Thyroid Eye Disease: Bulging Eyes, Double Vision and Treatment

Thyroid eye disease (TED), also called Graves orbitopathy or Graves ophthalmopathy, is an autoimmune condition in which the immune system attacks the muscles and fatty tissue behind and around the eyes. The tissues swell, pushing the eyes forward, pulling the eyelids back and sometimes stiffening the muscles that move the eyes. The result can range from mild grittiness and puffy eyelids to bulging eyes, double vision and, rarely, a threat to sight.

Most people with TED have Graves disease, the most common cause of an overactive thyroid. But the eye disease does not simply follow thyroid hormone levels: it can appear before, at the same time as, or years after the thyroid problem, and occasionally in people with normal or underactive thyroid function. Understanding the condition, its natural course and the steps you can take, especially stopping smoking, helps you work effectively with your care team.

What causes thyroid eye disease?

In Graves disease, the body produces antibodies that stimulate the thyroid-stimulating hormone (TSH) receptor, making the thyroid produce too much hormone. Cells behind the eyes, called orbital fibroblasts, also carry TSH receptors and the related insulin-like growth factor 1 receptor (IGF-1R). When the antibodies and immune cells activate these fibroblasts, they produce inflammation, swelling, extra fat and water-holding substances. The eye muscles enlarge and the fat behind the eye expands within the rigid bony socket, which has nowhere to go except forwards.

Women are affected more often than men, reflecting the higher rate of Graves disease in women, but men often have more severe eye disease. TED is most common in middle age.

Risk factors

• Smoking – smokers are considerably more likely to develop TED, tend to have more severe disease and respond less well to treatment. Stopping smoking is the single most important thing you can do. See our article on smoking and eye disease.
• Unstable thyroid levels – both untreated overactivity and over-treatment leading to an underactive thyroid can worsen the eyes.
• Radioactive iodine treatment – can trigger or worsen TED in some people, especially smokers. Doctors often give a short course of steroids to protect the eyes when radioiodine is used in people at risk.
• High levels of TSH receptor antibodies, older age and male sex are linked to more severe disease.

Symptoms and signs

Symptoms often affect both eyes, though one may be worse than the other.

• Gritty, dry, sore or watery eyes – often the first symptoms, frequently mistaken for dry eye or allergies.
• Red eyes and swollen, puffy eyelids, especially in the morning.
• Eyelid retraction – the upper or lower lids pull back, showing white above or below the coloured part of the eye and giving a staring or startled look.
• Bulging eyes (proptosis or exophthalmos).
• Double vision (diplopia) – usually worse when looking up or to the side, or when tired, because swollen muscles become stiff and do not move together.
• Pain or pressure behind the eyes, sometimes worse with eye movement.
• Light sensitivity.
• Difficulty closing the eyes fully, causing exposure of the cornea and dryness, particularly overnight.
• Blurred or dim vision, faded colours – may signal optic nerve compression and needs urgent attention.

Changes in appearance can be very distressing, affecting confidence, relationships and work. Research consistently shows that TED has a major impact on quality of life, even when vision is not threatened. It is entirely valid to seek help for this aspect.

The two phases: active and inactive

TED typically follows a characteristic course, sometimes described by Rundle's curve:

Specialists assess activity using a clinical activity score (CAS), which counts signs such as pain, redness and swelling, and assess severity as mild, moderate-to-severe or sight-threatening. These categories, defined by the European Group on Graves Orbitopathy (EUGOGO), guide which treatment is offered.

Diagnosis

Diagnosis is usually based on the typical signs in someone with known thyroid disease, supported by:

• Thyroid blood tests – thyroid hormones, TSH and TSH receptor antibodies.
• A detailed eye examination – vision, colour vision, pupil reactions, eye pressure, eye movements, eyelid position and the optic nerve. Our page on eye examinations explains what to expect.
• Measurement of proptosis with an exophthalmometer.
• CT or MRI scans of the orbits – showing enlarged muscles, increased fat and whether the optic nerve is crowded at the back of the socket.

Ideally, care is shared between an endocrinologist and an ophthalmologist with experience in TED, often in a combined thyroid eye clinic.

Treatment for mild disease

Many people have mild TED that improves on its own as the active phase burns out. Treatment aims to make the eyes comfortable and prevent worsening.

• Stop smoking and avoid second-hand smoke. Ask for help; quitting services, nicotine replacement and other aids improve success.
• Keep thyroid hormone levels stable and normal, working closely with your endocrinologist.
• Lubricating eye drops and gels – preservative-free artificial tears in the day and thicker gel or ointment at night. See our guide on eye drops and correct use.
• Sleep with your head raised on extra pillows to reduce morning puffiness.
• Sunglasses for light sensitivity and wind protection; wraparound styles help.
• Taping the eyelids or using moisture goggles at night if the eyes do not close fully, as advised by your doctor.
• Prisms stuck onto glasses can relieve mild double vision.

Selenium

A European randomised trial published in 2011 found that a six-month course of selenium improved quality of life and eye involvement and slowed progression in people with mild, recent-onset Graves orbitopathy. Selenium is therefore recommended in European guidelines for mild active disease, particularly in regions where selenium levels in the diet tend to be low. It is less certain whether people with adequate selenium intake benefit. Too much selenium is harmful, so take it only on your doctor's advice and at the dose they recommend.

Treatment for moderate-to-severe active disease

When inflammation is significant, medical treatment aims to shorten the active phase and limit lasting changes.

• Intravenous glucocorticoids (steroids) – a course of weekly infusions over several weeks is a common first-line treatment. It reduces swelling and pain and can improve double vision. The total dose is carefully limited because high cumulative doses can harm the liver. Oral steroids are an alternative in some cases but tend to have more side effects.
• Mycophenolate – often combined with intravenous steroids, as recommended in recent European guidance.
• Teprotumumab – a monoclonal antibody that blocks the IGF-1 receptor on orbital fibroblasts. Approved by the US FDA in 2020, it is given as a series of infusions. In clinical trials it reduced proptosis substantially and improved double vision in many patients. Side effects include muscle cramps, hearing changes (sometimes persistent), high blood sugar and, rarely, worsening of inflammatory bowel disease. Some patients experience a degree of relapse after treatment ends. Availability and approval vary by country.
• Other options – depending on the situation, specialists may use other immune-modifying drugs such as rituximab or tocilizumab, or low-dose orbital radiotherapy, which can help eye movement problems in active disease.

All of these treatments require specialist assessment, monitoring and careful discussion of benefits and risks; the choice and dosing are decided by your doctors.

Sight-threatening disease: an emergency

In a small proportion of people, the swollen muscles compress the optic nerve at the apex of the orbit (dysthyroid optic neuropathy), or the cornea becomes severely exposed and ulcerated. These situations need urgent treatment, usually high-dose intravenous steroids and, if vision does not improve quickly, urgent orbital decompression surgery.

Surgery for thyroid eye disease

Once the disease has been inactive and stable for several months, typically at least six, surgery can address lasting changes. Operations are usually carried out in a specific sequence, because each step can affect the next:

1. Orbital decompression – removing part of the bony walls of the orbit and/or some fat to create more space, allowing the eyes to settle back. It reduces bulging and pressure on the optic nerve.
2. Strabismus (squint) surgery – adjusting the eye muscles to correct double vision. More than one operation may be needed, and prisms can fine-tune the result. Our guide to strabismus explains squint in general.
3. Eyelid surgery – lowering retracted lids, removing excess fat or skin and improving closure and appearance.

Not everyone needs all three stages. A specialist oculoplastic or orbital surgeon will explain the expected benefits, recovery and risks, including new or worsened double vision after decompression. See our overview of eye surgery options for more context.

Living with thyroid eye disease

• Keep a photo diary; comparing pictures over time helps your doctor judge activity.
• Use lubricants regularly, not only when symptoms flare.
• Take breaks from screens and remember to blink fully; TED often worsens dryness during computer work.
• If double vision makes driving unsafe, do not drive, and check your national licensing rules.
• Seek emotional support. Patient organisations offer advice and peer contact, and some people benefit from counselling to cope with appearance changes.

When to see a doctor: urgent warning signs

With early recognition, good thyroid control, smoke-free living and modern treatment options, most people with thyroid eye disease keep good vision, and many regain comfortable eyes and a familiar appearance.