Thyroid eye disease (TED) or thyroid orbitopathy (TO) is an eye condition that usually affects patients who either have, or have had, dysfunction of the thyroid gland, although approximately ten per cent of patients never develop thyroid dysfunction.
The reasons for the association of under- or over-production of thyroid gland hormones (hyper- or hypothyroidism) with the eye disease are not completely understood.
TED is an autoimmune disorder, caused by the reaction of antibodies and some white blood cells (lymphocytes) to cells in the eye muscles, as well tissue and fat in the eye socket (the orbit). This condition differs from the mild eye signs of popping eyes and spasm of the eyelids that happen in most hyperthyroid patients as a by-product of excessive thyroid hormone production.
TED affects women more than men and usually occurs when the sufferer is between 30 and 50. It typically features inflammation of the eye tissues, particularly the eyelids, the eye muscles and the soft-tissue in the eye socket.
The eyes feel painful, red and watery, especially in sunshine or wind. The covering of the eye (the conjunctiva) is inflamed, red and swollen. The eyelids and tissues around the eyes are swollen with fluid. The eyes appear staring, often because the eyeballs bulge out of their sockets — a condition known as proptosis or exophthalmos.
Because of eye muscle swelling, the eyes are unable to move normally and there may be blurred or double vision. Eyelid swelling is usually worse in the mornings. Pain behind the eye or during eye movements is another common symptom. Patients often report a change in the appearance of their eyes — old photographs can help to confirm this change.
In severe cases, vision may be threatened because of compression of the optic nerve in the apex of the eye socket. This, fortunately, is rare and happens only in approximately five per cent of cases. It may be reversible if the pressure on the optic nerve is relieved. Severe bulging of the eyes can also cause significant drying of the front surface of the eye (the cornea) and blurred vision.
It is essential to see an ophthalmologist if you feel your vision has recently become blurred or dim and, in particular, if colours appear to be washed-out.
Smoking and diabetes are considered risk factors. TED may take place at the same time as other autoimmune conditions, including Myasthenia Gravis, a rare muscle-weakening disease.
As with other autoimmune diseases, TED often comes and goes on its own. There is usually only one acute inflammatory episode, known as the active phase, but this can last up to two years and the effects may persist for years or be permanent. Although there may be some reduction of the prominence of the eye, eye movements often do not return to normal. Eyelid position is also likely to be affected, sometimes creating persistent problems in closing your eye.
The Thyroid Eye Disease (TED) Charitable Trust provides information, care and a support network, with a telephone helpline, newsletters and information leaflets. You can find out more at www.tedct.co.uk
The first step is to correct any thyroid dysfunction. This alone will often improve the eye condition.
Stopping smoking is the single most effective way to improve symptoms.
Discomfort and dryness can be improved by humidifying the air. Wrap-around, polarizing sunglasses can help to reduce glare.
Lubricant eye ointment at bedtime and artificial tears during the day will help to maintain moisture in the eye. Eyelid swelling can be reduced with cool compresses and by keeping your head raised while you sleep.
Covering one eye immediately relieves double vision — it doesn't matter which eye is covered. Double vision can also be improved with the use of fresnel prisms (pronounced frennel) placed on spectacle lenses to help re-align both eyes.
Recent evidence (New England Journal of Medicine 2011) suggests that patients who take a supplement of selenium 200micrograms a day for 6 months during the active period of inflammation acheive a greater improvement in the condition of their eyes. This is most likely due to underlying mild selenium deficiency. Brazil nuts are an alternative source of selenium, however patients should avoid consuming more than 4 nuts per day in order to avoid risking selenium overdose.
Steroid therapy or immunosupression has a 65 per cent response rate and is effective in reducing soft tissue inflammation. Steroids may be prescribed as tablets over a six- to 12-week period. Steroid-related side effects are relatively common. These include weight gain, raised blood pressure, blood sugar elevation that can lead to or worsen diabetes and an increased risk of osteoporosis and joint damage.
In order to minimise these potential complications, other methods of administering steroids are available. These include pulsed intravenous (IV) steroid injections (either repeated daily for three days, or weekly for a short period) or local injections of steroid around the eye, known as periocular steroids. Periocular steroids are safe but can briefly cause the pressure in the eye to increase, requiring monitoring and possibly treatment.
Immunosuppressive drugs such as Cyclosporin or Azothiaprine may be used in combination with steroids in severe cases that are not responding adequately to steroid therapy.
Low-dose orbital radiotherapy may be used to suppress inflammation and is usually given daily on an outpatient basis for two weeks, in combination with steroid therapy. Side effects of radiotherapy can include hair loss at the temples and a brief increase in soft tissue inflammation during treatment — this occurred in 14 per cent of cases in one study.
Radiotherapy can affect the blood supply, in the long term, of any tissue treated and is therefore generally avoided in patients with diabetes, particularly if diabetic changes to the retina are already present. It is also avoided in young patients because of the theoretical increased risk of tumours developing in the future , although, to date, no such cases have been reported.
The thyroid actively accumulates iodine, which it uses to produce the thyroid hormones needed for normal body function. RAI is like iodine found in foods such as fish, seaweed and iodized salt but it releases an electron that disrupts the function of some of the thyroid cells. The more radioactive iodine is given, the more cells cease to function, so excessive amounts of thyroid hormones are no longer produced and symptoms of hyperthyroidism begin to disappear. The RAI is either dissolved in water or given as a capsule.
After treatment, symptoms improve slowly, beginning about two weeks later. To prevent recurrence, enough radioiodine is usually given to cause the thyroid to become underactive around six to 12 weeks after treatment. You then have to take a daily dose of thyroid hormone, T4, for the rest of your life. Very few people need a second course of RAI. A few people find their thyroid returns to normal but it will eventually become underactive.
There is a risk of TED becoming worse after radioactive iodine treatment, particularly if you have eye disease in the active phase. Mr Malhotra usually recommends simultaneous steroid therapy or, possibly, an alternative method of therapy in these circumstances.
Surgery is generally reserved for quiescent (inactive) disease, once inflammation has settled. The exception is urgent orbital decompression for loss of vision caused by compression of the optic nerve (optic neuropathy).
Thankfully, modern medical therapy has made emergency decompression rare. If orbital decompression is needed, it is performed first to bring the eye back into the socket.
Mr Malhotra usually performs surgery to one eye at a time. Orbital decompression involves expanding the bony walls of the eye socket (orbital cavity) and is often combined with removal of some orbital fat. This decreases protrusion of the eye and reduces pain and discomfort.
The technique involves minimally invasive surgery, usually through a small skin-crease incision. The most common complication is of new or worsening pre-existing double vision, known as diplopia. This has been reported in up to 15 per cent of cases. The risk of blindness is less than one in 600.
Double vision that persists may be either controlled with prisms or require eye muscle surgery (strabismus surgery) in order to align both eyes better. This is usually performed as day case surgery.
Eyelid surgery is then available to improve the staring look, if this persists. Upper and lower eyelid lifts (blepharoplasty) remove any excess skin and fat slippage, or prolapse, from the eyelids. Laser skin re-surfacing can also help restore a patient's appearance.
For full information about what to do before and after treatment, see Patient information – care plan for eyelid or orbital surgery, which you can download as a pdf. You will find answers to some frequently asked questions here.
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Having developed thyroid eye disease I was horrified by the change in my appearance. My eyes became large and starey; I hardly blinked and was constantly paranoid about people looking at me especially when out in public which definitely knocked my self-confidence as well! However, fortunately for me I was recommended to Mr Malhotra and the rest is history.
From the first consultation I felt relaxed and confident that my problems may soon be over. I was impressed by what Mr Malhotra told me and his manner and decided to go ahead with the recommended surgery. I had two orbital decompression surgeries, one to each eye, follwed by corrective squint and eyelid surgery. Both he and his team were very professional at all times. My treatment is now complete and I am amazed by how smoothly it all went and have not only got back my original eyes but also my self confidence. When I look in the mirror now, all I do is smile. THANK YOU SO MUCH Mr Malhotra and team!!
Dear Mr Malhotra
Firstly, may god bless you and your surgical team. My brave mother who, 4 years ago developed hyperactive thyroids first came to your attention approximately 2 and half years ago, with graves disease. My family and I cannot thank you enough for the wonderful care and treatment you and your team have provided our mother. We have learnt so much and have a new found appreciation for eyes.
We have nothing but total respect for your profession, your blessed skills, your entire team and the fact that you are a genuinely nice person. I want to say so much but ironically my eyes are filling with tears of happiness that you have brought our mother back, she lost all confidence and self esteem over the last 4 years. She's also had 6 grandchildren over the last 4 years, thankfully from 3 children! Grandchildren Aged 4, 3, 2, 1, 9 months and 2 months. Our mother at one point was so frightened she would never see them properly, or that they would be scared of her appearance. But by the grace of god, they are all so close and share so much joy together. Mr Malhotra, you and your team our in our prayers that you will always be granted with good health and prosperity. We are eternally grateful to you.
(From the daughter of a patient who underwent treatment for active disease and then surgery to orbits, eye muscles and eyelids)
Dear Mr Malhotra
On Tuesday just gone I was seen by a colleague of yours and discharged with a clean bill of health...I wanted to say a very big thank you to you and all your colleagues at the hospital.
The past 4 years haven't always been easy, IV steriods, Radiotherapy, Thyroidectomy and finally Orbital Decompression. You might say I've visited some dark places but throughout that time I have had nothing but praise for you and your team at the hospital.
If I can ever be of any help with any future Graves sufferers please do not hesitate to ask.
Once again, thank you so very much.