What Is Thyroid Eye Disease?
Thyroid Eye Disease (TED), also called Graves’ ophthalmopathy, is an autoimmune condition where the body’s immune system attacks the tissues behind the eyes. It’s most common in people with Graves’ disease - an autoimmune disorder that causes an overactive thyroid - but it can also happen in those with normal or underactive thyroid function. About half of all Graves’ patients develop some form of TED, and it affects roughly 16 out of every 100,000 people each year. Women are four to six times more likely to get it than men, and it usually shows up between ages 40 and 60.
The real problem isn’t the thyroid itself - it’s what happens behind the eyes. Immune cells target fat and muscle tissue in the eye socket, causing inflammation, swelling, and fluid buildup. This pushes the eyeball forward, makes eyes red and puffy, and can mess with vision. The condition usually comes in two phases: an active, inflamed stage that lasts 6 to 24 months, and then a quieter, scarred stage where damage becomes permanent if not treated early.
Common Symptoms of Thyroid Eye Disease
If you’ve been told your eyes feel like they’re full of sand, you’re not imagining it. A gritty, burning sensation affects 78% of people with TED. Other signs include:
- Red, swollen eyelids and conjunctiva (the clear tissue covering the white of the eye)
- Light sensitivity and excessive tearing
- Pain behind the eyes, especially when moving them
- Dry eyes or a feeling that something’s stuck in your eye
- Forward bulging of the eyeballs (proptosis) - seen in about one-third of cases
- Double vision when looking side to side or up and down
Most people (89%) get symptoms in both eyes, but 11% notice it in just one. The severity is measured using something called the Clinical Activity Score (CAS). If your score is 3 or higher, your disease is still active and needs treatment right away. Imaging tests like CT or MRI scans often show swollen eye muscles - especially the ones that move the eye downward and inward.
Why Smoking Makes TED Worse
If you smoke and have Graves’ disease, your risk of developing TED jumps by nearly eight times. Smoking doesn’t just make the disease more likely - it makes it worse. Smokers tend to have more severe swelling, more double vision, and respond poorly to treatment. Quitting smoking is one of the most effective things you can do to slow down TED, even before starting any medication. Studies show that people who quit during the early stages have much better outcomes than those who keep smoking.
Another big risk factor is high levels of TSH receptor antibodies (TRAb). If your TRAb level is above 15 IU/L, you’re nearly five times more likely to develop serious TED. That’s why doctors now test for these antibodies in every Graves’ patient - not just to manage the thyroid, but to predict eye problems before they start.
Steroids: The First-Line Treatment
When TED is active and inflamed, steroids are often the first treatment doctors reach for. The most effective version is intravenous methylprednisolone, given as a weekly infusion. The standard dose is 500 mg for six weeks, then 250 mg for another six weeks. This approach works in 60-70% of patients with moderate to severe disease, reducing swelling, redness, and double vision.
Oral prednisone is an alternative, but it’s less effective and comes with more side effects. People on daily pills often gain weight (an average of 8.2 kg), develop high blood sugar, or lose bone density. About a quarter of patients relapse once the dose is lowered. That’s why IV steroids are preferred - they deliver more drug directly to the inflamed tissue with fewer systemic effects.
Doctors limit the total IV dose to about 4.5-5 grams to avoid rare but serious liver damage. Even with that safety net, some patients still feel tired, get hot flashes, or notice a metallic taste during infusions. But compared to the risk of permanent vision loss, most agree it’s worth it.
Biologics: A New Era in TED Treatment
In 2020, the FDA approved teprotumumab (brand name Tepezza®), the first drug designed specifically to treat TED at its source. Unlike steroids, which just suppress inflammation, teprotumumab targets the insulin-like growth factor-1 receptor (IGF-1R), which is overactive in TED tissue. This stops the immune attack before it causes more damage.
In the OPTIC clinical trial, 71% of patients saw their eyeballs pull back by at least 2 millimeters - a huge change for someone who can’t close their eyes fully or feels like they’re always staring. Nearly 60% had their double vision improve, compared to just 26% on placebo. The treatment involves eight infusions over 24 weeks, given every three weeks.
But there’s a catch: it costs about $360,000 per course. Insurance often denies coverage, and even when approved, patients report waiting up to 47 days for authorization. Some pay $5,000 per infusion out-of-pocket. Despite the cost, patient satisfaction is higher than with steroids - 74% report being satisfied with biologics, versus 58% with steroids.
Other Biologics and Future Options
Teprotumumab isn’t the only option on the horizon. Satralizumab (Enspryng®), an anti-IL-6 drug, was approved in 2023 for patients who don’t respond to steroids. It’s given as a monthly shot under the skin, which is easier than IV infusions. Early results show a 54% response rate in reducing eye bulging.
Other drugs like rituximab and tocilizumab are being tested, but evidence is still limited. Researchers are also studying whether combining teprotumumab with selenium - a mineral that helps reduce mild TED symptoms - can improve results even more. Early data from the TOPAZ trial shows an 82% response rate with the combo, compared to 67% with teprotumumab alone.
By 2025, a biosimilar version of teprotumumab is expected to cut costs by 30-40%. That could make treatment accessible to far more people, especially those on Medicaid - who currently face insurance denials at twice the rate of commercially insured patients.
What About Surgery?
Surgery isn’t the first step - it’s the last. If inflammation has turned into scar tissue, and your eyes still bulge, you can’t close them, or your double vision won’t go away, then orbital surgery may be needed. There are three main types:
- Decompression surgery removes bone from the eye socket to give the eyeball more room. It reduces bulging by 2-5 mm, but carries a 15% risk of new or worse double vision.
- Strabismus surgery repositions the eye muscles to fix double vision. It’s only done after inflammation has been inactive for at least 6 months.
- Eyelid surgery fixes drooping or retracted eyelids to improve appearance and protect the cornea.
These procedures are highly effective - but only when timed right. Doing them too early, while the disease is still active, can make things worse. That’s why doctors wait until the disease is quiet before operating.
Managing Mild Symptoms at Home
If your TED is mild (CAS under 3), you might not need steroids or biologics. Simple steps can help:
- Use preservative-free artificial tears - sodium hyaluronate 0.15-0.3% - four times a day. Most people feel better within weeks.
- Wear sunglasses outdoors to reduce light sensitivity.
- Prop your head up with pillows at night to reduce swelling.
- Take selenium supplements (200 mcg daily). A Cochrane review found it improves quality of life scores in mild cases, though the effect is modest.
- Use prisms in glasses if you have double vision. They work well if the misalignment is under 15 prism diopters.
Many patients don’t realize how much these small steps matter. One Reddit user said, “I didn’t think eye drops would help, but after two weeks, I could finally sleep without my eyes feeling like they were on fire.”
What’s Next for TED Treatment?
Researchers are working on ways to predict who will get TED before it starts. Genetic markers, antibody patterns, and even gut microbiome changes might one day help identify high-risk patients. The goal is to prevent TED, not just treat it.
Long-term data is still missing. We know teprotumumab works well for two years, but what about five? The 4-year follow-up from the OPTIC trial is due in early 2024. That will tell us if the benefits last - or if the disease comes back.
For now, the message is clear: don’t wait. If you have Graves’ disease and notice eye changes, see an ophthalmologist who specializes in TED. Early treatment with steroids or biologics can save your vision - and your quality of life.
Can thyroid eye disease go away on its own?
Thyroid Eye Disease can enter an inactive phase after 1-3 years, where inflammation stops and symptoms stabilize. But that doesn’t mean it’s gone. Permanent changes like bulging eyes, eyelid retraction, and double vision often remain unless treated. Waiting for it to resolve on its own risks irreversible damage. Early medical intervention is key to preventing long-term problems.
Are steroids safe for treating TED?
Intravenous steroids are generally safe when given under medical supervision and within recommended limits (under 5 grams total). Common side effects include flushing, high blood sugar, and insomnia. Oral steroids carry higher risks - weight gain, bone loss, and diabetes - and are less effective. IV steroids are preferred for moderate-to-severe TED because they deliver more drug to the eye area with fewer systemic side effects.
How long does it take for teprotumumab to work?
Most patients start noticing improvements in eye swelling and redness within 4-6 weeks. Double vision often improves around week 8. The full course lasts 24 weeks (eight infusions), and the best results are usually seen by the end of treatment. Some patients report continued improvement for months afterward as inflammation fully resolves.
Is TED reversible?
Inflammation is reversible with early treatment - steroids and biologics can reduce swelling, redness, and double vision. But once scar tissue forms or muscles shrink and stiffen, those changes are permanent without surgery. That’s why timing matters: treat during the active phase, before fibrosis sets in.
Can I still get TED if my thyroid is normal?
Yes. While TED is most common in people with Graves’ disease, about 10-15% of cases occur in those with normal thyroid function (euthyroid) or even hypothyroidism. The immune attack on the eye tissues happens independently of thyroid hormone levels. That’s why doctors check for TSH receptor antibodies even if your thyroid tests look fine.
What’s the best way to find a TED specialist?
Look for an ophthalmologist who specializes in thyroid eye disease or orbital disorders. Many major medical centers have dedicated TED clinics. You can also ask your endocrinologist for a referral. The American Academy of Ophthalmology and the Thyroid Eye Disease Clinical Research Network list certified specialists. Don’t settle for a general eye doctor - TED requires specialized knowledge to treat correctly.