Myths and Misconceptions About Thyroid Eye Disease

Having a rare disease like thyroid eye disease (TED) can lead to questions. You might have searched for answers only to find conflicting information. Knowing the myths and truths of TED will help you better understand the disease and the best treatment options available for you.

Myth 1: Thyroid eye disease and Graves’ disease are the same condition

This common myth is not true. Both Graves’ disease and TED are autoimmune conditions. Both involve harmful antibodies that mistake the body’s healthy tissues for harmful ones. However, TED and Graves’ disease are different diseases requiring different treatment.¹

Myth 2: Only people with an overactive thyroid can get it

TED most commonly impacts those with an overactive thyroid (hyperthyroidism). However, TED can occur with underactive thyroid (hypothyroidism), though this is less common. Rarely, those with normal thyroid function (euthyroid) can also develop symptoms of TED.²

Myth 3: If you treat your thyroid dysfunction, TED will automatically get better

While keeping thyroid hormones within normal ranges might help for overall health, thyroid function and TED are not directly linked. Treatment for thyroid problems are different from the treatment needed for TED.³

Myth 4: Only women get it

About 19 out of every 100,000 people have TED. Like other autoimmune diseases, women get TED more often than 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.^4,5

Myth 5: There are no specialists who diagnose and treat it

While TED can be diagnosed by your primary doctor, it is important to find the right care team. TED requires specialized care from TED specialists. TED specialists are ophthalmologists (eye doctors and surgeons) with special expertise in diagnosing and treating your symptoms.⁶

Myth 6: “I cannot see any changes to your face.”

Signs and symptoms of TED may have a big impact on your mental well-being. This is true even if symptoms are not noticeable to others. You know yourself best. If you think your appearance has changed, it has. Gather photos of what you used to look like, and talk to your doctor about the changes you see. Ask for a second opinion if needed. You have the power to take control of your health.

It is hard when friends and family question your appearance. Decide if you want to show them photos of what you looked like before TED. Educating those closest to you about the disease and its invisible symptoms might help you cope with the struggles that TED can cause.

Myth 7: Damage is reversible

While there is treatment for TED, damage is not always reversible. In severe cases, the outer layer of the eye (cornea) can develop an open wound known as an ulcer. Also, the bundle of nerves that transmits nerve impulses from the eye to the brain for vision can be damaged if not treated appropriately.^1,7

Some people with TED need surgery to repair the damage caused by thickened, inflamed, or scarred tissue. These surgeries correct the damage but do not reverse the disease.^1,7