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What is Thyroid Eye Disease?

Our introduction to Thyroid Eye Disease serves as an overview of the key causes, symptoms and treatments for the disease.

An introduction to Thyroid Eye Disease

Thyroid Eye Disease is an auto-immune condition. Auto-immune means that your own immune system (white blood cells or antibodies) is attacking and causing damage to parts of your body in addition to its normal role of protecting you against infections. In the case of Thyroid Eye Disease, the damage is directed to fatty tissue and muscles behind the eye causing inflammation. The inflammation may result in the eyes to become red and for swelling to occur above and below the eyes.

The inflammation and swelling of the tissues behind the eyes may also cause the eyes to be pushed forward (‘starey eyes’ known as proptosis; Figure). This often results in dryness of eyes and rarely may lead to ulceration of the cornea (transparent covering of the front of the eyes). In more severe cases, swelling and stiffness of the muscles that move the eye, cause squint and double vision especially when you look from side to side, as the muscles cannot keep the eyes exactly in line with each other.

Occasionally, the swelling behind the eyes is bad enough to press on the nerve from the eyes to the brain, affecting your vision.

Figure: Thyroid Eye Disease causing ‘starey eyes’ (proptosis)

Does it have any other names?

Doctors refer to this condition using many other names including ‘thyroid ophthalmopathy’, ‘thyroid associated ophthalmopathy’, ‘thyroid associated orbitopathy’, ‘Graves’ eye disease’ and ‘Graves’ ophthalmopathy’.

Am I likely to lose my sight?

No. It is very rare for the vision to be severely affected. Even if this is the case, prompt immuno-suppressive treatment (for example, intravenous steroids) or surgery can usually improve the situation.

What can be done about symptoms of Thyroid Eye Disease?

Irritation and redness of the eyes

Eye drops such as ‘artificial tears’ (for example, ‘Hypromellose’) will usually provide relief from irritation, grittiness and excessive watering. These drops are harmless and can be applied as often as required, even as much as hourly. For longer effect, lubricating ointments (for example, ‘Lacrilube’) may be used during the day or night.

Puffiness around the eyes

This is more difficult to treat. While the puffiness can be unsightly, it is not dangerous. It is worse in the morning after lying flat and may be helped by using an extra one or two pillows or bolster to raise your head at night, or raising the head of the bed on blocks. Usually the swelling does improve after several months as the eyes settle.

Surgery is sometimes used to improve the appearance in severe cases.

‘Starey eyes’ (proptosis)

If mild, this problem usually gets better with time as the eyes settle. In severe and long-term cases, it may not go away completely. However, the appearance can often be much improved by orbital decompression surgery (an operation to create more space in the eye socket) and/or surgery to the eyelids.

These surgeries are performed only after the inflammation from Thyroid Eye Disease has settled (called ‘inactive’ or ‘burnt out’ Thyroid Eye Disease), and the eyes are stable and not changing any further.

Some people find tinted spectacles helpful to disguise the appearance.

Double Vision

If this only occurs from time to time and/or only when you look out of the corner of your eyes it should not interfere with normal activities and does not require treatment. However, if the double vision occurs more frequently you need to seek specialist help. Plastic prism lenses added to glasses can improve the double vision. However, if you have active Thyroid Eye Disease and the double vision is getting worse, you may need immunosuppressive treatment.

If double vision is still a problem once Thyroid Eye Disease is inactive, eye realignment surgery can be an option.

Deteriorating vision

If this happens more than just occasionally and cannot be corrected by new spectacles, urgent medical attention is required as it may mean that there is pressure on the nerve behind the eyes. Urgent immunosuppressive treatment or decompression surgery may be necessary. Sometimes the problem with vision is caused by drying out of the eyes, which in turn causes ulceration in the cornea if the eyelids do not close fully at night.

Surgery may then be required to protect the eyes. It is recommended to frequently use of lubricant eye drops to prevent dryness of the eyes.

Can anything be done about the changes to my face?

Some of the effects of Thyroid Eye Disease improve with medical treatment and the passage of time. However, in a proportion of sufferers the changes persist long term. Many can camouflage these by simple measures such as growing a fringe or wearing tinted or dark glasses, but some experience considerable psychological difficulties as a result of changes in their appearance. This can result in loss of self-esteem, lack of self-confidence and anger at the changes.

Relationships are also affected at many different levels. All this is hardly surprising as the face and particularly the eyes are the most significant point of contact between individuals.

More research is needed into the psychological effects of changes in people’s appearance in Thyroid Eye Disease and also on the treatments aimed at rehabilitation. Certainly an increasing number of specialists are aware of these problems and are prepared to tackle them if there is significant disfigurement and once the disease has reached the stable inactive stage.

The rehabilitative surgical procedures can significantly improve the appearance (Figure) and vision (for example, correction of double vision). The surgical plan will be tailored to meet the individual’s needs but it is fair to say that the surgery is not easy and often more than one operation is needed.

Figure: Thyroid Eye Disease causing proptosis (‘starey eye’) of the right eye (before orbital decompression surgery)

Figure: Improvement in appearance after orbital decompression surgery

What can I do to help improve my Thyroid Eye Disease?

If you are a smoker, it is important to stop smoking. Smoking is a major risk factor for Thyroid Eye Disease. Smoking cessation aids faster recovery from active Thyroid Eye Disease, and outcomes from the medical and surgical treatments are better if you don’t smoke. You should also avoid passive smoking.

Keeping thyroid hormone levels stable is important, as both thyroid overactivity (thyrotoxicosis) and thyroid underactivity (hypothyroidism) are bad for Thyroid Eye Disease. You must regularly monitor thyroid activity with blood tests and ensure that you correctly take antithyroid tablets or thyroxine tablets that your doctor has prescribed. A small minority of people with Thyroid Eye Disease have normal thyroid function and don’t need to take antithyroid tablets or thyroxine tablets.

Where can I find more information? Can I make contact with fellow sufferers?

Many people with Thyroid Eye Disease find the changes in appearance distressing and contact with other sufferers who have had similar experiences is often very helpful. You can make contact with other people through the TEDct.

What other help is available from the TEDct?

TEDct has written information, an informative quarterly newsletter containing articles written by sufferers and medical specialists and UK telephone helpline advisors. TEDct also regularly organises ‘Patient Information Meetings’ held around the UK, in which specialist panels give talks and are available to answer your questions. Find out more about our helpline and meetings