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Your thyroid is one of many glands in your body. This one is in your neck and looks something like a butterfly. It makes hormones that send signals to other organs to regulate your metabolism, including your blood pressure, heart rate, and temperature. When your thyroid makes too much or not enough thyroid hormone, it leads to trouble in other parts of the body. Sometimes thyroid diseases go along with trouble in your eyes for reasons that aren't fully understood.
If you have thyroid eye disease (TED), you can have inflammation and damage to the areas around your eyes. More muscles, fat, and other tissue also will grow in your eye socket. TED can sometimes happen if you have a condition that makes your thyroid too active. Sometimes it happens when you have a condition that makes your thyroid not work hard enough.
But your thyroid isn't necessarily to blame for your eye problems. The trouble in thyroid eye disease has more to do with your immune system.
How Is Thyroid Eye Disease Related to Graves' Disease?
Thyroid eye disease happens a lot in people who have Graves' disease. Graves' disease is an autoimmune disorder that affects the thyroid. It also often affects your skin and eyes. If you have Graves' disease, your thyroid will grow too big. It also will make too much thyroid hormone.
But TED and Graves' disease aren't one and the same. If you have Graves' disease, you're at more risk for getting TED. But not everyone with Graves' disease has problems with their eyes. It doesn't happen as much, but other thyroid problems also can go along with thyroid eye disease. For example, people with Hashimoto thyroiditis and an underactive thyroid sometimes get thyroid eye disease, too.
How Do the Symptoms of Thyroid Eye Disease Progress?
At least half of those who have TED will show symptoms in the active phase of the disease, which lasts about 6 months to 2 years.
After this, the disease stops progressing, but some of the symptoms can linger, including bulging eyes and vision problems.
What Causes Thyroid Eye Disease?
Thyroid eye disease is an autoimmune disorder. That means it happens because antibodies in your immune system attack healthy tissues around your eyes. Doctors and scientists aren't exactly sure why this happens in people with thyroid disease to cause thyroid eye disease. It also might develop in different people for different reasons, including:
Abnormal antibodies. People with Graves' disease make an abnormal antibody called thyroid-stimulating immunoglobulin. To your body, this antibody looks a lot like the hormone that tells your thyroid to pump out more hormones. These same antibodies also can affect the tissue around your eyes.
Why? Experts aren't sure, but tissue around your eyes and the muscles around your eyes have proteins that make it look like your thyroid. As a result, your immune system and its abnormal antibodies may attack your thyroid and your eyes.
Genetics. You may have certain genes that make you more likely to get thyroid eye disease. If you have these genes, you won't necessarily get TED. But you might be more vulnerable to getting it if other things trigger it.
Other conditions or habits. People with other disorders that affect the immune system, including type I diabetes and rheumatoid arthritis, are more likely to get thyroid eye disease. Your lifestyle also can affect your TED risk.
How Is Thyroid Eye Disease Diagnosed?
Your doctor will talk to you about your symptoms and any other medical conditions you have. A doctor may suspect TED based on a physical exam alone.
You'll have an eye exam, too. Your eye doctor may use a special device to see if your eyes are bulging and how much. If your symptoms are more severe, your doctor may order a CT scan to check your optic nerve and eye muscles. You'll also take a vision test to see how well you can see.
Many times, you'll find out you have TED after you've already gotten a diagnosis of Graves' disease or another condition that affects how your immune system and thyroid works. Your doctor may order blood tests, especially if an underlying cause for your thyroid eye disease isn't known. These blood tests measure thyroid hormone levels and antibodies.
How Is Thyroid Eye Disease Treated?
It's important to treat TED to keep it from getting worse. If left untreated, TED can lead to vision loss. Even though TED often goes along with a thyroid condition, treating the thyroid condition alone may not help your eye symptoms.
Your treatment may include your primary care doctor. But you also should see an eye specialist (ophthalmologist) and an endocrine specialist (endocrinologist) who treats people with thyroid disease. A psychologist and others can help with various aspects of living with a chronic condition.
In 2020, the FDA approved the first drug specifically for TED. It's called teprotumumab (Tepezza), and it works by blocking insulin-like growth factor 1, a protein that plays a role in the condition.
Other treatments for TED and its symptoms include:
- Corticosteroids to fight inflammation
- Medicines to stop your thyroid when it's making too much hormone
- Thyroid replacement medicine to increase thyroid hormone if yours is too low
- Beta-blockers to help with symptoms of excess thyroid hormone
- Surgery to help you close your eyes, correct double vision, or otherwise manage symptoms
Many other treatments to tackle TED in different ways are in development and testing. If you're interested in a clinical trial, ask your doctor what's available near you.
How Thyroid Eye Disease Affects Your Physical and Mental Health
Thyroid eye disease can take a toll on your physical and mental health. Many people with TED have trouble with vision. It also affects the way you look.
One study on quality of life found that people with TED often have anxiety or depression. The effects on quality of life don't always go away -- even when your eye symptoms get better with treatment.
So if you're struggling with anxiety, depression, self-esteem, or other challenges, it's important to get help for those too. Reach out to your doctor, a therapist, and others for the help and support you need.
What's the Outlook for Thyroid Eye Disease?
Most people with TED have a good outlook. If your eye condition is mild, it might get better on its own. But treatment also can help you to feel better and avoid worsening problems with your eyes and vision. You're more likely to see improvement if you're under 50 when you get this diagnosis.
If you have TED or are worried you may have TED, see a doctor. You'll want to make sure you let them know about any other medical conditions you have, changes in your vision, and other concerns.
