Short answer: Thyroid eye disease (TED), also called Graves' ophthalmopathy, is an autoimmune disease that affects some people with autoimmune thyroid disease, the American Thyroid Association (ATA) says. It's most common with an overactive thyroid from Graves' disease, and it rarely shows up with normal or low thyroid levels. The National Eye Institute (NEI) names bulging eyes as the main symptom, along with dry, gritty, red or irritated eyes, puffy eyelids, double vision, sensitivity to light, and eye pain or pressure. The ATA says TED is usually mild and gets better on its own over time. On its Graves' disease page, the ATA says patients with Graves' disease who have any suggestion of eye symptoms should see an eye doctor as well as their endocrinologist. A dated record of what your eyes do gives your doctor something to work with. If your vision changes suddenly, colors look different, part of what you see goes missing, or you have sudden, severe eye pain, get urgent care.
If you've caught your reflection and thought your eyes look different, or you've rubbed at a gritty eye all week and blamed the screen, this is for you. You're allowed to take it seriously. Eye changes come and go, which is exactly why they're easy to dismiss in the moment and hard to describe two months later in an exam room.
The US bodies agree on most of the signs. Written down with dates, they become something you can hand to your doctor. For people with Graves' disease who have any suggestion of eye symptoms, the ATA names two doctors to see: an eye doctor and an endocrinologist.
What the US bodies say thyroid eye disease is
The names vary. The ATA calls it thyroid eye disease and lists Graves' ophthalmopathy and Graves' orbitopathy as other names. The NEI says "it’s also called GED, Graves’ ophthalmopathy, or thyroid eye disease (TED)." They're all describing the same thing.
NIDDK, the National Institute of Diabetes and Digestive and Kidney Diseases, says Graves' ophthalmopathy "occurs when your immune system attacks the muscles and other tissues around your eyes." The NEI says this causes swelling behind the eye sockets, which makes the eyes bulge out. Think of a drawer packed a little too full: the front can't sit flush anymore.
There are two tracks to keep apart here, your thyroid and your eyes. On its Graves' disease page, the ATA says "The severity of the eye symptoms is not related to the severity of the hyperthyroidism." NIDDK says the eye symptoms "can start before or at the same time as symptoms of hyperthyroidism", and that you can develop the eye disease even if your thyroid function is normal. So keep your own notes on your eyes, whatever your thyroid labs say. If you're still sorting out which thyroid condition is which, see Graves' vs Hashimoto's, side by side.
Osmi's daily check-in takes about a minute: you answer seven questions, or you speak with Rose, your thyroid mascot. Talk to Rose opens with one question, "How was today?", and you tell her in your own words. You answer, she files it on your dated record, the same record as your labs, cycle, and sleep. Osmi never diagnoses, treats, or prescribes.
The signs they list, as a dated eye record
The ATA, the NEI and NIDDK each publish a list. They overlap more than they differ. The American Academy of Ophthalmology (AAO) says TED symptoms can vary and may come and go. That's why it helps to write them down on the day.
| What you notice | What to write down | Which US body lists it |
|---|---|---|
| Gritty, dry or watery eyes | The date, which eye, and whether it's worse in the morning or the evening | ATA (grittiness, dry eyes, extra tearing), NEI (dry, gritty), NIDDK (gritty, irritated) |
| Sensitivity to light | When it bothered you: sunlight, screens, headlights | ATA, NEI, NIDDK |
| Red eyes or puffy eyelids | Which eye, and whether it eases over the day | ATA (puffy or red eyelids), NEI (puffy eyelids), NIDDK (puffy eyes) |
| Bulging, or a staring look | A photo, in the same light, straight on, at the same distance each time | ATA, NEI, NIDDK; the AAO describes the staring look |
| Eyelids that pull back or don't close all the way | Whether your eyes feel dry when you wake up | NEI. The ATA says eyelids that can't close fully need your doctor immediately |
| Double or blurred vision | When it happens, and where you were looking | ATA (double vision), NEI (double vision), NIDDK (blurred or double vision) |
| Pain or pressure | Behind the eye, or when you move your eyes | ATA (pain behind your eyes or with eye movement), NEI (eye pain or pressure), NIDDK (pressure or pain) |
| Trouble moving your eyes | Which direction feels stiff | NEI |
None of these US bodies tells you to photograph your eyes. A slow change is hard to see in your own mirror, though, and a dated photo gives you something to show your eye doctor. Keep the photos in one album on your phone, with the date in the name.
When it shows up, and how long it lasts
The ATA says "About one in every three people with Graves’ disease develop eye symptoms." It says that while eye symptoms can occur at any time, "they usually appear within the first year of diagnosis of Graves’ disease." The ATA's Graves' disease page puts it slightly differently: eye symptoms most often begin about six months before or after the diagnosis. NIDDK adds that, rarely, the eye disease can develop after Graves' disease has been treated.
How long it runs is the other half. The NEI says symptoms "usually last 1 to 2 years and often go away on their own." The Cleveland Clinic says TED may be active for two years or more, and that during this time symptoms may come and go. NIDDK says it often improves with treatment or even resolves on its own, and adds: "But it can come back or get worse." That's a long stretch for memory to hold. A record that runs for months shows what a single visit can't.
On how serious it gets, the ATA says "TED is usually mild and gets better on its own over time." On its Graves' disease page, it adds that a third of patients with Graves' develop some signs and symptoms of eye disease, "but only 5% have moderate-to-severe inflammation of the eye tissues to cause serious or permanent vision trouble."
Who to see about your eyes
Thyroid eye disease sits between two specialties. For patients with Graves' disease, the ATA's Graves' disease page names both: "Patients who have any suggestion of eye symptoms should seek an evaluation with an eye doctor (an ophthalmologist) as well as their endocrinologist."
The ATA says the diagnosis can be made by your primary care physician, your endocrinologist, or your eye doctor, and that it usually happens when you tell them about your symptoms and they examine your eyes. The ATA says you may also need more tests, and names a measurement of how much your eye bulges, tests of your visual field and color vision, and a CT or MRI scan of your eye sockets and eye muscles. If the symptoms or eye changes are moderate to severe, or the diagnosis or severity is uncertain, the ATA says you should be referred to an ophthalmologist.
The NEI says your eye doctor checks with a physical eye exam, taking a close look at your eyes and eyelids, and that if they think you may have Graves' disease, you'll need blood tests to check your thyroid. If you notice any of these signs, bring them to your doctor. That's enough reason to ask.
Questions to take with you
- Should I see an eye doctor (an ophthalmologist) for this, and can you refer me?
- Can my eye doctor and my endocrinologist both see my eye record?
- Which tests do I need: a measurement of the bulging, a visual field or color vision test, a scan?
- Which changes should send me to urgent care rather than waiting for an appointment?
- How often should my eyes be checked while this is active?
- Can I have a copy of my results?
For the rest of what to bring, see walk into your thyroid appointment with a real record. With Osmi's appointment sheet, you share your labs, trends, and daily record in one tap. It doesn't diagnose anything and it doesn't read your results for you.
When it can't wait
Usually there's time to write things down. A few signs are different. The ATA says to contact your doctor immediately if your eyelids can't close fully, if you notice a change in how you see colors, or if parts of your field of vision are lost. The Cleveland Clinic says some changes might need urgent treatment, and to call right away if your field of vision has narrowed or closed off, colors appear differently than they used to, or you have sudden, severe eye pain.
If your vision changes suddenly, colors look different, part of what you see goes missing, or you have sudden, severe eye pain, get urgent care rather than waiting for an appointment.
Your eyes keep their own time. Write down what they do, and take it to your doctor.
Questions women ask about thyroid eye disease
What are the first signs of thyroid eye disease? On its Graves' disease page, the ATA says "Early signs of trouble might be red or inflamed eyes, a bulging of the eyes due to inflammation of the tissues behind the eyeball or double vision." It adds: "Diminished vision or double vision are rare problems that usually occur later, if at all." The NEI and NIDDK also list gritty or irritated eyes, sensitivity to light, eye pain or pressure, and puffy eyelids or puffy eyes. If you notice any of them, write down the date and which eye, and tell your doctor.
Can you get thyroid eye disease with Hashimoto's or a normal thyroid? The bodies word this differently. The ATA says TED is most common with hyperthyroidism from Graves' disease and rarely occurs with normal or low thyroid levels. NIDDK says you can develop it even if your thyroid function is normal. The Cleveland Clinic says other autoimmune thyroid diseases, like Hashimoto's, can also cause it, while the NEI ties it to Graves'. Whether any of this applies to you is a question for your doctor.
Does thyroid eye disease go away? Often, according to the US bodies. The NEI says symptoms usually last 1 to 2 years and often go away on their own, and the ATA says TED is usually mild and gets better on its own over time. NIDDK adds that it can come back or get worse, and the ATA says some cases can be quite severe. Keep your record going until your eye doctor tells you it's settled.
Does thyroid eye disease show up in bloodwork? Blood tests check your thyroid, but the ATA says the diagnosis usually happens when you tell your doctor your symptoms and they examine your eyes. The NEI describes a physical eye exam, and says that if your eye doctor thinks you may have Graves' disease, you'll need blood tests to check your thyroid. The Cleveland Clinic says that if your provider thinks you have TED, blood tests check your thyroid hormone levels and antibodies. The ATA says you may also need a measurement of the bulging, visual field and color vision tests, or a CT or MRI scan. Ask which ones you need.
Can thyroid eye disease affect only one eye? The NEI says "Graves’ eye disease usually affects both eyes, but you may only notice symptoms in 1 eye." The Cleveland Clinic says the same: symptoms normally affect both eyes, but sometimes you may only notice symptoms in one. That's why your record names which eye, every time. Your eye doctor can tell you what they see in each.
Who is most likely to get thyroid eye disease? The NEI says that if you have Graves' disease, you're at risk, and that about 1 in 3 people with Graves' disease develop some of these eye problems. The NEI and the ATA both name smoking, and the ATA includes secondhand smoke. The AAO says it's more common when TED runs in the family, and the Cleveland Clinic says females are five times more likely to get Graves' disease and Graves' eye disease. Ask your doctor which of these apply to you.
Educational, not medical advice.
