Your guide to thyroid eye disease

Thyroid eye disease (TED) is a rare autoimmune condition that causes inflammation and swelling in the tissues surrounding the eyes. It can cause eye problems like painful, red, irritated, bulging eyes. Vision is often affected, and rarely, vision loss is permanent. The condition is usually associated with a thyroid condition called Graves’ disease, but other thyroid conditions, like hypothyroidism or an underactive thyroid, may also be involved.

TED can negatively affect your quality of life and cause significant distress. The good news is that effective treatment options are available for thyroid eye disease, including medication, lifestyle changes, and surgery. 

Let’s take a look at thyroid eye disease: what it is, how to know if you have it, and what can be done to treat the symptoms.

What is thyroid eye disease? 

Thyroid eye disease (TED) is sometimes referred to as Graves’ ophthalmopathy or Graves’ orbitopathy. Although people with TED don’t always have Graves’ disease, it is strongly linked to this condition. Ninety percent of people with TED also have Graves’ disease or have had it at some point in their lives.

TED is an autoimmune disease, meaning that your immune system attacks the body, which results in inflammatory symptoms. TED is characterized by swelling of the tissues surrounding the eyes, including connective tissue, muscle tissue, and fat tissue. Eyes become red, swollen, dry, itchy, and irritated. 

There are two main phases of TED: the active and stable phase. The active phase is characterized by progressive inflammation and irritation of the eyes, as well as vision changes. This phase can last anywhere from six months to two years. The stable phase comes next, and is characterized by an inactivation of the condition. Although swelling around the eyes diminishes, vision changes may persist in the stable phase of TED. 

What causes thyroid eye disease? 

Thyroid eye disease is often associated with Graves’ disease, an autoimmune disease causing hyperthyroidism, but not everyone with TED has Graves’ disease. Still, the majority of people who have TED have Graves’ disease, or another thyroid condition, such as an underactive thyroid due to a different autoimmune thyroid disorder called Hashimoto thyroiditis.

“It is a common misconception that TED is caused by hyperthyroidism (an ‘overactive’ thyroid gland), most commonly Graves’ Disease, even to the point where TED is sometimes called, Graves’ Eye Disease,” explains Howard Krauss, MD, surgical neuro-ophthalmologist and director of Pacific Neuroscience Institute’s Eye, Ear and Skull Base Center. “The association of these two autoimmune diseases is so prevalent that it is more likely than not that having one of these conditions is predictive that the other is likely, although the two diseases may occur years apart.”  

Like Graves’ disease, TED is an autoimmune disease. In the case of TED, the body mistakes the tissues near the eye as foreign bodies and attacks them. The mechanism that causes TED to develop isn’t fully understood, but researchers believe that proteins in your eye tissue that are similar to proteins from your thyroid gland are mistakenly attacked by antibodies, causing inflammatory symptoms.

Besides the association with thyroid disorders like Graves’ disease, TED is linked to other contributing risk factors. According to Jovi Boparai, MD, an ophthalmic surgeon in the U.S. Department of Veterans Affairs and cofounder of CorneaCare, the most common risk factors for TED include a genetic propensity to develop the condition, as well as certain lifestyle choices.

Specific lifestyle factors that are most likely to trigger TED are smoking—or exposure to secondhand smoke—and stress. “The more a person smokes or the more a person experiences stress, the higher the risk for TED in the setting of Graves’ disease,” says Dr. Boparai. “In fact, both smoking and stress can serve as triggers to activate TED.” Additionally, people undergoing radioactive iodine treatment for hyperthyroidism may experience TED as a side effect of treatment, according to Dr. Boparai, and this risk increases if they are smokers.

Cutting back on smoking and reducing your stress levels is an important preventive measure to take to reduce your chances of developing TED, especially if you have other known risk factors, such as Graves’ disease, or you have a genetic predisposition (i.e., TED runs in your family).

Who is affected by thyroid eye disease?

Thyroid eye disease is a rare condition, and most people will not develop it in their lifetime. Although the precise prevalence is unknown, it’s estimated that the condition affects about 16 out of every 100,000 people, or 0.16%. The same study found that the condition is more likely to affect women, with 22 out of every 100,000 women affected but only 7 out of every 100,0000 men. At the same time, the condition is known to affect men more severely than women.

The condition affects middle-aged people the most, with the condition most prominent among people aged 35-59. “TED occurs most frequently in middle-age women with a personal family history of thyroid disease, but may occur at any age in any sex,” Dr. Krauss says. “Although all races, ethnicities, and nationalities are affected, there is a higher incidence in Blacks and Asians than in other races.”

Additionally, TED is highest among people currently smoking as opposed to former smokers or people who have never smoked, highlighting the important role that smoking plays in the development of the condition.

Thyroid eye disease symptoms

TED causes inflammation of the eye tissues that can be uncomfortable, painful, and distressing. Vision changes are also common. Both eyes are usually affected, though you may only experience symptoms in one eye. Although symptoms vary from one individual to another, some of the most common symptoms of TED are:

• Red eyes
• Eye pain
• Dry eyes
• A “gritty feeling” in the eye
• Double vision
• Vision difficulties
• Bulging eyes
• Trouble fully closing your eyes

When you have an active case of TED, not only do you experience swelling around the eyes, but your eyeballs may look like they are bulging, a condition called proptosis. 

“As patients experience fat and connective tissue enlargement, they may get proptosis, which is bulging of the eyes, where the eyes appear to ‘pop out’ of the eye sockets,” Dr. Boparai explains. “Individuals may also experience eyelid retraction and lid lag.”

TED may also cause dry eyes, Dr. Boparai says, because of overexposure of the cornea and conjunctiva, the membrane that covers the inside of the eye and inner eyelids. “The common symptoms of dry eyes include eye dryness, watery eyes, irritation, burning, and redness,” he says. In severe cases, corneal ulcers are possible. Changes in the eye, such as enlargement of the eye muscles and eye movement malfunction may cause diplopia, or double vision, according to Dr. Boparai.

 Some people may wonder if TED is a contagious condition, but it’s an autoimmune disorder and therefore not contagious. However, some people seem to develop psychosomatic responses to the condition, says Dr. Krauss. “Many people have a psychological reaction to seeing another with a red or swollen eye such that they sense or fear an irritation of their own eyes, which, when followed by excessive touching or rubbing around one’s own eyes may lead to redness, swelling, or irritation,” he describes.

Thyroid eye disease treatment

It’s important that you seek medical care if you notice any symptoms of TED. Treatment can slow down disease progression and ensure that you don’t experience long-term damage. “In the absence of treatment, in most cases, there is worsening over months to a year, followed by stabilization, followed by improvement over several years,” Dr. Krauss says. Treatment is especially important to prevent permanent damage to the eyes or loss of vision, he adds.

There are three main ways that TED is treated: through lifestyle changes/natural remedies, over-the-counter and prescribed medications, and surgeries. 

Lifestyle changes

If you are a smoker, the single most important thing you can do to address TED is to stop smoking or drastically reduce the number of cigarettes you smoke. “For reasons not yet known, smokers have a much more severe course of TED than non-smokers, such that smoking cessation is an essential part of the treatment of TED,” says Dr. Krauss. Destressing is also important, as stress can be a contributing factor in deregulating the immune system and triggering autoimmune issues, Dr. Krauss explains.

Besides smoking and reducing stress in your life, other simple steps you can take to address your symptoms include:

• Applying cool compresses around your eyes
• Using sunglasses or prism glasses (for double vision)
• Using an eye patch on one eye to address double vision
• Sleeping with your eyelids taped shut, to reduce dry eye symptoms
• Drinking aloe vera juice, which may help with inflammation

Medications

Certain over-the counter medications can help soothe some of your symptoms, such as 

lubricating eye drops to reduce irritation and dryness. If your healthcare provider finds that you are deficient in selenium, a selenium supplement may help address your TED symptoms.

Prescription medications

Dr. Boparai recommends systemic corticosteroids, such as prednisone. “Corticosteroids can help decrease inflammation during the active phase of TED,” he says. Additionally, you should ask your healthcare provider or endocrinologist about Tepezza (teprotumumab). “Recently, teprotumumab was approved by the FDA for TED and showed clinical improvement in decreasing signs and symptoms,” Dr. Boparai explains.

Surgeries

In most cases, lifestyle changes and medications are enough to manage your TED symptoms. But in serious cases, surgery may be necessary. “In severe cases, the orbital tissue enlargement can compress the optic nerve, leading to loss of vision,” Dr. Boparai says. “This is a medical emergency, and typically requires intravenous steroids, orbital radiation, or orbital decompression surgery to enlarge the orbit.”

Other surgeries that are used to treat TED include:

• Strabismus surgery (eye muscle surgery)
• Eyelid repair

The most important step to take is to see a healthcare provider if you develop any symptoms of TED. Usually this means seeing an ophthalmologist or optometrist. Whatever you do, TED isn’t something to just brush aside or try to push through. “If left untreated, TED can lead to worsening quality of life and irreversible vision loss,” Dr. Boparai says.