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Your Guide to Thyroid Eye Disease

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A Doctor's Perspective on Thyroid Eye Disease

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Dealing with the symptoms of thyroid eye disease can be stressful and frightening, which is why it’s important to find the right ophthalmologist to guide you through the treatment process.Dr. Catherine Y. Liu, MD, an ophthalmologist at UC San Diego Health’s Shiley Eye Institute, explains what she wants her patients to know about thyroid eye disease.

1. Q: What is thyroid eye disease?

A: Thyroid eye disease (TED) is an autoimmune disease that can cause profound alterations to the eye and the muscles around it. It can be really disfiguring and reduce a person’s quality of life and their ability to function normally. Common symptoms include double vision, bulging of the eye, swelling around the eye, changes of the eyelid shape, eye pain, and even vision loss. About 10–20% of patients have severe cases where the vision is threatened, which can be really scary. Fortunately, we have effective treatment options for this condition, especially when it’s found and treated early. Thyroid eye disease has a few names; you might hear it referred to as Graves’ eye disease, Graves’ ophthalmopathy, or thyroid-associated orbitopathy. The name changes because our understanding of the disease has changed over time, and we’re still learning more about it every day.

2. Q: How is the thyroid related to thyroid eye disease?

A: Thyroid eye disease is associated with the thyroid gland, but researchers continue to look into the exact link. Most people who develop thyroid eye disease have either an underfunctioning or overfunctioning thyroid, so it’s helpful to understand its role in the body. The thyroid gland produces thyroid hormones, which are important for a number of processes in your body, including metabolism. When your thyroid doesn’t produce enough thyroid hormone, this is known as hypothyroidism, and your metabolism will slow down, causing symptoms like weight gain, fatigue, weakness, and hair loss, among others.

When your thyroid produces too much thyroid hormone, this is called hyperthyroidism, and your metabolism will speed up, leading to symptoms like weight loss, excessive sweating, increased heart rate, and others. An autoimmune condition known as Graves’ disease can lead to hyperthyroidism; if you have Graves’ disease, your immune system will mistakenly attack your thyroid gland, causing it to overproduce thyroid hormones. And sometimes, the immune system also attacks the tissues around the eye, possibly because these tissues express proteins that mimic those in the thyroid gland. This connection is why sometimes thyroid eye disease is referred to as Graves’ eye disease or Graves’ ophthalmopathy. However, it’s important to note that not everyone with Graves’ develops thyroid eye disease, and not everyone with thyroid eye disease has Graves’ disease.

Ninety percent of the time, thyroid eye disease is associated with hyperthyroidism, but it can also occur in people with hypothyroidism and even in patients who have a perfectly normal thyroid. We don’t yet understand why exactly thyroid eye disease occurs, and its exact connection with the thyroid gland, but we’re learning more all the time.

3. Q: What’s it like to have thyroid eye disease?

A: When your immune system attacks the muscles and tissues around your eyes, this causes a lot of inflammation. In some cases, this inflammation is mild, and so the symptoms are mild. This can lead to things like red eyes and eyelids, and eye puffiness. When thyroid eye disease is more severe, though, the tissue in the eye socket can expand, leading to bulging of the eyes, a wide open “stare” appearance (known as eyelid retraction), difficulty closing your eyes, dry eyes, double vision, and loss of vision.

In addition to the physical impact, one aspect we cannot overlook is the emotional and psychological component of this disease. That’s why caring for a thyroid eye disease patient is a team effort; it’s crucial to manage every part of the disease and to recognize how disruptive it can be to someone’s life.

4. Q: How do you treat thyroid eye disease?

A: Treatment is really individualized because thyroid eye disease is different for everyone. First of all, if you have thyroid eye disease and you smoke, try to quit. Smoking increases the risk of the disease as well as the severity, so the best step to take is to drop the cigarettes entirely with help from your doctor. If you’re experiencing double vision, we can prescribe prisms, which are special lenses for eyeglasses that align the two images you’re seeing so your vision returns to normal. If dry eye is one of your main symptoms, I’ll recommend an artificial tear and ointment regimen. When inflammation is high during the early phase of the disease, known as the active phase, I might prescribe steroids to bring those levels down, which can reduce eye redness, irritation, and puffiness, and prevent more changes from occurring. But steroids can only be used short-term and also come with side effects.

In addition to steroids, we have a few other drugs we can try, and fortunately, a new medication, teprotumumab (Tepezza),  was recently approved by the Food and Drug Administration (FDA). So far, it’s the only drug specifically indicated to treat thyroid eye disease, and it has the potential to change the course of the disease. It’s a human monoclonal antibody, and it works on a particular cell type found in orbital tissue. These cells are thought to play a key role in inflammation and tissue expansion in thyroid eye disease, but when the antibody attaches to it, inflammation is suppressed. That means people may notice improvements in eye bulging and inflammatory changes around the eyes, which is really exciting. It’s new, but it’s a very promising treatment, and it’s changing how we approach thyroid eye disease care.

We also have several surgical options to help return the eye back to a more normal appearance and function. Surgery can be intimidating for many patients, but I assure them these procedures are very common with rare complications, and my team and I perform many surgeries every week.

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THIS CONTENT DOES NOT PROVIDE MEDICAL ADVICE. This content is provided for informational purposes and reflects the opinions of the author. It is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified healthcare professional regarding your health. If you think you may have a medical emergency, contact your doctor immediately or call 911.