Medically reviewed by Raymond Douglas, MD, Ph.D., Cedars-Sinai
November 14-20, 2022 is Thyroid Eye Disease Awareness Week.
What is Thyroid Eye Disease (TED)?
Thyroid Eye Disease, or TED, is an autoimmune disorder that causes inflammation in the eye muscles, eyelids, tear ducts, and fatty tissue behind the eye. TED is also sometimes referred to as Graves’ ophthalmopathy or Graves’ eye disease. This is because TED most commonly occurs as part of Graves’ disease — an autoimmune condition that causes your immune system to attack the healthy tissues of your thyroid, skin, and eyes.
If you have Graves’ disease, you have an increased risk of developing thyroid eye disease. But TED is a rare disease and is different from Graves’ disease and requires different treatment. Graves’ disease is the most common cause of an overactive thyroid, which is when your body produces too much thyroid hormone. TED can also occur with hypothyroidism, where your body doesn’t produce enough thyroid hormone, but this is much less common. As thyroid hormone levels rise and fall, it can make your TED symptoms worse. Thyroid eye disorders are more common in women but are often more severe in men.
Stages of Thyroid Eye Disease (TED)
There are two phases of TED: active (also called acute) and inactive (also called chronic). TED begins with an active phase when symptoms suddenly appear. This phase can last anywhere from 6 months to 2 years. During the inactive phase, most symptoms tend to improve, but this is only temporary. During the inactive phase, scar tissue can form in the eyelid and eye muscle.
What Can Make Thyroid Eye Disease (TED) Worse?
Certain factors can trigger symptoms or cause flare-ups.
Smoking, fluctuating hormones, such as B. in pregnancystresseye trauma or surgeryother autoimmune diseases such as type 1 diabetes, lupus or rheumatoid arthritissteroid use
What are the Symptoms of Thyroid Eye Disease (TED)?
TED is a serious illness that can get worse over time. Most people with a thyroid disorder like Graves’ disease notice eye symptoms within the first 6 months. These symptoms can include:
Dry, itchy or gritty eyes Watering or redness of the eyes Pain behind the eye Swollen skin around the eyes or eyelid swelling Double vision Misalignment of the eyes or eyes that do not match Protruding eyes (proptosis or exophthalmos) Sensitivity to light
You may also have more serious symptoms, such as B. Inability to move your eyes or eyelids well, not being able to close your eyes fully or, in rare cases, loss of vision. This can affect quality of life as it can affect your ability to drive, read and work, and affect your emotional well-being.
How is Thyroid Eye Disease (TED) Diagnosed?
Sometimes your HCP can make a TED diagnosis based on your symptoms alone. To get a diagnosis of thyroid eye disease, you need a physical exam as well as an eye exam. You may also have blood drawn to check the status of your thyroid, along with eye tests and eyelid measurements.
It may require visits to more than one HCP to get a TED diagnosis. You may be referred to an eye doctor who specializes in eye and vision problems, particularly a thyroid eye disease specialist with training and experience treating TED. A referral to an endocrinologist, which is a doctor who treats hormone problems, may also be recommended to help you manage your thyroid condition.
Sometimes the symptoms of TED, such as dry, red, and irritated eyes, can be mistaken for allergies. Tell your HCP all your symptoms and medical history so the diagnosis is not delayed.
Managing the Symptoms of Thyroid Eye Disease (TED).
Although TED is not considered curable, there are treatments that can help manage your symptoms. The longer TED is left untreated, the more likely serious damage can occur. Treatment is often started in the acute phase, but can also help in the chronic phase.
At home, you can soothe your dry or irritated eyes with cool compresses or lubricating eye drops. Sunglasses can help protect your eyes from the sun and wind. To relieve swelling and pressure near or in your eyes, try sleeping with your head elevated.
Certain medications can help with eye swelling, such as: B. Steroid drugs. There are also newer prescription IV fluids that can help relieve symptoms.
If your TED symptoms are severe, your HCP may recommend surgery. Orbital decompression can be done if you have bulging eyes. This surgery helps enlarge the eye socket to relieve pressure in your eyes. Eyelid surgery can also be performed if your eyelids are pulled back too much. This will help bring them back to their normal position.
If you are concerned that you may have thyroid eye disease, speak to your HCP. They can work with you to create a treatment plan that works for you.
This resource was created with support from Horizon.
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