Thyroid eye disease: symptoms, treatment and how long it lasts

The BTF lists a change in the appearance of the eyes, a gritty feeling or excessive dryness, watery eyes, intolerance of bright light, swelling or fullness of the eyelids, new bags under the eyes, redness of the lids and eyes, blurred or double vision, pain in or behind the eye when looking up, down or sideways, and difficulty moving the eyes.

It can be mistaken for something else. The BTF says people are sometimes treated for conjunctivitis, allergy or hay fever for months. Clues pointing to thyroid eye disease include symptoms out of hay fever season, no itching, no sticky discharge, an ache behind the eye on looking up or sideways, and double vision.

Puffy eyelids in someone with a severely underactive thyroid are probably not thyroid eye disease. The BTF says this should improve once the thyroid is adequately treated with levothyroxine.

• Staring or bulging eyes

• Gritty, dry or watering eyes

• Red or swollen eyelids and eyes

• Pain behind the eye on moving it

• Double or blurred vision

• Sensitivity to bright light

The BTF says mild cases are helped by artificial tears as drops, gels or ointments. Ointments last longest but can blur vision, so are often used at night. Preservative-free drops may be needed if drops irritate. It also recommends stopping smoking, keeping thyroid levels steady, and avoiding radioiodine in active disease unless special precautions are taken. A six-month course of selenium supplements may help mild active disease, according to recent evidence it cites.

Significant inflammation may need steroids. The BTF says they can reduce double vision, redness and swelling and in severe cases help restore eyesight, and that they are more effective and cause fewer side effects when given intravenously than as tablets. They are not very effective at reducing eye protrusion. Steroids are sometimes combined with immunosuppressive agents or radiotherapy.

Some people are left with permanent double vision or a change in appearance. Once inflammation has settled, rehabilitative surgery may help: decompression surgery to make space behind the eyes, eye muscle surgery for double vision, and eyelid surgery to protect the eyes. Prisms in spectacles or a temporary patch can help with double vision. The BTF says several newer treatments were not yet available through the NHS when its leaflet was revised in 2024, and that you can ask your specialist about clinical trials.

The eye sits in a bony socket, the orbit, with muscles, fat and tear glands around it. In thyroid eye disease these tissues become inflamed and can swell. The British Thyroid Foundation says this may make the eyes and eyelids red, swollen and uncomfortable, and push the eyes forward, giving a staring or bulging look.

In some people the muscles that move the eyes swell and stiffen so they no longer move in line, causing double vision. The BTF says that rarely, pressure on the nerve at the back of the eye reduces vision, or ulcers form on the front of the eye if the lids cannot fully close.

The condition is also called Graves' orbitopathy because most people also have the autoimmune thyroid disease Graves'. The same antibodies are thought to affect both the gland and the tissue behind the eye. This can usually be confirmed with a blood test for TSH receptor antibodies.

It is an autoimmune condition, but the trigger is not known. The BTF says it can occur when the thyroid is overactive, underactive or functioning normally, and can follow treatment for Graves' disease. The NHS lists eye problems such as irritation, double vision or bulging eyes among the further problems of an overactive thyroid.

Smoking is the best-known modifiable risk factor. The BTF says that if you have no eye features when Graves' is diagnosed and you are a non-smoker or ex-smoker, your chance of developing it is less than one in ten, but smoking doubles it. It also notes that there is no research yet on vaping and thyroid eye disease, and that the safest thing is to stop both.

Diagnosis is made by examining the eyes and checking thyroid blood tests, including antibodies. The BTF says early diagnosis is essential for treatment to be effective, and that people need an ophthalmologist and an endocrinologist. It notes that access to specialist clinics varies widely across the UK and points to joint thyroid eye clinics.

Ask your specialist which assessments are planned for you, and how often your eyes and thyroid levels will be reviewed.

The BTF says the symptoms may worsen for the first 6 to 12 months or so, then become stable or improve, and it can take up to two years before inflammation has gone. In less than 5% of people it becomes very severe.

The condition can also affect mood and confidence. The BTF recognises that changes to the face and eyes can affect relationships, social life and work, and says treatment including surgery can often improve this, as can counselling or contact with others who have it. Support is available from the BTF and the Thyroid Eye Disease Charitable Trust.

The BTF advises seeing your doctor without delay and asking for immediate referral to a specialist eye centre if your symptoms get increasingly worse over days or weeks, you have blurred vision that does not improve by blinking or covering each eye in turn, colours look less bright or differ between eyes, you see double looking forwards or downwards, or you keep your head tilted to avoid seeing double.

Sudden loss of vision in either eye is an emergency. Go to A&E or call 999. Do not wait for a clinic appointment.

The ideal NHS route is a joint clinic with an eye specialist and a thyroid specialist, and the BTF says there should be one in every region of the UK. Your GP can refer you, and eye casualty is the route for urgent symptoms.

Some people also see a private oculoplastic or neuro-ophthalmology specialist, especially for eyelid or orbital surgery. Ask whether the clinician has regular experience of thyroid eye disease and how care will be coordinated with your thyroid doctor.