How Common is Thyroid Eye Disease?

Thyroid eye disease (TED) is a rare autoimmune condition affecting the eyes and tissues around the eyes.¹

With an autoimmune condition, the body creates proteins that attack healthy tissue instead of germs. With TED, the body attacks tissues around the eye, including:²

• Eye muscles
• Eyelids
• Tear glands
• Fatty tissues

TED causes the eyes and the tissues around them to become swollen and irritated. Inflammation and irritation are progressive, with an active phase and an inactive phase. Some symptoms include:^2,3

• Eyelids pulling back (retraction)
• Bulging eyes (proptosis, prop-toe-sis)
• Sensitivity to light
• Vision changes
• Eye pain and pressure
• Misaligned eyes (strabismus, struh-biz-miss)

Who gets TED?

TED occurs more often in women than in men. For every 100,000 people, 16 women and about 3 men have TED. When men do have TED, they tend to have a more severe form.¹

Most people with TED have an overactive thyroid gland (hyperthyroidism). However, some people with TED may have an underactive thyroid (hypothyroidism). TED can affect those with a normal-functioning thyroid, but this only occurs in about 1 in every 100 people with TED.⁴

The relationship between TED, Graves’ disease, and ethnicity is not well known. Graves’ disease is more common in Black and Asian people than in white people. This may be because of genes and different environments, but doctors are not sure.^5,6

Is it genetic?

Like many autoimmune conditions, research shows that people who develop TED may have inherited genes that make them more likely to develop an autoimmune condition.¹

Family history of TED or other thyroid disorders appears to increase the risk of developing TED. Between 4 and 5 out of every 10 people with thyroid disorders report having a family member with a thyroid disorder.⁷

I have Graves’ disease. Will I get thyroid eye disease?

Not necessarily. Both Graves’ and TED are caused by the same harmful antibody attacking various parts of the body. However, neither condition causes the other.¹

Up to half of those with Graves’ disease will develop TED. About 1 in 10 people will develop TED without ever having Graves’ disease.⁷

The severity of both conditions is also unrelated. If you have a severe form of either disease, this does not mean you have a severe form of the other disease.²

Can I prevent it?

In general, you cannot prevent TED. However, if you smoke, you are 8 times more likely to get TED. If you smoke, talk to your doctor about ways to quit. Secondhand smoke also increases your risk of getting TED and should be avoided.⁷

Radioiodine treatment is sometimes used as a treatment for Graves’ disease or overactive thyroid. Symptoms of TED may worsen after this treatment. Talk to your doctor about which treatment choice is best for you and your condition.⁷

Does it go away?

TED is a chronic disease, meaning it generally lasts a person’s whole life. Symptoms of TED may slow down over time, but this does not mean the disease goes away. Even if you are in the inactive phase of TED, the disease is still there. It is possible for TED to flare up and for your symptoms to return.⁸

Early treatment for TED is best to prevent severe complications. However, treatment may still help later in the course of the disease.⁸

While vision problems might occur with TED, only about 1 to 2 out of 10 people have sight-threatening disease.³