If you look in the bathroom mirror and see red, swollen, irritated eyes staring back, you might be tempted to blame ragweed. But seasonal allergies may not be the culprit. A condition known as thyroid eye disease can play havoc on your eyes’ appearance — as well as your vision. It happens when your body’s immune cells attack the muscles and connective tissue behind the eye, causing inflammation.
What is it?
Thyroid eye disease (TED for short) is also known as Graves’ ophthalmopathy or Graves’ eye disease — and with good reason. It usually develops in people with an overactive thyroid caused by Graves’ disease, an autoimmune disorder that causes the thyroid to produce more hormones than the body needs (hyperthyroidism). In fact, approximately 1 in 3 people with Graves’ disease will develop the eye problems.
Why? Our immune cells make antibodies, and researchers suspect that typically any place in the body that expresses a thyroid receptor can get attacked by those antibodies. The thyroid obviously expresses thyroid receptors — and it just so happens that thyroid receptors can also be found behind the eye.
“That provides some of the explanation for why the eyes become involved,” says Simon Pearce, a professor of endocrinology at Britain’s Newcastle University. “There’s some shared protein between the thyroid and the muscles and tissues behind the eye.”
Even so, people with hypothyroidism (an underactive thyroid) or even normal hormone levels can also have TED, though this occurs a lot less commonly.
Symptoms can range from mild to severe, but only a very small percentage of people will experience TED that threatens their sight. In the early stages of the disease, eyes appear red and swollen. They might feel dry, itchy and irritated (imagine getting a bit of sand in your eyes). The eyelids are often retracted — meaning the upper lid is too high and you can actually see the white of the eye above the cornea — giving people a slightly startled appearance.
“Because more of the white is exposed, the conjunctiva [the clear mucous membrane that covers the surface of the eyeball] gets dry,” Pearce says.
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.”
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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.”
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.”
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.”
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.