Thyroid eye disease is an ‘autoimmune condition. ‘Autoimmune’ means that your own white blood cells or antibodies are causing damage to parts of your own 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 and muscles behind the eye. Swelling of the damaged tissues behind the eyes can cause the eyes to become red and swelling to occur above and below the eyes. It may also cause the eyes to be pushed forward (‘starey eyes’, ‘proptosis’, ‘exophthalmos’). 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. Does it have any other names? Doctors call this condition many different names including ‘thyroid ophthalmopathy’, ‘thyroid associated ophthalmopathy’, ‘Graves’ eye disease’, ‘Graves’ ophthalmopathy’ and ‘Graves’ orbitopathy’.
We do not know yet. Something triggers the ‘autoimmune reaction’. This may be a virus infection, but no virus has been identified as a trigger. Stress is commonly observed as a trigger but we do not know how this works. The disease can run in families, and genetics play a role. Smoking is a strong risk factor, and stopping smoking is one of the most important things patients can do to help their disease. We do know that thyroid eye disease, as its name suggests, is closely connected with autoimmune thyroid gland disease.
The commonest symptoms are mild soreness and grittiness of the eyes. Surprisingly, one eye is usually affected more than the other. There may also be increased watering of the eyes, a dislike of bright lights and a feeling of discomfort behind the eyes especially when looking up or side-to-side. Puffiness of the upper eyelid or around the eyes (‘baggy eyes’) is also common and is worst first thing in the morning. The eyes often appear ‘starey’ and drying of the eyes or too much tears can cause blurry vision, which may come and go. You should consult a specialist urgently if your vision is getting worse all the time, rather than just on and off.
In addition to the antibody or white cells that cause the eye problem, 90% of people with thyroid eye disease also have an antibody in their blood which causes an overactive thyroid gland. The overactive thyroid gland is called Graves’ Disease, after Dr. Graves who first recognised it 200 years ago. The reason the autoimmune condition affects both the eyes and the thyroid seems to be that they share a common molecule, the TSH receptor. The eyes and thyroid are not always affected at the same time. For example, the thyroid overactivity can come first and then the eye disease can develop even after the thyroid has been treated. Also, treatment of one does not treat the other. A small number of people who develop thyroid eye disease have no thyroid disturbance and some have an underactive thyroid.
In general, no. Treatment of the thyroid overactivity with tablets or surgery rarely affects the eye. However, studies have suggested that radioactive iodine treatment for the thyroid may make the eye problems worse. Since the eye and thyroid problems, although connected in some way, run their own separate courses, worsening of the eyes after thyroid treatment is often a coincidence rather than a direct effect of the thyroid treatment. Nonetheless, it is strongly recommended that patients with severe eye disease avoid radioiodine. If you have milder problems, you should receive a three month course of steroids starting on the day of radioiodine to prevent the eyes becoming worse. If you have no eye problems then radioiodine is an excellent treatment. Treatment for the thyroid may also affect the eyes in one other way: If the thyroid is over treated and your thyroid becomes underactive (hypothyroid) this can worsen any eye problems.
To some extent. Giving up smoking and careful checks of thyroid hormone blood levels to avoid underactivity may help prevent the eye problems getting worse although they are not the full answer.
In most patients with the milder form of thyroid eye disease, the eye problems settle after a period of time, but this may take from 6 to 18 months. More severe forms of the condition may initially deteriorate over some time, then stabilize and then improve over a similar time frame, but often the eyes do not return to normal when the disease has been more severe. Once the eyes have stabilized, then surgery can be considered to improve their appearance, comfort and to improve any double vision that might persist. If your eyes have been the same for more than six months, it is unusual for them to get worse.
Simple eye drops such as ‘artificial tears’ 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.
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.
If mild, this problem usually gets better with time as the eyes settle. When it is severe and has been present a long time then it may not go away. In this case, the appearance can often be very much improved by surgery to the eyelids, once the eyes are stable and not changing any further. Some people find tinted spectacles helpful to disguise the appearance.
If this only occurs from time to time and/or only when you look out of the corner of your eyes then 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 the 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’ (see below).
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 (see below) or surgery to relieve pressure behind the eyes as soon as possible may be necessary. Sometimes the problems with vision are caused by drying out of the eyes if they are very prominent and the eyelids do not close fully at night. Surgery may then be required to protect the eye.
If you are a smoker or are exposed to smokers, then stopping smoking or avoiding passive smoking is a positive thing that you can do to stop your eyes getting worse and perhaps help them to get better.
When double vision is getting worse or the accuracy of vision is deteriorating, stronger treatment may be used to calm down the immune system (immunosuppressive treatment) and reduce the swelling behind the eyes. Some specialists use low dose radiotherapy to the eyes. This is often effective and side effects (in experienced hands) are minimal. Currently, standard ‘immunosuppressive treatment’ involves steroid tablets at high dosage. This treatment is effective but can cause swelling of the face, increase in weight, thinning of the bones, sleeplessness and diabetes. It is therefore reserved for severe cases and must only be used under specialist supervision. Once the thyroid eye disease reaches the stable uninflamed state, these treatments are not effective.
Occasionally, yes, especially if they were only mildly affected. However, this may take up to 12-24 months. The longer the eye changes have been present, the less likely it is that they will go away. This is because the swelling turns to scarring and even immunosuppressive treatment will not reduce the swelling. Expert treatment is then required, usually involving carefully planned surgery, and can be very effective in improving the appearance of the eyes.
It is very rare for the vision to be severely affected. Even when it is, prompt surgery or immunosuppressive treatment can usually improve the situation.
It is very rare to get another “attack” of thyroid eye disease, and this probably occurs only in about 1 in every few hundred patients with the disease. If it does occur, it can be many years after the initial “attack”. 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 as the face and particularly the eyes are the most significant point of contact between individuals. Much can be done with surgery to improve the appearance and comfort of the eyes, but it may require more than one operation. With surgery, the eyes can often be returned to an appearance more like the eyes were before the disease began.
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 a Thyroid Eye Disease (TED) self-help group. Some useful starting points are listed below.