issue 90 btfnews 2015 - british thyroid foundation · the newsletter of the british thyroid...

BBTTFFNNeewwssThe newsletter of the British Thyroid Foundation Issue 90

November2015

F O U N D A T I O N

B R I I S HT

Registered Charity England & Wales No. 1006391 Scotland No. SC046037

C

This issue of BTF News has been sponsoredby Amdipharm Mercury Company Limited(AMCo). AMCo were not involved in theproduction or editorial content of thisnewsletter.

In this issueIodine FAQs 2

News from BTF HQ 3

Thyroid In the Media 4

Out and About 4

BTF Projects Update 4

Fundraising and Donations 6

My Story: How thyroid cancerchanged one young womanʼsoutlook on life 8

Feature: The effects of thyroiddisorders on the cardiovascularsystem 9

Letters and Comments 10

Research News:A request for help on TFT testingand an update on an internationalstudy on the causes of GravesʼDisease 11

Research Award News:Updates from BTF Researchwinners 12

Local Groups listings andinformation 15

BTF Support Contacts 16

www.btf-thyroid.org

Insufficient (<150 µg/L)

Adequate (150-499 µg/L)

No dataSub-national or pooled

BTF News 90 l PAGE 1

Why is the study needed?

Iodine deficiency is the most important riskfactor for thyroid disease in adults andchildren. Thyroid disorders are frequentlyfound in cases of iodine deficiency. Pregnantand nursing women in particular have anincreased need for iodine in order to provideenough thyroxine to ensure optimaldevelopment of their child. Even a slightiodine deficiency during pregnancy can leadto impaired brain development of the child,consequently reducing intelligence. In fact,iodine deficiency is the worldʼs leading causeof preventable brain damage and for yearsthe World Health Organization (WHO) haswarned that Europeans are increasinglyaffected by the consequences of iodinedeficiency.

Lack of uniform data

Professor Henry Völzke, from theUniversity of Medicine Greifswald, is thecoordinator of EUthyroid and has beeninstrumental in pushing the project forwards.He says ʻCurrently in Europe there is nouniform dataset for iodine intake. Therefore,we can only speculate about the magnitudeof health problems resulting from a deficientiodine intake.ʼ The EUthyroid network isgathering for the first time uniform data onthe iodine intake of the population inparticipating countries. It will comparenational measures and dietary habits andwork out appropriate measures to improveiodine intake in Europe.

In principle, iodine is absorbed naturallythrough the diet. There are, however, manycountries across Europe that, owing to theircontinental location and dietary habits, areiodine deficient (seafood is a good naturalsource of iodine so mountainous regionstypically have particularly low levels). Overthe last century many European countries

Iodine nutrition during pregnancy in the countries of

the WHO European Region and Kosovo, based on

urinary iodine excretion (µg/L) taken from ʻPrevalence

of iodine deficiency among pregnant women in

Europeʼ by Zimmerman et al (see page 5)

have introduced prevention programs byensuring salt used in the food industry isiodised therefore improving the iodine supplyto the population. However many prominentcountries in Europe, including the UK havenot introduced iodisation programmes.Consequently the WHO has for years calledfor a review of the situation in Europethrough uniform monitoring as a basis forimproved preventive measures. ʻEurope hasa lot of experience with the harmonisation ofdifferent processes across national borders,but in the prevention of iodine deficiency weare lagging behind significantlyʼ said BTFPatron Professor John Lazarus fromCardiff University, regional coordinator of theIodine Global Network (IGN) in Western andCentral Europe, and EUthyroid partner. ʻItrust that with EUthyroid a dynamic iscreated which leads to significantly moreeffective preventive measures.ʼ

See page two for frequently asked questionson iodine

The largest Europe-wide study intoiodine deficiency startsThe largest ever study of iodine intake across Europe has started. The pan-European initiativeEUthyroid network wants to scientifically measure the iodine intake of the European population andthen develop ways to sustainably improve the iodine intake in Europe, particularly for pregnant andnursing women. Thirty-one partners from 28 countries are taking part in the project over a three-year period.

l BTF News 90

Patrons:Clare Balding OBE, Lord Jamie Borwick, Josef CraigMBE, Professor John Lazarus MA MD FRCPFRCOG FACE, Jenny Pitman OBE, Melissa PorterBA (Hons), Gay Search, Dr W Michael G TunbridgeMA MD FRCP

Trustees:Mr Richard D Bliss MA MB FRCS (Chair), Dr TimCheetham BSc MB ChB MD MRCP MRCPCH,Angela Hammond, Carole Ingham, Nikki Kieffer BScMA RGN, Bridget OʼConnor, Dr Petros Perros BScMBBS MD FRCP, Janet Prentice BSc (Hons),Professor Geoffrey E Rose BSc, MS, DSc, MRCP,FRCS, FRCOphth, Professor M Strachan MD FRCP(Edin)

Ex-Officio Members of the Trustees:Dr M Vanderpump MB ChB MD FRCP President,British Thyroid Association, Mr Mark Lansdown BScMB BCh MCh FRCS President, British Associationof Endocrine and Thyroid Surgeons

All enquiries to:The British Thyroid Foundation, 2nd floor,3 Devonshire Place, Harrogate, North YorkshireHG1 4AA Tel: 01423 709707or 01423 709448 www.btf-thyroid.org

Office enquiry line open: Mon to Thurs, 11am - 2pmIn the event of a complaint, please address yourcorrespondence to ʻThe Chair of Trusteesʼ.

Director and Secretary to the Trustees:Mrs J L HickeyTreasurer: Professor Mark StrachanComputer Manager: Professor B HickeyEditor: Liz Clegg [email protected] Editor: Dr Petros PerrosEditorial Board: Nikki Brady, Mr Daniel Ezra,Professor Simon Pearce, Dr Petros Perros,Dr Peter Taylor, Dr Mark VanderpumpWebmaster: Claire SkaifePA to the Director and Office Manager:Mrs Cheryl McMullan [email protected] Officer: Julia [email protected] Assistant: Helen DawsonHead Office Volunteers: Jan Ainscough, AngelaHammond, Vivienne Rivis, Fiona MaxwellDesign & Artwork: Keen Graphics 01423 563888

Next issue of BTF News: March 2016Copyright © 2015 British Thyroid Foundation. Allrights reserved. No part of this publication may bereproduced, stored in a retrieval system ortransmitted in any form or by any means without theprior permission of the copyright owner.

Newsletter Disclaimer: The purpose of the BTFnewsletter is to provide information to BTFmembers. Whilst every effort is made to providecorrect information, it is impossible to take accountof individual situations. It is therefore recommendedthat you check with a member of the relevantmedical profession before embarking on anytreatment other than that which has been prescribedfor you by your doctor. We are happy to forwardcorrespondence between members, but do notnecessarily endorse the views expressed in lettersforwarded. Medical comments in the newsletter are provided bymembers of the medical profession and are basedon the latest scientific evidence and their ownindividual experiences and expertise. Sometimesdiffering opinions on diagnosis, treatment andmanagement of thyroid disorders may be reflectedin the comments provided, as would be the casewith other fields of medicine. The aim is always togive the best possible information and advice.If you have any comments or queries regarding thispublication or on any matter concerning the BritishThyroid Foundation we would be pleased to hearfrom you.

BritishThyroidFoundation

@britishthyroid

FAQs on iodine and thyroidpatientsAlthough those in the UK without a thyroidcondition need to increase their intake ofiodine, particularly pregnant women, toavoid potential problems with their andtheir unborn childʼs thyroid function, peoplewith a pre-existing thyroid condition havedifferent requirements. To try and helpclear up any confusion, here are a few ofthe most common questions we receive atBTF HQ along with answers from the UKIodine Group regarding iodine intake:

Is there any benefit in taking kelp(iodine) supplements when you have athyroid disorder? High dose iodine preparations such as kelpcan lead to both hypo- andhyperthyroidism in susceptible individualswith an underlying thyroid disorder so arebest avoided.

I have been told by my doctor that Ihave a borderline thyroid disorder. Willkelp/iodine supplements help me?Kelp or iodine supplements will almostcertainly not help anyone with a borderlinethyroid disorder because the disorder isprobably an autoimmune condition. In factiodine supplements or kelp could makethings worse.

Iʼve just been diagnosed withhypothyroidism, should I be takingiodised salt/iodine supplements? There is no value in taking extra iodine ifyou are on levothyroxine as you arereceiving manufactured hormone readymade without needing the raw material tomake it yourself.

I know that taking iodine is beneficialwhen planning a baby and duringpregnancy, but is it possible to take toomuch? For those with pre-existing hypothyroidismno additional iodine is required. They needto ensure that they have adequatereplacement of their thyroid hormone pre-conception and ensure this in pregnancyparticularly in the first trimester when theymay require between 25-50mcg extra oflevothyoxiine daily. They should see theirGP as soon as they are planning or getpregnant.

Pregnant women with an over-activethyroid disorder should also see their GPwhen they decide to try to conceive or assoon as they find out they are pregnant asthey may need to alter their medications.Go to www.btf-thyroid.org/projects/pregnancy for moreinformation.

The current recommendation for those whohave no history of a thyroid disorder is thatfor the three months prior to pregnancyand during the pregnancy they shouldensure adequate iodine intake. Go towww.ukiodine.org

Seaweed and the thyroidSeaweed has recently beenadvocated as the new ʻsuper foodʼ.Whilst seaweed is a very good sourceof vitamins and minerals, some typesof seaweed, particularly brownseaweed (Kelp or Kombu) containvery high levels of iodine and shouldbe avoided, particularly by those withan overactive thyroid. Pregnantwomen and children with a normalfunctioning thyroid should also avoideating it because of the amount ofiodine it contains. ProfessorMargaret Rayman, Professor ofNutritional Medicine, University ofSurrey and member of the UK IodineGroup, speaking to the FoodProgramme on BBC Radio 4 in May(www.bbc.co.uk/programmes/b05vsv6y)explained how eating eight grams ofbrown seaweed a day would give anindividual over 20 times therecommended safe level of iodine.She also talked about recent large-scale studies in Asia linking overconsumption of seaweed with anincrease in thyroid cancer and isurging caution in the use of thispowerful plant.

www.ukiodine.org

www.btf-thyroid.org/index.php/campaigns/iodine

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News fromBTF

Code of conductFollowing recent news reports on the mis-selling of personal data by prominentcharities, we would like to reassure all ourmembers and fundraisers that the BTF neverpasses on any personal details to thirdparties. We are currently reviewing all ourcommunication procedures to ensure wecontinue to comply with best practicerecommendations.

BTF annual report onlineThe latest annual report for the BTF is nowavailable on the Charity Commissionʼswebsite or click on http://bit.ly/1VG9kZg

BTF poster UK-widecampaign One of the ongoing frustrations that we knowpatients have is the lack of information givento them by their GP. Raising the profile ofthyroid disease amongst GPs remains one ofthe BTFʼs highest priorities. We weretherefore delighted to have the opportunity forone of our BTF posters to be distributed aspart of a Practice Managers Information Packwhich was sent out to 10,000 GP practices(96.7% of UK surgeries) at the end ofSeptember. We are hoping that this will meanthat many more patients will find out aboutthe range of support BTF offers. If you seeone in your surgery please let us know!

Chronic illness surveySabine Topf, a postgraduate student inPsychology at University College London isdoing her PhD on chronic illness and wantsto research what people with a long-termcondition think about their illness, includingtheir experiences with illness and treatment inthe recent versus distant past, theirknowledge about treatment options andreactions of family, friends and colleagueswhen they learned about the illness. The aimis to gain further insight into how to providebetter support for patients in the future.

Go to http://tinyurl.com/IllnessExperience totake part in this independent survey. It takesabout 40 minutes (30 minutes for Part 1, and10 minutes for Part 2 four weekslater). Participants will receive a £3.75Amazon voucher for a completed survey. Alladults (18+) who have been diagnosed with achronic illness and have been prescribedmedication are eligible to take part.

Survey on hypothyroidismand fatigueDr Nikki Coghill from the Centre forAcademic Primary Care (CAPC) at theUniversity of Bristol is currently writing up theresults from her recent survey onhypothyroidism and fatigue (as mentioned onpage 2, BTF News 87). We hope to makethese available early next year.

Q & As to accompany theBritish Thyroid AssociationStatement on theManagement ofHypothyroidism nowavailableFollowing the publication of the newstatement on the management of primaryhypothyroidism by the British Thyroid

Association (BTA) (see page 1, BTF News89), the BTF has now prepared a list of Q &As with both short and long answers. We arevery grateful to our team of medical expertswho helped prepare this comprehensiveinformation to help patients. Questions coverTSH reference ranges, combination T3 andT4 therapy, pregnancy and alternativetherapies. Go to: www.btf-thyroid.org/professionals/106-statements

New BTF websitelaunchedThe BTF website has had an overhaul togive it a responsive, clean layout thatlooks great on all devices from largemonitors to iPads and smart phones.The website is still packed full ofinformation on a wide range of thyroiddisorders, the latest research news,practical advice sheets and fundraisingsuccess stories but is now simpler tonavigate and easier to view on smallerscreens. Our webmaster Claire Skaifesays, ʻWe transferred all the old articles(over 250 of them) to the new site andcleaned it up. Having worked on the sitesince its last update in 2010 Iʼm veryfamiliar with whatʼs on there, but Icouldnʼt have done it without the rest ofthe team who helped review every wordweʼve written in the last five years. Thenew update means the BTF website willbe a great resource for years to comeʼ.

Comments from our beta testers havebeen very positive: ʻLove the new crispclean layout on my iPad!ʼ ʻReally easy tofind informationʼ. ʻLots of useful info.Fantastic!ʼʻFeels fresh and modern.ʼ

To see our new look head over towww.btf-thyroid.org and let us know whatyou think.

Order your BTF Christmas cardsWe have a brand new collection of traditional and contemporary Christmas cards for sale,which will raise valuable funds for the BTF and let people know about our work.

You can order your cards now by filling in the flyer enclosed with this newsletter or byvisiting the BTF website. Cheques should be made payable to ʻThe British ThyroidFoundationʼ and sent to the address on the order form.

Tell us what you wantfrom the BTFThe BTF Trustees are in theprocess of developing a plan thatwill help define the charityʼspriorities and confirm the directionand key objectives during the nextfive years. You are invited to getinvolved in this process bycompleting the short survey that isenclosed with this newsletter. Youcan also complete the surveyonline by going to www.btf-thyroid.org/get-involved/201-surveys. The deadline forfeedback is 15 January 2016.Once the planning process iscomplete we will report back tomembers through this newsletter.

l BTF News 90

BTF ProjectsUpdate

In the MediaArmour thyroid and Hillary ClintonThe UK press, including the Daily Mail (31 July2015), widely reported on the disclosure by HillaryClintonʼs doctor in the New York Times that MrsClinton takes Armour Thyroid to treat herhypothyroidism. Armour thyroid (also know asdesiccated thyroid extract or NDT) is a thyroidhormone preparation made in the USA from driedextracts of pig thyroid gland.

Mark Vanderpump, President of the BritishThyroid Association (BTA) comments: ʻIn theUSA, as in the UK, levothyroxine (or synthroid)is the treatment recommended for people withhypothyroidism, so this is an unusual choice by

Hillary Clintonʼs doctor. NDT is not licensed as amedicine in either the UK or the USA but classified by the Food and Drug Administration

(FDA) as a whole-food dietary supplement. As detailed in the recent BTF Q&As (see page 3)on the revised Management for Primary Hypothyroidism statement produced by the BTA,which has been published in Clinical Endocrinology, there is no evidence at present fromclinical trials to suggest NDT is a more effective treatment for hypothyroidism. NDT containsone part of tri-iodothyronine (T3) to four-five parts of levothyroxine (T4); this compares to aT3/T4 ratio of about 1:14 in the human thyroid so it cannot be described as physiological ornatural. Treatment with NDT may increase the long-term risk of problems of overtreatmentfrom the excessive T3 including irritation of the heart resulting in tachycardia and loss ofbone density and increased fracture risk.ʼ

Out and AboutJanis Hickey, representing the BTF andJulie McLaren, representing the ThyroidEye Disease Charitable Trust (TEDct)were invited to the Oculoplastic AlliedHealth Professional Study Day in Londonin September.

The emphasis of the meeting was oncaring for patients who had undergonesurgical procedures and treatments for arange of eye disorders, from both anursing and counselling perspective.Presentations with particular relevance tothyroid eye disease included ʻCounsellingthe Oculoplastic Patientʼ and ʻOrthopticsAssessment of TEDʼ.

We would like to thank Nicola Dunlop,Oculoplastic Nurse Consultant atMoorfields Eye Hospital (MEH) and winnerof the 2013 BTF Nurse Award fororganising the meeting and inviting ourpatient support groups. It was anopportunity for us to raise awareness ofthyroid eye disease, and the work ofTEAMeD, in particular the recentlypublished guidelines for thyroid eye

The BTF is involved in several key thyroidrelated areas, with the aim of improvingknowledge, assisting with research andimproving the patientʼs experience. At themoment we are focusing on developing ahypothyroidism care strategy, iodinedeficiency and subsequent thyroid problems,children with thyroid issues, thyroid cancerand thyroid eye disease. Each project groupmeets regularly to discuss progress,although we do not always have updatesavailable for every newsletter.

Hypothyroidism CareStrategyProfessor ScottWilkes, member ofthe BTFHypothyroidismCare Strategygroup and leadingclinical academicat the Universityof Sunderland isspearheading aground-breakingnew study intohypothyroidism calledCATHRINE Clinical And geneticdeterminants of THyroid hormoneReplacement IN general practicE.

He is heading the team looking at control ofhypothyroidism in general practice.Professor Wilkes is also working withresearchers in Newcastle, Dundee andWales to examine the effect that behaviouraland genetic influences may have on itseffective treatment. The BTF will help ensurethe study remains patient focused by beinginvolved in the design of the questionnaire,the accompanying literature and thepracticalities for patients taking part. Thestudy will examine why standard treatment isnot as effective for all hypothyroid patients,and whether genetics plays a part in this, aswell as behavioural factors.

As a Professor of General Practice andPrimary Care embedded in the SunderlandSchool of Pharmacy, Professor Wilkes hasunique opportunities to work with medicalexperts. As well as working at the Universityof Sunderland – which has the biggestSchool of Pharmacy in the UK – he is a part-time GP in Amble, Northumberland. Hebelieves more needs to be done to highlightthe condition and the effects it has on

disease (see page 5 BTF News 89)http://bit.ly/1kqmQPR

British Endocrine SocietiesconferenceThe BTF will be attending the annualBritish Endocrine Societies (BES)conference at the beginning of Novemberin Edinburgh (as we go to press).

This conference is the largest UK meetingon hormone research and it includes someof the best British and internationalscience and research, clinical investigationand clinical practice in endocrinology.

There will be a number of sessions on thelatest treatments and debates concerningthe thyroid, weʼll include a report on ourwebsite after the meeting.

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peopleʼs lives. He explained:ʻHypothyroidism affects approximately threemillion people in the UK. But the symptomscan be very non-specific, ignored by patientsand missed by professionalsʼ.

ʻOur study will look to see what can be doneto treat the condition more effectively and tolook at why, despite the treatment, somepatients still feel unwell. Is it to do withlifestyle, genetics or both?ʼHe added: ʻWe know that a significantproportion of people, who have beendiagnosed with hypothyroidism and arebeing treated, still report ill health. Anecdotal information can be helpful topatients, but it is not a substitute forsystematic and robust scientific evidence.Patients have the right to be able todistinguish between fact and fiction. It isimportant that doctors who specialise inthyroid disease better understand why asmall proportion of treated patients donʼt feelwell. Paradoxically, a large proportion havefluctuating blood test results, leading to a lotof expensive rechecking, and the best way ofaddressing the situation is through rigorousscientific researchʼ.

The project will also explore patient andprofessional attitudes and perceptions ofsymptom control in hypothyroidism. Patientswill be interviewed and asked to share theirexperiences of treatment and 3,000 of themwill have their genetic profile measured inone of the biggest exercises of its kind everundertaken in the UK. The teamʼsinvestigations will take place in the NorthEast and in Wales and the study will last 18months. The work is being supported by agrant from AMCo.

Children

Currently the amount and quality ofinformation given to parents of newbornsdiagnosed with congenital hypothyroidism

(CHT) varies enormously. Some parentsreceive very comprehensive support butothers report that the lack of reassuringinformation and signposting leaves themfeeling anxious and isolated at a time thatshould be so special. We are working with asmall group of UK paediatric endocrinespecialist nurses with the aim of producing acentralised accessible resource that will beavailable to all parents at the point ofdiagnosis.

So far we have hosted a short survey on theBTF website to gather data about peopleʼsexperiences, the results of which werepresented at the European Society forPaediatric Endocrinology meeting inBarcelona in early October. We hope to beable to report further progress on this projectin the future.

Nurse Christine Davies of the Cardiff & ValeUniversity Health Board, who is coordinatingthe project, writes ʻThank you to all parentswho very kindly took the time to complete thequestionnaire on CHT. The commentsreceived from all the parents wereinvaluable.ʼ

Thyroid eye diseaseThyroid (the official journal of the AmericanThyroid Association) published a paper inSeptember by members of the TEAMeDgroup (The UK Thyroid Eye DiseaseAmsterdam Declaration ImplementationGroup). TEAMeD was formed in 2010 toimprove prevention, care and access to carefor thyroid eye disease (TED), andcomprises representatives of keyorganisations including the BTF. The articleis entitled ʻFuture research in Gravesʼorbitopathy: from priority setting to trialdesign through patient and publicinvolvementʼ. In the study the group reportedon the two day Patient, Public, ProfessionalsInformation event on Gravesʼ Orbitopathy(GO) held in Newcastle in May 2014, whichaimed to promote future research. Theabstract explains how the highest priority forfuture research that came out of this eventwas for psychological support in GO, andprediction of GO.www.ncbi.nlm.nih.gov/pubmed/26359308

In April 2015 TEAMeD submitted anapplication entitled Optimal Management ofPatients with Gravesʼ Orbitopathy: Non-Specialist Assessment and ReferralPathways, to the Royal College ofPhysicians (RCP) which has been acceptedon to the RCP Concise GuidelinesProgramme. This abstract outlined therecommendations for clinical diagnosis,initial management and referral pathways.

Further work is now being undertaken byTEAMeD to develop and disseminate theguidelines. http://bit.ly/1kqmQPR

IodineThe UK Iodine Group, of which the BTF ispart has put together a list of FAQs aboutiodine on their website www.ukiodine.org/FAQsThey have also welcomed the news that thelargest Europe wide study is to beundertaken on iodine deficiency (see page 1).

Recent international studies have beenpublished on iodine deficiency. A viewpointpublished in The Lancet Diabetes andEndocrinology by Zimmerman et alhttp://www.thelancet.com/journals/landia/article/PIIS2213-8587(15)00263-6/fulltext?rss=yes details the adverse effectsof iodine deficiency in populations—decreased IQ, goiter, and hypo- andhyperthyroidism—and points out these areeasily corrected with salt iodisation of foodby the food manufacturers. Yet they continueto affect many countries, with an estimated1·9 billion people at risk worldwide. Pregnantwomen are the key target group becauseiodine deficiency in these women canirreversibly impair cognitive development ofthe developing baby. Observational studiesin Europe have suggested that mild-to-moderate iodine deficiency during pregnancymay have long-term adverse effects on childcognition. A recent Lancet series on childdevelopment, as well as the World Bank,recommend that governments put a highpriority on salt iodisation to promote healthand economic development. Although thisrecommendation was aimed at developingcountries, it applies equally well to Europe.

Many countries across the world use iodisedsalt in bread

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l BTF News 90

Fundraisingand Donations

If you are involved in a fundraising event inaid of the BTF please get in touch so that wecan send you sponsorship forms, postersand other publicity materials. We can alsosupply BTF t-shirts or running vests, butplease allow enough time for us to get theright size for you.

If you are employed, please check with youremployer to find out whether it operates amatch-funding scheme (matching all or partof what you raise).

Please send us some information aboutyour event and include photograph(s) alongwith your permission to publish them in theBTF News (subject to space) and on theBTF website.

FundraisersBritish 10k Runners

A record breaking 17 runners took part inThe British 10k London Run on July 12 forthe BTF. They were:

Freddie Cooke, Ian Cooke, Sarah Cooke,Bruce Crowley, Caroline Crowley, JamesCrowley, Eleanor George, Karen George,Amy Goldsmith, Derrick Johnson,Bernadette Johnson, Lorraine Scott,Richard Thomas, The Walters family -Jennifer, Jill and Graham and DebbieWebb.

Jill Walters along with Graham andJennifer (pictured together below) raisedover £1,000 between them and had afantastic time. Jill, who has an underactivethyroid, commented: ʻI have never run thisdistance before (age 58!) but apparently Iwas 98th in the over-50 age group women.We had a great run and were even pleasedwith our times (not expected at all!)ʼ.

Debbie Webb has suffered with thyroidproblems for the last four years and shewanted to do whatever she could to helppeople facing thyroid problems and thyroidcancer. She said: ‘The race day itself wastough and I was injured along the way but Imanaged to make it to the finish line in justunder one hour and 23 minutes’.

Thank you to all our fantastic 10k runnersfor supporting the BTF!

To reserve a place in this yearʼs race onSunday 10 July email [email protected]

Jacqui Hoyle completed a 750m OpenWater Swimming Challenge in a local lake

for the BTF in Julyand raised nearly£250. Jacqui wasdiagnosedwith HashimotoʼsThyroiditis(autoimmunehypothyroidism) in2013. Hermotivation fortaking on thischallenge was tohelp overcomethe physical

limitations sheʼsencountered through living with

fibromyalgia, which she believes is asymptom of having an underactive thyroid.She said: ʻSwimming has helped treat themuscle aches, stiffness and chronic painʼ

Amy and Matt Church ran the JaneTomlinson York 10k in August

for the BTF.Amy has athyroidcondition andhas struggledto get thecorrecttreatment. Shereally wanted toraise money tohelp people and

families in the same position and theymanaged to raise £50.

Andy Handley ran the Birmingham HalfMarathon in October (as we go to press)

Jalmeen Lall raised nearly £600 for the BTFby completing the Forsters Law Kent CoastalMarathon in September.

Anastasia Pinches and Julia Kirby bothtook part in the Tough Mudder Yorkshire

event in August (a team-oriented 10-12 mile(18-20 km) obstacle course in case you werewondering!).

Julia (below) raised a fantastic £350 andsaid ʻThe day was tough, muddy, tiring andvery cold, but a great laugh with a real senseof achievement on completion. My favouriteobstacles were Birth Canal, Cry Baby, Ballsto the Wall and Pyramid! Weʼre planning ondoing it again next year so it couldnʼt havebeen too bad, either that or the brain fog hastaken over and I canʼt remember how bad itwas!ʼ

Anastasia (below) was diagnosed with anunder-active thyroid at the age of 14. Sheraised over £250 and said ʻIt was fun, toughand very, very muddy! I managed to finish itin around 4 hours (although I was surprised Ifinished it at all!) and was completelyexhausted by the end! But knowing that allthe money Iʼd raised was going to such agreat charity spurred me on and Iʼm glad thatIʼve managed to get the word out to myfriends and family about the amazing workthat the BTF charity do!ʼ

Adrian Cobbin raised £470 by running theGreat North Run after his dad was diagnosedwith thyroid cancer last year. His employerVocalink matchfunded his donation.

Tanya McLean ran the Norwich 10k inAugust and raised £100 for the BTF.


Cycling successesAndy Sansom (below) cycled fromLandʼs End to John OʼGroats inSeptember for his 50th birthday andraised nearly £1,000! (What a way tocelebrate!). He suffers from anunderactive thyroid and wanted to givesomething back for the support he hasreceived from the BTF over the years.

Glenn Pearce (right) also decided totake on this epic cycling challenge, heexplains his reasons:

Deciding to cycle from Landʼs End toJohn OʼGroats has always been alifelong goal of mine. I did this in thememory of my beautiful little big sisterTonie-Marie who sadly passed awaythree years ago, leaving six childrenbehind and who herself had anunderactive thyroid.

ʻAbout two years ago I myself was alsodiagnosed with an under-active thyroidand so I have faced and still face thedaily struggles that come with it. And soI took on this challenge with theseadditional challenges myself but I wantto do so to not only achieve a personalgoal of mine in my sisterʼs name whilstraising money and awareness of thisdebilitating condition and great cause,but to also give hope to all the peopleout there who believe they now canʼtachieve their hopes and dreamsbecause of this condition. My messageis you can….trust me. I just cycled 934miles in 12.5 days in spite of thiscondition!

ʻIf my example can inspire one person tostrive to achieve their goals and dreamsthen I have succeeded. Live your life,follow your dreams and maybe you will

surprise yourself if you just take the firststep. You may have to do it differently tohow you would have before you becameill but there is never only one path toyour dreams and goals. Find the paththatʼs right for you and start headingtowards it one step (or peddle in mycase) at a time and you will get there.

ʻI would not have smashed my £500target, which is currently at £790,without the support I received and wouldlike to thank my friends and family for alltheir encouragement, generosity andbelief in me. I would also like to give aspecial thanks to the lovely employeesof South Gloucestershire Council whodonated and raised money on my behalftowards this necessary and worthwhilework that the British Thyroid Foundationdoʼ.

Yvonne Wyllie who suffers fromhypothyroidism took part in a 50 milePedal for Scotland event and raised£70.

Jason Mitchell (below) who has anoveractive thyroid raised a fantastic£225 by cycling from London to Brightonin September.

Alicia Craven and Tiana Lever aged 11held a cake and loom band stall at school.The girls raised an incredible £200 in total,split between the BTF and AlzheimersSociety. Alicia suffers from an under-activethyroid and Tianaʼs nan passed away fromAlzheimers last year. Alicia also raised fundsfor the BTF by taking part in a fun run in thesummer.

Roisin Sharp and herdad took part in theMini Great North Runfor the second yearin a row – a distanceof 1.5k and raisedover £250! Roisinwas born with anunderactive thyroidand said herreason for takingpart was to raisemore money tohelp people withpoorly thyroids.

Thank you so much girls!

Future FundraisersSteve Foulkes is cycling from London toParis in September 2016 for the BTF. Heexplains his reasons: ʻSomeone special tome went through thyroid cancer, whilst goingthrough this she didnʼt even stop work orbeing a mum and carried on as if nothingwas wrong. She is now doing her bit to helpothers by taking part in a clinical trial. Whilstshe was going through this I felt helpless butnow understand that I can do somethingsmall to help raise money and maybeawareness, so I am going to be doing theLondon to Paris cycle ride in September2016 and am hoping to raise £1500 for theBTF through my just giving pagewww.justgiving.com/steven-foulkes

DonationsMany thanks for your generous donations.We are grateful for them all, including thosedonated online, often in response to adviceand support from our telephonecontacts, local coordinators and BTF headoffice and also for donations by members atthe time of joining BTF or at renewal time.

Employees of Capita collected £189.54 forthe British Thyroid Foundation by taking partin a dress down Friday.

£47.20 was donated in memory of IvyBesley.

l BTF News 90

My StoryPaige was diagnosedwith thyroid cancer lastyear at the age of 22.She explains how it haschanged her outlookon life.

August of 2014 mydoctor felt a lump onthe left side of myneck. She told methat this was anodule and it waslocated on mythyroid gland. I had

never thought toomuch about the thyroid before. Once the lump was

discovered I had to go to multiple endocrinologists. I had my neckexamined and I had many biopsies done on the area. My doctortold me that a lot of people live with nodules on their thyroids andthat it doesnʼt always mean that it will be cancerous. There was a5% chance that this nodule would be cancerous.

On September 23 2014 I found out the results from my biopsiesand was told that I had thyroid cancer. When the doctor told me, itfelt like someone had ripped my heart out. I felt as though theworld had stopped for a second. The first thing I thought was,ʻWill I make it through this?ʼ It was harder for me to accept thisbecause I have struggled with health issues in the past. I had thispiercing feeling in my stomach and I couldnʼt help but think, whyme? Why did I have to go through pain and sorrow again?

When I found out that I was able to beat this it really made methink about the people who canʼt get through cancer and whofight so hard but sadly lose their lives. I wonder how is that fair? Ihave had so many emotions about this whole experience but Ihave more emotions about the people that canʼt be helped. Goingto countless doctors and cancer hospitals made me realise howreal this is and how tough those cancer fighters are. When I foundout I had cancer, I cried and cried and cried. I cried because thiswas happening to me, but I also cried because I could getthrough it. I cried for the people who had to lose their lives to thisdisease. I cried for their families who had to watch their loved onestruggle. I cried for my family, because no parent should have tosee their child suffer. I cried for my health, because I have foughtfor it multiple times. I cried to stay strong, no matter what.

My family means the world to me. They have truly been the bestsupport system and I am forever thankful for their never-endinglove. It was so hard for me to tell my family when I got the news. Iremember shaking as I called my mum. I couldnʼt even tell her inperson because I was away at college for my final term beforegraduating. My mum answered the phone and I tried so hard tokeep it together, but my voice was trembling. I donʼt think I willever forget the moment that I told my mother I had thyroid cancer.The words that no parent ever wants to hear come out of theirchildʼs mouth. She was so strong for me, she told me that nomatter what, I would get through this and that she would never

leave my side. My parents came to visit me that day and theyheld me close as I cried. I could see the pain in their eyes; I couldtell they were hurting for me. I got through this with theoverwhelming love of my family.

Having cancer has made me realise how lucky I am. And I donʼtmean that Iʼm lucky because I got cancer. I am lucky because Iam alive. Not many people will understand this concept and how Ican say that I am lucky that I went through this. As crazy as thatsounds and as unlucky as I may feel at times and as sad as I canget on my hard days, I am alive. I have a purpose just likeeveryone else in this world. I have goals, and a meaning to life.Having cancer does not define me.

After countless doctors appointments and check ups, I then hadto meet with different surgeons because the only way I could becured from this was to have my whole thyroid removed. OnDecember 15 2014, I had a thyroidectomy - a procedure toremove my entire thyroid gland. I had an amazing surgeon who Itrusted and I knew that he would take good care of me. Iremember crying so much once the surgery was over. I feltoverwhelmed with emotions and relieved. I looked at my scar acouple of hours after surgery and I knew that I would wear myscar with pride. I overcame the hardest obstacle that I have everhad to face and I came out an even stronger person than I wasbefore. Once my surgery was completed, I had to wait a couple ofmonths to go through radioactive iodine treatment to destroy anyremaining thyroid tissue in my neck. The final treatment was asuccess and in March of 2015 I got the news from the doctor thatI was cancer free.

I take levothyroxine every day now. It took me some time toadjust to this medication and Iʼm still trying to get the correctdosage. I have days where I feel extremely fatigued and I feel likeI have no energy at all. I am still dealing with anxiety and somedepression that came from this experience. However, I havelearned to cope. I have found myself through all of this. Hardtimes reveal your true strength. But most importantly, I have letthis teach me about life instead of bringing me down. I haveallowed myself to breathe and realise that I am alive, I am livingand I have a bright future ahead of me.

My photo was taken one week after my surgery. I may not have athyroid anymore, but I have my whole life ahead of me. This scarwill represent a significant change in the course of my life. I amalive and I am thankful for every second of every day. Donʼt evergive up because life is a beautiful thing and it is worth fighting for.

ʻWhen the doctor told me, it felt

like someone had ripped my

heart out. I felt as though the

world had stopped for a second.ʼ


FeatureThe thyroid and the cardiovascular systemThe thyroid gland is responsible for regulating many vital bodilyfunctions. A healthy thyroid produces just the right amount ofthyroid hormone to help regulate the bodyʼs metabolism and howmuch oxygen and energy your body uses, digestive function,muscle function and skin tone. The thyroid in fact has at leastsome effect on every organ in the body. Here we look at the effecton the cardiovascular system.

Impact on the heart

Any type of thyroid disease may have a direct impact on theheart. The heart reacts to any thyroid dysfunction: it will eitherspeed up in the case of an overactive thyroid or slow down in thepresence of an underactive thyroid. Without treatment thyroiddisorders can worsen existing heart diseases or cause new ones.

How thyroid hormones affect your heart and blood vessels

The heart is a major target of thyroid hormones and will respondto any changes in thyroid hormone levels. When there is notenough thyroid hormone, neither the heart nor the blood vesselscan function normally. The two main thyroid hormones producedare thyroxine (T4) and triiodothyronine (T3). Although the thyroidgland produces more T4 (80 percent) compared with T3, T3 ismore active than T4 and is the thyroid hormone responsible forregulating heart rate, pulse, blood circulation, oxygenconsumption and the way the heart pumps. Much of the T4produced is actually converted into the more active T3 inside thecells of the body.

Too little thyroid hormone because of an underactive thyroid(hypothyroidism) can cause the heart to beat too slowly orirregularly, to flutter with missing or additional beats. As a result atype of arrhythmia called bradycardia may develop which leavesorgans and tissues without enough oxygen and nutrients. Anunderactive thyroid can also over time, if left untreated, causehigh blood pressure and an increase in cholesterol in the bloodwith the consequence of developing atherosclerosis (the buildupof fats, cholesterol and other substances in and on artery walls(plaques), which can restrict blood flow) - a risk for heart attackand stroke.

Too much thyroid hormone due to an overactive thyroid(hyperthyroidism) can cause chest pains and palpitations that donot show up during a heart check-up. An overactive thyroid canalso cause an increase in blood pressure, the heart to beat fasterand a form of arrhythmia (abnormal heart rhythm) calledtachycardia may develop – a risk factor for heart attacks.Hyperthyroidism can also cause other arrhythmias such as atrialfibrillation.

Even mild hypothyroidism can have an effect on the heart

Subclinical (borderline) hypothyroidism affects four to 20% of thepopulation and is more common in women than in men with theincidence increasing with age. Although the absolute risk of a

problem is very low, recent studies have indicated that peoplewith subclinical hypothyroidism occurring in middle age may be ata greater risk of developing heart problems. More studies areneeded but a recent review of data from almost 50,000 peoplestudying the risk of stroke in individuals with borderline(subclinical) hypothyroidism by Chaker et al (JCEM June 2015)identified that there was no clear association overall betweensubclinical hypothyroidism and stroke. However when studyingonly younger individuals (aged less than 50) those withsubclinical hypothyroidism were over three times more likely tohave a stroke. At present it is unclear whether treatment withlevothyroxine will reduce the risk of stroke in these individuals.However a study in May 2012 by Razvi et alhttp://archinte.jamanetwork.com/article.aspx?articleid=1149639previously indicated thatyounger individuals withsubclinical hypothyroidismwho were treated withlevothyroxine hadreduced heart diseaseevents than those whowere not. These studiesdemonstrate an urgentneed for clinical trials toassess the benefits oftreating subclinicalhypothyroidism onheart disease andstroke particularly inyounger people.

Summary

It is important if youhave a thyroid disorder(even if it is mild) to go for regular blood tests asrecommended by your GP to ensure you are on the correct levelof medication to reduce the chance of complications with yourheart.

Symptoms of heart disease are much more likely to occur inpeople who have underlying heart disease from another cause soit is particularly important to be regularly monitored if you fall intothis category.

Permanent changes in the heart are unusual in patients with anormal healthy heart, unless the thyroid disease is particularlysevere and left untreated for long periods of time.

Sources: http://thyroidweek.org/en/thyroid-and-heart

http://heartdisease.about.com/od/lesscommonheartproblems/a/thyroidheart.htm

http://www.thyroid.ca/e6a.php

Subclinical hypothyroidism and the risk of stroke events and fatalstroke: an individual participant data analysis -Journal of ClinEndocrinology & Metabolism 2015 Jun;100(6):2181-91. doi:10.1210/jc.2015-1438. Epub 2015 Apr 9.

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l BTF News 90

Anon: I have an 18 year old daughter withan over-active thyroid. She is due to haveradioactive treatment soon I would like toknow if this will affect her fertility. Theconsultant did not really give me greatconfidence. Should we be concerned?Should we consider egg freezing? Any helpwould be greatly appreciated.

Our medical advisor replies: Radioactiveiodine treatment has been used for 70 yearsand is not associated with a risk of reducedfertility later on. The advice is that womenshould not become pregnant for six monthsafter the treatment in order to avoid risks tothe fetus associated with the radiation. Theequivalent gonadal dose (i.e. dose to theovaries) one would get with a dose of 400MBq of radioiodine is the same as having an

abdominal CT scan. This is not an indicationfor egg freezing.More information about radioiodine treatmentfor an over-active thyroid can be found at:www.btf-thyroid.org/index.php/thyroid/leaflets/radioactive-iodine-guide

JO asks: I was diagnosed 10 years ago withan under-active thyroid. Last year I wasdiagnosed with breast cancer and I haveread some articles - some informative somefrightening about a connection with takinglevothyroxine. I wondered if any one couldshed any light on this.

Our medical advisor replies: The linkbetween thyroid disease and various formsof cancer including breast cancer have beendebated for over 30 years. A number ofstudies have shown differing results. Onestudy showed no link between an under-active thyroid and various types of cancers.A few others showed no or reduced risk inpeople with hypothyroidism (under-activethyroid). Similarly, some studies show thatpeople on levothyroxine have a higher risk ofbreast cancer whereas many others haveshown either no increased risk or even areduced risk. The differences in these resultsfrom many studies is the reason why no oneis clear regarding the exact link between thetwo. There are many differences betweenthe various studies including the geographyof where the patients were studied, theimpact of other risk factors on both thethyroid and risk of cancer (for example,smokers have a higher risk of cancers aswell as an over-active thyroid or older age isassociated with increasing risk of bothconditions) and how long patients werestudied for. In addition, any link between twoconditions doesnʼt necessarily mean thatthey have a cause and effect relationship. Itmight be that a third factor may be having aneffect on both conditions. So in summarythere are reports of a link between thyroiddisease and cancers but it is not confirmeddefinitively. This is the reason why specialistsare currently unsure if this is a true link or not.

AN asks: I have an under-active thyroid andtake 2.5ml of levothyroxine oral solution(100mcg per 5ml). After a scan last year aGastro Liver consultant has requested I havea CT scan with contrast, which Iʼve been toldwill have Iodine in it. Will this be safe for meto have or not considering my thyroid? Fiveyears ago my thyroid did go from under-active to over-active, however, it is now backto being under-active and has been for overfive years.

Our medical advisor replies: Changes inthyroid function can be brought on byexposure to an iodine load. It would be

useful to know if there was a suspectedtrigger that may have been implicated fiveyears ago. That said, many patients withhypothyroidism tolerate imaging withcontrast without incident and it may bereasonable to monitor the thyroid functionmore closely for 6-8 weeks after the scan isperformed.

CH asks: Could you please advise me aboutthe use of 20mcg of liothyronine duringtreatment for follicular thyroid cancer HurtleCell variant? I read the July 2014 BritishThyroid Association guidelines where itrecommends that during radioactive iodine(RAI) treatment to change to liothyroninefrom levothyroxine prior to the next RAItreatment.

I was prescribed liothyronine tabletscontinuously during a two and a half yearperiod – one 20mcg tablets three times dailyfrom March 2012 but in November 2012 mydose was reduced to two tablets daily inorder to stabilise my dosage and I was toldto halve the second tablet - taking one tabletin the morning and half a tablet mid-day andhalf in the evening. Prior to RAI in July 2012I was told to stop taking the tablets for twoweeks. The same procedure was applied forMarch 2013 and November 2013 and aftereach ablation I was told to restartliothyronine at the reduced dose. Could youplease advise if it is normal practice to useliothyronine for this length of time during RAIrepeat procedures within thyroid units.

Our medical advisor replies: Usingliothyronine before RAI is absolutely fine butmost centres would convert to levothyroxinebetween courses.

Many centres would use thyrogen now andsimply maintain levothyroxine and notchange between the two forms and certainlynot use liothyronine for long-termmaintenance. Some people do get somebenefit from using both forms of thyroxinereplacement if they remain clinicallyhypothyroid on levothyroxine alone but theevidence for this is poor but is included in theEuropean Guidelines (but not British ThyroidAssociation or American Thyroid Associationguidelines).I would not recommend usingliothyronine continuously for two and a halfyears during courses of RAI. Furtherinformation on treatment with thyroidhormones can be found at: www.btf-thyroid.org/professionals/106-statements

Letters andComments

We welcome letters from our membersbut please note that letters may beedited at the Editorʼs discretion.

Please address general letters to: TheEditor, BTF News, The British ThyroidFoundation, 3 Devonshire Place,Harrogate, North Yorkshire HG1 4AA orby email to [email protected] address medical queries to theMedical Enquiries Coordinator at theaddress above or by email to [email protected]. Pleaseremember to include your membershipnumber.

Unless you state otherwise, we willassume that you consent to having yourletter and our reply published in thenewsletter. Medical queries will beanonymised. Medical questions,whether or not intended for publication,will normally be referred to one of ourmedical advisors, and you will receive aconfidential reply. Please note that ouradvisors are not able to give you awritten personal consultation and thattheir advice is provided for informationonly. For specific medical queries youshould make an appointment with yourdoctor. You should not alter therecommended treatment issued by yourpersonal physician without theirknowledge and agreement.


ResearchNews

Is it desirable toharmonise theresults of thyroidfunction tests? Arequest for advicefrom the BTFDr Graham Beastall, PastPresident of the InternationalFederation of ClinicalChemistry and Laboratory Medicine(IFCC) explains details of a global study being undertaken toaddress the issue of harmonisation of thyroid testing:

ʻThe timely diagnosis and treatment of thyroid dysfunction is essential.This relies on adequate first-line laboratory testing of serum thyroidstimulating hormone (TSH) and free thyroxine (FT4). The laboratoryand clinical community have long recognised the need to achievecomparability of measurement results between the methods availablefrom different manufacturers.

The measurement of these two hormones in serum is challenging.They are both present in extremely low concentrations. Themeasurement of FT4 has to be performed in the presence of very

much higher concentrations of thyroxine, which is bound to serumproteins. TSH exists in serum in several different forms, which meansthat it is not possible to define a single standard preparation, which isrepresentative of all patients and conditions.

In response to this need, the IFCC has led a global project with inputfrom academics, laboratory experts, proficiency testing organisers andthe global companies that manufacture the TSH and FT4 methods. Theresults of this project have been published and advice is now beingsought from doctors and from patients with thyroid dysfunction.

For FT4, the differences between methods of testing is substantial andall currently available FT4 methods give results that are lower than thenew definitive reference procedure, with some methods yielding resultsless than 50% of the reference procedure. Re-calibration of theavailable FT4 tests is feasible so that all methods can be modified togive very similar results. However, this will require substantial methodrelated changes in the lower and upper limits of current referenceintervals for normal patients. The variability between the different TSHmethods is significant but less dramatic than for FT4 - approximately20%. It is possible to harmonise TSH methods to produce very similarresults but this will lead to some modest changes to the upper limit ofthe reference interval for normal patients.

Doctors and patients are being invited to comment on the balancebetween the benefit of all methods giving very similar results and therisk that may arise from a change of reference intervals, including theimpact on previous results for individual patients.

Any BTF member who would like to learn more about this important butcomplex study is invited to contact Dr Beastall [email protected]

International collobarationbetween scientists toinvestigate the causes ofGravesʼ DiseaseIn BTF News 89 (page12) we reported onINDIGO (Investigation of Novel biomarkersand Definition of the role of the microbiome InGravesʼ Orbitopathy); a research projectstudying Gravesʼ Disease (GD) and its eyecomplication (GO) coordinated by Professor Marian Ludgate fromCardiff University School of Medicine. GD is an autoimmune conditionin which the bodyʼs immune system attacks the thyroid leading tohyperthyroidism; almost half of GD patients develop an eyecomplication that has considerable impact on general well-being and isnot easy to treat.

What triggers the production of autoantibodies is unclear but it isthought to include genetic predisposition and environmental factors(stress, smoking). Several studies have shown that billions of differentmicro-organisms live in our gut influencing bowel activity and theimmune system. The cooperation among research centres andscientists with different backgrounds aims to investigate whether micro-organisms present in our gut regulate our immune systems and couldcontribute to the process leading to GD and GO. Below, we highlightthe work of two of these international researchers:

Hedda Luise Köhling (above right) from the University Hospital inEssen, Germany, will spend 12 months at a company called Cultech inSouth Wales that produces probiotics and food supplements. Hedda is

training to specialise as a medicalmicrobiologist and therefore used to lab workwith bacteria. Danila Covelli (pictured left)from University of Milan, will join Hedda andthey will spend six months together atCultech. She will also spend six months at acompany, Parco Tecnologico Padano (PTP),based in Lodi, Italy.

ʻIʼm an endocrinologist and have been workingin the Endocrine Unit at Ospedale Policlinico,Milan, since 2007. Iʼve mainly worked at thyroid

clinic and collaborated in clinical trials on GO patientsʼ.

During their time at Cultech Hedda and Danila have been involved inʻtest-tubeʼ experiments to re-create the intestinal ecosystem. Faecalsamples from GD/GO patients and healthy controls have been used tostimulate cells and compare the cytokines (regulate the immunesystem) produced. The Cultech probiotic, Lab4, has been added tosamples to identify any possible influence on cytokine production.Finally traditional microbiological analysis (the ʻbugsʼ are grown on agarplates) and DNA extraction have been done on all faecal samples toidentify the main bacteria living in the gut of GD/GO patients tocompare with healthy subjects.

In the time Danila spends at PTP she will investigate whether GD/GOpatients produce an immune response to gut micro-organisms or foodderived antigens (antigens are the fragments recognised byantibodies). That will indicate whether microbial or food derivedantigens are able to trigger thyroid disease or are associated with eyedisease.ʼ

l BTF News 90

Research AwardNews

congenital anomalies;including congenital heartdefects and other, mainlygastrointestinal and urinarydefects. For the past six years Ihave been working withEUROCAT, an organisation thatregisters fetuses and babies withcongenital anomalies throughoutEurope, carrying outepidemiological research with aview to prevention; and laterallywith the daughter organisationEUROmediCAT which is concernedwith drug exposure in early pregnancy and its association withcongenital anomalies.

I am thrilled to receive the BTF Evelyn Ashley Award and intendto use it in two ways: firstly I will use the money to pay for my timewhile I write a protocol for a piece of research that, when fullyfunded, I will carry out with the expert team here at UlsterUniversity. We will use the EUROmediCAT database to estimatethe association between thyroid disease in pregnancy andspecific congenital anomalies, looking at hypothyroidism andhyperthyroidism separately. As maternal illness, both chronicillness and those that occur during pregnancy, are recorded in thedatabase, we hope that we will be able to look at both treated anduntreated disease.

Hypothyroidism during pregnancy has been associated withcongenital anomalies, but many women suffer from both thyroiddisease and diabetes that can also lead to congenital anomalies;and we hope to be able to begin to separate the effects of both inour analysis. There is some evidence that hyperthyroidism and/orthe drugs used to treat it during pregnancy are associated withspecific congenital anomalies. This is very difficult to research ashyperthyroidism is rare, as are specific congenital anomalies, andit takes a huge population to power such a study. The strength ofEUROmediCAT is that we have such a population.

Our team is building expertise in linking data from nationaldatasets and I will also be able to investigate what sources ofdata are available in the UK to examine thyroid disease inpregnancy. This will include thyroid disease, the medicationsused and any associated diabetes in pregnancy and birthoutcomes such as miscarriage, premature birth and stillbirth. Itmay also be possible to link these to developmental outcomes forthe live born children, but this has not been carried out so far.

Unfortunately, since not every pregnant woman gets her thyroidfunction tested, we will not be able to look at the effects ofsubclinical hypothyroidism, but we may be able to plan moreresearch in the future. Like most other researchers, I am fundedto carry out specific pieces of research. What the BTF EvelynAshley Award will allow me to do is to spend time planning, andmost importantly, writing protocols for some of the researchneeded in this very significant area. The protocol, which theaward will fund, is the first step, and I hope to be able to reportthat we have identified funding to actually carry out the researchin the near future.

BTF Research Award winner 2014 update

Management of hyperthyroidism duringpregnancy; data from a large primary carecohortDr Peter Taylor (left), Welsh Clinical Academic Trainee at CardiffUniversity and Dr Bijay Vaidya (right), Consultant in GeneralMedicine, Diabetes and Endocrinology, Royal Devon and ExeterHospital, explain how their research is progressing:

ʻWe were grateful to receive fundsfrom the BTF to acquire access to a large primary caredatabase. This will enable us to better understand and hopefullyenhance the management of hyperthyroidism during pregnancy.In particular we will assess current UK management and identifydeficiencies. Furthermore we will assess for the risk of adverseoutcomes from hyperthyroidism and sub-optimal treatmentincluding risk of miscarriage, congenital abnormalities and theneed for medical intervention during labour such as for acaesarean section. At present we are still in the process ofacquiring the data. However thanks to encouragement from theBTF we are also both currently analysing the Controlled AntenatalThyroid Screening (CATS) study to explore the potential benefitsof treating women with borderline hypothyroidism duringpregnancy. Our analysis indicates that even borderline maternalhypothyroidism during pregnancy is associated with adverseoutcomes. The treatment with levothyroxine of women withborderline hypothyroidism during pregnancy is also associatedwith favourable effects on both birth-weight and gestational age atdelivery and may have some protective impact on reducing therisk of miscarriage.

BTF Evelyn Ashley Award 2015Dr Breidge Boyle, Research Associate in Epidemiology at UlsterUniversity, Institute of Nursing and Health Research is the winnerof this yearʼs award of £1000. She explains here her role and howshe will use the award:

I am a Registered Sick Childrenʼs Nurse with more than thirtyyearsʼ experience. Much of my career was spent working inneonatal surgery where I have looked after babies with structural


BTF Evelyn Ashley Award Winner 2014updateGreta Lyons, Endocrine Research Nurse at the ClinicalResearch Facility, Addenbrookes Hospital, Cambridgeexplains her workand how she usedthe £500 she wasawarded:

I am an EndocrineResearch Nurseworking in a smallmulti-disciplinaryteam with aims ofimprovingstandards of care to patients(adults and children) with rare Resistance to Thyroid HormoneAlpha (RTHa) and Resistance to thyroid hormone Beta(RTHb). Our team is involved both nationally andinternationally in the care of these patients. As part of thisprocess I am required to have an in-depth knowledge of RTH.I visit patients in their homes and within other hospitalenvironments in order to give families and patients flexibility,particularly if they are unable to travel great distances. Thisalso allows equity of access to the service for all patients withRTH. My paediatric and health visiting qualificationscomplement the skills required for this. My ultimate goal is tohave an adaptable, collaborative working relationship withfamilies and their local teams.

Over the last year the endocrine nursesʼ module has been inthe process of being validated and will run at a new institutionin the future. In order to move forward with my knowledge Iattended two different symposia, using part of my award thathas relevance to our patients with RTHa and RTHb. I plan touse the remainder of the money, from the award, to gotowards the paediatric endocrine module when this isestablished.

I attended a fantastic symposium on Attention DeficitHyperactivity Disorder in Liverpool, which was run by theADHD foundation itself. I deliberately targeted this meeting, asit was a very practical session for teachers, support workers,volunteers, and medical professionals. I was able to hear howchildren, their families and adults are affected by this conditionand learn various methods to support them both at home andin the classroom.

The second area that I was keen to focus on was dyspraxia. Iwas able to attend an equally fantastic course run by theDyspraxia Foundation in Manchester. This again was a courseto inform parents, teachers, support staff, volunteers andhealth professionals in the best strategies in supportingfamilies and adults with this condition.

Whilst both courses allowed me to glean a wealth ofinformation and help for my patient leaflet, I was struck by the

absolute determination and commitment of all attendees toprovide the best care they were able to for their families.

Going forward I am now in the process of constructing auseful leaflet for our patients. I will also be developing a leafletto help parents explain what thyroid hormone does to theirchild and how the condition of RTH can affect the individual. Ibelieve this is a way of helping to improve communication,care and support for this patient group.

Due to the publicity of the award I have been invited to speakat British Thyroid Foundation patient support group meetings.I have not only enjoyed the audience/patient participation butit has given me a platform to inform people of our continuedwork here with our patients.

I am extremely grateful for the support from the British ThyroidFoundation and the Evelyn Ashley Smith award to have givenme the opportunity to develop my knowledge in order for meto influence and strengthen the nursing and clinical care forour patients.

BTF Doris Godfrey Research Award 2016The BTF offers an annual award to support a one-year research project into thyroid function or thyroiddisorders. This yearʼs award is up to £20,000 andhas been funded by a legacy from Doris Godfrey, achildrenʼs nurse who suffered from hypothyroidism.The impact of thyroid disease on herself andparticularly her mother motivated her to arrange alegacy of £48,000 for the BTF. (see page 1 BTFNews 88).

The deadline is 31 January 2016.

Full details and an application form are on the BTFwebsite www.btf-thyroid.org/index.php/awards/research-awards

l BTF News 90

Leave a legacyto the BTFHelp to make a realdifference byremembering BTF inyour Will. Any gift, largeor small, makes a realdifference. Legacydonations allow us tocontinue providing life-changing support to peoplewith thyroid disorders.

If you do decide to remember BTF in your Will, your gift will mean that BTF will still behere for people who need our support in years to come. By leaving a legacy you cantake advantage of the reduced rate of inheritance tax of 36% (previously 40%) thatcame into effect from April 2012 for estates leaving a legacy to charity. Call 01423709707 or email [email protected] for an information pack.

Shop online and raise money!

Have you heard about easyfundraising yet? Itʼs the easiest way to help raise moneyfor the BTF! If you already shop online with retailers such as Amazon, M&S, Argos,John Lewis, Comet, Vodafone, eBay, Boden and Play.com then we need you to signup for free to raise money while you shop!So how does it work?

You shop directly with the retailer as you would normally, but if you sign up tohttp://www.easyfundraising.org.uk/causes/btf for free and use the links on theeasyfundraising site to take you to the retailer, then a percentage of whatever youspend comes directly to us at no extra cost to yourself.

How much can you raise?Spend £100 with M&S online or Amazon and you raise £2.50 for us. £100 with WHSmith puts £2.00 in our pocket and so on. There are over 2,000 retailers on their site,and some of the donations can be as much as 15% of your purchase. Save money too!easyfundraising is FREE to use plus youʼll get access to hundreds of exclusivediscounts and voucher codes, so not only will you be helping us, youʼll be savingmoney yourself.

Unity LotteryPlay the Unity Lottery and win up to£25,000 and many more prizes everyweek!

Directly supporting the British ThyroidFoundation, Unity is a lottery with adifference. We receive profits directlyfrom the number of lottery players werecruit, so we need your support. Forevery £1 entry, 50p comes directly tothe BTF as profit.

How it works

For just £1 per week you will beallocated a six digit Unity lotterynumber. You can purchase more thanone entry if you wish. Every Saturday,the lucky winners are selected atrandom and the prize cheques issuedand posted directly to you, so there isno need for you to claim. You must be16 over to enter. Winners have tomatch 3,4,5 or all 6 digits of thewinning number in the correct place inthe sequence.

Buy a teddy and support the BTFBuy one of these adorable teddies for £6.99 +£2.50 postage per order and all the profit will gotowards the BTF. Go to the BTF website to orderonline or by cheque by downloading and sendingwith the order form on the website.

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Local GroupsPlease check the BTF website (www.btf-thyroid.org) for the latest details. Please alsocheck before you attend a meeting that it hasnot had to be cancelled due to poor weatherconditions.

BirminghamNext meeting: Saturday 7 November 201511am to 1pm.Location: Yardley Baptist Church, RowlandsRoad, South Yardley, B26 1AT, off the A45Coventry Road. Free parking available.Programme: Guest Speaker - Dr CarlaMoran, winner of this yearʼs BTF ResearchAward will be speaking about her currentthyroid research.Donation: £2 voluntary donation.Contact: Janet Tel: 0121 628 7435 or email:[email protected]

CambridgeNext meeting: A research themed meetingis planned for Spring 2016. Details will beposted here or contact Mary (details below)Location: Friendsʼ Meeting House, JesusLane, Cambridge CB5 8BA.

Donation: Suggested min donation £3.Contact: Mary on 01223 290263 or email:[email protected]

EdinburghNext meeting: The Edinburgh BTF SupportGroup meets on the last Tuesday of themonth except for school holidays.Check the BTF website for further details.Location: Liberton High School, GilmertonRoad, Edinburgh, EH17 7PT.Contact: Margaret Tel: 0131 664 7223 oremail: [email protected]

Leeds (Wharfedale)Next meeting: See the BTF website formore detailsContact: Caroline on 0113 288 6393 oremail: [email protected]

LondonNext meeting: 28 November 2015 10am to1pm.Location: Crown Court Church, RussellStreet, Covent Garden, London WC2B 5EZhttp://www.crowncourtchurch.org.uk/where-to-find-us/Programme: Support and Social with guestspeaker - Nicki Williams (Happy Hormones) -http://happyhormonesforlife.com

The BTF local groups have had a busyfew months:

The Cambridge group held a veryinformative panel meeting in thesummer of patients and cliniciansincluding Judith Taylor, expertpatient and former Chair of the BTF,Dr Jassim Ali, Cambridge GP andGreta Lyons, Thyroid ResearchNurse at Addenbrookeʼs Hospitaland BTF Evelyn Ashley Nurse Awardwinner 2014 (see page 13).

The Birmingham group held a meeting in September with guest speaker Dr KristienBoelaert, Reader in Endocrinology, Consultant Endocrinologist University ofBirmingham who talked about hyperthyroidism and Gravesʼ Disease. Thepresentation covered a wide range of topics including the different types of

overactive thyroid diseases, their differences andother autoimmune disorders. After the presentationDr Boelaert stayed to answer questions and have achat with members of the audience.

A large and appreciative audience enjoyedlistening to Dr Peter Hammond (left), ConsultantEndocrinologist Harrogate District Hospital whenhe spoke at the Leeds (Wharfedale) group inSeptember on a wide range of thyroid issues,followed by a lively question and answer session.

Donation: Suggested min donation £3.Contact: Denise on 07984 145343 or email:[email protected]

Milton KeynesNext meeting: See BTF website for detailsLocation: The Pavilion, Open University,Milton Keynes, MK7 6AA. Donation: £2 voluntary donation.Contact: Wilma Tel: 01908 330290 or seewww.thyroidmk.co.uk or find us onFacebook.

YeovilNext meeting: See BTF website for detailsContact: Janet on 01935 827794 or email:[email protected]

Are you interested in bringing peopletogether to start a BTF support groupin your area?In particular we would welcome newgroups anywhere in the North East, theNorth West, the South Coast, theBath/Bristol area and Wales. Trainingand support from BTF HQ is available.Email [email protected]

Did youknowPandashavehypothyroidismtoo!

Scientists at the Chinese Academy ofSciences and Aberdeen University haveworked out why pandas are so relaxed andhow they survive on a diet of bambooalone – itʼs their thyroid! The researchersstudied three wild pandas at Foping NatureReserve in Shaanxi province and fivecaptive pandas at the Beijing Zoo. Theyfound that they use a fraction of theamount of energy of other similar sizedanimals and have extremely low levels ofthyroid hormones due to a mutation in agene involved in thyroid hormonesynthesis. They found that their thyroidlevels are in fact similar to those of a blackbear in hibernation. Source:www.dailymail.co.uk/sciencetech/article-3154929

C 123rf.com

BTF LOCAL COORDINATORS Our voluntary local coordinators organise meetings but will also be happy to take calls on thyroid disorders that they have experienced. Please see the key below

BTF TELEPHONE SUPPORT CONTACTSOur telephone contact volunteers are happy to take calls on thyroid disorders that they have experienced. Please see the key below

Birmingham Janet (PC,CS,RAI,PH) 0121 [email protected] Mary (O,RI,U) 01223 [email protected] Margaret (PC) 0131 6647223Leeds (Wharfedale) Caroline (O,U) 01132 886393

Carole (FC,CS,RAI) 01204 853557Dave (PC,CS,RAI) 07939 236313Jackie (PC,CS) 01344 621836Gay (G,TS) 020 8735 9966Karen (U) 01628 529212Wilma (U) 01592 754688Angela (U) 01943 873427Maria (U) 020 87934360

OUR PARTNER ORGANISATIONS

AMEND The Association for Multiple Endocrine Neoplasia DisordersTel: 01892 516076 www.amend.org.ukHypopara UK Helpline: 01342 316315 www.hypopara.org.uk

Thyroid Cancer Support Group Wales Tel: 08450 092737www.thyroidsupportwales.co.uk

Thyroid Cancer Support Group Ireland www.thyroidcancersupport.ieemail [email protected]

Butterfly Thyroid Cancer Trust Tel: 01207 545469 www.butterfly.org.ukCancer52 www.cancer52.org.ukThyroid Eye Disease Charitable Trust Tel: 0844 8008133www.tedct.org.ukBritish Thyroid Association www.british-thyroid-association.orgBritish Association of Endocrine and Thyroid Surgeonswww.baets.org.uk

Ch Thyroid disorders in childrenC Cancer of the thyroidFC Follicular cancer of the thyroidPC Papillary cancer of the thyroidHCN Hürthle Cell NeoplasmCS Thyroid cancer surgery

GR Gravesʼ diseaseRI Radioactive iodine treatment for an

over-active thyroidTED Thyroid eye diseasePH Post-operative hypoparathyroidism

KEY

Ursula (U) 07720 659849Colin (O,RI,U) 07973 861225Olwen (O,RI,U) 01536 513748Jane (GR,RI,TED,G,U) 01737 352536Peter (TED,GR) 01200 429145Helen (O,TS,TED) 01858 410094Penny (Ch) 01225 421348

London Denise (U) 07984 [email protected] Keynes Wilma (U) 01908 330290Yeovil Janet (GR,TS) 01935 [email protected]

RAI Radioactive iodine (I-131) ablationG GoitreTS Thyroid Surgery (non-cancer)U Under-active thyroidITSH Isolated TSH deficiencyO Over-active thyroid

2 to 5pm Monday, Tuesday and Thursday 6 - 8pm weekdays 10am to 2pm weekdaysAfter 6pm weekdays and anytime weekends2 to 8pm Tuesdays and Wednesdays up to 8pm

Members living in the UKBy cheque By standing order Lifetime membership

Members living overseas £25 Europe£35 Outside Europe

Full: £20 per yearConcession: £10 per year

By cheque from a UKbank account

By standing order througha UK Bank

Full: £17 per yearConcession: £8.50 per year

By sterling bank draft drawn ona UK Bank

CURRENT MEMBERSHIP RATES

Concession: unwaged and children under 18. Please help us by ensuring that you pay the correct subscription.

£200 by cheque

The British Thyroid Foundation, 2nd floor, 3 Devonshire Place, Harrogate, North Yorkshire HG1 4AA Tel: 01423 709707 or 01423 709448 website: www.btf-thyroid.org Office enquiry line open: Mon - Thurs: 11am-2pm.

BritishThyroidFoundation @britishthyroid

PAGE 16 l BTF News 90

PLEASE NOTE: BOTH LOCAL AND TELEPHONE COORDINATORS ARE VOLUNTEERS AND ALTHOUGH THEY WILL MAKEEVERY EFFORT TO BE AVAILABLE AT THE TIMES PUBLISHED THIS CANNOT ALWAYS BE GUARANTEED.

Order your BTF Christmas cards We have a great collection of contemporary and

traditional Christmas cards that we are selling to raisefunds for the BTF. We would be very grateful for yoursupport. You can order your Christmas cards cards

now by filling in the flyer enclosed with this newsletteror by visiting the BTF website: www.btf-thyroid.org.

issue 90 btfnews 2015 - british thyroid foundation · the newsletter of the british thyroid...

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