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If you or a loved one has recently been diagnosed with thyroid eye disease (TED), you probably have a lot of questions. Which symptoms are related to TED? What causes TED? What are the treatment options?
Learning more about TED is the first step in taking charge of your disease. Continue reading to get an overview of what you should know about TED.
TED is a condition in which inflammation damages the tissues around your eyes. The muscles around your eyes, fat, and connective tissue are most often affected by inflammation.
There are two phases of TED — the active phase and the inactive phase. During the active phase, inflammation and swelling cause symptoms that may change your appearance and threaten your vision. For most people, the active phase lasts between six months and two years.
After the active phase, TED stops progressing (getting worse). Although your condition is stable during the inactive phase, symptoms like bulging eyes and double vision may need treatment to start improving.
TED is an autoimmune disease — a condition when your immune system mistakenly attacks healthy tissue in your body. If you have TED, your immune system mistakenly attacks the tissues and muscles around your eyes. Normally, your immune system uses special proteins called antibodies to protect you from foreign invaders. In people with TED, the immune system makes antibodies that tell the immune system to attack the tissues around the eye.
TED is associated with thyroid disorders that cause abnormal levels of thyroid hormones in your blood. Your thyroid is a gland in the front of your neck that helps regulate your metabolism (how you turn food into energy) by releasing thyroid hormones.
Most often, TED is associated with Graves’ disease, an autoimmune condition that causes higher-than-normal levels of thyroid hormones (hyperthyroidism). TED is known by other names such as Graves’ eye disease, Graves’ ophthalmopathy, and Graves’ orbitopathy. It’s estimated that about half of people with Graves’ disease will develop TED. However, it’s also possible to develop TED if you have normal thyroid hormone levels (euthyroid) or low thyroid hormone levels (hypothyroidism).
The National Organization for Rare Disorders states that TED is most commonly diagnosed in middle-aged women. However, anyone can develop TED at any age. It’s estimated that between 90 and 300 people per 100,000 people have TED.
Some people may have an increased risk of developing TED. Risk factors for TED include:
Symptoms of TED are caused by the inflammation that results from your immune system attacking the tissue and muscles around your eye. TED symptoms usually affect both eyes. However, you may notice the symptoms more in one eye than the other.
Most people with Graves’ disease who develop TED do so within about six months of their diagnosis. However, TED symptoms may begin long after you’ve already been treated for Graves’ disease. Although TED is linked to Graves’ disease, the severity of TED symptoms doesn’t always match the severity of your thyroid disease.
The most common symptoms of TED include:
In severe cases, TED can cause vision loss if swelling in the muscles around your eye presses on your optic nerve (the nerve that carries signals from your eyes to your brain). Your vision can also be disrupted if you have sores on your cornea (the outer layer of your eye) from not being able to close your eyes due to bulging eyes and eyelid retraction.
TED is diagnosed by a team of health care professionals, including an ophthalmologist specializing in eye care and vision health, and an endocrinologist focusing on hormone disorders.
If you have symptoms of TED or are diagnosed with a thyroid condition like Graves’ disease, a series of tests can help confirm a TED diagnosis, including:
The goal of TED treatment is to decrease inflammation and prevent vision loss. The best treatment options for you will consider your symptoms, medical history, and personal needs.
An important part of your TED treatment is treating your thyroid condition, such as Graves’ disease. However, it’s important to know that treatments for Graves’ disease won’t help improve TED symptoms.
Some treatments for TED focus on relieving your symptoms, such as dry eyes and double vision. Other treatments work to reduce inflammation. Once your disease has stabilized, there are surgical options that can help relieve your symptoms and correct changes in your appearance caused by TED.
If you smoke, quitting smoking is an important part of your treatment because smoking can make TED more severe and interfere with how some treatments work.
Frequent use of lubricating eye drops is key to preventing damage to your cornea if you have trouble closing your eyes all the way due to bulging eyes or eyelid retraction.
To help you manage TED symptoms, your health care provider may prescribe the following treatments:
If you have mild TED symptoms, your health care provider may recommend taking a selenium supplement for six months to improve your symptoms and prevent them from getting worse.
If you have active inflammation, your health care provider may prescribe a medication to decrease inflammation, called an anti-inflammatory.
Examples of anti-inflammatory medications for TED include:
Another treatment to reduce inflammation is orbital radiation. This treatment directs energy beams at the tissues behind your eye to reduce inflammation. It may be combined with other treatments such as corticosteroids.
Surgery is a treatment option for TED once the active inflammation around your eyes improves. Surgical options can help improve TED symptoms and address cosmetic concerns.
If you have bulging eyes, your health care team may recommend orbital decompression surgery. During this surgery, extra fat and bone are removed from behind your eye so that your eye can go back to its normal position.
If you have double vision, you may have eye muscle surgery to help your eyes align and reduce double vision.
If you have trouble opening and closing your eyelids, you may have eyelid surgery to help restore your natural appearance and reduce how much your cornea is exposed.
Most people with TED have mild to moderate symptoms that only require treatment to help manage symptoms, such as lubricating eye drops. About 20 percent of people with TED need surgery, and only about 5 percent need anti-inflammatory treatments.
Learning about TED can help you manage the condition better. It’s key to know how TED works, recognize the symptoms, and understand the treatments available. Although treating related thyroid issues is important, these treatments don’t always help with TED symptoms directly, so special treatments to lessen eye inflammation are often needed. Talk with your health care team to get a treatment plan that’s right for you and learn more about your disease outlook. Don’t be shy about asking questions and getting the support you need to take care of your health.
On TEDhealthteam, the social network for people living with thyroid eye disease and their loved ones, members come together to ask questions, give advice, and share their stories with those who understand life with TED.
Are you or a family member living with TED? What questions do you have about TED? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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Christopher L. Haupert, M.D.
has 24 years of experience as a vitreoretinal surgeon with Iowa Retina Consultants.
Learn more about him here.
Amanda Jacot, PharmD
earned a Bachelor of Science in biology from the University of Texas at Austin in 2009 and a Doctor of Pharmacy from the University of Texas College of Pharmacy in 2014.
Learn more about her here.
A TEDhealthteam Member
May God take control of everything 🙏🏻
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