Thyroid Eye Disease

What is thyroid eye disease?

Thyroid eye disease (TED) is an eye disorder that causes inflammation (swelling) and damage to the tissues around the eye, including muscles, fatty tissue and connective tissue. TED is an autoimmune condition, or one that happens because your protective immune system attacks your body.

There are two phases of TED: the active or inflammatory phase and the stable phase. The active phase can last for months up to three years, while the stable phase follows when the inflammation stops.

TED is often related to Graves disease, which is also an autoimmune disease. It can affect the thyroid, eyes and skin.

Graves disease can cause hyperthyroidism, which means that your body releases too many thyroid hormones. Less commonly, Graves disease can also cause hypothyroidism, which means that your body doesn’t release enough hormones. Both can result in thyroid eye disease, but people with low levels of thyroid hormone who do have eye swelling and eyebrow hair loss tend to have severe cases of hypothyroidism.

However, thyroid eye disease can happen in people with normal levels of thyroid hormones. Thyroid conditions can also cause secondary glaucoma because of the damage to the optic nerve.

Who does thyroid eye disease affect?

Thyroid eye disease happens more often in women and people assigned female at birth (AFAB) than in men and people assigned male at birth (AMAB). This is because hyperthyroidism happens more often in people AFAB than people AMAB. The incidence of the disease is 16 per 100,000 people assigned female at birth and 2.9 per 100,000 people assigned male at birth.

The median age for being diagnosed with TED is 43 years old. However, you can be diagnosed much earlier or much later than 43.

You may be more likely to develop thyroid eye disease if you:

• Have other family members with thyroid eye disease.
• Have low levels of the mineral selenium in your blood.

One treatment for hyperthyroidism or Graves disease is radioactive iodine. This treatment can make active thyroid eye disease worse unless your provider also gives you steroids along with the iodine.

What are the signs and symptoms of thyroid eye disease?

The signs and symptoms of thyroid eye disease include:

• Dry eyes.
• Irritated eyes due to a gritty feeling.
• Watery eyes.
• Red eyes.
• Bulging eyes, also called proptosis.
• A “stare.”
• Double vision, also called diplopia.
• Difficulty closing your eyes completely. This can lead to an ulcer (sore) on your cornea.
• Vision.
• Pain behind your eyes and pain with eye movements.

Symptoms normally affect both eyes, but sometimes you may only notice symptoms in one eye.

Is thyroid eye disease contagious?

No. Thyroid eye disease isn’t contagious. You can’t catch it from anyone, and you can’t transmit it to anyone.

What tests will be done to diagnose thyroid eye disease?

A healthcare provider will be able to diagnose thyroid eye disease by doing a physical eye exam. They will be able to examine both your eyelids and your eyes.

If your healthcare provider thinks that you have thyroid eye disease, they’ll order blood tests to check if your thyroid hormone levels and antibodies are too high or too low.

Other tests your provider may request include:

• Ultrasound of the eyes.
• Computed tomography (CT).
• Magnetic resonance imaging.

How is thyroid eye disease treated?

Your provider will begin by treating you for thyroid disease if you have it. Treating thyroid diseases doesn’t treat thyroid eye disease, so your provider may suggest one or more of these therapies:

Over-the-counter medications to treat TED

Eye drops to relieve dryness and irritation are generally non-prescription. You can buy them over the counter. You should use the drops that lubricate but avoid those that take away redness.

Your provider may also suggest selenium supplements if your blood levels of this mineral are low.

A few studies have shown that drinking aloe vera juice reduced inflammation levels in some cases.

Prescription medications to treat TED

Your provider may prescribe anti-inflammatory drugs like prednisone and other systemic steroids and/or rituximab. Discuss the side effects of these treatments with your provider.

There’s also a new medicine available only for thyroid eye disease called teprotumumab (Tepezza®).

Lifestyle changes and home remedies to treat TED

The most important lifestyle change you can make is to quit smoking if you smoke. It raises your risk of developing TED by seven to eight times and makes TED’s active (inflammatory) disease phase longer. In addition, smoking decreases the effectiveness of treatment for thyroid eye disease. Other things you can do to be more comfortable include:

• Using cool compresses on your eyes.
• Wearing sunglasses.
• Keeping your head higher than your body when you lie down.
• Taking selenium supplements (after approval from your provider). Studies indicate that these may help people with mild active thyroid eye disease.
• Taping your eyelids shut when you sleep. Being unable to close your eyes can lead to dryness and a corneal ulcer, which can cause scars on your eyes and loss of vision.
• Wearing glasses with prisms to reduce double vision.
• Using a patch on one eye to reduce double vision.
• Keep your thyroid hormones level by following your health care provider’s suggestions and getting regular thyroid tests.

Surgery to treat TED

• Eyelid surgery: Tight eyelids keep your top eyelid from coming down and your bottom lid from coming up. This can lead to corneal damage. Eyelid surgery may make it easier to keep your cornea covered.
• Eye muscle surgery: Your provider may recommend surgery to move your eye muscles and help to correct double vision. You may need more than one surgery.
• Orbital decompression surgery: This surgery relieves the pressure on the optic nerve by making the eye socket larger or taking away excess tissue. The surgery lessens the bulging of the eye. If you provider recommends other surgeries (eyelid, eye muscle), orbital decompression is usually done first.

Radiation to treat TED

Your provider may suggest radiation therapy to treat the inflammation of thyroid eye disease.

How can I prevent thyroid eye disease?

You can’t prevent thyroid eye disease.

What can I expect if I have thyroid eye disease?

The outlook is good for most people with thyroid eye disease. Mild thyroid eye disease may resolve on its own, while more serious cases of TED may require a combination of therapies.

The outlook for people who are over 50 years old when diagnosed may not be as positive.

When should I see my healthcare provider?

If you have thyroid disease, Graves disease or another type of autoimmune condition, make sure you talk to your provider about your vision. Make sure you discuss any vision changes with your provider.

What causes your eyes to bulge if you have thyroid eye disease?

The muscles in your eyelids tighten up and contract. The top lid doesn’t go down far enough and the bottom lid doesn’t go up far enough. Also, the tissues in and around the eyes swell.

Can you have thyroid eye disease without having Graves disease?

Yes, you can have thyroid eye disease even if you don’t have Graves disease.

Is there a relationship between thyroid eye disease and blepharitis?

Blepharitis is another name for eyelid inflammation. It has many of the same symptoms as TED, including watery eyes, a gritty feeling in your eyes and red eyes. Blepharitis has been linked with hypothyroidism.

A note from Cleveland Clinic

Anyone can get thyroid eye disease, but it’s more likely if you have thyroid condition or Graves disease. If you notice that your vision is blurry, or that your eyes are often watery or dry or feel gritty, contact your health provider. It’s important to diagnose and treat thyroid eye disease early so you can avoid some of the damage it can cause. It’s very important to stop smoking if you do smoke. The outlook for people with TED is good.