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PATIENT INFORMATION
Thyroid eye disease is an auto-immune condition. Auto-immune means that your own white blood cells or antibodies are causing damage to parts of your body in addition to their normal role of protecting you against infections. In the case of thyroid eye disease, the damage is directed to fatty tissue behind the eye. Swelling of these damaged tissues can cause the eyes to become red and for swelling to occur above and below the eyes. It may also cause the eyes to be pushed forward (‘starey eyes’ known as proptosis). In more severe cases the damage at the back of the eye causes swelling and stiffness of the muscles that move the eye, causing 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. Doctors call this condition many other names including ‘thyroid ophthalmopathy’, ‘thyroid associated ophthalmopathy’, ‘Grave’s eye disease’ and ‘Grave’s ophthalmopathy’.
No. It is very rare for the vision to be severely affected. Even when it is, prompt surgery or immuno-suppressive treatment can usually improve the situation.
What can be done about thyroid eye disease? a. Irritation and redness of the eyes Simple eye drops such as ‘artificial tears’ (‘hypromellose eye drops@’ will usually give relief. These drops are harmless and can be applied as often as required, even as much as hourly. For longer effect Lacrilube Ointment may be used during the day or night. b. Puffiness around the eyes This is more difficult to treat. The puffiness is unsightly but 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, raising the head of the bed on blocks or using a diuretic (water tablet) at night-time. Usually the swelling does improve after several months as the eyes settle. Surgery is sometimes used to improve the appearance in severe cases. c. Starey eyes If mild, this problem usually gets better with time as the eyes settle. When it is severe and has been present a log time it may not go away. In this case, the appearance can often be much improved by surgery to the eyelids which is now becoming more common, once the eyes are stable and not changing any further. Some people find tinted spectacles helpful to disguise the appearance. d. 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 specialist help. Plastic prism lenses added to glasses can improve the double vision. At a later stage, if double vision remains, surgery as for squints in children can be done to realign the eyes. However, if the double vision is getting worse you may need ‘immunosuppressive treatment’. e. Deteriorating vision If this happens more than just occasionally and cannot be corrected by new spectacles , urgent expert attention is required as it may mean that there is pressure on the nerve behind the eyes. Immunosuppressive treatment or surgery (Decompression) to relieve pressure behind the eyes as soon as possible may be necessary. Sometimes the problem with vision are caused by drying out of the eyes if they are very prominent and the eyelids do close fully at night. Surgery may then be required to protect the eyes.
The changes in my face have affected me badly. Can anything be done about them? Some of the effects of thyroid eye disease improve with strict medical control 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 a 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 uninflamed stage. 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.
Can I get further information? Can I make contact with fellow sufferers? Yes. Many people find the changes in appearance with thyroid eye disease very distressing and contact with other sufferers who have been through the same thing is very helpful. You can make contact with other people through the TED Charitable Trust. How? By contacting us HERE
Is there more help available? Yes. TEDct has written information, an informative quarterly Newsletter with articles by sufferers and medical specialists, ‘phone numbers for local UK helpline advisors and access to ’Information Meetings’ held around the UK in which a panel of specialists give talks and answer your questions. How can I access this information? Join us - find out more HERE
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