Thyroid eye disease

Thyroid eye disease (TED) is a condition that causes the muscles and soft tissues of your eye socket to swell. It happens when you have a problem with your thyroid gland.  It is also called thyroid associated ophthalmopathy (TAO), thyroid orbitopathy or Graves’ orbitopathy or ophthalmopathy.

About thyroid eye disease

TED affects the soft tissues such as the fat and muscles surrounding your eyeball within your eye socket. The condition is characterised by a period of inflammation and swelling of these tissues (active stage), followed by an inactive (or ‘burnt out’ stage). It usually happens when you have a problem with your thyroid gland, although in some people, it can happen when the thyroid gland is working normally.

Thyroid gland

Your thyroid gland is located in your neck and produces a hormone that helps regulate metabolism. Occasionally it can produce too much thyroid hormone (overactive thyroid) or too little (underactive thyroid). Either imbalance can cause TED but it most commonly occurs when you have an overactive thyroid. TED can sometimes occur even when the thyroid is working normally.

Autoimmune disease and the thyroid

The most common cause of an overactive thyroid gland is auto-immune disease. Our immune system normally makes small proteins (antibodies) to combat bacteria and other ‘germs’ that are foreign to us. If you have an autoimmune condition, your immune system makes antibodies that act against normal tissues of your body. The reason why this happens isn’t entirely clear at the moment.

When an autoimmune attack starts on your thyroid, it responds by producing more of its hormones.  At the same time the antibodies attacking your thyroid gland are directed at the soft tissues around your eyes (orbital contents), leading to swelling and inflammation.

You may find it helpful to know more about thyroid problems, and further information is available from the British Thyroid Association. Please see ‘What support is available?’ for further details. 

How thyroid disease affects your eyes

Most patients with TED have a relatively mild form of the condition. The most common problem is dry eyes, which is caused by the lacrimal gland being attacked by your immune system as a result of the autoimmune condition. The lacrimal gland produces the tears in our eyes, so when it is affected fewer tears are produced.

As a result, your eyes may feel dry and gritty. It’s worth noting that although your eyes may be described as 'dry' they can water (reflex lacrimation) and produce more tears than normal.

As the soft tissues around the eye become inflamed, they become red and swollen and you may notice some changes to your eyes:

  • Your eyelids can become puffy and red (lid swelling), this often being more obvious in the morning.
  • The muscles of your eyelids can overact, leading to retraction of the upper eyelids and resulting in a staring appearance, and incomplete blinking.
  • The muscles and fat surrounding your eye can swell, pushing your eyes forward so that they tend to ‘bulge’ (called ‘exophthalmos’, or ‘proptosis’).
  • Both lid retraction and exophthalmos can make the dry eye symptoms worse.
  • The swelling of the muscles which move your eyes produces unequal movements and can cause you to see double vision (diplopia). You may have double vision when looking in one particular direction or when you’re looking in all directions.
  • The orbits may become painful, particularly on eye movement.

How thyroid disease affects your sight

If your eye muscles become swollen, then this can affect how well the muscles are able to control the way your eyes move together. This can cause you to see double vision (‘diplopia’) and occurs when your eyes don’t quite point in the same direction. Therefore each eye sends a slightly different message to your brain. When this happens your brain 'sees' two of everything. It can make activities like reading very difficult and driving very dangerous. 

The law states that if someone develops double vision then they must stop driving. It’s illegal to drive with double vision which is not controlled. If you do develop double vision then you need to inform the Driver and Vehicle Licensing Authority (DVLA) and usually they will contact your ophthalmologist for a medical report. If your double vision then becomes controlled with glasses at a later date then DVLA may say it’s safe for you to drive again. Not informing the DVLA of double vision could invalidate your insurance and you would also be driving illegally.

In severe thyroid eye disease, especially in younger patients whose firm tissues don’t allow the eyes to bulge forwards, the pressure inside the orbits increases (causing a dull ache). This pressure can compress the optic nerve. Your optic nerve carries the messages from your eye to your brain and if it is compressed then this can cause blurred vision – your sight may become dim, colours begin to look washed out, and your visual field (your side or peripheral vision) may constrict. If this starts to happen, it’s important to seek medical attention as soon as possible, so that the pressure on your optic nerve can be reduced quickly, before permanent damage occurs. It’s worth mentioning that very few people develop this more advanced stage of the condition.

Treatment for thyroid disease

The first priority is to deal with the primary thyroid problem. For an overactive thyroid, this is firstly with anti-thyroid drugs, and then with either surgery or radiotherapy. The treatment of an overactive thyroid often produces an underactive thyroid, which then requires treatment with thyroid replacement therapy.

It’s important to be aware that the treatment of the underlying thyroid condition can make your associated eye condition worse. Sometimes even though your thyroid hormone level becomes stable; your associated eye condition may not improve. This is because, in many cases, both your thyroid condition and associated eye condition will run their own separate course.

Treatment for TED during the active stages

During the active stages of TED, the treatments are aimed at improving the symptoms you may have, most commonly dry eye 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.  

In less common cases where your vision is at risk, your ophthalmologist (eye doctor) 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. In very severe cases, emergency orbital decompression surgery may be needed – this operation involves removing some of the bone 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 the optic nerve. However, it’s quite uncommon for TED to progress to this stage so these treatments are not often needed.

Treating dry eye

When the eyes are dry and gritty the best treatment is to use lubricating eye drops – also known as artificial tears. These can help to make your eyes feel more comfortable and help to prevent your cornea (the clear front surface of your eye) becoming damaged from being so dry. Thicker gel type drops can be used to help lubricate the eyes for longer and ointments can help lubricate the eyes overnight. If your eyelids are not able to close fully, your ophthalmologist may suggest gently taping your eyelids closed at night to prevent your eyes from drying out. 

Treating double vision

An orthoptist is an eye professional who specialises in double vision and they will usually be involved in your treatment for this. Different treatments may be used depending on whether the double vision is temporary or permanent. 

Occlusion

One of your eyes can simply be covered up so that the brain receives only one image. This is usually used as a temporary solution in the active stages, 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. Stick-on prisms (Fresnel prisms) may be used temporarily until the angle is stable, at which point 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 treatment possible. As TED becomes inactive there is sometimes some double vision which remains and this may require surgical treatment.

What can I do to help?

During the active stages of TED, you may be advised of things you can do to help with some of the symptoms.

Puffiness around the eyelids tends to be worse in the mornings after lying flat. Sleeping propped on extra pillows up can help reduce the puffiness and congestion around the eyes.

Some people can find bright lights uncomfortable. Taking steps to reduce the amount of light entering the eyes such as wearing sunglasses or tinted eye shields can help during this period.

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 you need them. Also trying to avoid exposing your eyes to irritants such as dust can help keep your eyes feeling more comfortable.

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. Your underlying thyroid problem will normally be looked after by your GP or by a specialist in the hormone systems of the body (an endocrinologist).

Smoking can increase your chances of developing TED and can also make it dramatically worse. If you do smoke, you can see your GP about getting help to stop. People with active TED who smoke also often show little or no response to medical immunosuppression treatment.

Some evidence suggests that taking selenium supplements 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.

Long term effect of thyroid eye disease

In the majority of cases the active inflamed stage of TED resolves within about two years. Some of the symptoms caused by the swelling, such as lid retraction, exophthalmos or double vision may remain. This is because the tissues that have been inflamed are often less flexible once the active phase of the disease has passed, and they’re not able to return to their original position.  

If this is the case, then you may need 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 it isn't necessary to have more treatment, or that the risks of the surgery outweigh the problems that you have.  However there may be cases where surgery is a more obvious choice.

If surgery is needed then consideration should be given to orbital decompression (if needed) before surgery for double vision, and lastly eyelid surgery (for lid retraction, for example).Typically these operations are carried out over about 18 months to 2 years.

Orbital decompression, in which bone deep within the eye socket is removed, is carried out to let the eyes rest further back. Occasionally fat may also be removed from the inside of the socket. One of the main risks of this surgery is the development or worsening of double vision, so you may expect to need surgery to your eye muscles as well after this. There is also a small risk of serious sight problems with this surgery.

If you are left with stable persistent double vision, surgery on the muscles of the eye to improve the alignment of the eyes can be carried out. This can be done with an adjustable suture technique to obtain the best result.  Muscle surgery may alter the position of the eyelids and so you may expect to need lid surgery as well after eye muscle surgery.

Lid surgery will aim to correct the position of the upper and lower eyelids over your eyes, allowing them to close properly.

To have any of this surgery it’s important for your thyroid disease itself to be stable and for the active phase of TED to have burnt out.

With modern surgical techniques, very few people are left to cope with the difficult after-effects of TED. The modern surgical techniques now aim to restore the position, function and appearance of your eyes to as near to normal as possible.

What support is available?

Whether you have just been diagnosed with thyroid eye disease or have been living with it for a while, at RNIB, we are here to help and support you at every step.

Royal National Institute of Blind People (RNIB)
105 Judd Street
London
WC1H 9NE

Our RNIB Helpline is your direct line to the support, advice and products you need. We'll help you to find out what's available in your area and beyond, both from RNIB and other organisations.

Whether you want to know more about your eye condition, buy a product from our shop, join our library, find out about possible benefit entitlements, be put in touch with a trained counsellor, or make a general enquiry, we're only a call away.

RNIB Helpline
Tel: 0303 123 9999
Email: helpline@rnib.org.uk

We’re ready to answer your call Monday to Friday 8.45am to 5.30pm.

The Thyroid Eye Disease Charitable Trust (TEDct) can provide information, care and support to those affected by thyroid eye disease.
PO Box 1928
Bristol
BS37 0AX
Tel: 07469 921782
Email: info@tedct.org.uk

The British Thyroid Foundation aims to provide information and support for people with any kind of thyroid problems and their families.
Suite 12, One Sceptre House
Harrogate
HG2 8BP
Tel: 01423 810093
Email: info@btf-thyroid.org

Other useful contacts

Driver and Vehicle Licensing Agency (DVLA) can give you advice on sight standards for driving.
Drivers Medical Enquiries
DVLA
Swansea
SA99 1TU
Tel: 0300 790 6806

British Oculoplastics Surgery Society have useful information on their website about having surgery on your eyelids and around your eyes.

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