What happens during Thyroid Eye Disease?

When you have TED, your immune system mistakenly attacks the muscle and fat tissue behind your eyes, causing inflammation (redness and swelling) and scar tissue to form. It was once thought that TED has two phases known as an “acute” or “active” phase and a “chronic” or “inactive” phase. You may have even heard these terms from your doctor. However, newer research shows that TED changes over time, with symptoms that can appear anytime and range from mild to severe, making it difficult to diagnose.

Learn what is happening to your eyes with TED

Thyroid Eye Disease (TED) and Graves’ disease are both autoimmune disorders. While TED often develops in people who have Graves’ disease, they are different conditions. That’s why they require different treatments.

Graves’ disease affects the thyroid. TED affects the muscle and fat behind the eyes. Watch the video below to learn more about the differences between TED and Graves’ disease, and TED risk factors.

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Announcer: Thyroid Eye Disease (or TED) is a rare disease affecting the eyes. TED is also referred to as Graves’ Eye Disease. TED can develop in patients with Graves’ disease. Although they are both autoimmune conditions, TED and Graves’ disease are different conditions as they affect different parts of the body.

In Graves’ disease, the body mistakenly attacks the thyroid glands, resulting in an overactive thyroid, or hyperthyroidism. In TED, the immune system attacks the muscles and fat tissues behind the eyes, causing redness and swelling known as inflammation. This process results in both the muscles and fat tissues behind the eyes expanding, as well as a buildup of fluid.

Treatments for Graves’ disease are targeted to help the thyroid but won’t help TED. Different medications and specialists are required to manage each condition. Some of the early symptoms of TED are eye pain, redness, dry or gritty eyes, or overly watery eyes, and blurry vision. These symptoms can be mistaken for other conditions, such as allergies.

TED is a progressive disease, which means it can get worse over time. Bulging eyes and eyelid swelling may occur as TED progresses. Eye swelling can make it hard to move the eyes. All these effects can lead to vision impairment, including double vision. In some cases, it is possible for swelling of fat and muscle tissue to push against the optic nerve, which puts vision at risk.

While it is not entirely known why some people develop TED and others do not, doctors have found certain factors that put people at greater risk. This includes having a thyroid condition such as Graves’ disease or hyperthyroidism, and Hashimoto’s disease, or hypothyroidism. The risk of developing TED may also be increased if patients have received radioactive iodine as treatment for Graves’ disease. In general, women are more likely to suffer from TED. Smoking and middle age further increase the risk of developing the condition.

As a rare and complicated disease, TED treatment requires a specialist who is familiar with treating it. Doctors who are most familiar with TED are usually specialized ophthalmologists, such as oculoplastic surgeons, neuro-ophthalmologists, and strabismus surgeons. Remember, TED can get worse over time. Getting treatment as early as possible can help prevent further eye damage.

Find a TED Eye Specialist at TEDdoctors.com.

What is happening to the eye during TED

Healthy Eye

What’s happening in front of the eye?

The eyeball and eyelid both appear normal (no redness/swelling)

What’s happening behind the eye?

There is no inflammation (or swelling) behind the eye

The muscle and fat tissue are not swollen and therefore do not press against the eye or on the optic nerve, allowing for normal vision
Eye during periods of high inflammation

What's happening behind the eye?

Muscle and fat tissue become inflamed and swell

The swelling makes the eye bulge forward. The swelling can cause double vision and misaligned eyes (eyes that don’t work together), which can make it harder to read words on a page, and can cause problems with depth perception and balance. In some cases, the swelling can even threaten eyesight

The eyelids can also be pulled back (you may hear your doctor call this “eyelid retraction”). This exposes more of the eye than normal, which can lead to other symptoms such as dry eyes

Over time, scarring (also known as “fibrosis” [fahy-broh-sis]) can take place

What’s happening in front of the eye or visible changes?

Visible changes appear, such as redness, swelling, lid retraction, misaligned eyes (eyes that don't work together), and/or bulging eyes. Your doctor may refer to this bulging as proptosis (prop-toe-sis) or exophthalmos (ek-sof-thal- muhs)

How your eyes might feel?

You may experience eye pain, eye pressure, itchy eyes, and/or vision changes

How is it treated?

Lubricating eye drops/gel—may help provide relief from dry, gritty eyes

Prism lenses—a feature installed in eyeglasses to help with double vision

Steroids

Radiation therapy (also called orbital radiotherapy)—often used together with steroids to help reduce swelling and double vision

There is also a different way to treat TED. Learn about this treatment option for TED.
Eye with long-term damage

What’s happening behind the eye?

Scar tissue that began forming early on continues to cause damage to the eyes

How long does Thyroid Eye Disease last?

Symptoms can still be present, years after you first experience TED symptoms. If left untreated, the scar tissue behind the eye can cause symptoms such as bulging eyes (proptosis), double vision (diplopia), misaligned eyes, eye pain, eye pressure, and other symptoms may also flare

How is it treated?

Prism lenses—a feature installed in eyeglasses to help with double vision

If your eye has long-term damage, one or more surgeries are often used to correct any symptoms that are still there

Surgery can reduce how much the eyes bulge, and can also correct double vision and correct misaligned eyes, called strabismus (struh-biz-muss)

Surgery can also fix changes to the eyelids and other changes affecting how the eyes and face appear. Learn more about surgery for TED

There is a different way to treat TED. Learn about this treatment option

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When you first develop Thyroid Eye Disease, you may notice changes in symptoms

What are the early signs and symptoms of Thyroid Eye Disease?

You may notice these changes that can affect your appearance and visual function:

Redness
Swelling
Dry, gritty eyes
Eye bulging
Double vision

Misaligned eyes or eyes that don’t work
together
Sensitivity to light
Eye pain and pressure

The changes that TED causes to your eyes can impact you emotionally, making you feel anxious or depressed. You can use this tool to help have a conversation with your doctor about all the ways TED impacts your life.

Learn more about the symptoms and signs of TED as well as the impact it can have on your emotional well-being.

Does Thyroid Eye Disease go away?

Thyroid Eye Disease signs and symptoms may decrease over time, but that does not mean it goes away. It can change over time, making it difficult to diagnose. TED affects everyone differently, which is why symptoms can appear at any time and feel or look differently with each person.

Over time, inflammation can cause scar tissue to build up. If left untreated, this can cause damage to the eyes, and extend or prolong the symptoms.

Early treatment can help prevent damage, but treatment later in the course of TED may still help.

The longer that TED goes untreated, the more likely it is for serious damage to happen to your eyes. While starting treatment as soon as possible is recommended to prevent further damage, patients who have had symptoms of TED for years may also benefit from treatment.

Learn about a treatment option for TED.

Having TED under control can help with flares. Flares can also occur after treatment. Learn about risk factors and potential triggers that can cause your TED to flare by using the Triggers and Flares Tool.

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What happens during Thyroid Eye Disease?

Learn what is happening to your eyes with TED

What is happening to the eye during TED

Healthy Eye

Eye during periods of high inflammation

Eye with long-term damage

When you first develop Thyroid Eye Disease, you may notice changes in symptoms

What are the early signs and symptoms of Thyroid Eye Disease?

You may notice these changes that can affect your appearance and visual function:

Does Thyroid Eye Disease go away?

Early treatment can help prevent damage, but treatment later in the course of TED may still help.

Get treatment for TED as early as possible to help prevent further eye damage.

TED is rare and requires an expert doctor