Thyroid eye disease is an immune system disorder. It goes by a few other names. The immune system doesn’t function right in people with this condition. That leads to inflammation that causes the muscles and tissue around your eyes to puff up.
Thyroid eye disease can cause lots of symptoms. Some are mild while others are more serious. Often, your eyes will feel dry and “gritty.” You might get swelling that pushes your eyes forward or affects how you see. It’s rare, but you could lose your eyesight, too.
There are treatments that can ease your symptoms and protect your vision. You might need mental health support and social support, too.
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 tissue in and around your eye.
Experts can’t say for sure what triggers this immune response in some people. Researchers are still studying all the causes.
Who Gets It?
The condition happens most often in people with too much thyroid hormone, or hyperthyroidism. Less commonly, it can happen if you have an underactive thyroid. Rarely, you can get it if you have normal thyroid levels.
How Is It Linked to Graves’ Disease?
Graves’ disease is an immune system disorder that causes your body to attack your thyroid gland. The attack triggers your body into making extra thyroid hormone.
Graves’ disease doesn’t cause thyroid eye disease. But the two conditions do show up around the same time. The disorders may arise together because the tissue around your eyes may have proteins that are similar to the kind in your thyroid gland.
If you have Graves’ disease, some other risk factors might raise your chances of getting thyroid eye disease, such as:
- You smoke.
- You’re female.
- You have certain genetic factors.
- You get radioiodine treatment.
How Does It Affect the Eyes?
The condition can make your eyes bulge. That’s because it mostly affects your orbit, the area in your skull where your eyeballs sit. Immune cells can cause inflammation that make 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.
You may also get other symptoms, such as:
- Redness in the whites of your eyes
- Irritation, like there’s dirt in your eye
- Pain and pressure
- Dry or watery eyes
- Double vision
- Light sensitivity
Can You Prevent It?
Usually, there’s nothing you can do to stop thyroid eye disease from happening.
But there’s evidence that radiation treatment with radioactive iodine, a treatment for overactive thyroid, can make eye disease worse. If you have this eye disease and you need this kind of therapy, your doctor may also give you a steroid called prednisone. That can help keep the disease under control.
How Long Does It Last?
The disease acts differently in everyone. You might have inflammation that lasts from 6 months to 2 years. You may have lasting effects to your eyes even after the swelling goes down.
Are There Treatments?
Your symptoms might go away on their own. But your doctor can give you medicine, like steroids, or suggest at-home methods to help ease swelling and soothe your eyes. If those aren’t enough, you may need surgery.
Treatment for thyroid eye disease is different from what you get for Graves’ disease. Your eye problems can even show up after you treat your thyroid.
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
Does It Cause Blindness?
Most people only have mild symptoms. But around 3%-5% of those with thyroid eye disease have serious problems, which could include vision loss.