Revised 2015

What is Thyroid Eye Disease (TED)?

Thyroid eye disease (TED) is an eye condition in which the eye muscles and fatty tissue behind the eye become inflamed. This can cause the eyes to be pushed forward (‘staring’ or ‘bulging’ eyes) and the eyes and eyelids to become swollen and red. In some cases there is swelling and stiffness of the muscles that move the eyes so that the eyes are no longer in line with each other; this can cause double vision. Rarely TED can cause blindness from pressure on the nerve at the back of the eye or ulcers forming on the front of the eyes.

TED is an autoimmune disease. It occurs when the body’s immune system attacks the back of the eye and causes inflammation. It is mainly associated with an over-active thyroid due to Graves’ disease, although it does sometimes occur in people with an under-active or normally functioning thyroid. Graves’ disease is the most common cause of an over-active thyroid (hyperthyroidism) in the UK. TED is also known as Graves’ orbitopathy (GO).

What is the chance that I will develop TED?

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.

What are the symptoms of TED?

These are the most common symptoms. See your doctor if you have any of the following:

  • Change in the appearance of the eyes (usually staring or bulging eyes)
  • A feeling of grittiness in the eyes
  • Dry or watery eyes
  • Dislike of bright lights
  • Swelling or feeling of fullness in one or both upper eyelids
  • Bags under the eyes
  • Redness of the lids and eyes
  • Blurred or double vision
  • Pain in or behind the eye, especially when looking up, down or sideways
  • Difficulty moving the eyes

If you have puffy eyelids and skin around and under the eyes and you have a severely under-active thyroid, this is probably not TED. It should improve once you are adequately treated with levothyroxine.

TED can sometimes be difficult to diagnose and patients may be treated for conjunctivitis, allergy or hay-fever for months before the diagnosis is made. The clues that the diagnosis may be TED rather than the above are:

  • Symptoms may occur in the wrong season for hay-fever
  • Allergies usually cause itchy eyes, whereas TED does not
  • Conjunctivitis usually causes sticky eyes, whereas TED usually does not
  • TED often is associated with an ache or pain in or behind the eye, especially when trying to look up or sideways, whereas the other above causes do not
  • TED is sometimes associated with double vision, whereas the other causes are not

Can I do anything to prevent TED from getting worse?

Three things you can do are:

If you are smoker, give it up - ask your doctor for advice on how to stop, or enrol on a quit-smoking programme. Patients with TED who continue to smoke respond less well to treatments, but this disadvantage seems to disappear soon after giving up smoking. Also non-smokers or ex-smokers are more likely to be cured of their thyroid over-activity after a course of Carbimazole (CMZ) or Propylthiouracil (PTU) treatment, than smokers.

See also information about Smoking and Graves’ disease on the BTF website.

Avoid fluctuations in your thyroid levels - particularly hypothyroidism. Make sure that you have thyroid blood tests regularly, and follow the advice given by your doctor about when and how to take your medication. This will make sure that your thyroid levels remain normal and steady, which will give your eyes the best chance of healing and improve the way you feel.

Selenium supplements - evidence suggests that patients with mild active TED may benefit from a six month course of selenium supplements at a dose of 100mcg twice daily which you can buy over the counter.

Can TED affect my quality of life?

Yes, doctors are increasingly aware 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 stabilised. You may also feel anger, loss of self-esteem or confidence, or socially isolated, because of the change in the appearance of your eyes. Treatment - including surgery - can often improve this; and counselling, or contact with fellow TED sufferers, can help you find coping strategies. Contact the British Thyroid Foundation, The Thyroid Eye Disease Charitable Trust, or your local eye centre for help in locating a support group.

What treatments are available for people with TED?

In mild cases, if your eyes feel gritty, water a lot and feel uncomfortable in bright lights, then artificial tear drops will help your eyes feel more comfortable. Selenium supplements (100mcg twice daily for six months) are beneficial in patients with mild TED. If you have other symptoms ask your GP or endocrinologist (the specialist looking after your thyroid) to refer you to an ophthalmologist (an eye doctor). Ask for a referral if you have other symptoms even if you have not yet been diagnosed with Graves’ disease. The ophthalmologist will be able to confirm whether you have TED and look at treatments to help your eyes.

The symptoms may worsen for the first six to 12 months or so but after that your eyes should improve. It can take up to two years before the inflammation has gone.

Unfortunately, many people with TED are left with a permanent change, usually in the physical appearance of their eyes or sometimes double vision. Surgery can improve appearance. In more severe cases it can be combined with other treatments such as steroids and radiotherapy. Rehabilitative surgery may involve:

  • 'Decompression' surgery to create more space behind the eyes when there is pressure on the nerve or if there is a lot of protrusion of the eyeballs, in order to improve a person’s appearance
  • Eye muscle surgery to treat double vision; and/or
  • Eyelid surgery to improve the appearance of the eyelids

Other treatments for TED include:

  • Prisms attached to spectacles (to help the double vision)
  • High dose steroids, to improve double vision

What should I do if the symptoms get worse?

In less than 5% of people TED becomes very severe. You might experience disabling double vision; the delicate covering of the coloured part of the eye known as the ‘cornea’ can develop ulcers and interfere with vision; and - rarely - the ‘optic nerve’ carrying messages to the brain can be compressed, leading to loss of vision. If these complications are diagnosed early the treatment can still be successful.

If you develop any of the following symptoms you should see your doctor without delay and ask for immediate referral to a specialist eye centre with experience of treating TED:

  • Your symptoms get increasingly worse over a period of several days or weeks
  • You have blurred vision which does not improve by blinking or covering each of the two eyes in turn
  • You become aware that colours do not appear as bright as they used to, or there is a difference in how bright colours seem when you compare one eye with the other
  • You see double on looking forwards or downwards
  • You have to keep your head tilted sideways or backwards to avoid seeing double

Some important points….

  • There is now a lot that can be done to help people with TED, from artificial tear drops to surgery
  • Smoking increases your chance of getting TED. Patients with TED who continue to smoke respond less well to treatments. Ask your doctor for advice on how to stop
  • Avoid fluctuations in your thyroid levels – have regular blood tests and take your medication regularly
  • TED can affect your psychological and social well-being. Don’t hesitate to ask your doctor for advice
  • Ask your doctor to refer you to a specialist eye centre which has experience of thyroid eye disease, especially if the symptoms become more severe

Further information can be obtained from:

The Thyroid Eye Disease Charitable Trust
PO Box 1928
Bristol BS37 0AX
Helpline 07469 921782
info@tedct.org.uk
www.tedct.org.uk

It is well recognised that thyroid problems often run in families and if family members are unwell they should be encouraged to discuss with their own GP whether thyroid testing is warranted.

If you have questions or concerns about your thyroid disorder, you should talk to your doctor or specialist as they will be best placed to advise you. You may also contact the British Thyroid Foundation for further information and support, or if you have any comments about the information contained in this leaflet.

The British Thyroid Foundation

www.btf-thyroid.org
The British Thyroid Foundation is a registered charity: England and Wales No 1006391, Scotland SC046037

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Endorsed by:

The British Thyroid Association - medical professionals encouraging the highest standards in patient care and research
www.british-thyroid-association.org

The British Association of Endocrine and Thyroid Surgeons - the representative body of British surgeons who have a specialist interest in surgery of the endocrine glands (thyroid, parathyroid and adrenal)
www.baets.org.uk

First issued: 2008
Revised: 2011, 2015
Our literature is reviewed every two years and revised if necessary.
© 2015 BRITISH THYROID FOUNDATION

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