Thyroid eye disease
Thyroid eye disease (TED) is an eye condition that usually occurs when you have a problem with your thyroid gland.
It causes the eye muscles, eyelids, tear glands and soft tissues in and around your eye socket to become inflamed.
The period of inflammation and swelling of these tissues is known as the "active" stage. The active stage may resolve on its own, but sometimes needs treatment so it’s important to have any symptoms of TED checked early. It commonly lasts about six months to two years. After this, the inflammation settles, and this is known as the "inactive" or "burnt out" stage.
TED may also be called thyroid associated ophthalmopathy (TAO), thyroid orbitopathy, Graves’ orbitopathy or Graves’ ophthalmopathy (GO).
This page contains a summary of our information on TED. To read our full information, download our factsheet:
Quick links
– Your thyroid gland
– How can TED affect my eyes?
– How can TED be managed during the active stage?
– What can I do to help with the symptoms of TED?
– How can the long-term effects of TED be managed when it has “burnt out”?
– Coping with changes to your appearance
Your thyroid gland
Your thyroid gland is located in your neck and produces thyroid hormones that help regulate metabolism (the speed with which the cells of your body work). Occasionally it can produce too much thyroid hormone (overactive thyroid) or too little (underactive thyroid).
TED most commonly occurs when you have an overactive thyroid but can also occur with an underactive thyroid or even when the thyroid is working normally.
The most common cause of an overactive thyroid gland is Graves’ disease, which is an autoimmune condition. In Graves’ disease, an autoimmune response produces antibodies that cause the thyroid gland to make more of its hormones. At the same time, the antibodies attacking your thyroid gland also attack the soft tissues behind your eyes (orbital contents), leading to swelling and inflammation.
The way that TED can affect your eyes can vary between different people. The most common way TED affects the eyes is by causing symptoms watering, grittiness, and soreness. You may also find that bright lights are uncomfortable.
These symptoms are caused by inflammation and dry eye. Dry eye can happen when your lacrimal gland, which produces the tears in your eyes, is affected by TED.
If the soft tissues around your eye become inflamed, they become red and swollen and cause some changes to your eyes:
- Your eyelids can become puffy and red (lid swelling), which is often more obvious in the morning.
- Your upper eyelid can rise to a higher position than normal, known as eyelid retraction. This can make more of the white of your eye visible, giving a "staring" appearance.
- The muscles and fat (soft tissues) behind your eyeball can swell, pushing your eyes forward so that they "bulge" (called "exophthalmos", or "proptosis").
- Both eyelid retraction and exophthalmos can make your dry eye symptoms worse. This is because more of your eye’s surface is exposed and also because these changes mean your eyelids are unable to blink or close fully.
- Your orbits (eye sockets) may become painful, particularly when your eyes move.
- If the muscles that move the eyeball become swollen, this can mean your eyes are unable to move together and equally as they should, causing double vision (diplopia). You may only have double vision when looking in one particular direction or you may have double vision all the time, whatever direction you are looking in.
- If the pressure inside your eye sockets increases, it can squash (compress) the optic nerve, which can cause blurring or dimming of your vision. Very few people with TED experience this, but it’s important to get medical attention straight away if you notice these changes to your vision.
Most people only get a mild form of TED, although the symptoms can be difficult to cope with. You may have dry eye which can usually be managed well with lubricating eye drops. You may have some eyelid retraction or exophthalmos and any double vision you have may come and go.
Many people may only experience these changes mildly and they can be temporary and short-lived. However, they can still affect your quality of life. Often the symptoms of TED get worse for six months to a year, but after that the appearance of your eyes should improve.
How can TED be managed during the active stage?
During the active stage of TED, treatments are aimed at improving your symptoms and protecting your eyes while the active stage of the condition runs its course. Symptoms can fluctuate during the active stage which can last months or a couple of years.
Most commonly, during the active stage, treatment involves treating dry eyes or double vision. Symptoms of dry eye can be managed with artificial tear eye drops, and double vision may be managed with prisms or occlusion (covering one eye). For most people, this is all the treatment they will need at this stage and the condition won’t get any more advanced than this.
Much less commonly, where your vision is at risk, your ophthalmologist may recommend immunosuppressant treatment, usually steroids, to help reduce the inflammation. Orbital radiotherapy treatment may also be considered to treat the tissues around the eyeball and prevent optic nerve damage. The earlier these treatments can be given, the more they can help prevent the condition from progressing and protect your sight. In very severe cases, emergency orbital decompression surgery may be needed – this operation involves removing some of the bone and/or fat in your eye socket to provide more room for the swollen muscles, and to take the pressure off the optic nerve. All these treatments aim to avoid permanent damage to your optic nerve. Very few people have TED that progresses to a stage where these treatments are needed.
What can I do to help with the symptoms of TED?
During the active stage of TED, there are some things you can do that might help your symptoms.
Adjust your sleeping position
Puffiness around the eyelids tends to be worse in the mornings after lying flat. Sleeping propped up on extra pillows can help reduce the puffiness and congestion around your eyes.
Use artificial tear eye drops
Symptoms of dry eye can be managed by using eye drops to moisten your eyes and they can usually be used frequently or as much as needed.
Also trying to avoid, or protect your eyes in windy or dusty environments, can help, as these conditions might irritate your eyes; this can be done by wearing glasses or protective eyewear.
You may also find that taking regular breaks when doing activities such as reading, watching television and using computer screens can help keep your eyes feeling more comfortable.
Keep control of your thyroid condition
Even though treatment for your thyroid condition may not prevent or improve TED, it’s important to keep your thyroid hormone levels at the correct levels. Make sure you have thyroid blood tests regularly and follow the advice given by your doctor about when and how to take your thyroid medication.
Stop smoking
Smoking increases your chances of developing TED and can also make it dramatically worse. Also, treatment is less effective in people with active TED who smoke. Because e-cigarettes also contain nicotine, these are also thought to increase your risk. Talk to your GP about getting help to quit. This is probably the most important thing you can do if you are a smoker.
Selenium supplements
Some evidence suggests that taking selenium supplements (200 micrograms daily) may help people with mild thyroid eye disease. It’s important to check with your GP whether taking supplements is safe for you, especially if you are taking other medications as well.
Wearing sunglasses
If you find bright lights uncomfortable, reducing the amount of light entering your eyes by wearing sunglasses or tinted eye shields can help.
How can the long-term effects of TED be managed when it has “burnt out”?
In most people, the active inflamed stage of TED resolves (burns out) within about two years. In a few people, active TED can recur again after it has burnt out, although this becomes less likely the longer that the condition has been inactive.
Treatment after TED has burnt out is aimed at dealing with any remaining double vision, providing better eyelid protection for your eyes and improving the appearance of your eyes.
The swelling caused by TED can often improve once the active stage has passed, meaning there can be some improvement in the appearance of your eyes. However, you might be left with some changes caused by the swelling, such as eyelid retraction (where the upper eye lid is pulled upwards causing a staring appearance), exophthalmos (bulging of the eyes), large eyelid bags or double vision. This is because the tissues that have been inflamed are often less flexible once the active phase of the condition has passed, and they’re not able to return to their original position.
If this is the case, then you may wish to decide whether or not to have further surgery to help improve these changes. Sometimes the problems that are left may only be minor and you may feel treatment is not necessary, or that the risks of the surgery outweigh the problems that you have.
If surgery is needed, it is usually done in a particular order, so orbital decompression surgery to reduce the amount of proptosis (if needed) is the first priority, then surgery for double vision, and lastly eyelid surgery (for lid retraction, for example). It’s important to understand that often several surgeries will be required to manage the changes of TED and typically these operations are carried out over about 18 months to two years.
For more information on how TED affects your sight and the available treatments, download our full guide.
Coping with changes to your appearance
It is well known that TED can affect your psychological and social well-being. You may feel anger, loss of self-esteem or confidence, or socially isolated, because of the change in the appearance of your eyes. Your mood can also be affected by medications you may be taking, such as steroids. TED can change your facial appearance and alter your expression which may affect the way people react to you which, understandably, can be difficult to cope with. Treatment, which may include surgery, can often improve this; and counselling, or contact with others who have TED, can help you find coping strategies.
Some of the following organisations might be helpful:
- Thyroid Eye Disease Charitable Trust (TEDct) can help put you in touch with other people who have had similar experiences which is often helpful.
- The British Thyroid Foundation has a network of telephone support volunteers that can help. They also have closed Facebook groups for people with TED. You can email them at [email protected] if you would like their support.
- The charity Changing Faces also offers a support service for anyone experiencing a condition or injury that affects their appearance.
- Our Counselling and Wellbeing team can offer telephone counselling to anyone affected by sight loss or an eye condition.
