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Use the TED Symptom Simulator Tool below to learn about the symptoms of TED and how they progress, or read the list of symptoms below. Thyroid Eye Disease is sometimes also referred to as Graves’ Eye Disease.
The longer TED goes untreated, the more likely serious eye damage can occur.
That’s why it’s so important to be aware of Thyroid Eye Disease symptoms. The sooner you spot symptoms, like those listed below, the sooner you and your TED Specialist can come up with a treatment plan.
It may feel like a piece of dust or dirt is stuck in your eye even though nothing is really there. Your doctor may call this feeling “foreign body sensation.”
Your eyes are too watery or you’re tearing up too much.
Your eyes and eyelids may look red or bloodshot. 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).
You may feel pain in, around, or behind your eye; including pain when looking up, down, or sideways.
You may even feel pressure behind or around your eye. This pressure may also give you headaches.
Your eyes may become extra sensitive to light. This means that you may find sunlight or bright indoor light to be uncomfortable or even painful. Your doctor may refer to this change as photophobia (fow-tow-fow-bee-uh).
Images may look 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).
Because of the swelling of the fat and muscle tissue behind your eyes, they may bulge forward. This can happen to just one eye or both eyes. Your doctor may say proptosis (prop-toe-sis) or exophthalmos (ek-sof-thal-muhs). During an exam, a TED Specialist may measure the amount of eye bulging using a special ruler called an exophthalmometer (ek-sof-thuhl-mom-i-ter).
Your eyelids look like they’ve been pulled back from where they normally are, and you may find it hard to close your eyes all the way. In some cases, you may not be able to close them at all.
Your eyelids may look puffy 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).
Looking in the mirror, you may notice that the position of your eyes doesn’t match. Eyes that are not aligned properly may cause other symptoms, such as double vision. Your doctor may refer to misaligned eyes as strabismus (strah-biz-muss).
You may notice colors don’t appear as bright as they used to. Or there’s a difference in how bright colors seem when comparing one eye to the other.
In rare cases, you could become color blind. Losing color vision can mean that your optic nerve is being damaged and that you’re at risk of losing your sight.
Talk to your doctor right away if you notice color vision changes.
In some cases, you may notice there are parts of your vision missing, or you can’t see at all. This is because TED can cause swelling that pushes down on the optic nerve. If this happens, emergency surgery may be needed to save your vision.
“The bulging and movement of the eyeballs was compressing my optic nerves. There was some question as to whether I would go completely blind.” — Ron, real TED patient
Optic nerve damage can lead to blindness, but it’s very rare for TED patients to lose their vision completely. Talk to your doctor right away if you notice vision loss.
Your eyes may feel itchy or irritated.
Hear actual TED patients describe the importance of listening to what their eyes were telling them in this video:
ALLAN: What does it mean to listen to your eyes? You know, that's a good question.
BEATRIZ: My initial reaction to the concept of listen to your eyes was that you had to turn your ears inward.
NANCY: Listen to your eyes, they're trying to tell you something. And itchy is not usually the word, it's usually red and burning and gritty. And those are not normal things, but we try to normalize things.
ALLAN: I had a difficult time initially. I woke up one morning and my eyes were starting to go double. I experienced double vision at the periphery of my eyes. So, the symptoms were right there, they were very obvious.
BEATRIZ: What I've learned to listen to, and it took a long time, is the fact that now it's something is going on that's muscular or that's in some way related to my skull or where my eyes live. So, that was a way I had to internalize it and say, okay, wait, something deeper is going on.
NANCY: If you are watching this and your eyes are basically screaming at you, they burn, they're tearing, they feel like you've been to the ocean and the sand is in them, none of that is normal and you need to listen to them and you need to really hear them.
END
While some symptoms may get better over time, others may not. It’s even possible for certain triggers, such as smoking or stress, to cause your TED to flare.
According to specialists, being treated as early as possible is ideal, but treatment may still help if you’ve had TED for years.
Learn more about what happens during TED
If you have a thyroid condition (like Graves’ disease) and eye symptoms, talk to a TED Specialist.
Get educational materials and informative emails to learn even more about living with Thyroid Eye Disease.