“Season of mists and mellow fruitfulness” – Ode to Autumn, John Keats

Newsletter - Autumn 2014 ISSN 1360-3523 Associated with the British Thyroid Foundation

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TEDct Autumn 2014 Newsletter

CONTENTS Page

TEDct’s free DVD – positive feedback ..................... 2 Coping strategies for eye surgery …………………... 3 Lynda’s Story: 1985 to the present day (Part I)........ 4 Rebranding, Georgiephone ...................................... 8 Transport for London ‘Turn up and Go’ Assistance.. 8 Endocrine Nurses’ Update …………………………... 9 Two bits of Research ……………………………….... 9 Devon Coast2Coast Cycle Ride Challenge ………. 10 Donations, Marty Feldmann, Q & A …………......... 14 Helpline …………………………………………….… 20 TEDct Christmas Cards (+ see flyer) ……………… 21 Appeal for new Committee members ……………... 21 Useful Contacts ..................................................... 22

Claim your Free TEDct DVD. Here’s what Lynda had to say about it: “Thank you so much for sending me the

DVD, it explained things so well. I only wish there had been information like this when I started suffering in 1985. I didn't have any idea what was happening to me and the doctors didn't seem to either. It was really scary. I had an emergency eye decompression operation and after, things seemed to go from bad to worse. My children daren't look at me in case my eyes popped out, and I had very bad double vision. All the doctors said over and over was 'come back next month'. Eventually I got referred to Moorfields and after several operations things were much improved. Unfortunately it has now slipped and I'm back to double vision again. But if only I could have had the DVD back in 1985,I wouldn't have been so scared.” Thanks so much, Lynda.

You can read more about Lynda’s long-suffered TED trials and tribulations in her story, starting on page 4 of this newsletter.

Email ted@tedct.co.uk with your name & address and put "FREE TED DVD" in the subject line. Or write to: P O Box

1928, Bristol, BS37 0AX or phone: 0844 800 8133.

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COPING STRATEGIES FOR EYE SURGERY One of

TEDct’s Committee members had three operations on her TED in 2008, each time involving both eyes being double-padded, so she was unable to see until the morning after surgery. For those of you facing an overnight stay in hospital and a similar scenario, here are some of her hints on how to survive:

Buy a talking watch beforehand and practise using it with your eyes closed. Honestly, there’s nothing more frustrating than being in a room, hearing the clock ticking away, but not being able to see the time! J bought hers from the RNIB website for under £5 and felt it was definitely money well-spent.

Take something to listen to that you can operate on your own without being able to see. Again practise with your eyes closed. J took her MP3 player to help while away the long night.

Get yourself organised with the help of any relatives, friends or nursing staff before they leave the room. Know exactly where your tissues, glass of water, and nurses’ call bell are; that way you’ll have a little bit of independence during the night rather than having to call a nurse just to get a sip of water.

Have some anti-bacterial hand-wipes handy for before you eat anything as if you can’t get to a sink, they’re the next best thing.

Styles of being guided – what do you think you might prefer? J suggests:

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- Somebody walking behind you with their hands on

your shoulders, giving verbal directions on the route to

take.

- Somebody holding your hands in front of you, so

they’re walking backwards, also giving verbal

instructions.

- Arm in arm (side by side), also with verbal instructions.

- Variations on the above!

Finally, J would say that if you don’t feel happy with a particular style of being guided, inform the person and tell them how you would prefer to be guided – the nurses don’t mind!

I’m Lynda and I'd like to tell you my story. I was born in Bradford in 1948 and I’ve a wonderful husband, Dave, who’s stuck by me and helped and guided me through everything, 3 brilliant children, Tracey, who at the start of my illness was 14, Paul 12, and Lee 8, five beautiful grandchildren, who unfortunately I haven't been able to care about properly - that upsets me a lot. I was in the top class at Grammar school, then worked in a textile laboratory before becoming a registered child-minder, which I adored. I had lots of friends and a busy social life. My life was perfect and then … It started with an over active thyroid in 1985. I was 37 and didn't realise what life was about to throw at me. I'd never even heard of a thyroid before but that was about to change!! My Mum was lovely - the best ever, but my father, well… he was 'evil', for lots of reasons including not letting us have anything to do with doctors or hospitals. Because of

Lynda’s Story (Part I) - from 1985 to 2014

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him, I was scared of feeling ill even though he was out of my life. He scarred me. I felt it was weak, but I started to feel really bad and it worsened. I didn't know what was happening to me and tried to keep it all to myself but it was so hard - I didn't want to appear useless. I couldn't stop - had to keep going, on and on and on until I was crying. Even then I had to keep going and hide it from everyone. Stopping felt like giving in. My heart was beating so very fast and loud that I couldn't count the beats and I felt everyone must be able to hear. Laying down at night it sounded as if an enormous drum was beating in my head, faster and faster, louder and louder. I couldn't sleep and when I did I had very fast, complicated nightmares. I was so scared but also felt I had to keep it from Dave as I had to be strong. Also, I seemed to hurt all over and couldn't bear anyone touching me. At home sometimes, I’d shuffle across the floor on my bottom as I felt my heart would burst if I stood up!! I didn't know what on earth was happening to me. It was bad all day, but it seemed to be worse in the morning. This sounds silly, but everything seemed black and I felt as if I was down a hole with my head being crammed full of thoughts which couldn't escape as my mind was like a cake tin spinning round with the lid spinning the opposite way. Both had a small hole in them but they were never aligned long enough for anything to get out. This probably sounds stupid, but it would be nice to think that some others have felt like me because it makes you feel very different, alone and ill. The heating bills were nice and low, but it’s scary when you don’t know why you feel so hot! On the plus side, I could eat

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loads and not put on any weight, though as we all know, that doesn't work later on. By this time my eyes were feeling queer; looking at things didn’t seem right and my face looked different. I was very shaky and dithery; nothing made sense anymore. My family needed to sit

and watch TV, but I had to be doing things all the time. It was very hard keeping it all secret. For a long time I was working in overdrive, forcing myself to keep going, pushing harder and harder, so I was constantly tired and in tears. In secret, I tried various remedies like Ginseng, B vitamins, Pro-plus, etc, but nothing made the slightest difference. There's no way I would have dared to have made an appointment to see a doctor, that would have been against everything my father had forced on me. I used to pray that a doctor would accidentally come to the door and I could explain everything to him and get some help. Stupid, I know, but I was scared. Eventually, I couldn't keep it secret any more. One day, Dave and I were in town shopping. I was having great difficulty seeing (so was screwing my face up) and I was so shattered from lack of sleep that I just collapsed on the floor absolutely exhausted. He took me straight home and made an appointment with the doctor: RELIEF because it wasn't me that had contacted the doctor, it was someone else. This was the start of many years of doctors, hospitals, illness and operations and I am so very grateful and thankful to everyone who’s helped me.

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I was very lucky that my GP, Dr Wilson, very quickly diagnosed me as having an overactive thyroid, noticed my goitre and took a blood test. Before then she prescribed Diazepam to try to calm me a little, followed a bit later by Temazepam to help me sleep. This was pre tranquilliser scares, although she had only meant them to be for a short time. Wrong. I was on them for 5 years, so when I tried to cut down, I ended up taking more. I'll never forget the first time I took some Diazepam - starting to smile, then laughing, giggling. I felt brilliant. I then phoned my Mum to tell her how great I felt. It was wonderful, after months and months of despair, I felt back to normal for a while, but it only happened the once and only for a short time. Life has to go on and I don’t give in, so before I got the test results, I dragged myself to see Paul perform in a show; I didn't want to let him down. Some people didn't even recognise me and passed me by and some told me I looked terribly poorly. And by golly I felt it! Anyway I got settled, it went quiet and the show started. I felt very hot, but this was different - everything started closing in and I felt I had to get out quickly as I couldn't breathe. It was a panic attack. I was shaking and felt pathetic, I was showing up my 12 year old son - how dare I? One of the teachers very kindly gave me a lift home and once there, I just sat in the kitchen and cried and cried. After all that, I never got to see Paul on stage and I’d let him down! TO BE CONTINUED...

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AND NOW FOR SOMETHING COMPLETELY DIFFERENT - REBRANDING In the last newsletter, we

mentioned that changes are afoot, and that we’ve been busy little bees on the rebranding front. As a result two very useful leaflets have had a revamp: ‘An Introduction to Thyroid Eye Disease’ and our Patient Information Leaflet. Please contact us for more information or if you’d like a copy.

THE GEORGIEPHONE This intriguingly named Android

smartphone is for people with all levels of sight loss. It won the Google European Diversity awards in 2012 and has a comprehensive family of apps designed to help people with all levels of slight loss to talk, text and travel independently and so not drift into isolation and lonelinesss. It could help sufferers keep in touch with family and friends, help them travel into town, surf the web, jog memory (using Reminders, Schedules or Voice Notes) and read and identify what they can’t see. With nearly 2 million people in the UK with some kind of visual impairment, the phone and apps are simple to use and offer the chance to those with little confidence in using modern technology to join in the fun! Many of the apps are speaking versions of those that the fully sighted would use. For more information, visit www.georgiephone.com or call 0800 999 3358.

TRANSPORT FOR LONDON – ‘TURN UP AND GO’ ASSISTANCE SERVICE Did you know that Transport for

London has a ‘Turn up and Go’ assistance service for sight and mobility impaired customers at all London overground and tube stations? Staff will provide assistance without the need to book in advance. This gives greater choice and flexibility for making spontaneous journeys. You can sign up to TFL’s accessibility email updates by visiting www.tfl.gov.uk/emailupdates. For more information visit tfl.gov.uk/accessibility.

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ENDOCRINE NURSES UPDATE (ENU) In September,

TEDct attended the ENU at the Aston Hotel, Birmingham. There was plenty of interest from the nurses, some of whom we see every year, some new, younger nurses who showed a great deal of interest. We were able to distribute some of our new Patient Information Leaflets and some DVDs - they always draw a lot of interest. Without the Society of Endocrinology we would not be able to attend this so a big THANK YOU to them.

TWO BITS OF RESEARCH 1. Link between Thyroid Disease and Ethnicity? Matt Edmunds, TEDct Committee Member and Clinical Research Fellow in Ophthalmology at the University of Birmingham has collaboratively published a paper on a subject which – as he puts it – is very ‘up in the air’, but is of great interest and that’s whether or not there are links between ethnicity, social grade, and social deprivation associated with the severity of thyroid-associated ophthalmopathy, or TAO for short. It’s interesting because in Australia, Dr Don McLeod has led some similar research, analysing a sample of US military personnel aged 20 to 54 from 1997 to 2011. On the ethnicity front alone, Dr McLeod’s study seems to conclude that African Americans and Asians are much more likely to develop Graves’ than whites and conversely whites have an increased risk of Hashimoto’s, whereas in the cohort used for Matt and colleagues’ study, it is lower social grade and higher social deprivation, but not ethnicity, that had independent, statistically significant association with more severe TAO. Confused? The jury’s out on this one, but work goes on to gain greater clarity and we will report back on any progress that’s made.

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2. Possible Link between Maternal Thyroid Dysfunction and Children’s Autism and ADHD? Researchers in Denmark have found a potential correlation between maternal thyroid disease that’s first diagnosed and treated in mothers post child-birth and their children’s risk of autism or ADHD. In a total sample of 800,000, they found that over 30,000 children were born to mothers with thyroid dysfunction and where the mother was hypothyroid there was a slightly increased risk of the child being diagnosed with autism spectrum disorder, whereas a hyperthyroid mother had a slightly increased risk of bearing offspring later diagnosed with ADHD.

DEVON COAST TO COAST CYCLE CHALLENGE, (ILFRACOMBE TO PLYMOUTH), MAY 2014

Lily-Rose and Ellie’s amazing 108 mile journey…

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Lily-Rose Parsons (10) and Ellie Green (11) decided to take on this huge challenge to raise money for their chosen charities: TEDct and Make a Wish. The trip was planned for the three days over May’s bank holiday weekend and just to make sure the girls were OK, the dads, Nick and Martin, had to join them (as a cyclist it was another excuse to ride a bike!) Before recalling some of the highlights (or maybe lowlights) it is important to note that if you have ever driven around Devon, it is not flat, there are many many steep hills, so this was not a simple ride out for the girls, this was a genuinely hard challenge. Day 1 - Ilfracombe to East Yarde After a hearty breakfast, we started from Ilfracombe, touching our toes into the water. We followed the Sustrans C2C route 27 and promptly got lost within two miles, detouring through a church yard. After climbing out of Ilfracombe on the old railway line we made good progress through Mortehoe and the cliff path at Woolacombe, experiencing some stunning views. Then: ‘snap’ - Martin’s chain broke! After a quick repair we were on our way again. Cycling through beautiful Devon countryside is a wonderful way to spend the day, the weather was being kind and we were approaching our planned lunch stop at Braunton. This is where the cycling gods decided to make our day not quite so enjoyable! The heavens opened and it rained, we darted for cover and had lunch. The mums had been in charge of packing the food for the journey and had packed enough food to feed a small town, which went a long way towards explaining why our panniers were so heavy! The rain continued and reluctantly we had to put on our waterproofs and head off again. The next 25 miles to our overnight stop were very hard, it rained all the way and was quite miserable. The girls were getting a little tired and the enthusiasm of the start had definitely faded. The last two miles to our stop were uphill and this was very hard. The girls showed tremendous

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spirit and rode all the way, determined not to get off. This set the theme for the weekend, where the girls created a little saying “ how many stops ... Zero stops” referring to the number of times they had to get off on the hills. The first day was completed; 40 miles done. The night was spent at a bunkhouse at East Yarde, a wonderful place with lovely, freshly cooked food, 6% local cider which needed to be tried, all enjoyed with a Spanish flamenco guitarist who sang about the ghost stories of Devon. We were joined at East Yarde by some friends, the Berggren family who were also cycling to Plymouth. Day 2 - East Yarde to Okehampton

After a good night’s sleep and some slightly sore heads (Dad’s), we had breakfast at East Yarde and set off on what was the shortest of the three days, only 20 miles to Okehampton for a stop at the YHA. This actually turned out to be a very hard 20 miles with a lot of hills and we did have a few moments with questions such as “how many more hills” or “how much further”, but the girls never got off and by the end of the day, Lily said “I wish this journey would never end”. They were enjoying it! The stop at Okehampton gave the girls a lift as we were joined for the night by their mums, Mandy and Julie, and Lily’s brother Jack. We shared ‘dorms’ with strangers which was an interesting experience. We spent the night relaxing and recalling the stories of the last few days. We played giant Jenga with the Berggrens before a difficult night’s sleep with a room full of the snoring and sleep-talking strangers! Day 3 - Okehampton to Plymouth

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Spirits were high after breakfast as we set off across Dartmoor for the final leg. We were joined for the first 10 miles by Mandy, Julie and Jack before they said their farewells to collect the cars and meet us in Plymouth. The weather was perfect and we cycled around the edge of Dartmoor towards Tavistock. We stopped at Lydford gorge for a break. The ride had been quite easy up to this point, but the next 10 miles were the hardest of the journey, all hills, out of Lydford towards Brentor enough to make an experienced cyclist moan, but both girls just got on with it and never got off (dads were very proud). As we rode, we sang Disney songs with the Berggren family, we laughed and talked - the sense of excitement was rising as we were nearing the end of the journey. We stopped in Tavistock for an ice-cream. The final 10 miles of the ride uses the Plym trail which is a disused railway line and is downhill all the way to the end. The trail has a series of bridges along it and this provided a chance for a race. We set the rules that you were only allowed to pedal on the bridges, but not on the sections in between. It was hilarious as a group of cyclists pedalled as hard as they could on the bridges and then free-wheeled on the other sections. It is amazing how competitive grown men can become and how low they’ll stoop to win at all costs! We finally arrived in Plymouth to be met by lots of family members and as we crossed the finishing line at Plymouth Hoe, we touched the water. The girls had completed it, 108 miles in total, a tremendous achievement. They raised over £500 to be shared between their two charities. Well done girls!!!!

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DONATIONS Since the early summer newsletter, donors

(of under £50 each) have generously given a total of £667, but we also received £50 from Lynne Tomlinson-Hands, £100 from Mrs E A D Hayes, £50 from Beverley Parsons and a whopping £260 that Lily-Rose Parsons and friends raised completing a 108 mile cycle-ride around Devon. Finally, Professor Simon Pearce and Dr Bijay Vaidya kindly donated the honorarium of £225 they received for an article they wrote on thyrotoxicosis for the British Medical Journal. So, all in all, it’s been a bumper ‘harvest’ in more ways than one and we just can’t thank you enough!

MARTY FELDMANN, 1938 – 1982, RIP

I don’t suppose he knew back then that being male and smoking (according to Mel Brooks) 5 packs of cigarettes a day would contribute so negatively to his TED!

Isn’t it ironic though, how in his case, he capitalised so much on his condition – would he have been the huge success that he undoubtedly was if his eyes had not looked as they did? Was it a case of “every cloud”?

QUESTIONS AND (MORE IMPORTANTLY) ANSWERS TEDct has a panel of medical professionals who can answer most of your general queries on TED, its symptoms and

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treatments. Here's a selection of recent Q & A's you might find useful.

Q. I was wondering if someone might be able to give me

some information on the indicative timescales between the condition stabilising and possible corrective surgery.

I have been suffering with TED for 2 years and started to experience double vision in August 2012 which I understand is due to an enlarged and stiffened muscle pulling one of my eyes down and severely restricting any movement upwards.

In November 2013 I started immunosuppression treatment including some cycles of steroid treatment and since March 2014 my condition appears to have stabilised. I’ve been told that I need to continue with immunosuppression for at least another 4 months to ensure that things really are stable. After that, all being well, I will come off immunosuppression and then options for surgery will be considered.

My question is what is the process and indicative timescale for coming off immunosuppression medication and the start of any surgery?

A. I would suggest a reassessment a minimum of 3

months after coming off immunosuppression before contemplating any surgery. This would ensure that your disease remains "in remission" despite the cessation of immunosuppression.

Q. Hi, I've had moderate TED for 3 years now and am a

member of TEDct. The TED is under control after having had steroid treatment and radio-therapy, but I am finding the runny eyes very uncomfortable. I use Clinitas eye drops to

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combat dry eyes, but in cold winds and sunshine my eyes are permanently running and, as I spend a lot of time out of doors as a crown green bowler, this is becoming a real problem and I am wondering if decompression surgery would alleviate the symptoms. I would be interested to have your thoughts on this. Many thanks.

A. It is difficult to say without seeing you, but watering

eyes can be caused by lots of different factors. One of the more common factors after patients have had TED is incomplete eyelid closure related to proptosis (bulging eyes) or lid retraction. If you have significant proptosis then orbital decompression surgery may help, but less invasive surgery may be possible in your situation such as eyelid surgery, depending what your ophthalmologist finds when he/she examines you. He/she will also be able to detect other factors which may be contributing to your watering and exclude tear duct problems which would be treated differently. I hope that helps.

Q. Following eyelid lowering surgery last October I am

still experiencing a problem with sunlight and fluorescent lights. Although the surgery has helped with the terrible pain I was getting at night, going out on even a mildly sunny day is a problem. I had new prescription sunglasses last year and was assured that the lenses were the darkest the optician could provide, but they are just not dark enough. My question is, where can I go to get really dark lenses, should this be via my consultant ophthalmologist or is there an optician that specialises in this type of lens? I have a high prescription so this might also be a factor. I have also recently been diagnosed with glaucoma.

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A. Thank you for your enquiry. I am afraid I don't have

any specific recommendations, but you need to see an optician rather than an ophthalmologist. Hopefully they will be able to liaise with the spectacle manufacturers to see if any darker glass lenses can be incorporated into your spectacles. Good luck.

Q. Hello, I have an overactive thyroid that was treated

with RI131 in 2005 and I developed TED in 2007 and received no treatment for it at the time. Then last year it came back badly. My GP sent me to A & E on Christmas Eve as one eye was nearly shut and the other very bulgy. I had steroid treatment in April this year for three days and improved greatly, but had an eye hospital check-up recently. They told me I have muscle damage to the right eye (the bulgy one). They also said I needed a special muscle test and will need prisms in glasses. Could you explain what this means? The doctor was running three hours late so everything was rushed. I’ve never contacted you before but I don't know what to expect. My GP said I needed tests asap??!!!

A. If your eye condition has not changed in the last few

months (ie the bulging is about the same, and double vision not changed), then there is usually no urgency to treat. They may be concerned about other associated conditions such as myasthenia (you would have had a blood test for this). They may want the result of this soon, so they can further assess and manage your conditions. On your bulging eye and double vision, you will be offered various assessments/treatments for this and these will be tailored to your specific needs (but essentially bulging eyes can be treated with either nothing, decompression surgery or lid surgery and any squint/double vision can be treated with

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glasses or surgery). You should look at the information we have on our website at www.tedct.co.uk or we can send you a DVD about TED. You should also see a specialist team and ask them questions.

Q. Is there any evidence that a complete thyroidectomy

could make thyroid eye disease worse? … or better?

A. There is no evidence that a complete thyroidectomy

makes thyroid eye disease worse. This is in contrast to radioactive iodine treatment, which can worsen thyroid eye disease, particularly if you are a smoker or have active thyroid eye disease. Therefore, total thyroidectomy is a useful treatment modality for a patient with thyrotoxicosis and thyroid eye disease when thyrotoxicosis remains difficult to control with antithyroid drugs or the patient develops side effects from antithyroid drugs. Some experts have suggested that total thyroidectomy may help thyroid eye disease in the long run by removing antigen stimulus for activation of the immune system. However, this has not been proven by studies.

Q. Is it necessary to take iodine and potassium solution

before a thyroidectomy? Would that iodine worsen TED?

A. Many patients undergoing thyroidectomy for Graves'

disease are treated with Lugol's iodine or potassium iodide solution a few days before the surgery. This treatment is particularly important if your thyroid hormone levels are high to prevent thyroid storm (a serious medical condition caused by very high levels of thyroid hormone levels) or excessive blood loss during the surgery.

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A few days’ treatment of iodine (either as Lugol's iodine or potassium iodide) will not affect TED.

Q. Is a low TSH reading (under 0.05) dangerous over

time?

A. Yes, a fully suppressed TSH (less than 0.1mu/L) has

been shown to be associated with an increased risk of irregular heart rhythm (called atrial fibrillation) and osteoporosis. Therefore, it is best to keep TSH within the normal reference range.

Q. Does an under-active thyroid (hypo) make TED

worse?

A. Yes, hypothyroidism is a risk factor for worsening of

TED. This is particularly evident in patients who develop hypothyroidism following radio-iodine treatment and don't receive a prompt and optimal dose of levothyroxine replacement.

Q. My 15 year-old daughter has hyperthyroidism with eye

involvement. She is deciding to have a permanent solution to her thyroid disease, but is concerned as she thought that the endocrinology team, who discussed a thyroidectomy with her, said that the selenium she is (successfully) taking for her eyes would be ineffective post surgery. Any thoughts, please? Also, she’s been advised by the endocrinologist to take 1000 units of vitamin D prior to (and probably lifelong after) the

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operation. I wonder if there are any reasons she couldn't take both the vitamin D and the selenium?

A. Thank you for your queries.

(a) Recently, it has been shown that selenium improves outcomes in people with mild, but active TED. Therefore, in general, selenium is recommended for 6 months for people with 'mild' and 'active' TED. As far as I am aware, thyroidectomy does not influence the effect of selenium on TED. (b) I can't think of a reason why selenium and vitamin D cannot be taken together. Please address queries to: ted@tedct.co.uk

HELPLINE Lin Welch (wo)mans the TEDct helpline 24/7, 365 days of the year. You can speak to her in absolute confidence and she has the benefit of having ‘been there and done that’ her-self. Lin says “I always say: ‘ring me as many times as you like if it

helps talking to me’”.

You can speak to Lin direct on 0844 800 8133.

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2014 CHRISTMAS CARDS

With only around 9 weeks until Christmas we know you’re super-efficient and you’ll have Xmas all wrapped up by now, but for those of you who aren’t or who’ve found new friends to remember at this time of year, please support us by digging deep and buying our cards. Thank you heartily - every card bought helps us to continue to help you! See the flyer enclosed with this newsletter for further details

RENEWED APPEAL FOR ‘FRESH BLOOD’: NEW TEDCT COMMITTEE MEMBERS Any of you out there with some spare time? Anyone wishing to ‘do their bit’ for TEDct? We really need you! If you can give up a little of your time to attend a couple of (Committee) meetings a year, participate in our Patient Information Meeting (twice a year) and perhaps another one or two ‘displacements’ or you feel you have something to contribute to the way in which TEDct is run, we’d really like to hear from you. You can make a difference and ensure that we keep moving with the times and appeal to the widest possible audience. Committee members receive no remuneration – we do it out of the goodness of our hearts - but fair out of pocket expenses are paid in return for whatever you can offer. If you’d like to make a difference and help us keep TEDct improving the lives of sufferers and spreading the word amongst the medical profession, then please get in touch – we’d love to hear from you. Tel: 0800 800 8133 or email ted@tedct.co.uk

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THYROID EYE DISEASE CHARITABLE TRUST

P O BOX 1928 BRISTOL BS37 0AX

T: 0844 800 8133, E: ted@tedct.co.uk

www.tedct.co.uk

Please let us know if you’d like to get your newsletter by email. You get to see the pictures in colour and our costs are drastically reduced, enabling us to spend the money we save where it matters most. Email us at ted@tedct.co.uk

TEDct aims to provide information, care and support to those affected by thyroid eye disease. Annual membership is £12/overseas £20. If you'd like to make a donation, please state if you are a UK taxpayer as TEDct can reclaim 25p in the pound from HMRC.

USEFUL CONTACTS

British Thyroid Foundation (BTF) 2nd Floor 3 Devonshire Place Harrogate, HG1 4AA T: 01423 709707/709448 W: btf-thyroid.org

British Thyroid Association (BTA) W: british-thyroid-association.org

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USEFUL CONTACTS (continued) Changing Faces The Squire Centre 33-37 University Street London, WC1E 6JN E: info@changingfaces.org.uk

© TEDct 2014

Please note that mention of products such as the Georgiephone or organisations such as RNIB should not be taken as an endorsement by TEDct.

Disclaimer

The purpose of the TEDct newsletter is to provide information to TEDct members. Whilst every effort is made to provide correct information, it is impossible to take into account

individual situations, so it is recommended that you check with

appropriate medical advisers before pursuing any treatment.