Thyroid eye disease (TED), also known as Graves’ orbitopathy or thyroid-associated ophthalmopathy, is an autoimmune inflammatory disorder. The immune system mistakenly attacks the tissues around the eyes (the orbit and periorbital tissues), causing swelling, pain, and changes in appearance and vision.1-6
TED most often occurs in people who have Graves’ disease and up to 40% of people with Graves’ disease develop TED. However, TED can also affect 3–5% of people with Hashimoto thyroiditis (an underactive thyroid condition) and even some people whose thyroid function is completely normal.1-6
The thyroid is a butterfly-shaped gland located at the base of the neck. The thyroid is part of the endocrine system, the network of glands that secrete hormones that regulate the chemical processes (metabolism) that influence the body’s activities as well as regulating the heart rate, body temperature and blood pressure. Graves’ disease is characterized by abnormal enlargement of the thyroid (goiter) and increased secretion of thyroid hormone (hyperthyroidism).
The disorder most commonly appears between the ages of 30 and 50, though it can occur at any age. It affects women far more often than men. In the United States, thyroid eye disease (TED), as a group, is not considered a rare disorder. However, certain variants of TED, including euthyroid Graves’ orbitopathy and Graves’ orbitopathy associated with thyroid dermopathy or acropachy, are considered rare. 1, 2, 5
The most common signs include upper eyelid retraction (present in over 90% of people with TED), bulging eyes (proptosis), swelling around the eyes, double vision (diplopia), and eye pain. In severe cases, pressure on the optic nerve, the nerve that carries visual information to the brain, can threaten sight. 4, 5, 7, 8
TED typically passes through an active inflammatory phase, lasting one to two years or more, before settling into a quieter phase. Even so, some problems such as proptosis and double vision often persist without treatment, and up to 50% of people are left with lasting effects.7, 9, 10
Effective treatments are available. These range from steroid medicines and targeted biologic therapies, including the FDA-approved medications teprotumumab and veligrotug, to surgery for more severe or lasting disease. Quitting smoking and keeping thyroid hormone levels well controlled are important steps that can reduce the risk of the disease getting worse. 2, 11-16
Although relatively infrequent, TED does not currently fulfill the main criterion for being defined as a rare disease, but several variants of the disease are considered rare diseases.
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