Thyroid eye disease

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. The active stage 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:

Your thyroid gland is in your neck and produces thyroid hormones. These hormones help regulate metabolism (the speed with which the cells of your body work). Sometimes 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 TED 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. Graves’ disease 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). This leads 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 TED affects your lacrimal gland, which produces the tears in your eyes.

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. This is 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. Also, because these changes can 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. This causes double vision (diplopia). You may only have double vision when looking in one direction or you may have double vision all the time, whatever direction you are looking in.
• In severe TED, the pressure inside your eye sockets increases, causing a dull ache. This pressure can squash (compress) the optic nerve. Optic nerve compression can cause blurred vision and dimming of your sight. It may cause colours to begin to look ‘washed out’. Your visual field (your side, or peripheral, vision) may also close in to create tunnel 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. They can be temporary and short-lived. But they can still affect your quality of life. Often the symptoms of TED get worse for six months to a year. After this, the appearance of your eyes should improve.

For some people, it can take up to two years before the inflammation has completely gone. The longer the active stage lasts, the less likely it is for the appearance of your eyes to go completely back to normal again. Some other symptoms such as double vision may persist in the long term.

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.

During the active stage, treatment most commonly involves treating dry eyes or double vision. 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. This is usually steroids, to help reduce the inflammation. Other immunosuppressive medication may also be needed. 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. This provides more room for the swollen muscles and takes pressure off the optic nerve. 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.

Managing dry eye

Dry eye can cause your eyes to feel dry and gritty. Lubricating eye drops, also known as artificial tears, can help to make your eyes feel more comfortable. They can also help to prevent your cornea becoming damaged from being dry. Thicker gel type drops can be used to help lubricate the eyes for longer. Ointments can help lubricate the eyes overnight. If your eyelids are unable to close fully, your ophthalmologist may suggest gently taping your eyelids closed at night. This is to prevent your eyes from drying out. Although your eyes may be described as ‘dry’, they can sometimes be watery. Using artificial tears can make your eyes feel more comfortable as well as reducing the watering.

Managing double vision

An orthoptist is an eye professional who specialises in double vision. They will usually be involved in your treatment if you develop this. Different treatments such as occlusion, prisms and surgery may be used. Treatment can depend on whether your TED is active or inactive and how severe your symptoms are.

Occlusion

One of your eyes can simply be covered up with an eye patch or an opaque filter. These can be placed on your glasses so that the brain only receives an image from one eye. This is usually used as a temporary solution during the active stages of TED, where the double vision may be unstable.

Prisms

Prisms work by bending light in a direction which compensates for the angle between the eyes. They can be tailored to match the angle between your eyes and fixed to spectacles. Temporary stick-on prisms, known as ‘Fresnel’ prisms, may be used until the angle is stable. Once the angle is stable, prisms can be incorporated into your normal spectacles by an optometrist.

During the active stages of TED, your double vision may be temporary and unstable. So, prisms and occlusion may be the only treatments possible. As TED becomes inactive you might have some double vision that remains. This may be treated with surgery to re-align the eyes so that they point in the same direction and give you single vision. Botulinum toxin (Botox) injections into the eye muscles may also be used to help align the eyes, although the effect is temporary.

During the active stage of TED, there are some things you can do that might help your symptoms.

Stop smoking

Smoking increases your chances of developing TED. It 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.

Sleeping with extra pillows

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. 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. 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

Fluctuations in your thyroid hormone levels can worsen TED. It’s therefore 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.

Selenium supplements

Some evidence suggests that taking selenium supplements (200 micrograms daily) for 6 months may help people with mild, active 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.

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. But this becomes less likely the longer that the condition has been inactive.

Treatment after TED has burnt out aims to:

• Treat any remaining double vision
• Provide better eyelid protection for your eyes
• Improving the appearance of your eyes

The swelling caused by TED can often improve once the active stage has passed. This means there can be some improvement in the appearance of your eyes. But you might be left with some changes caused by the swelling. These changes can include:

• eyelid retraction (where the upper eye lid is pulled upwards causing a staring appearance)
• exophthalmos (bulging of the eyes)
• large eyelid bags
• double vision.

These changes can happen because the tissues that have been inflamed are often less flexible after the active phase of the condition. So, they’re not able to return to their original position.

If this is the case, then you may wish to decide whether 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:

• orbital decompression surgery to reduce the amount of proptosis (if needed) is the first priority
• then surgery for double vision
• 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. Typically these operations are carried out over about 18 months to two years.

To have surgery for TED, it’s important that the active stage of your condition has burnt out. It’s also important for your thyroid condition itself to be stable. Surgery for TED aims to restore the position and appearance of your eyes to as near to normal as possible.

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. This 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. 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 offer support to people affected by TED. They also run a private and confidential Facebook group called Thyroid Eye Disease Support UK where you can get support from 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.