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If you have Graves’ disease or another thyroid disorder, you may have heard of the eye condition known as Thyroid Eye Disease (TED).
TED and Graves’ disease are both autoimmune disorders. That means your body’s immune system attacks your own tissue by mistake. In Graves’ disease, your thyroid is affected. When you have Thyroid Eye Disease, it affects the muscle and fat behind your eyes.
TED often develops in people who have Graves’ disease. But they are separate conditions that require different treatment. There’s a lot of information about these two conditions, but some of it can be confusing. Scroll on to find out what’s myth and what’s fact.
Many people think Graves’ disease and Thyroid Eye Disease (TED) are the same. That’s because people often have both diseases at the same time.
That is also because both are autoimmune diseases. This means your body’s immune system attacks a healthy part of your body by mistake.
If you have Graves’ disease, your body’s immune system attacks the thyroid. If you have TED, your body’s immune system attacks the tissue behind your eyes. This can cause a number of different changes to your eyes.
TED is often called by different names containing the word Graves’ or thyroid, including:
Get to know the symptoms of TED so you know what to watch for.
While it’s true that many people are diagnosed with Graves’ before being diagnosed with Thyroid Eye Disease (TED), it’s not always the case. In fact, about 1 in 10 people with TED develop it without having Graves’ disease.
It’s also not uncommon for people to be diagnosed with TED before, during, or even after getting diagnosed with Graves’ disease.
People diagnosed with TED may also be diagnosed with a different type of thyroid condition called Hashimoto’s disease or Hashimoto’s hypothyroidism (high-poe-thigh-roid-izm).
Get answers about TED and help finding a TED Specialist.
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Nurse Advocates do not provide individual patient care or medical advice. After speaking with a Nurse Advocate, be sure to talk to your doctor about your condition and treatment options.
Although “thyroid” is in the name, Thyroid Eye Disease (TED) is an autoimmune condition that affects the muscle and fat tissue behind your eyes, not your thyroid. It causes this tissue to swell, which can make your eyes bulge and cause other symptoms.
Learn the common symptoms of TED
Unlike TED, Graves’ disease affects the thyroid, causing its own set of changes, such as a fast or irregular heartbeat or anxiety.
Learn more about Graves’ disease symptoms
Hashimoto’s disease also affects the thyroid and has its own set of common symptoms.
Medicine for Graves’ disease won’t work for Thyroid Eye Disease (TED), and medicine for TED won’t work for Graves’ disease. That’s because TED and Graves’ disease are different conditions and need different medicines.
Graves’ disease affects the thyroid, while TED affects the eyes. So, for Graves’ disease, you should see a doctor who specializes in the thyroid: an endocrinologist. For Thyroid Eye Disease, you should contact a Thyroid Eye Disease Specialist, who is usually an ophthalmologist with advanced training and experience treating TED.
If you have TED, there’s a treatment option available that doesn’t require steroids or surgery.
Thyroid Eye Disease (TED) is a unique and rare eye condition, and not all doctors are used to treating it. That’s why it’s important that you see a doctor who has the right experience—a TED Specialist.
TED Specialists are ophthalmologists who usually have advanced training, such as oculoplastic surgeons, neuro- ophthalmologists, and strabismus surgeons.
While there are about 20,000 eye doctors in the US, most are not used to seeing TED patients. TED Specialists have advanced training in specific types of eye and vision care.
Learn more about TED Specialists
TED is rare and requires an expert doctor
Make sure you contact a TED Specialist to get the right kind of care.
Graves’ disease and Thyroid Eye Disease (TED) affect different parts of the body. Graves’ disease affects the thyroid and should be managed by an endocrinologist, who is an expert in treating thyroid issues.
TED is a separate disease that affects the eyes and should be managed by a doctor experienced in treating it: a TED Specialist. There are a few different types of eye doctors who can be TED Specialists.
If you have both conditions, your endocrinologist and your TED Specialist should stay in regular contact with each other. They need to work together to make the best treatment plan for you.
If you suspect you may have Thyroid Eye Disease, see a TED Specialist and ask for a baseline eye exam.
Thyroid Eye Disease (TED) is an ongoing condition with 2 phases. If left untreated, TED may get worse over time.
Phase 1: “Acute” TED (also called “Active” TED)
During the “acute” phase, symptoms appear suddenly and can get worse quickly. Inflammation (redness and swelling) and scarring can start to damage your eyes. Because of this damage, you may notice symptoms like eye pain, redness, swelling, eye bulging, double vision, and misaligned eyes. The acute phase usually lasts between 6 months to 3 years.
Phase 2: “Chronic” TED (also called “Inactive” TED)
Over time, TED changes to the “chronic” phase where scarring and damage continue. During this phase, some symptoms may get better—like redness and swelling. But others may not go away—like eye bulging, double vision, misaligned eyes and eye pain. If left untreated, some symptoms may return, or “flare up.”
Spot TED symptoms, avoid serious damage
Keeping track of your symptoms––and talking with your doctor right away about any changes––can have a big impact. Speak up for the care you deserve.
