (more commonly known as an eye lift). Laser resurfacing and injections, such as Restylane, can give saggy skin a boost.​​

Barbara Stepko is a longtime health and lifestyle writer, and former editor at Women’s Health and InStyle. Her work has appeared in The Wall Street Journal, Parade and other national magazines.