Active Thyroid Eye Disease (TED) can affect you in many ways, like how you look, see, and feel. Some changes may happen slowly, while other changes may develop quickly. Active TED affects everyone differently.
It’s important to remember that any change—no matter how big or small—needs to be taken seriously. The sooner you let your doctor know, the sooner he/she can make a difference in your care. Medicines have only been shown to help signs and symptoms during Active TED.
Below are the Top 10 signs and symptoms of Active TED to look out for.
Use the A.C.T.I.V.E. Symptom Tracker to help track symptoms and share them with your doctor
Your eyelid may be pulled back so that more of your eye is showing than normal. You may also find it hard to close your eyes all the way.
Your eyelids may look red and swollen. At first, you or your doctor may think this is because of allergies or an infection. Your doctor may refer to this change as eyelid edema (ih-dee-muh).
Your eyes may bulge forward. This may happen in just one eye or both eyes. Your doctor may refer to this change as proptosis (prop-toe-sis) or exophthalmos (ek-sof-thal-muhs). During an examination, your doctor may measure the amount of eye bulging using a ruler or a special instrument called an exophthalmometer (ek-sof-thuhl-mom-i-ter).
Your eyes may feel dry or sandy. It may also feel like there is something stuck in your eye.
Your eyes may look red or bloodshot. They may also look swollen. At first, these changes may be confused with allergies or an infection. Your doctor may refer to these changes as erythema (er-uh-thee-muh) or chemosis (key-moe-sis).
Your eyes are too watery or you're tearing up too much.
You may feel pain in, around, or behind your eye. You may feel pressure behind or around your eye or get headaches.
Your eyes may become extra sensitive to light. Your doctor may refer to this change as photophobia (foh-tuh-foh-bee-uh).
Images may appear blurry or out of focus.
You may see 2 images of the same object. Your doctor may refer to this change as diplopia (dih-ploh-pee-uh).
Looking in the mirror, you may notice that the position of your eyes doesn’t match or they are misaligned. This can cause other changes, like double vision.
You may notice colors look duller or washed out. In rare cases, you may lose all color in your vision. Losing color vision can also mean that damage is happening to your optic nerve. This only happens in about 5% of cases, but it can mean your sight is threatened. You should talk to your doctor right away if you notice color vision changes.
In some cases, TED can lead to blindness.
Be sure to check your eyes frequently, maybe pick a day of the week. If you spot changes, speak to your doctor right away. Medicines have only been shown to help signs and symptoms during Active TED. Be sure to download the symptom tracker.
Have Graves’ disease and are experiencing eye symptoms? Find a TED specialist near you and request a baseline eye exam.