What Is Thyroid Eye Disease?
Thyroid eye disease is an autoimmune disease that inflames tissues behind the eyes. About 1 in 4 people with Graves' disease have thyroid eye disease. You may hear it called Graves' eye disease.
When you have thyroid eye disease, a problem with your immune system causes it to attack the muscles and fat around your eyes. This can lead to symptoms like pain, a gritty feeling in your eyes, and double vision.
Thyroid eye disease has two phases. During the active phase, it causes inflammation, swelling, and other symptoms. This phase lasts 2 months to 2 years.
In the inactive phase, your disease stops getting worse. But you may have symptoms like bulging eyes and double vision that are left over from the first phase.
Thyroid eye disease can sometimes change your appearance or affect your sight. Permanent vision loss can happen, but it is rare, and treatments can ease swelling and other symptoms.
What Causes Graves’ Disease and Thyroid Eye Disease?
Your immune system makes proteins called antibodies to protect you against germs. With Graves' disease, your immune system makes antibodies that mistakenly attack your thyroid gland. This kind of condition is called an autoimmune disease.
These antibodies make your thyroid grow larger and produce too much of thyroid hormone. That’s called hyperthyroidism. The extra thyroid hormone can cause symptoms including weight loss, a fast heartbeat, high blood pressure, and moodiness.
Abnormal antibodies can also attack and damage the fat and muscles around your eyes. Your eyes may become red, swollen, and pushed forward (bulging). This is thyroid eye disease.
Graves' disease sometimes runs in families. Having certain genes might increase your risk.
Smoking is another big risk factor. If you have Graves' disease and you smoke, you're twice as likely to get thyroid eye disease as someone who doesn't smoke.
What Are the Symptoms of Thyroid Eye Disease?
Symptoms of thyroid eye disease can start before, during, or after your doctor diagnoses you with Graves' disease.
Eye symptoms don't have anything to do with how severe your hyperthyroidism is. You can have very severe hyperthyroidism and mild eye symptoms, or vice versa. It's possible to have eye symptoms even if your thyroid gland isn't overactive.
Besides swollen and bulging eyes, symptoms may include:
- A feeling of grittiness or irritation in your eyes
- Redness of the white part of your eye
- Pain when you move your eyes
- Tearing or dry eye
- Eyelid swelling
- Double vision
Symptoms like these might make you worry that you'll lose your vision. But it's very rare for people with thyroid eye disease to have permanent vision loss.
How Is Thyroid Eye Disease Diagnosed?
If you know that you have Graves' disease, your doctor might recommend that you see an eye doctor. They’ll check your eyes for bulging and enlarged muscles.
These are a few other tests for thyroid eye disease:
- Vision and color vision tests
- Visual field tests
- Eyelid measurements
- Eye pressure readings
- Tests of the optic nerve
You may also need one or more of these tests:
- CT. This is a powerful X-ray that takes detailed pictures of the inside of your eye.
- MRI. This uses powerful magnets and radio waves to make pictures of your eye muscles.
- Blood test. It measures levels of thyroid hormones or antibodies in your blood.
What Should I Ask My Doctor?
When you see your doctor for follow-up visits, it's helpful to have a list of questions ready. You can also bring along a family member or friend to help you remember your questions and write down your doctor's answers.
Questions can include:
- What follow-up tests will I need to monitor my eyes?
- Who will I need to see for follow-up care?
- What types of treatments do you recommend?
- What kinds of side effects can they cause?
- How might thyroid eye disease affect my daily life?
- Should I call you when I have certain symptoms?
- What type of support is available for thyroid eye disease?
How Is Thyroid Eye Disease Treated?
Your primary care doctor or a specialist called an endocrinologist will help you manage thyroid eye disease and get your hormone levels into a normal range. An eye doctor treats symptoms of thyroid eye disease. The goal of treatment is to bring down swelling and protect your eyes.
Your doctor might recommend:
Prism glasses. You get double vision when light lands in the wrong part of your retina. Prism glasses bend light as it goes through your eye so that it lands in the right place. Wearing an eye patch is another way to treat double vision.
Tepezza. Teprotumumab-trbw (Tepezza) is the first drug approved to treat thyroid eye disease. It comes as an IV that your doctor gives you every 3 weeks. Tepezza blocks antibodies that attack tissues behind the eye and helps reduce eye bulging, double vision, and other symptoms. The most common side effects are:
- Muscle spasms
- Hair loss
- High blood sugar
Steroids. Prednisone and other steroids help bring down swelling in your eyes and treat double vision. Doctors usually prescribe these drugs for only a short time because they can have side effects like fluid buildup, high blood pressure, mood swings, and weight gain.
Radiation. This treatment, which uses beams of intense energy, reduces swelling and relieves double vision. But you can get radiation to your eyes only twice in your life, and it may have side effects like dry eyes. Radiation treatment might also slightly raise your risk for cancer.
Surgery. Some people need surgery after finishing the active phase of thyroid eye disease, if they're at risk of losing vision. These procedures treat thyroid eye disease:
- Eyelid surgery. This is a treatment for eyelids that don't close all the way, leaving your eyes dry and irritated. Surgery can move your eyelid into a different position to help it close more fully.
- Eye muscle surgery. This surgery treats double vision. The surgeon moves your eye muscle to put your eyes back into line and help you see clearly again.
- Orbital decompression surgery. If swelling has affected your vision, a surgeon can remove one of the bones behind your eye. Taking out the bone makes more space, reduces pressure in your eye, and helps move your eyes back into their original position.
How Can I Take Care of Myself?
To relieve eye pain and other symptoms at home, you can:
- Apply cool compresses. Hold a wet washcloth to your eyes to moisten them and soothe soreness.
- Use lubricating eyedrops. Artificial tears can ease some of the dryness and scratchy feeling in your eyes. You might also use a lubricating gel or ointment before bed to keep your corneas from drying out if your eyes don't fully close.
- Wear sunglasses. Thyroid eye disease can make your eyes more sensitive. Wearing sunglasses will protect them from ultraviolet (UV) light and wind.
- Sleep with your head raised. Keeping your head higher than your body can reduce swelling in your eyes.
- Cover your eyes. Use eye covers or tape your eyes closed to keep them from drying out if your eyelids don't fully close.
What Can I Expect With Thyroid Eye Disease?
You can treat most symptoms of thyroid eye disease. But it might take 2 or 3 years to get the condition under control.
Your eye doctor will monitor you often during your treatment. In between visits, let them know if you have any bothersome symptoms.
If you smoke, quitting can make your disease less severe and help your treatment work better.
How Can I Find Support?
Because thyroid eye disease can change your vision and appearance, it can have a big effect on your life. It's important to get support along with your treatment. You might start by talking to family and friends about what you’re going through.
Depression is common in people with thyroid eye disease. If you feel like you’re struggling, talk to your doctor. They can put you in touch with a mental health professional who can help.
Graves' disease support groups are another place to turn. You'll meet other people with thyroid eye disease who may have advice to help you manage your condition. You can find a support group through an organization like the Graves' Disease & Thyroid Foundation.