Information Living with thyroid disorders TED FAQS Q1. I have been diagnosed with mild TED. Will this eventually get worse? A. Most people with mild TED - generally limited to upper lid retraction with ocular redness and watering - will tend to settle as the thyroid function is controlled and only a minority will get worse disease. Smoking markedly increases the risk of progression to serious disease, and stopping smoking reduces the risk. In addition, selenium supplementation for 6 months probably reduces the small risk of progressive disease. Q2. Why do my eyes feel dry and sore all the time yet constantly water? What can I do about it? A. To wet the front of the eyes not only needs water in the tear lake, but also a complete and regular sweep of the eyelid margin across the ocular surface: it is like a windscreen-wiper that is missing part of the screen during its sweep. The retracted upper eyelid leaves a larger surface to evaporate tears when the eye is open, does not complete closure during each blink (leaving the lower part of the cornea without being wetted properly), and the eye may be open during sleep (with exposure and drying of the cornea overnight). In response to all these factors, the eye produces to spill out of the eye, rather than a really wet ocular surface. Unlike reflex natural tearing, viscous daytime tear-drops (preferably preservative-free) last longer in the tear lake, and an ointment should be used at night to protect during the day is worthwhile, especially during concentrated close work when blink-rate is at its lowest. Q3. I have painful eye movements and double vision when I look down which is particularly bad looking down to the side and affects my reading. I wear varifocals and am having difficulty - what should I do? A. Painful eye movements and double vision (as opposed to blurred vision) are generally a sign of inflammation within the muscles that move the eyes; if a problem, this should be managed by an ophthalmologist. Double vision makes spectacle use difficult and, in some cases, it may be necessary to blur out one lens. varifocals are particularly difficult to use with double vision, as they need very accurate positioning of the eyes in relation to the lenses. in general, patients with TED do better with separate glasses for distance and near vision. Q4. When is the right time to operate on the eyes to correct double vision following treatment of Graves? A. Double vision during the early stages of TED may be reversible as inflammation settles down, whereas double vision later in the disease is usually due to scarring within the muscle(s). If the double vision needs surgery, this will be undertaken when the abnormal alignment of the eyes has been unchanged over a few months. Q5. If my Graves' disease is stable what are my chances of developing TED? A. The changes of TED after treatment of thyrotoxicosis are small, provided that the thyroid hormone levels are well-controlled long-term and smoking is avoided. In the most instances people present both with GD and TED, or they develop TED within a short time of their GD being diagnosed. In people with GD who do not have TED initially, about 15% will get the disease, usually within 2-6 months. Q6. I've got hypothyroidism - can I get TED? A. Yes. Although TED is much more common with thyrotoxicosis - more than 90% of people with TED have hyperthyroid Graves' disease - it can occur with hypothyroidism and even with normal serum thyroxine. If you are a smoker you are more likely to get TED and you can reduce likelihood by stopping smoking. Q7. Is it ok to have cataracts operated on? I've previously had orbital decompression for TED. A. The risks of cataract surgery are not significantly greater in a patient who has TED, whether after decompression or not. he cataract surgeon should address any specific concerns. Q8. I have TED, can I wear contact lenses? A. Contact lens wear is not generally contraindicated in TED, although the lens wear can be difficult. The difficulties can arise from the excessive watering (which may be reduced somewhat by lens wear), due to the upper eyelid retraction with incomplete eyelid closure, and from poor blinking. Q9. If I've got TED/had orbital decompression can I have laser eye surgery so that I don't need to wear glasses? A. Laser surgery is not specifically contraindicated after treated TED. However, as ocular surface problems – such as incomplete corneal wetting and grittiness – can persist after treatment of TED, laser surgery can worsen these symptoms long-term. Q10 Will I be able to have reconstructive surgery to correct the disfigurement caused by TED? A.It is generally possible to improve appearance and function of the eyes after TED has become inactive. Function is, however, never “perfect” after treatment of TED and the appearance never quite the same as before having TED Q11 I have heard of a trial of a new treatment for TED – Teprotumumab – at Moorfields Eye Hospital, UK. Will this treatment be available on the NHS? When? A. Teprotumumab is currently undergoing a further trial in the USA and is not yet licensed for usage in TED; if it is licensed, it will probably be used in only a minority of patients. Many similar treatments do not receive funding within the NHS, and so the availability of this drug (and whether it will be used at all) remains uncertain. Q12 I’m affected by double vision because of my TED. I’ve been told I can drive if I wear a patch over one eye – is this correct? Do I have to inform the DVLA? A. Provided the “working” eye has normal visual functions (acuity and peripheral visual field), then it is permissible to drive a car; the DVLA should, however, be advised about the current status. There is a reduced field (far-side vision) on the patched side, however, and drivers should be especially aware of this impairment. Further information is available from the DVLA. Monocular vision: https://www.gov.uk/monocular-vision-and-driving Diplopia (double vision): https://www.gov.uk/diplopia-and-driving Q13 I’ve had surgery for Graves’ disease. Can I still develop TED? A. Yes, but there’s only a small risk provided that the thyroid hormone levels are well-controlled long-term after the operation and smoking is avoided. In most people in the UK surgery takes place 1-2 years following the initial diagnosis, whilst TED tends to develop within 6 months of people presenting with Graves’ Disease. Q14 Will a thyroid antibody test indicate whether I have active TED? A. Unfortunately at present there are no specific thyroid antibody tests that will indicate TED activity. In people with Graves’ Disease it is essential to confirm the diagnosis of Graves’ by measuring antibodies to the thyrotropin receptor (TRAB). Those with the highest TRAB levels are more likely to have active TED and TRAB levels may also correlate with TED severity. However, TRAB levels can persist even when the disease is completely quiet; and some patients with TED never have abnormal thyroid antibodies.