What Is Thyroid Eye Disease?
Thyroid eye disease (TED) is an immune system disorder that affects the way your eyes look and work. The immune system doesn’t function right in people with this condition. That leads to inflammation that causes the muscles and tissues around your eyes to puff up.
In most people, the symptoms of TED are mild. But the condition can be more serious. Often, your eyes will feel dry and irritated. You might get swelling that pushes your eyes forward or affects how you see. It’s rare, but you could even lose your eyesight.
Some treatments can ease your symptoms and protect your vision. You might need mental health support and social support as well.
You may have heard thyroid eye disease called Graves’ ophthalmopathy, Graves’ orbitopathy, or Graves' eye disease, but those terms are no longer used.
What Causes Thyroid Eye Disease?
Your immune system protects you from germs and other things that can make you sick. With thyroid eye disease, your body mistakes your own tissue in and around your eyes for a foreign invader. Your immune system then sends out cells called antibodies that attack the fat, muscle, and other tissues in and around your eye.
Experts can’t say for sure what triggers this immune response in some people. But it's often related to Graves' disease, an autoimmune disease that can cause abnormal levels of thyroid hormones. Researchers are still studying all the causes.
Thyroid Eye Disease Symptoms
Thyroid eye disease can make your eyes bulge, as it affects your orbit — the area in your skull where your eyeballs sit. Immune cells can cause inflammation, making the muscles, fat, and other tissue in this area expand.
If there’s a lot of swelling, you may not be able to close your eyes all the way. That could lead to an ulcer, or sore, on your cornea, which is the clear domed-shaped covering on the front of your eye.
You may also get other symptoms, such as:
- Redness in the whites of your eyes
- Irritation, like there’s dirt in your eye
- Bags under your eyes
- Swelling or fullness in your upper eyelids
- Eyelids that pull back, or retract, making the whites of your eyes more visible
- Pain behind your eyes
- Pain when you move your eyes
- Dry or watery eyes
- Double vision
- Light sensitivity
TED symptoms usually affect both eyes, but you can get them in just one eye.
Stages of Thyroid Eye Disease
Thyroid eye disease has two stages:
Active, or progressive, phase. During this first phase, symptoms such as pain, swelling, redness, and bulging eyes can keep worsening. This phase usually lasts from 6 months to 3 years. In rare cases, it can last longer. It's an important time to seek treatment to control your symptoms and prevent vision problems.
Inactive, chronic, or stable phase. Once the inflammation around your eyes stops, your symptoms should stop worsening. But some of the symptoms, such as bulging eyes and double vision, may linger. You may need different kinds of treatment at this point. In about 15% of cases, active symptoms return after a stable phase.
Who Gets TED?
The condition happens most often in people with hyperthyroidism (too much thyroid hormone) due to Graves' disease. Less commonly, it can happen if you have an underactive thyroid. Rarely, you can get it if you have normal thyroid levels.
TED is more common in women and people assigned female at birth. Also, you are more likely to develop it if you:
- Have family members with thyroid eye disease
- Have low levels of the mineral selenium in your blood
- Smoke
TED and Graves’ Disease
Graves’ disease is an immune system disorder that causes your body to attack your thyroid gland, located in the front of your neck. The attack triggers the gland to make extra thyroid hormone, which can cause problems all over your body.
About 90% of people with TED have Graves' disease, and about one-third of people with Graves' disease will develop TED. It can happen before, during, or after Graves' disease, but most often shows up within the first year. The disorders may happen together because the tissue around your eyes has proteins that are similar to the kind in your thyroid gland, leading to the same kind of attack by your immune system.
If you have Graves’ disease, having other risk factors such as smoking and a family history of TED can raise your risks further. So can getting radioactive iodine, a treatment used for overactive thyroid.
Thyroid Eye Disease Diagnosis
To diagnose TED, your doctor will start by examining your eyes and testing your vision. They may do some tests to confirm the diagnosis, including:
- Blood tests for your thyroid hormone and antibody levels
- Imaging tests of your eyes with ultrasound, CT, or MRI scan
In addition, they may determine the stage and severity of TED by considering how much your eyes bulge out and whether you have:
- Pain when your eyes move
- Red eyelids or eyeballs
- Decreased eye movement
- Decreased vision
The more symptoms you have, the more likely the disease is still in the active phase and will respond to medicines.
TED Treatments
Your symptoms might go away on their own. But your doctor can give you medicine or suggest at-home methods to help ease swelling and soothe your eyes. If those aren’t enough, you may eventually need surgery.
Treatment for thyroid eye disease is different from what you get for Graves’ disease. While getting your thyroid levels back to normal is important, your eye problems can show up or persist after you treat your thyroid.
Drug treatments can include:
- Nonprescription eye drops to treat dryness and irritation
- Prescription medicines to lower inflammation, such as prednisone and other steroids
- A prescription medicine approved for TED, called teprotumumab (Tepezza)
In addition, you might try lifestyle changes and home remedies, such as:
- Quitting smoking (the most important change you can make because smoking makes TED worse)
- Putting cool compresses on your eyes
- Taking selenium supplements, if approved by your doctor
- Taping your eyelids shut, if needed, when you sleep
- Keeping your head higher than your body when you lie down
- Wearing prism glasses to reduce double vision
- Wearing sunglasses to help with light sensitivity
Once you are past the active stage of thyroid eye disease and the inflammation has lowered, medications are unlikely to help. But you might consider surgery to correct any remaining problems. Surgical choices can include:
- Decompression surgery to remove some bone and tissue from behind the eye to create more space
- Eye muscle surgery, to correct severe double vision
- Eyelid surgery, to help the eyelids look and work better
For best results, you’ll need to work with a team of doctors, such as:
- A primary care doctor
- An eye care specialist (ophthalmologist or optometrist)
- A doctor who treats hormone system disorders (endocrinologist)
- Mental health counselor
Thyroid Eye Disease Complication
Most people only have mild symptoms and get relief with simple remedies, such as eye drops. But around 3%-5% of those with thyroid eye disease have serious problems, which could include vision loss from:
- Damage to optic nerves, which send vision signals to the brain
- Damage to the cornea, the clear covering at the front of the eye
- Blockages in the blood vessels of the retina
- Increased pressure in the eye, which may lead to glaucoma
Some people also have lasting, bothersome changes in appearance, such as bulging eyes or crossed eyes.
Because TED can affect your appearance and vision, it can hurt your mental health. You may feel anxious or angry. If others treat you differently because of your appearance, you might feel socially isolated. You might find it helpful to talk to others with the condition or with a mental health counselor.
Can You Prevent Thyroid Eye Disease?
While you can't prevent the underlying causes of thyroid eye disease, evidence suggests you are less likely to get it if you don't smoke. Quitting smoking can also prevent the disease from getting worse.
You may also have a better chance of keeping it mild if you:
- Manage any thyroid conditions
- Avoid or delay radioiodine treatment of your thyroid if you have active TED -- unless it's necessary, in which case your doctor will likely add steroids to your treatment
Takeaways
If you have a problem with your thyroid, and especially if you have Graves' disease, with high thyroid hormone levels, you're at risk for thyroid eye disease, or TED. In most cases, TED is mild enough to be managed with eye drops and home remedies. But when it's more serious, you have several treatment options, including medications and surgery.
Thyroid Eye Disease FAQs
What are the first signs of thyroid eye disease?
The first signs people report to doctors are often pain or discomfort in the eyes. Other signs sometimes seen early in the disease are double vision, light sensitivity, and blurred vision, though most people don't have those problems right away. Doctors also often notice what they call "lid lag" -- a delay in your upper lid moving when you look down.
Can thyroid eye disease be cured?
While the eyes return to normal in some people, others have permanent changes. There's no cure, but treatments can make a big difference. Early treatment and follow-up are important to get the best results.
Is thyroid eye disease contagious?
No, it's not contagious, so you can't get it from someone else.
Can an optometrist tell if you have thyroid eye disease?
An optometrist, who is an eye professional trained to do vision exams and detect signs of disease, may notice signs of TED. But they may refer you to medical doctors, including ophthalmologists (eye specialists) and endocrinologists (hormone specialists) to confirm the diagnosis and manage some treatments.
