Thyroid Eye Disease (TED) is an ongoing condition that can get worse over time if left untreated. Treating TED early can help you avoid serious eye damage
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 TED Symptom Survey can help you identify symptoms of TED so you can share them with your doctor.
Symptoms of Thyroid Eye Disease (TED)
The longer TED goes untreated, the more likely serious eye damage can occur.
That’s why it’s so important to regularly check for Thyroid Eye Disease symptoms. The sooner you spot symptoms, like those listed below, the sooner you and your doctor can come up with a treatment plan.
Dry, gritty eyes
Your eyes may feel dry or sandy.
“Thyroid Eye Disease is like your eyes are full of sand, sand from the beach. That’s how dry they are.”
— LaQuilla, real TED patient
Watch LaQuilla’s story
The feeling of something stuck in your eye
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.”
Watery, teary eyes
Your eyes are too watery or you’re tearing up too much.
Red eyes
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).
Eye pain and eye pressure
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.
In one study, about 30 out of 100 people (30%) with TED had eye pain.
Sensitivity to light
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).
Blurry vision
Images may look blurry or out of focus.
In one study, about 30 out of 100 people (30%) with TED had blurry vision.
Double vision
You may see 2 images of the same object. Your doctor may refer to this change as diplopia (dih-ploh-pee-uh).
In one clinical study, about 50 out of 100 people (50%) with TED had double vision.
Bulging eyes
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 call this change proptosis (prop-toe-sis) or exophthalmos (ek-sof-thal-muhs). During an exam, your doctor may measure the amount of eye bulging using a special ruler called an exophthalmometer (ek-sof-thuhl-mom-i-ter).
In one study, about 60 out of 100 people (60%) with TED had bulging eyes.
Eyelid retraction
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.
About 90 out of 100 people (90%) with TED had retracted eyelids (eyelids that don’t close properly).
Swollen, puffy eyelids
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).
Eyes that point in different directions
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).
Color vision loss
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.
About 6 out of 100 people (6%) with TED may notice some color vision loss from damage to the optic nerve.
Vision loss
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
Watch Ron’s story
Up to 6 out of 100 people (6%) with TED may have optic nerve damage.
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.
Listen To Your Eyes
Hear actual TED patients describe the importance of listening to what their eyes were telling them in this video:
Read transcript
Why listen to your eyes? Transcript
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
It’s important to remember that TED affects everyone differently
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 in the “acute” (or “active”) phase is ideal, but treatment may still be able to help during the “chronic” (or “inactive”) phase.
Learn more about the phases of TED
If you have a thyroid condition (like Graves’ disease) and eye symptoms, talk to a TED Eye Specialist.
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