Thyroid Eye Disease Specialist
(Graves’ Orbitopathy)

Thyroid eye disease (TED), also known as GO (Graves’ Orbitopathy) is a rare condition that is often very stressful. It can be very difficult to come to terms with, as it involves not only the function and appearance of the eyes but often changes the whole appearance of the face. There are effective medical and surgical treatments for the different stages and types of TED.

The best care is provided by an oculoplastic, ophthalmologist, specialist in TED and an endocrinologist.

Mr Uddin is a leading specialist in thyroid eye disease, with over 20 years of experience in treating this condition. He runs the TED clinic at Moorfield's Eye Hospital, where 5000 thyroid eye disease cases have been treated over 15 years. Mr Uddin has personally performed over 500 orbital decompression procedures in the last 10 years.

Mr Uddin supports education, research and support of TED patients. He is a founding member and former President of the ITEDS (International Thyroid Eye Disease Society), original member of the award-winning TEAMed working group and past chairman of TEDct

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“Thyroid eye disease is a fascinating condition, commonly associated with an overactive thyroid, but this is not always the case… The disease can be split into different categories or ‘phenotypes’ with different drivers and characteristics which respond to treatment in different ways… Symptoms of thyroid eye disease, can be similar to other conditions, requiring expert interpretation of clinical signs and investigations.”

Can Thyroid Eye Disease (TED) be treated?

A patient journey: This is an example of a man presenting with quite severe TED in the active phase. Each patient has their own journey which can sometimes be helped with various treatments at different stages

He presented early with severe, active TED

He presented early with severe, active TED

Following treatment with steroids and radiotherapy.
His left normalised and he had residual prominence of the right eye

Following treatment with steroids and radiotherapy. His left normalised and he had residual prominence of the right eye

He underwent right orbital decompression, achieving a good, symmetrical globe position, with persistent right upper eyelid retraction

He underwent right orbital decompression, achieving a good, symmetrical globe position, with persistent right upper eyelid retraction

He then underwent right upper eyelid lowering surgery

He then underwent right upper eyelid lowering surgery

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Patient with left upper lid retraction treated

What is Thyroid Eye Disease?

“Thyroid eye disease is heterogenous....there are different types or “phenotypes”...with different clinical characteristics..with different ‘drivers’ for disease. It is important to try to differentiate these types as they respond better to the appropriate treatment “

Phases and types of TED

The progression of the disease can be split into three phases:

1. Early, active ‘wet’ phase (can last 6 to 18 months)

2. Mid, plateau phase (the disease is stable, can last a some months)

3. Late, “burnout”, ‘dry’ phase (after 12 to 24 months)

Thyroid eye disease (TED), also known as Graves’ eye disease, is an autoimmune condition in which the fat and muscles around the eye become inflamed. These can expand to cause proptosis (prominent eye pushed forward), eyelid retraction (starey appearance) and double vision (muscles become stiff and don’t move properly). It is more commonly found in Europe and America.

The progression of the disease can be split into three phases.

  1. Early, active ‘wet’ phase (can last 6 to 18 months)
  2. Mid, plateau phase (the disease is stable, can last some months)
  3. Late, “burnout”, ‘dry’ phase (after 12 to 24 months)
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“Thyroid eye disease is heterogenous....there are different types or “phenotypes”...with different clinical characteristics..with different ‘drivers’ for disease. Its important to try to differentiate these types as they respond better to the appropriate treatment.”

Is Thyroid Eye Disease permanent?

In the early phase of TED, there is more possibility of reversing and reducing the changes and minimising the progression of TED. So, treating the disease early will result is a less permanent change. Treatments include steroids, but it is also important to control risk factors (thyroid control and smoking). Ideally, this should be considered in the first 2 to 6 months from onset of symptoms but can be implemented up to a year or so. Although there are some drugs which may work to reverse changes after this period.

When TED has “burnt out”, after one to two years, many of the physical and functional changes can be improved with surgery.

What causes Thyroid Eye Disease?

Most cases of TED are due to hyperthyroidism, an overactive thyroid gland producing too much thyroxine (thyroid hormone). Hyperthyroidism is associated with an autoimmune condition called Grave’s disease, where the body’s immune system produces particular antibodies which stimulate the thyroid gland, causing it to become overactive.

These same antibodies (TSH-receptor antibodies) are thought to trigger TED, causing the immune system to attack the tissue surrounding the eye and making it inflamed. Occasionally, those with TED have normal thyroid function, but may go on to develop hyperthyroidism (within a year.)

What are the symptoms of thyroid eye disease?

Symptoms of TED depend on the severity of the condition. For most people, the effects of TED are mild, with symptoms progressing over a few months. These can include red, sore, gritty or watery eyes and puffy eyelids. Due to the inflammation, the eyeballs may be pushed forward causing the eyes to look bulging (proptosis) and give an appearance as if they are staring.

  • Irritation or grittiness of the eyes
  • Excessively teary eyes (sometimes worse in the morning)
  • Sensitivity to light (photophobia)
  • Redness and and thickening of the skin
  • Starey eyes (eyelid retraction)

  • Poor closure the eyes (lagophthalmos)
  • Bulging of the eyes (proptosis)
  • Puffy upper and lower lids (as well as the brow and face) which may be worse in the morning
  • Pain or ache behind the eye and with movement, especially looking up
  • Double vision (diplopia )which can be variable
  • Blurred vision or reduction in vision
What are the symptoms of more severe thyroid eye disease?

For patients where the disease is more severe, symptoms can progress quickly over a few weeks. The symptoms listed above may be more severe, especially redness, double vision, worsening proptosis, pain behind the eye and reduced eye movement. In some cases, vision may be reduced, in particular colour vision. This may indicate damage to the optic nerve.

TED may be made worse by radioiodine treatment.

Patient referred with severe TED with nerve damage and big muscles on CT scan. Did not get better on high dose steroids.

A few days after orbital decompression, steroids were able to be stopped and he was better.

Occasionally, severe TED with damage to the optic nerve can look like milder disease as in these two cases. MRI shows “apical crowding”.

What is the psychological impact of TED?

Those with TED may feel very unhappy or anxious about their condition. As well as affecting the appearance of the eyes it can affect the whole face including the skin and eyebrows, which can cause an individual to feel self-conscious, making it difficult for them socially and professionally. Quality of life scores have been shown to be lower in patients with TED. Mr Uddin and his team are dedicated in significantly improving quality of life and self-esteem for those with TED.

We have shown at Moorfields Eye Hospital that decompression surgery significantly improves the quality of life of patients who undergo this type of treatment

Can these symptoms indicate another condition?

Symptoms associated with TED, may sometimes be an indicator of other conditions, especially if one eye is affected and the thyroid function is normal. Conditions with similar symptoms & signs include:

  • Other orbital inflammatory diseases
  • Carotid-cavernous fistula, which is an abnormal connection between arteries and veins

    A patient with a low flow fistula (NOT TED) can look similar to severe TED (below)

Patient with severe TED (“hydraulic Apex”) referred on high dose steroids with improvement.

Patient was better after decompression surgery and was able to stop steroids

  • Orbital tumours

This an MRI of a patient referred with TED that did not respond to treatment. On careful inspection, the muscle shape is not constent with TED. A biopsy confirmed carcinoid cancer.

What investigations may be carried out?

Mr Uddin works alongside a team of highly experienced thyroid specialists (endocrinologists), orthoptists and immunosuppressive specialists in the investigation and treatment of TED.

To treat TED, it is important to establish the severity of the condition and level of inflammation. A range of tests can be carried out including visual function and eye movement tests, along with blood tests looking at thyroid function and thyroid antibodies. Occasionally, a magnetic resonance imaging (MRI), or computed tomography (CT) scan may be performed.

CT scan showing fat expansion largely

CT scan showing muscle expansion

The right medial wall has been decompressed

Patient cannot look up (left eye). Has large inferior rectus muscle on CT scan. MRI shows
“active” inflammation.

What treatments are available for thyroid eye disease?

Treatment for TED depends on the type, phase, activity and severity of the condition.

In the early phase of TED

  • Medication may be prescribed to treat the overactive thyroid.
  • Avoid fluctuating levels of thyroid and underactivity
  • Avoid radioiodine if you have active TED
  • Other risk factors such as lifestyle choices, smoking, diabetes and blood pressure should be optimised.
  • Smoking makes TED worse and stopping will help TED get better and respond to treatment.
  • A selenium food supplement may be recommended. Dose of 100 mcg twice a day. It can be bought over the counter.
  • Topical medication, including lubricating eye drops and ointments, may be prescribed for those with dry eyes.
  • Measures designed to keep the head raised are usually advised, such as sleeping with an extra pillow at night.
  • Double vision can sometimes be helped with stick-on prisms called Fresnel prisms

In moderate to severe cases during the inflammatory phase

  • anti-inflammatory drugs are usually prescribed.
  • Some patients will also receive intravenous steroids weekly for about 3 months or other immunosuppression drugs, which reduce the re-emergence of inflammation.
  • The patient was treated with intravenous steroids, below, with the improvement of double vision and eyelid retraction.

  • For more severe cases additional treatments may be needed such as radiotherapy or surgery.

  • There are also additional biological treatments
  • If the cornea (protective outer layer of the eye) is dry due to the eyelids not closing properly. This is treated with artificial tears or with the use of a moisture chamber (a means of slowing down the evaporation of tears). For those experiencing double vision, this can be improved by the use of a ‘Fresnel prism’, a transparent plastic sheet that attaches to the lens of glasses altering the direction of the image entering the eye.
How does intravenous steroids treat TED?

With moderate to severe cases, some patients will also need to receive intravenous steroids on a once weekly basis for about 12 weeks. This is a proven and approved method of treatment and disease-modifying, benefiting over 70% of patients in this group. The use of an oral version of MP seems promising and used for patients who are unable to have intravenous.


Patient treated with intravenous steroids only, with reduction of proptosis, eyelid retraction and puffiness

What other treatments can be used?

Other treatment modalities include the second line is immunosuppression to reduce the need for high and continuous steroids which may have side effects.

There is evidence to suggest extended use up to year which may help reduce re-emergence of the inflammation.

Is radiotherapy an effective treatment for TED?

Surgery may be needed to restore the look and function of the eyes, eyelid and face. The type of surgery depends on the category of TED and needs and wishes of the individual. It is usually performed in the late stage, when the disease is stable and has stopped progressing. Surgery is required at an earlier stage if the condition is severe or if vision or the cornea (protective outer layer of the eye) is significantly affected.

“My opinion is that radiotherapy has an important role treating active TED when you wish to reduce steroid dose, duration and side effects; and there is evidence to suggest that it improves eye movements and reduces progression to optic neuropathy.”

There is good evidence from Europe to show that radiotherapy works and is effective for active thyroid eye disease, especially if there are eye movement problems.

More recent studies have suggested that radiotherapy is less effective. It is a relatively safe treatment used for many decades, with few side effects and no systemic side effects. "

Treatment for severe or resistant cases

There are other treatment options, which include immunological agents.

Surgery is effective for severe cases that do not respond to steroids

This patient with severe TED was treated with steroids and decompression surgery

Post-treatment, TED has resolved

Furthermore, Tepezza (Teprotumumab) is a promising new treatment option but is not available in the UK at present. A study into the drug concluded that “among patients with active thyroid eye disease, teprotumumab resulted in better outcomes with respect to proptosis, Clinical Activity Score, diplopia, and quality of life than placebo; serious adverse events were uncommon”.

What surgery can be performed?

Surgery may be needed to restore the look and function of the eyes, eyelid and face. The type of surgery depends on the category of TED and needs and wishes of the individual. It is usually performed in the late stage, when the disease is stable and has stopped progressing. Surgery is required at an earlier stage if the condition is severe or if vision or the cornea (protective outer layer of the eye) is significantly affected.

There are several different surgical procedures that can be performed:

  1. Decompression surgery: This involves removing part of the bones or fat from the eye socket, creating more space behind the eyes and allowing the eye to fall back to a more natural position. Decompression surgery can also help alleviate optic neuropathy (damage to the optic nerve and vision) by relieving pressure on the nerve.

Decompression surgery can be performed in many ways and needs to be tailored to the individuals needs and wishes.

There are four “walls”. The first 3 refer to the walls of the orbit

  • lateral wall (safe, effective with almost no new-onset double vision)
  • medial wall (better for optic neuropathy, with double vision rate of about 30%)
  • floor (used if more decompression is required for severe TED)
  • fat decompression (referring to removing excess fat behind the globe. This Is very useful for limited decompression)

    2. Squint surgery: This procedure is performed for double vision and squint correction. The muscles attached to the eye are moved to the correct position and eye movement is improved.

    3. Lid surgery: This procedure is used when the eyes appear as if they are staring or are puffy. It involves lowering the upper eyelids or raising the lower eyelids. It can be done through an anterior approach, where an incision is made in the skin (fat & skin may also be removed). Otherwise a posterior approach is used where no incision is made into the skin, instead it is performed from the underside of the eyelid.

This patient underwent decompression surgery with improvement in prominence of the eye, but still full brow areas. Blepharoplasty and a brow reduction improves the appearance and gives a more natural look.

An enhanced blepharoplasty (a procedure which removes excess skin and fat around the eyelids) can performed in conjunction with lid surgery to improve eyelid position or eye bags, excessive fat bulges. This can also include additional procedures including mid-face lifts.

The lower eyelids can be raised (if patient does not want decompression surgery).

This patient had a lower eyelid retractor recession and hard-palate graft to raise both lower eyelids.

How do you treat upper lid retraction?

In the early phase of the disease, control the systemic thyroid and stop smoking. Immunosuppression can also be effective in selected cases.

Lubricants will help symptoms of dryness and redness.

Selenium supplement may help.

injections to the retracted upper eyelid can also be used.

Injectable fillers can also bring the upper lid down as a temporary measure

In the later phase of the disease, surgery is often the best option under local anaesthesia day case procedure.

This can be done through the skin, when the brow and thicker lid tissues can also be thinned. Or posteriorly (“scarless”), with no skin incisions.

What are there the risk factors for Ted?

Women are four to six times more likely than men to get TED

Patients with poor control of their systemic thyroid (which goes up and down) tend to have worse disease. Controlling their thyroid to a stable consistent level helps control their thyroid eye disease in most cases.

Smoking increases the severity of thyroid disease and also probably response to treatment is worse in patients who smoke. Stopping smoking will help.

There is some evidence to suggest that low selenium levels in the diet may contribute to Ted. As evidenced that taking selenium supplements may help

Can radioactive iodine treatment make TED worse?

Radioactive iodine (radioiodine) therapy can be an effective treatment for an overactive thyroid. It damages cells in the thyroid gland, reducing the amount of thyroxine produced. There is evidence that radioiodine therapy can cause or worsen TED. A course of steroid tablets can be taken to reduce this risk. For those with inactive or stable TED, the radioiodine treatment does not usually have an impact.

Can Thyroidectomy affect TED?

There are no studies to prove thyroidectomy is protective for TED. However, this appears to be a good method to control systemic thyroid control, as long as the correct level of thyroid medciation is given post-operatively.

What are the symptoms of hyperthyroidism?

Those with an overactive thyroid may experience anxiety, irritability, tremors and fatigue, as well as weight loss, increased heart rate and sleep disturbances. These can cause a low mood and sometimes depression.

What antibody causes TED/Graves’ Eye Disease?

Hyperthyroidism is associated with an autoimmune condition called Grave’s disease, where the body’s immune system Produces antibodies (TSH-receptor antibodies-TRab/TSH-R antibodies)) that stimulate the thyroid gland causing it to become overactive. These same antibodies are also thought to st UK late or drive TED.

What is the difference between Thyroid Eye Disease and Graves’ Orbitopathy? Why are there other names for TED?

Thyroid Eye Disease and Graves’ Orbitopathy are the same. Different countries and societies have adopted different names and it is still debated!

They all relate to changes around the tissues of the eye (the orbit) rather than the eye itself.
So “orbitopathy” may be a reasonable interpretation, but the effects are on what most people would call the “eye”.

Names include:
Thyroid Eye Disease (TED)- Widely used in the UK, US, Europe, Asia, America, Australia
and Africa
Graves’ Orbitopathy (GO)/Graves’ Ophthalmopathy - Used in Europe and elsewhere

Robert James Graves (1796 – 1853) was an Irish physician who lectures describibg  ‘Newly Observed Affection of the Thyroid Gland in Females‘ Graves with goitre and palpitations.

Thyroid-Associated Orbitopathy (TAO) / Thyroid Associated Eye Disease (TAED) /Thyroid related ophthalmopathy/ Basedow’s disease - Used in US

Carl Adolph von Basedow (1799-1854). He also described features of TED in patients.

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