Thyroid eye disease

What is it?

Thyroid eye disease (TED) is a condition in which parts of the eye and eye socket become inflamed and swell. It’s an ‘autoimmune’ disorder, which means that the body uses its natural defences against its own cells.

Around 300,000 people in the UK have TED. It is also known as Graves orbitopathy or Graves ophthalmopathy.

  • Causes

    We don’t fully understand what causes TED. But we do know that the body’s immune system triggers a chain of events that leads to swelling and scarring around the eye socket as well as an increase in the amount of tissue.

    TED is most likely to affect people with an over-active thyroid gland.

  • Symptoms

    The most common symptoms of TED are redness and discomfort. Swelling of the fat and muscle behind the eye can push the eyes forward (known as proptosis). This may prevent the eyelids completely meeting when blinking or closing the eyes (‘lagopthalmos’).

    Eyelids may open too far (eyelid retraction) exposing the clear, sensitive window of the eye (the cornea) to damage.  The cornea may become dry and uncomfortable. In addition, the inner lining of the eyelid (the conjunctiva) can become inflamed (conjunctivitis), or swell (chemosis).  

    In some people, eye movements are reduced and this can cause double vision.  In extreme cases the optic nerve (which is the cable connecting the eye and the brain) is squeezed. This could potentially cause sight loss.  

  • Treatments

    In many cases, the swelling and inflammation may get better on their own but a doctor may suggest lubricating eye drops or nutrition supplements to help while this happens.  Abnormal thyroid gland activity needs to be treated as uncontrolled activity could drive the changes in TED.

    Smoking is a risk factor that is known to make TED much worse.  Smokers should stop (or at least drastically cut down). GPs can provide support with this.

    If the swelling and inflammation is moderate or severe then a doctor may suggest therapy with steroids.  Other ways to tackle inflammation include treatment with x-rays (radiotherapy) or newer drugs such as Rituximab. 

    When the inflammation has settled, surgery may be an option. The aim is to help the eyes move back into their sockets and take pressure off the optic nerve.

    Decompression surgery is sometimes done in an emergency if there is a threat to sight. Surgery to improve double vision (squint surgery) and to repair the eyelids may also be needed.

  • Research

    TED medical research is all about getting a better understanding of the so that we can develop treatments to prevent it and improve people’s quality of life.

    Steroids do work for some people, but not for everyone. They may also cause unwanted side effects, so we do need better treatments.

    Read our research projects



     

  • Clinical trials

    You could play an important part in eye research by being a participant in clinical research study that may benefit many people. You could even help shape clinical research by becoming more actively involved and having a say. Patients, carer, or anyone with an interest can help.

    What are clinical trials

    Clinical trials are research studies that find out if a medical strategy, treatment, or device is safe and effective for humans. They are a key research tool for improving medical knowledge and patient care. The people who carry out research are mostly the same doctors and healthcare professionals who treat people. Their aim is to find better ways of treating patients and keeping people healthy.

    Taking part

    Here are some ways to find out about research projects and clinical trials that you can get involved in.

    UK Clinical Trials Gateway

    The UK Clinical Trials Gateway run by the National Institute for Health Research (NIHR) provides easy to understand information about clinical research trials running in the UK, and gives to a large range of information about these trials. It is designed to enable patients and clinicians to locate and contact trials of interest. Visit their website and select the eye condition that you are interested in.

    NIHR Clinical Research Network Portfolio

    The NIHR Clinical Research Network Portfolio is a database of high-quality clinical research studies in England, Northern Ireland, Scotland and Wales. Within this the Ophthalmology Specialty Group supports a national portfolio of research studies in ophthalmology and the vision sciences. See their website for details.

    If you wish to join a trial it is always best to discuss this with your doctor or clinical team first.

Last updated September 2015
Approved by Dr Sri Gore, Moorfields Eye Hospital

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