Thyroid eye disease is a condition in which the eye muscles, eyelids, tear glands and fatty tissues behind the eye become inflamed. This can cause the eyes and eyelids to become red, swollen and uncomfortable and the eyes can be pushed forward (‘staring’ or ‘bulging’ eyes).
In some cases there is swelling and stiffness of the muscles that move the eyes so that they no longer move in line with each other; this can cause double vision. Rarely TED can cause reduced vision from pressure on the nerve at the back of the eye or ulcers forming on the front of the eyes if the eyelids cannot close completely.
TED – also known as Graves’ Orbitopathy or Ophthalmopathy – is an autoimmune condition. It occurs when the body’s immune system attacks the tissue surrounding the eye causing inflammation in the tissues around and behind the eye. In most patients, the same autoimmune condition that causes TED also affects the thyroid gland, resulting in Graves’ disease. Graves’ disease most commonly causes thyroid overactivity (hyperthyroidism) but can also rarely cause thyroid underactivity (). TED can occur in people when their thyroid is overactive, underactive or functioning normally. It can also occur after treatment for Graves’ disease. People with TED need to be looked after by an eye specialist (ophthalmologist) and a thyroid specialist (endocrinologist).
Overall, about a quarter of people with Graves’ disease develop TED either before, during, or after their thyroid disorder is diagnosed. In most cases the eye disease is mild. If you have no features of TED by the time the Graves’ disease is diagnosed and you are a non-smoker or ex-smoker then your chance of developing TED is less than one in ten. But if you smoke your chance of developing TED is doubled. If you are a heavy smoker, the chances of developing TED is increased eight times compared to non-smokers.
These are the most common symptoms. See your doctor if you have any of the following and ask if it could be TED:
If you have puffy eyelids and puffy skin around and under the eyes and you have a severely underactive thyroid, this is probably not TED. It should improve once you are adequately treated with levothyroxine (thyroid hormone replacement treatment).
TED can sometimes be difficult to diagnose and patients may be treated for other conditions such as conjunctivitis, allergy or hayfever months before the diagnosis is made. The signs that the diagnosis may be TED rather than any of these conditions are:
Yes, it is well recognized that TED can affect your psychological and social well-being. If you have fluctuating thyroid levels you may feel anxious and/or irritable and suffer from mood swings until your hormone levels are stabilized. You may also feel anger, loss of self-esteem or confidence, or socially isolated, because of the change in the appearance of your eyes. Relationships may be affected – both social and at work. This is hardly surprising as the face and eyes are the most significant point of contact between individuals. TED can change your facial appearance and alter your expression which 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; and counselling, or contact with others who have TED, can help you find coping strategies.