Frequently Asked Questions About Thyroid Eye Disease

Thyroid eye disease (TED) is a rare condition of the eyes that impacts people differently. Understanding the ins and outs of TED, including its connection to Graves’ disease, can help you navigate this complex disease and give you answers to questions you may have.

What is thyroid eye disease?

TED is a rare autoimmune disease. Autoimmune means that the body’s immune system cannot tell the difference between healthy cells and invaders like viruses, fungi, or bacteria. Because it cannot tell the difference, the body begins to attack and damage healthy cells.^1,2

Antibodies are proteins your body makes to kill germs. In TED, harmful antibodies attack various parts of the body, including the tissues around the eyes. Inflammation and damage to the muscles, connective tissues, and fat around the eyes occurs. TED can get worse over time, with an active and inactive phase.^1,3

What is Graves’ disease?

Graves’ disease is an autoimmune disease that affects 1 in every 200 people in the United States. Graves’ disease is the most common cause of overactive thyroid (hyperthyroidism).^4,5

In Graves’ disease, abnormal immune cells attack the thyroid gland. The thyroid responds by making an excess amount of thyroid hormone. Too much thyroid hormone leads to an overactive thyroid.^4,5

What is the connection to Graves’ disease?

Graves’ disease affects 1 in every 200 people in the United States. Up to half of those with Graves’ disease develop TED. Despite this link, TED and Graves’ disease are separate conditions requiring different treatment.^4-6

In 8 to 9 out of every 10 cases, TED is caused by an overactive thyroid. This is the result of hyperthyroidism or Graves’ disease.⁷

However, about 1 in 10 people with TED have lower thyroid function or hypothyroidism. The most common cause of hypothyroidism in the United States is Hashimoto’s thyroiditis. Like Graves’ disease, Hashimoto’s thyroiditis has harmful antibodies that attack the thyroid.⁷

Most people with TED will have either too much or too little thyroid hormone. However, about 1 in 100 people with TED have a normal-functioning thyroid (euthyroid).⁷

What are the different names for it?

Thyroid eye disease is called many different names, including:⁸

• Graves’ eye disease
• Graves’ ophthalmology (GO)
• Graves’ orbitopathy
• Thyroid-associated ophthalmology (TAO)
• Thyroid orbitopathy

TED and Graves’ disease are separate conditions. The different names for TED adds to the confusion that both conditions may occur together but are not necessarily caused by the other.¹

What is my chance of developing it?

About 19 out of every 100,000 people have TED. TED occurs more often in women than in men. However, men are more likely to have a severe form of TED than women. The disease is most likely to occur in middle age but can occur at any age. TED is more rare in children.^9,10

What are the symptoms?

Symptoms of TED include:^1,11

• Redness of the eyes and eyelids
• Watery, dry, or gritty eyes
• Pain in the eye, especially when looking up, down, or to the side
• Intolerance or pain with bright lights
• Difficulty moving the eyes
• Eyelid swelling

Can I prevent it?

In general, TED cannot be prevented. However, your risk of TED is 7 to 8 times greater if you smoke. If you smoke, talk to your doctor about ways to quit.⁶

Avoiding extreme fluctuations in your thyroid hormones might help prevent TED, though this is not always the case. Talk to your doctor about your treatment options if you have thyroid dysfunction.¹¹

What treatments are available?

There are treatments available for TED. The treatments most commonly used for the different phases of TED include:^1,12

• Steroids
• Monoclonal antibody drugs
• Botox
• Radiotherapy
• Surgery
• Supportive treatments

What if my symptoms get worse?

Fewer than 1 out of 5 people with TED will develop severe symptoms, including:¹¹

• Double vision (diplopia, dip-low-pee-uh)
• An open sore on the surface of the front of the eye (corneal ulcer)

Rarely, swelling from TED can lead to squeezing of the bundle of nerves in the eye that transmits messages to the brain. This is called optic nerve compression. If this happens, loss of vision can occur. This is a medical emergency.¹¹

There is a lot that can be done for TED, from over-the-counter eye drops to surgery. TED can impact your mental and social health. Talk to your doctor about ways to manage TED to reduce complications.