Thyroid Eye Disease Patient Information

Thyroid eye disease- patient information FAQs

1. What is thyroid eye disease?

Thyroid eye disease also known as Graves` Ophthalmopathy or Graves` Orbitopathy. It is an autoimmune condition in which body`s immune system attacks eyes and surrounding tissues causing inflammation and swelling. In most of these patients thyroid is also affected by the same immune process. Majority of the patients have associated overactive thyroid (thyrotoxicosis), while a minority of patients may have under-active thyroid (hypothyroidism) or even normal thyroid (euthyroid). 

2. Who is at risk of getting thyroid eye disease?

Graves` disease

Almost half of the patients with Graves` thyrotoxicosis (overactive thyroid) may have some features of thyroid eye disease. Majority of the patients develop symptoms of overactive thyroid and thyroid eye disease at the same time. However, in about 10 % patients thyroid eye disease may be noticed even before or after diagnosis of overactive thyroid. About 10 % patients may have underactive or normal functioning thyroid gland at the time of diagnosis of thyroid eye disease.

Smoking

Apart from overactive thyroid, the most important risk factor is smoking. Those who smoke are twice more likely to develop thyroid eye disease and in moderate to heavy smokers this risk may increase up to seven or eight times compared to those who do not smoke or have never smoked. Passive smoking poses is also a risk factor.

Age and family history

Increasing age and family history of Graves` disease increase risk of developing Thyroid eye disease.

Gender

Females are five times more likely to develop thyroid eye disease compared to men. Men are likely to have more severe thyroid eye disease.

Radioiodine therapy

Radioactive iodine therapy for treatment of Graves` disease increase the risk of developing or worsening of existing thyroid eye disease by 20%. Underactive thyroid or significant fluctuations in thyroid functions after radioiodine therapy increases the risk of developing or worsening of thyroid eye disease.

High cholesterol levels

Recent studies have shown higher risk of developing thyroid eye disease in people with high cholesterol. Drugs used to treat high cholesterol, statins can be used to reduce this potential risk.

Autoimmune diseases

Having other autoimmune diseases like type 1 diabetes, rheumatoid arthritis, lupus etc increase the risk of developing thyroid eye disease.

Diabetes 

Both type 1 and type 2 diabetes are associated with increased risk of thyroid eye disease. Patients with diabetes tend to have worse outcomes of thyroid eye disease. Those with moderate to severe thyroid eye disease, may need treatment with high dose steroids and other immunosuppressive medications which may result in worsening of glycaemic control and further increase in risk of complications.

3. What happens to the eyes due to thyroid eye disease? 

Thyroid eye disease results in inflammation and swelling of muscles of eyeball and fat tissue at the back of eye. This causes swelling, aches and discomfort behind the eyes and it may feel worse on eye movements. Swelling and inflammation of tissue causes redness and swelling of various parts of eyes, including eye lids, fat pads around eyes, redness of white part of the eyes and fluid retention and transparent swelling on the eye surface. Eyes may bulge forward (exophthalmos) and swollen muscles can result in double vision as both eyes may not be able to work together in normal harmony. 

Occasionally severe thyroid eye disease can cause disturbance in vision and colour vision due to pressure on the nerve at the back of the eye. If eyes do not close completely and or remain very dry, front surface of the eyes (cornea or black of the eye) may develop small wounds(ulcers) affecting vision.

4. What are the symptoms of thyroid eye disease?

Swollen or bulging eyes

Redness, pain and itching of eyes

Dryness or watering of eyes

Pain at the back of eyes and on eye movements

Staring look and inability to close eyes completely

Double vision and difficulty in moving eyes

Development of squint

Intolerance to bright lights

Though usually both eyes are affected, it is possible to have thyroid eye disease in only one eye or worse in one eye than the other.

5. How is thyroid eye disease diagnosed?

Diagnosis of thyroid eye disease is mainly based on your history and clinical examination supported by some blood tests and eye assessments. If you are known to have overactive thyroid and you are experiencing one or more of the above symptoms, you should consult your optometrist, general practitioner (GP) or your thyroid specialist. They will examine you and refer you the eye specialist (Ophthalmologist) if necessary. You may need detail assessment of your eyes by the specialist to confirm the diagnosis and assess if your thyroid eye disease is active or not; and assess the severity of thyroid eye disease. They will advise you about appropriate investigations and necessary treatment.

Sometimes common conditions like hay fever, conjunctivitis, allergies may resemble symptoms of thyroid eye disease. You need expert help to rule out these conditions.

6. What are the phases of thyroid eye disease?

Thyroid eye disease has 2 phases- active phase and inactive phase.

Active phase

Active phase means active and ongoing inflammation and swelling at the back of your eyes, which causes ongoing swelling, redness, discomfort and sometimes changes in your vision. This phase may last from 6 months up to 2 years.

Expert clinicians use different scoring systems to assess if your eye disease is in active phase. A 7-point scoring system called as Clinical Activity Score (CAS) is commonly used. If you score 3 or more, your eye disease is considered active. During this period, you are usually offered regular follow up, supportive treatment and immunosuppressive treatment to dampen the inflammation in your eyes.

Inactive phase

Expert clinicians can usually tell when your eyes are entering in inactive phase. Reducing redness, swelling, and bulging and no further progression can be considered as few of the signs that your eye disease is becoming inactive. When your eye disease is inactive, the Ophthalmology experts will plan for surgical treatments for your eyes.

Some of the eye signs will remain life long as thyroid eye disease is a chronic disease and may not be completely cured.

7. How does the doctor know if my eye disease is mild or severe?

Thyroid eye disease is usually considered as mild, moderate, and severe based on various clinical signs and symptoms and different assessments of your eyes. Majority (50 to 60%) of the patients with thyroid eye disease have mild thyroid eye disease and do not require any immunosuppressive medications. When the expert clinicians, Ophthalmologists and Endocrinologists consider your eye disease is moderate to severe, they will advice you the treatment with immunosuppressive medications to control ongoing active inflammation. About 20 to 30% patients with thyroid eye disease will require treatment with these medications. Rarely eye disease can be severe in about 5 to 10 % patients, requiring urgent expert care, intravenous medications and occasionally surgery to protect vision.

8. How is thyroid eye disease treated?

Thyroid eye disease can be treated with various treatment options depending on active or inactive phase of the disease.

• Supportive treatment
• Anti-inflammatory and immunosuppressive medications
• Monoclonal antibodies
• Radiotherapy
• Surgery 

Supportive treatment

Majority of the patients with mild thyroid eye disease respond well to the supportive measures.

Eye lubricants

Dryness, itching, irritation, and watering of eyes can be treated with various eye lubricants including drops, gels, and ointments. Artificial tear drops improve the quality of tear film and make eyes feel comfortable. These drops can be used several times during the day. Lubricant gels are thicker than eye drops and last longer. Gels can be used less frequently than eye drops. Eye ointments are thicker and oily and mainly used at night as they last even longer. Your clinician can help you to find a suitable option for you.

Selenium 

Selenium is a mineral, found in many food items including various grains, nuts (eg. Brazil nuts), fish, poultry, and red meat. Some studies have shown beneficial anti-inflammatory effect of selenium in mild thyroid eye disease for initial 6 months from diagnosis. The recommended dose of selenium for thyroid eye disease is 200mcg once a day. Your clinician can prescribe you this and it is also available to buy over the counter without medical prescription.

• Other supportive measures include using warm compresses, glasses for any issues with vision including prism for double vision as necessary. Your clinician will guide you about this.

• Anti-inflammatory and immunosuppressive medications
• Corticosteroids(steroids)
• Mycophenolate mofetil (MMF)
• Azathioprine
• Tocilizumab
• Cyclosporine 
• Rituximab

• Monoclonal antibodies

• Radiotherapy

• Surgery 

Anti-inflammatory and immunosuppressive medications

Corticosteroids(steroids)

Used in high doses and intravenously, steroids help to reduce inflammation and prevent further damage by stopping progression of thyroid eye disease. Your clinicians will arrange for weekly doses of intravenous steroids over few weeks with close monitoring for side effects. Common side effects of steroids include sleeplessness, high blood sugars, high blood pressure. High dose steroids may affect your liver and pancreas, you will require regular monitoring of those blood tests.

Mycophenolate mofetil

As per the latest European Group on Graves Orbitopathy (EUGOGO) guidelines, use of oral mycophenolate mofetil is recommended for about 6 months, in combination with intravenous steroids. Mycophenolate mofetil is another immunosuppressive medication which also helps to control the inflammation at the back of your eyes. It is usually well tolerated, and most common side effects include nausea, vomiting, stomach upset and diarrhoea, which eventually settle down after taking for a few weeks. Mycophenolate mofetil can also affect your liver, pancreas, and bone marrow. Your clinicians will arrange for regular monitoring and blood tests every 6 weeks.

Other immunosuppressive medications are used as second line treatment, in case of steroid intolerance or steroid resistance.

Monoclonal antibodies and related newer medications

Monoclonal antibodies are the drugs which work on various targets on the tissues behind the eyes, which helps to reduce the inflammation and prevent further damage.

One of such antibodies called Teprotumumab has been approved by FDA and is also being used in few other parts of world including Europe.

Teprotumumab works against insulin like growth factor 1 receptors (IGF1). In Graves` disease excess thyroid hormone activates IGF1 receptors which cause growth, swelling and inflammation of eye muscles, fat, and connective tissue around eyes. This causes various symptoms of thyroid eye disease. Teprotumumab binds to IGF1 receptors and prevents any further damage. 

There are a few other newer drugs in development and clinical trails are being conducted for them. If you are interested in participating any of these drug trials, enquire with the clinicians looking after you, who may be able to guide you.

Radiotherapy

Orbital radiotherapy targets radiation to the tissues, at the back of your eyes. It is usually used as a second line treatment in case of steroid resistance or intolerance. Radiation may show better results in patients with diplopia predominant eye disease (where double vision is the main complaint rather than swelling and redness of eyes). However, radiotherapy doesn’t show rapid improvement in symptoms compared to steroids and it may not be available at all the centres. 

Surgery 

Surgery is usually reserved for severe eye disease with significant swelling, scarring and damage caused by thyroid eye disease. Surgery is usually conducted during inactive phase of thyroid eye disease. Very rarely surgery may be required in acute phase, when nerve at the back of eye is compromised affecting vision or if there is any damage to cornea (transparent front part of eye, usually black or brown in colour).

Reconstructive surgeries are of three types, and they are usually done in a particular sequential order.

1. Orbital decompression surgery- this is done to reduce the bulging of the eyeballs and to restore them in normal position.

2. Squint surgery for double vision- this is done after decompression surgery, it corrects the eye muscles and restore them pointing in the same direction, preventing, or reducing the double vision.

3. Eye lid surgery- this is usually done after decompression and squint surgery with the aim of restoring eye lids to normal shape and position.

It is important to note that all patients who require eye surgeries may not require all 3 surgeries. Your Ophthalmologist will discuss the details with you prior to any surgery. 

Occasionally Botox injections can be used as a temporary measure to reduce double vision or correct positions of eye lids. Effect of Botox injection wears away with time.

9. Can I prevent thyroid eye disease?

Thyroid eye disease can not be prevented entirely, however a few measures can reduce to the severity of thyroid eye disease.

Non-modifiable risk factors

These are the risk factors which can not be modified by an individual to reduce the risk or entirely prevent thyroid eye disease. These are family history of thyroid or thyroid eye disease, age, Graves` disease or Hashimoto`s thyroiditis and presence of other autoimmune disorders.

Modifiable risk factors

These risk factors can be modified entirely or to certain extent to prevent further damage or progression of thyroid eye disease. Stable and optimal control of thyroid functions when known to have overactive or under active thyroid, reducing, and stopping smoking, optimal control of other comorbid diseases including diabetes, dyslipidaemia or autoimmune disorders, compliance with medications.

10. Whom should I contact if I suspect I have thyroid eye disease?

If you suspect you or your loved ones have thyroid eye disease, you should seek help from expert clinicians for further investigations and treatment. Your first point of contact can be your local optician, GP, Endocrinologist or Ophthalmologist. This will depend on your local health system. Majority of the times you will need help and regular assessments from both Endocrinologists and Ophthalmologists. 

11. What symptoms should be worrying to seek urgent help?

Occasionally you may need urgent assessment of your eyes from the expert team. If you notice sudden changes in your vision including rapid reduction in near vision or changes in colour vision, in one or both eyes, blurring of vision which is not improving, persistent worsening of symptoms like pain or redness and double vision which requires adjusting position of your head to avoid seeing double. You may need to contact out of hours GP or report the emergency services where eye specialists will be available.

You may need hospitalisation for high dose intravenous steroids and occasionally emergency eye surgery if your vision is compromised.

12. Thyroid eye disease is affecting my mental health, confidence, personal life, and work. What should I do?

It is well recognised that thyroid eye disease can have a lot of negative effects on your mental health and wellbeing. Overactive thyroid can cause mood fluctuations, anger, feeling of frustration. Change in your facial appearance may affect your self confidence and your personal and social interactions. Eye symptoms may affect your ability to work normally. If you are feeling any of these affects you need help from experts including psychologists, mental health practitioners and psychiatrists. Your GP can help you to arrange for these referrals and your eye specialist centre may be able to help as well. GP, your other clinicians, and occupational health specialists can help to negotiate any changes in your work environment with your employer. Education and counselling of your partner and family members may be helpful for them to understand your situation better. It is always important to look for local self-help groups and patient groups who are in similar situation as yours. You may find this peer support useful.

13. Can I recover completely from thyroid eye disease? What is my long-term prognosis with my eyes?

Thyroid eye disease is a chronic and long-term condition. 

Majority of the patients with mild to moderate thyroid disease recover very well with help of medications and occasionally surgery.

Some patients with moderate to severe eye disease may have some long-term manifestations of residual damage to their eyes. Restorative surgeries are aimed to restore vision and appearance of your eyes close to normal.

Patients with risk factors including those with rapid fluctuations in their thyroid functions and those who continue to smoke may experience recurrence of thyroid eye disease, even after a few years.

Resources-

Various other and online resources are also available depending on the country you live in.

UK- 

• The British Thyroid Foundation (BTF) (btf-thyroid.org)

• Welcome to the Thyroid Eye Disease Charitable Trust - TEDct

USA -

• Find a Therapist, Psychologist, Counsellor - Psychology Today

• https://www.thyroid.org/patient-thyroid-information

• https://www.thyroid.org/thyroid-eye-disease

• https://www.endocrine.org/patient-engagement/endocrine-

        library/thyroid-eye-disease 

Canada and international- 

• Home - Thyroid Federation International (thyroid-fed.org)

India -

• https://www.thyroidindia.com 

(Note- Authors have no commercial or personal interest in recommending these resources)