This website has been developed and funded by Amgen. For UK & EU patients and carers affected by TED and/or autoimmune thyroid disease. Educational information only - not a substitute for professional medical care.

What is TED?

Thyroid Eye Disease (TED) is a serious, lifelong, debilitating and potentially vision-threatening autoimmune disease. It can significantly impact emotional well-being, daily activities and quality of life.1,2

TED belongs to a group of conditions known as autoimmune diseases.3 With autoimmune diseases, the body’s own immune system mistakenly attacks healthy cells.4 With TED, the body’s immune system attacks healthy muscle and fat tissue behind the eyes.3 TED is also progressive, which means it can get worse over time.2,4

If you have TED, your eyes may become red, swollen and bulging. As well as changes to their appearance, your eyes may feel gritty, dry or watery and you may experience double vision. Your eyes may become painful.1,6,7

You are at a higher risk of developing TED if:

Commonly Used Terms for TED

TED is a unique condition but is often mistakenly considered part of another disease called Graves’ disease.13 It’s important to know that Graves’ and TED are different diseases and require different management and care.8,9 Although they are separate conditions, TED may be called by names containing the word  Graves’  or  thyroid, like: 

Thyroid
  • Graves’ eye disease14
  • Graves’ ophthalmopathy (GO)3
  • Graves’ orbitopathy (GO)3
  • Thyroid-associated orbitopathy (TAO)15 
  • Thyroid ophthalmopathy16
  •  

If you hear any of these terms, know that they mean Thyroid Eye Disease (TED).   

Diagnosing TED

TED is progressive and catching it early is important, so it’s best to seek care from a doctor experienced in managing the condition.10
TED is usually managed by an eye doctor, such as an ophthalmologist or oculoplastic surgeon.3 Some ophthalmologists and oculoplastic surgeons have additional training and specialise in treating TED.17 If possible, it’s best that an endocrinologist (doctor who treats thyroid conditions) and an ophthalmologist work closely together to manage TED.18 You may also be looked after by doctors (and other healthcare professionals) with additional training on your specific conditions. These doctors may include endocrinologists, oculoplastic surgeons and neuro ophthalmologists, orthoptists, among others. You may also be looked after by doctors with additional training on your specific conditions.19 These doctors may include oculoplastic surgeons17and neuro-ophthalmologists,20 among others.

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Three Facts About TED 

How TED Develops

Thyroid Eye Disease (TED) can get worse over time if left untreated, which is why it’s important to look out for important signs and symptoms including:1,3,22

If you are experiencing new or worsening symptoms, change in your vision or are concerned, you should seek immediate medical advice from your doctor or care team

Stages of Disease

TED can be divided into two main stages, known as the active phase and the chronic phase.24,25 It is important for you and your doctor to know which stage you are at, so that you can receive the treatment that is right for you.

Active phase25

Active phase Active phase
  • During this time, the signs and symptoms of TED may appear suddenly and get worse over time.25
  • You may notice changes in your appearance and vision, including: redness, swelling, dry, gritty eyes, eye bulging, double vision, misaligned eyes or eyes that don’t work together, sensitivity to light, eye pain and pressure.25
  • As with many conditions, don’t put off seeking medical help. The sooner you speak to your doctor, the earlier you may be able to receive appropriate treatment.

Chronic phase25

Chronic phase Active phase
  • You may be entering the chronic phase if the inflammation and swelling have slowed or stopped, redness has decreased or gone away, and eye bulging hasn’t got any worse.25
  • Scar tissue from the acute phase may leave you with pain, eye pressure, double vision and misaligned eyes.1,6,25
  • The longer that TED goes untreated, the more likely it is for serious damage to happen to your eyes.22
  • Since TED is an autoimmune condition, over time you may experience "flares", which is when your symptoms suddenly come back or get worse despite no changes in quite some time.
  • A few potential causes for flares are stress, eye surgeries, pregnancy, medications, changes in thyroid levels and more.23
  • If you think you are experiencing a flare in your TED symptoms, it’s important to seek care quickly.