7 Misconceptions of Thyroid Eye Disease
- See past thyroid eye disease myths.Thyroid eye disease is known by many names: TED, Graves’ eye disease, and Graves’ ophthalmopathy, among others. It’s a rare condition that occurs when the immune system causes inflammation that makes muscle and fat grow behind the eyes, often leading to eye bulge, difficulty closing eyelids, and vision problems. In extreme cases, thyroid eye disease squeezes the optic nerve to the point of total vision loss. Get the facts on thyroid eye disease so you can seek treatment to protect your eyesight.
- Myth No. 1: You have to have an overactive thyroid to develop thyroid eye disease.An overactive thyroid (hyperthyroidism) usually causes thyroid eye disease—but not always. Up to half of those who have a type of hyperthyroidism called Grave’s disease develop thyroid eye disease. However, people who have an underactive thyroid (hypothyroidism) or whose thyroid functions normally can develop thyroid eye disease, too. A recent study showed that thyroid eye disease occurs in 6% of people who have a type of hypothyroidism called Hashimoto thyroiditis, the most common hypothyroid condition in the United States.
- Myth No. 2: There’s no specific medicine to treat thyroid eye disease.Not true—anymore. In 2020, the first drug to specifically treat thyroid eye disease was approved by the U.S. Food and Drug Administration (FDA). Teprotumumab (Tepezza) is an injectable biologic treatment that works with the body’s immune system to block the production of a certain protein in the body believed to contribute to the faulty immune response that causes thyroid eye disease. The new treatment has been shown to improve double vision, eye bulging, and quality of life in general.
- Myth No. 3: Treatment for thyroid disorders automatically treats thyroid eye disease.Thyroid disorders and thyroid eye disease have an immune system connection, but they’re different conditions with different symptoms, so treating one will not treat the other. Treatment in the active phase of thyroid eye disease (roughly the first two to three years) is also different than treatment in the stable remission phase (usually lifelong). Common treatments during the active phase are artificial tears to relieve dry eyes, eye taping to keep eyes closed at night, oral corticosteroids short-term to ease double vision, radiation to lessen swelling, and the new injectable therapy to reverse the damage. When TED symptoms have stabilized after the active phase, sometimes surgery may be needed to correct any physical changes.
- Myth No. 4: Radiation zaps thyroid eye disease for good.Radiation can be an effective way to not only lessen the swelling of thyroid eye disease, but also address double vision and prevent vision loss. Within two months of receiving radiation, most people’s thyroid eye disease symptoms improve. Some, however, experience more dryness in their eyes. You can also only be treated with radiation for thyroid eye disease twice in your life. Your doctor may recommend injections or surgery as a longer-term solution that has added benefits, including lessening pain and redness.
- Myth No. 5: Smoking is not directly related to thyroid eye disease.Smoking raises your risk of developing thyroid eye disease seven- to eight-fold. If you develop thyroid eye disease, smoking stretches out the active phase and hampers treatment effectiveness. It makes symptoms worse and increases the likelihood your optic nerve will be affected, leading to vision loss. Quitting is hard, no question, but preserving your vision is a great motivator. Ask your doctor to recommend resources to make it easier such as smoking cessation medication and nicotine replacement systems.
- Myth No. 6: If thyroid eye disease affects your appearance, you just have to accept it.For those with thyroid eye disease, teprotumumab injections can reverse physical changes, and surgical procedures can minimize the appearance of bulging eyes and re-align the position of eyelids. It is true that for some people, these treatments cannot return their appearance 100% to its pre-disease state. It’s normal for changes in how you look to lead to depression. Ask your doctor to add a psychologist to your healthcare team to help you deal with the emotional side of thyroid eye disease.
- Myth No. 7: All the ways to address thyroid eye disease are “drastic.”Talking with your doctor about thyroid eye disease doesn’t mean you’ll be signed up immediately for radiation, surgery, injections, or lifelong medication. Many people with thyroid eye disease get relief from symptoms while protecting their vision by simply wearing dark glasses in bright light or wearing special glasses with prisms or an eye patch to correct double vision. Give your doctor the chance to examine you and make an accurate diagnosis. Take treatment from there, together, step by step.