BBTTFF NNeewwssThe British Thyroid Foundation l 2nd Floor l 3 Devonshire Place l Harrogate l North Yorkshire l HG1 4AA

www.btf-thyroid.org Issue no 86 July 2014

IN THIS ISSUE....News from BTF HQ .............page 2

Out and about ......................page 3

BTF projects update...........page 5

Fundraising anddonations..............................page 6

My story................................ .page 8

Childrenʼs corner.................page 8

Research in the media........page 9

Medicines update............ ....page 9

Article: Infertility.............. ....page 10

Meet the Presidentof the BTA......................... ....page 10

Research news.................... page 11

Letters and comments .......page 13Local Groups .......................page 14

BTF News 86 l PAGE 1

While the children were entertained byBTF staff and volunteers (led by ourwonderful Notts/Derby local coordinatorBridget OʼConnor) the parents learnedabout thyroid disease, how it can affecttheir children and how to deal with a longterm health condition.

Several endocrine specialists from LeedsGeneral Infirmary (Dr Ramzi Ajjan, DrSabah Alvi, Dr Talat Mushtaq, SisterAmanda Whitehead and Sister JennyWalker) made presentations, ledworkshops and were available to answerquestions throughout the day. There werevery helpful and positive talks byteenagers Katy Lestner and HannahSavage on how they have coped withtheir thyroid condition and not let it ruletheir lives. Also a parentʼs perspective waspresented and discussed by mumsJoanne Lestner and Georgina Hudson-Croker.

Three medical students from LeedsUniversity volunteered to help on the day.Student Brittany Staniforth explained ʻInthe morning session we spent time withthe children, helping to run activities.Some of the children had questions abouttheir thyroid or just about their hospitalvisits. Bridget had brought with her a bookshe had written about what happens withthe blood tests called ʻHishamʼsEnvelopeʼ. This was great for the youngerchildren and for them to see that it wasnʼtjust them that had to have blood tests andtrips to the doctor. There were a few books

with diagrams that were better for some ofthe older ones to explain a little bit moreabout their thyroid. There were alsocrosswords based on endocrinology,which gave the children an opportunity toask questions about words they didnʼtunderstand.

Emma Boon, who came with her eightyear old daughter Chloe said ʻWe had alovely day andChloe had thechance torealise thatshe wasnʼt theonly one with adodgy thyroid.That was themain reasonfor us toattend, tomake heraware ofothers just likeher. She saidon the train onthe way homeʻThis has been the best day ever!ʼ andwas so pleased when she got ready forbed because she realised that she alreadyhad butterfly lights and a lampshade, andhas now added to that with the things shemade at the meeting.ʻ

Another parent told us that the aspect ofthe day she most enjoyed was the chanceto meet other parents. ʻI feel that sevenyears of worry about my child were liftedfrom my shoulders as everyone seemed tohave very similar experiences andreactions.ʼ

Julia Priestley, BTFʼs DevelopmentOfficer who organised the conference saidʻWe were delighted that so many familieswere able to come to the meeting and itwas truly wonderful to have helped giveparents the opportunity to learn so muchfrom the LGI team and each other.ʼ

BTF HOSTS FIRST EVER CONFERENCE FORCHILDREN WITH THYROID DISORDERSWhen the day came for the BTFʼs first Childrenʼs Conference after months of planning itwas a not-to-be-missed opportunity for over 25 families. Parents made the journey fromall over the UK, and two families came especially from Ireland and France.

Parent Georgina Hudson-Croker with son Oliver

BTF volunteer Helen with the budding medics!

Parentʼs feedback session

Chloe Boon

PAGE 2 l BTF News 86

NEWS FROM BTF HQWelcome to…Dr Mark Strachan, a current BTFTrustee who has become BTF Treasurer.Mark has been a Trustee with the BTFsince 2009. He is a Consultant inDiabetes and Endocrinology, WesternGeneral Hospital in Edinburgh and aReader in Medicine at the University ofEdinburgh.

Our new trustee Bridget OʼConnor.Bridget has been the BTF Notts/Derbylocal coordinator for seven years afterbeing diagnosed with Gravesʼ disease.She is also a telephone helpline contactfor the BTF and Hypopara UK andactively fundraises for both charities. Sheworks closely with local endocrinologistsregarding awareness meetings and willbe able to provide a valuable viewpointfrom both a patientʼs perspective and thecommunity.

BTF News editorial boardWorking with BTF HQ this group ofmedics will be advising and contributingto BTF News, providing input for themedical and research sections of thenewsletter. They are:

Dr Petros Perros who is a ConsultantEndocrinologist at the Royal VictoriaInfirmary, Newcastle, an Honorary SeniorLecturer, Institute of Genetic Medicine,Newcastle University, a previous trusteeof BTF, medical advisor and medicaleditor of the BTF newsletter, member of

TEAMeD, President of the EuropeanGroup on Gravesʼ Orbitopathy andChairman of the British ThyroidAssociation Thyroid Cancer GuidelinesGroup.)

Mr Dan Ezra who is a ConsultantOphthalmologist at Moorfields EyeHospital and lecturer at the UCL Instituteof Ophthalmology, specialising inoculoplastics and orbital disease. He isalso the Clincial Trials Lead and TrainingDirector for adnexal surgery.

Dr Peter Taylor who is a ClinicalAcademic Trainee in Diabetes andEndocrinology currently undertaking hisPhD at Cardiff University having alsotrained in epidemiology (the science ofthe patterns, causes, and effects ofhealth and disease).

Professor Simon Pearce, who isProfessor of Endocrinology, NewcastleUniversity. His studies range fromlaboratory based DNA analysis to clinicaltrials of new therapies.

Dr Mark Vanderpump, ConsultantPhysician and Honorary Senior Lecturerin Diabetes and Endocrinology at theRoyal Free Hampstead NHS Trust inLondon. He has published on variousaspects of thyroid disease and served onthe Executive Committee of the BritishThyroid Association (BTA) between 2002and 2008. He was elected President ofthe BTA in April 2014. (see page 10).

Further members of the Editorial Boardare:

Liz Clegg who has worked at BTF HQ forthe last two years coordinating the BTFnewsletter, fundraising and BTF researchaward. She previously worked for abusiness publishers in Manchester and inthe corporate communicationsdepartment of Experian.

Nikki Brady who has volunteered forBTF HQ since 2010, providing on-goingsupport for the production of thenewsletter. Nikki trained as a journalistbefore working as a reporter on aregional newspaper. She is now amember of the communications team atYorkshire Cancer Research, managingthe charityʼs PR activity.

Farewell to…

David Fortune who has resigned as aBTF volunteer and BTF trustee due toincreasing commitments. David has beenan invaluable help, answering medical

queries and project managing theimplementation of a quality managementsystem at BTF HQ.

Judith Taylor who has stepped down aseditor of the BTF News, a voluntaryposition she held since 2009. Judith, whohas a specific interest in thyroid cancer,wrote many articles for BTF News,including updates about what washappening in the scientific communityworldwide.

Lorraine Williams who has steppeddown as Coordinator of the BTF LondonGroup due to other commitments.Lorraine created a very active and thrivinggroup in London. The role has now beentaken on by Denise Sims (see page 15).

Our thanks to David, Judith and Lorrainefor their support over the years.

Thyroid Awareness Week

25 – 31 May 2014 was the sixthInternational Thyroid Awareness Weekand the BTF partnered with itsinternational counterparts to raiseawareness of thyroid disorders. This yearthe focus was on ʻFive reasons to beaware of thyroid diseaseʼ: thyroid cancer,auto-immune disease, infertility (see page10), depression/anxiety and iodinedeficiency (see page 5). The BTF issueda press release on infertility to coincidewith this week and to highlight thisimportant issue.

A special website has been set up withfurther information on these five issues:go to www.thyroidweek.com

Helping deaf people accesshealth servicesBTF has worked with Sign Health, thedeaf peopleʼs charity to prepare the text tobe used in the British Sign Languagevideo clips on hyper- and hypothyroidism.Sign Health launched their Sick Of Itreport in April to highlight the difficultiesdeaf people face in the health service. Goto www.sick-of-it.com for moreinformation.

Dr Mark Stachan

Bridget OʼConnor

BTF News 86 l PAGE 3

Raising awareness abouthypothyroidism at GP surgeries

A specially designed poster and leafletraising awareness of hypothyroidism hasbeen placed in 750 GP surgeries inEngland. The company who has carriedout the placements, IDS UK, is aspecialist in providing healthcarecommunication solutions across healthcare environments and has provided thisservice free of charge to the BTF.

Carrots NightWalks

There is still time to sign up to take part inone of the national night walks organisedby Fight for Sight. This yearʼs CarrotsNightwalks will take place in September.You can join up to walk in one of five UKcities: London (19 September),Birmingham, Bristol (26 September)and Glasgow (27 September).

If you are interested in raising money forresearch in to thyroid eye disease andwould like to take part in this fantasticevent please email j.l.hickey@btf-thyroid.org stating the city you would liketo walk in.

OUT AND ABOUT

Thyroid eye disease in the21st centuryNewcastle upon Tyne – a centre ofexcellence for thyroid eye disease (TED) –hosted a two-day event in May thatbrought together leading European andBritish experts on TED.

The event provided a unique opportunityfor patients with TED, their families andcarers, and members of the public to meetwith the experts to find out about the latestadvances and together be involved indiscussions about the priorities for futureresearch into TED. Six patientrepresentatives with TED were involved,including Janis Hickey and Peter Foleyfrom the BTF, Gillian Barron and SueDevine from TEDct, Sian Gray, a GP, andPeter Howe, who had been treated inNewcastle for TED. Two ThyroidFederation International (TFI) membersmade the journey to be involved in theevent: Beate Bartès, Founder/Director ofVivre sans Thyroïde, France, and DrNancy Hord Patterson, who developedTED in 1987 and is founder of TheGravesʼ Disease Foundation in the USA.Talks included discussions about theunmet needs of patients with thyroid eyedisease in which the patientrepresentatives talked about the strugglesthey had faced and highlighted theimprovements needed.

This was followed by a lively discussioninvolving medical professionals andpatients in the audience. Medicalprofessionals acknowledged patientsʼcontributions to the success of the eventand expressed concern over manyaspects of information shared by patients.

The event was an opportunity for TEAMeD(Thyroid Eye Disease AmsterdamImplementation Group UK), of which BTFand TEDct are members, to distribute itsExecutive Summary Report, highlightingthe work it has undertaken on TED since2010 (see http://www.btf-thyroid.org/index.php/campaigns/teamed).

Continued on page 4

Eugogo patient reps Peter Foley, Gillian Barron, SianGray, Sue Devine

Hypothyroidism poster

Email addressesWe would really like to be ableto keep in touch with memberselectronically. We do havesome membersʼ emailaddresses but if you joinedbefore 2013 please send yourname, email address,postcode and house numberto info@btf-thyroid.org anduse the subject ʻMemberʼsemail addressʼ.

What would you like to seein your newsletter?Let us know what you would like to readabout in BTF News. What do you find themost interesting and what would you liketo see more (or less!) of? Membersʼ viewsare important to us and we welcomefeedback. Email editorialboard@btf-thyroid.org with any suggestions orcomments.

Leave a legacy to the BTF

Help to make a real difference byremembering BTF in your Will. Any gift,large or small, makes a real difference.Legacy donations allow us to continueproviding life-changing support to peoplewith thyroid disorders. If you do decide toremember BTF in your Will, your gift willmean that BTF will still be here for peoplewho need our support in years to come.By leaving a legacy you can takeadvantage of the reduced rate ofinheritance tax of 36% (previously 40%)that came into effect from April 2012 forestates leaving a legacy to charity. Call01423 709707 or email legacies@btf-thyroid.org for an information pack.

PAGE 4 l BTF News 86

There were a number of lectures onthyroid related issues. Highlights includeda presentation by Peter Taylor (Universityof Cardiff) on the link between thyroidhormones and IQ in children (see‘Research in the media’ page 9). Dr Taylorwas also highly commended in the SfE’sYoung Endocrinologists Clinical OralCommunications Awards for hispresentation.

The BTF supported a session on ‘Theemerging clinical importance of iodine.’This session included a presentation byProfessor Margaret Rayman (Universityof Surrey) on iodine nutrition andneurodevelopment and how inadequateiodine intake by pregnant womenadversely affects cognitive outcomes intheir children. She explained how iodine isa key component of thyroid hormones,which are crucial for brain developmentparticularly in early years. The lecture wasbased on the results of the study, byProfessor Rayman and Dr Bath (Universityof Surrey) and colleagues at the Universityof Bristol, which was published in TheLancet in May 2013. The study measurediodine status in pregnant women from theAvon Longitudinal Study of Parents andChildren (ALSPAC) and found that lowiodine status was linked to poorer IQ andreading ability in the child up to nineyears.

British Endocrine Societiesconference

The BTF attended the annual BritishEndocrine Societies (BES) conferencefrom 24-27 March which was this yearhosted in Liverpool.

This annual conference is the largest UKmeeting on hormone research. It includessome of the best of British andinternational science and research, clinicalinvestigation and clinical practice inendocrinology.

Medical and health professionals,clinicians and researchers converged onthe spectacular Liverpool waterfront ACCconference centre for four days ofpresentations, debates, and workshops onthe latest research and findings in the fieldof endocrinology. There was also an areafor patient support group stands where theBTF was invited to exhibit. Julia Priestleyfrom BTF HQ attended a meeting forpatient support groups hosted by theSociety for Endocrinology (SfE). She said‘It was a valuable opportunity for the BTFto share ideas and best practice with otherpatient support groups throughout the UKand a chance to let the SfE know howbest they can support the work the BTFdoes’.

In a session chaired by BTF TrusteeProfessor Geoffrey E Rose, JanisHickey, Dr Petros Perros and ProfessorColin Dayan, all members of TEAMeD,gave separate presentations on thebenefits and disadvantages of local/tertiary centres.

Day two comprised a seminar ʻOf Eyes,Mice and Diceʼ sponsored by the Societyfor Endocrinology in which presentationstook place from leading UK and Europeanresearchers on recent advances in findingout what causes the development of TED;how it is assessed and the latesttreatments, providing an insight into thefascinating studies that are taking place.

On both days break-out sessions tookplace. In 2012 priorities for TED researchhad been set in the Sight Loss and VisionPriority Setting Partnership, in which JanisHickey, Peter Foley and Mr Dan Ezra,Consultant Ophthalmic and OculoplasticSurgeon at Moorfields Eye Hospital andmember of TEAMeD had participated (seeBTF News 82). These priorities werediscussed in a breakout session on dayone, the remit being to translate thepriorities into specific research questions.On day two the break-out sessionsinvolved translating the researchquestions formulated on the previous dayinto study designs.

The meeting was a joint venture betweenthe European Group on GravesʼOrbitopathy (EUGOGO) and TEAMeD UK.Feedback about the event has beenpositive with participants saying howhelpful they had found the sharing ofinformation to be. One of the outcomeswas the formulation of six major potentialstudy proposals for basic and clinicalresearch in this field, some of which willhopefully be taken further. There was agreat sense of teamwork throughout themeeting and a desire for patients andprofessionals to build on the Newcastleexperience and continue to work together.

In his closing remarks, Dr Perros thankedin particular the patient representatives forattending and said their involvement hadgreatly enhanced the quality ofdiscussions. Janis Hickey, a member ofthe event organising committee, said, ʻWehave Dr Perros to thank for his vision thatpatients with TED can make a positivecontribution to such events. Workingtogether with medical professionals andresearchers to take matters forward andbring about improvements is a big step inthe right direction. We are very grateful toDr Perros for including usʼ.

Continued from page 3

Dr Peter Taylor

BTF Iodine deficiency poster

BES 2014

BTF News 86 l PAGE 5

Iodine project update

The UK Iodine Group (formerly UK IodineStatus Strategy Group), of which BTF is amember, is continuing its work to raiseawareness of the importance of iodine forthose with a normal functioning thyroidgland. For people with a properlyfunctioning thyroid, iodine is essential as itis required for the production of thyroxine.It is particularly important in women whoare pregnant as it is needed to ensure thedevelopment of a baby’s brain duringpregnancy and early life. People who aretaking replacement thyroxine(levothyroxine) however do not have afunctioning thyroid to absorb iodine andtherefore iodine is not required. Adding aniodine supplement in people being treatedfor hyperthyroidism is unnecessary andcan worsen the condition.

The UK Iodine Group has produced amission statement which sets out ourvision:

To ensure optimal iodine nutrition in allsectors of the UK population in order toavoid the adverse effects of iodinedeficiency;

and our mission:

To promote awareness of the importanceof iodine in the diet and to make evidence-based recommendations to eradicateiodine deficiency in the UK.

The Standing Advisory Committee onNutrition (SACN), an advisory committeeto the Chief Medical Officer of Englandand the Department of Health (DoH) hasrecently issued a paper on iodine status inthe UK:http://www.sacn.gov.uk/reports_position_statements/position_statements/sacn_position_statement_on_iodine_and_health_-_february_2014.html)

Hypothyroidism care strategyproject updateJulia Priestley writes: We are delightedthat Professor Scott Wilkes, Professor ofGeneral Practice and Primary Care at theUniversity of Sunderland and ProfessorSimon Pearce, ConsultantEndocrinologist and Clinical Lecturer inEndocrinology at Newcastle Universityhave joined our project team. It isinvaluable to have their professional inputand guidance to help us communicate thekey messages about hypothyroidism thatwe are working to promote.

Although The UK Iodine Group hasconcerns regarding some aspects of thisdocument we were pleased to note thatDoH has issued a research call on iodine:http://www.nihr.ac.uk/proposals/Lists/NIHR%20Calls%20for%20Proposals/DispForm.aspx?ID=332

Professor Margaret Rayman and DrSarah Bath, members of the UK IodineGroup, are preparing an application forsubmission.

The iodine status of Europe (including UK)was the subject of a leader published inThe European Thyroid Journal by JohnLazarus: Lazarus JH. Iodine status inEurope 2014. Eur Thy J 2014.

Further publicity regarding iodinedeficiency in UK was presented at therecent BES meeting in Liverpool (seepage 4).

Professor Rayman talked about theimportance of adequate iodine statusduring early pregnancy and highlightedthe risk that even mild-to-moderate iodinedeficiency can pose to the developinginfant. She stressed the urgent need forthis issue to be addressed through publichealth initiatives.

Mr Daniel Ezra (Moorfields Eye Hospital)gave a lecture on thyroid eye disease(TED). The varied presentation of patientswith TED was emphasised with specialattention drawn to the different clinicalfeatures of the condition and how they canbe practically assessed. Excerpts from the‘patient panel’ at a recent national TEDday held in London last year were alsopresented to stress how deeply thiscondition affects patients and why it isimportant to ensure that the condition ispicked up early and referred onappropriately.

Professor Krishna Chatterjee (Universityof Cambridge) gave the annual BritishThyroid Association Pitt-Rivers Lecture ongenetic insights into disorders of thyroidhormone action. He explained that it isnow recognised that the action of thyroidhormone can be regulated at severallevels, including uptake of thyroidhormone into cells, its conversion (T4 toT3) within cells and its action in the cellnucleus. Together with colleagues (DrCarla Moran, Dr Nadia Schoenmakers,

Dr Mark Gurnell) at the Institute ofMetabolic Science in Cambridge, heoutlined how they study patients with raregenetic abnormalities affecting the actionof thyroid hormone at any of these levels.Professor Chatterjee explained how it ishoped that knowledge gained fromstudying these rare disorders will betterinform the management of commonthyroid conditions such as hormonereplacement in hypothyroidism or lead tothe development of new agents (e.g.cholesterol-lowering drugs) which targetthyroid-regulated processes.

The ACC Liverpool

The River Mersey

ProfessorScottWilkes

ProfessorSimonPearce

BTF PROJECTSUPDATE

PAGE 6 l BTF News 86

Sam Carpentera thyroid cancersurvivor who hasbeen in remissionfor two years andwanted to dosomething tocelebrate this andto raise money atthe same time.She managed toraise nearly £500!

Selim Auckburally who has had anunder-active thyroid since the age of tenand wanted to run for a charity close tohim and his mumʼs heart. His run wentwell despite pulling both calf muscles! Hehas raised an incredible £1000 fromsponsorship which includes a £250donation from the firm he works for, PriceWaterhouse Coopers.

Ben Lam Hangran in memory ofhis mum Kim whopassed away fromthyroid cancer lastyear. He hasraised nearly£800 andmanaged to run ina tiger onesie!

Cathryn Holmanran the BrightonHalf Marathonand raised nearly £900 (including £182from her place of work, Towers Watsonthrough match funding). She decided torun for the BTF because she has receivedpersonal support since being diagnosedwithHypothyroidismand HashimotosDisease in 2011.Cathryn said afterthe race: ʻI donʼthave to put my lifeon hold becauseof this condition - Ihave been able towork with it and Ican accomplishthe goals I setmyself.ʼ

Adele Hayes, age 11,raised an amazing£120 by rafflingcrochet gifts she handmade herself andselling them to herclass. Adele has beenknitting andcrocheting since shewas a young girl and

If you are involved in a fundraising eventin aid of BTF please get in touch so thatwe can send you sponsorship forms,posters and other publicity materials. Wecan also supply BTF t-shirts or runningvests, but please allow enough time for usto get the right size for you.

If you are employed, please check withyour employer to find out whether itoperates a match-funding scheme(matching all or part of what you raise).

Please send us some information aboutyour event and include photograph(s)along with your permission to publishthem in the BTF News (subject to space)and on the BTF website.

Lesley Antrobus took part in the Balfron10K run again this year despite recentback surgery and raised a fantastic £335.Her daughter Becky was born withcongenital hyperthyroidism so Lesley iskeen to support the BTFʼs work.

Jason Cook and a host of his comedypals staged the second Hebburn CharityGala. The event, at Hebburn RAOB Clubon Friday, April 25, raised £1250 for theBTF. Jason, who wrote the TV comedysitcom Hebburn, performed alongsidefellow comic Steffen Peddie and SouthShields singer Rosie Winter, as well assome surprise guests and familiar facesfrom the BBC2 sitcom and it was a roaringsuccess.

We had three runners raising funds for usin the 2014 Virgin Money LondonMarathon:

decided to fundraise for the BTF as hersister has congenital hypothyroidism.

JenniferSpencer-Charlescompleted an IronMan Triathlonover six weeksand raised £400!She wasdiagnosed withHashimotoʼs twoyears ago. Shesaid ʻManypeople, likemyself have spentmany yearsdealing with the symptoms that getprogressively worse, when all it takes is asimple blood test.ʼ She swam 2.4 miles,ran 26.2 miles and cycled 112 miles from12 April to 25 May (World Thyroid Day).

Somer Turnbull took part in the 5kGarioch Run in March 2014 and raisedalmost £300 with her friend Erin Gauld. In2012 Somer was diagnosed with anunder-active thyroid so being able torelate to the BTF has made her want tohelp.

Heather Brookes walked the WestHighland Way in April and raised anamazing £900! For the past five yearsHeather has had Gravesʼ disease andsuffered from an over-active thyroid.Heather walked with her family and thewalk was a whopping 96 miles in total!

Bella Smith and her brother Edward tookpart in the BUPA Great Manchester Run inMay and raised over £100. Their mumwas diagnosed with thyroid cancer in thesummer and the whole family is dedicatedto raising money and awareness of thedisease.

Kayley and Lucia Crankshaw took partin a ʻSuperheroʼ Run in May dressed asBatman and Robin to raise awareness ofthe BTF as they both have people close tothem affected by thyroid issues. Theyraised nearly £300 between them.

Lauren Brooks embarked on a 50 milewalk in June and raised over £200. Laurensuffers from a thyroid disorder and reallywanted to raise money to support the BTF.

Sara Mason raised £120 instead of giftsfor Nathanlee and Elizabethʼs christeningas a few members of her family havehypothyroidism including her son Jamieand nephew Max.

Michelle Pegg ran in the Edinburgh HalfMarathon in May and raised £75. She wassupporting the BTF as she has many

Lesley Antrobus with her daughter Becky

Hebburn Charity Gala cast

Sam Carpenter

Adele Hayes

Ben Lam Hang in his onesieand BTF vest!

Jennifer Spencer-Charles

Cathryn Holman

FundraisingAnd Donations

BTF News 86 l PAGE 7

barely run up the stairs! So if you could evensponsor me 50p I would be very gratefulʼ.www.justgiving.com/Kevin-Savage1Syz (Simon) Goss will be taking part inʻThe Spartan Race Trifectaʼ in September.His daughter Tiffani was born without athyroid gland. www.justgiving.com/SyzGossEmily Heseltine will be taking part in theBristol Half Marathon in September. She hassuffered from an over-active thyroid for fouryears and it has been a long and painfulprocess to correct it. www.justgiving.com/Emily-Heseltine2014Steve Robb, a veteran fundraiser for BTF, isnow undertaking an incredible threemarathons and a half marathon for us in2014. His daughter Eilidh was born withcongenital hypothyroidism and Steve isdetermined to raise as much funds as hecan for the BTF. He ran the Alloa HalfMarathon in March (with his friend DavidWilkie), the Manchester Marathon in Apriland the Strathearn Marathon in June. Heplans to also run the Highland PerthshireMarathon in September 2014.www.justgiving.com/steverobbTheo Hiden who suffers fromhypothyroidism and his friend Maisie Woodare doing the Mini Great North Run inSeptember in aid of BTF. They are just threeyears old and will be running 1.5km!www.justgiving.com/TheoHidenNaomi Leacock and Jo McGurk are goingto take part in a ʻTotal Warriorʼ Event inAugust 2014. One of their colleagues atwork has been battling thyroid cancer forsome years now and is still undergoingtreatment for this. They said ʻWe arefundraising for the BTF because we hopethat we can make a difference and be ableto give others the opportunity that we haveto live their lives as we doʼ.www.justgiving.com/Naomi-Leacock09Gail Leith is celebrating her 50th birthday inAugust and has organised a party. She hasasked her guests to donate to the BTF asshe was diagnosed with thyroid cancer 10years ago.Catherine Preedy is taking part in theCardiff Half Marathon in October after beingdiagnosed with hypothyroidism three yearsago.www.justgiving.com/catherinepreedy

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.

The Spectrum Club Dudley members helda raffle and raised £300.

IRRV East Midlands AssociationPresidentʼs charity for 2013/14 held avariety of fundraising events and raised£1,408.68.

Carole Ingham a former BTF localcoordinator, raised £400 for the BTF inmemory of her husband Ian.

Brenda Conroy raised £255 in memory ofher husband David Conroy

David Sharkey donated $1000 after a friendof his, who has recently been diagnosedwith a thyroid condition, moved to the UK.The amount was match-funded by Bank ofAmerica who he works for.

people close to her that are affected bythyroid disorders.

Sarah Pidsley completed a 20 mile bikeride in June for the BTF around EllesmerePort and raised over £200.

Two runners, Dave McGrath and LawrencePriddle ran the Southend Half Marathon inJune. Dave raised nearly £500 and ranbecause his fiancée, big sister and mum allsuffer from thyroid problems and have foundthe BTF to be a great source of support.Lawrence was running as his girlfriendMegan suffers from Gravesʼ disease. Heraised a fantastic £403.

Joanne Lloyd took on the National ThreePeaks Challenge for the BTF (as we went topress) and is aiming to raise £500.

We have six runners taking part in theannual British 10k Run in London on 14 July.Five are members of the BTF London LocalGroup: Denise Sims (the new BTF localcoordinator for London), Cathryn Holman,Caroline Crowley, Julie Lofting and KarenGeorge. www.justgiving.com/LondonTeddyRunnersThe sixth runner is Katja Gomer who hadsuch a fantastic time at last yearʼs run shehas decided to take part again.

We have three cyclists taking part so far inthe Great Manchester Cycle - a 26 or 52mile race around the centre of Manchester -as we go to press. They are Wendy Driver,Marcela Vickerstaff and Ian Wolfendale.

Check the BTF website to see how they allgot on!

A big thank you to all ourfundraisers!

Future fundraisersCarly Mathews and Alix Hampton aretaking part in a ʻMoonlight Colourthonʼ inJuly. www.justgiving.com/Carly-MathewsSandra Banfield is taking part in a 13 milewalk/run/cycle event with her local runninggroup ʻthe Dolly Mixturesʼ in August. Shesuffers from Gravesʼ disease, and she hashad a frightening and painful journey back togood health.

Kevin Savage is running the Great NorthRun in September. His nephew Jamiesuffers from a thyroid condition. He said ʻforthose who know me well, you will know I can

Nicola at BTF HQ with trustees in 2010

This year Poulton le Fylde Golf Club hasagain nominated the BTF as itsCaptainʼs Charity for the 2014-2015season. The newly appointed Captain,Jeremy Stephenson (Jem), chose thecharity in memory of Nicola Worrall whosadly passed away in December 2013aged just 32.

Nicola had been a great supporter of theBTF following the sad death of hermother, Lynda Lawton, when she wasyoung from a thyroid related illness. Onlylate last year Nicola took part in theBlackpool Autumn Breaker 10k run toraise funds for the BTF.

Nicola was alsoinstrumental inhelping raise over£4,700 whenPoulton le FyldeGolf Club lastnominated the BTFin the 2009-2010season bycompleting aManchester to

Blackpool bike ride as well as otherfundraising activities at the golf club.

This year Jem has numerous activitiesplanned including auctions and raffles,regular race nights, a charity cricketmatch, a charity golf day (where he willlook to create some kind of speed golfrecord) and other events during histenure as Captain.

Donations in memory of Nicola aregratefully accepted at BTF and atwww.justgiving.com/btf/donate

Nicola with her son Luke

PAGE 8 l BTF News 86

If you are a young person with a thyroiddisorder we would love to hear from youabout your experiences of managing yourcondition and coping with any problemsyou may have had along the way. Weknow how invaluable it can be to readabout other peopleʼs experiences soplease let us know how you feel aboutyour thyroid, by sending in poems, storiesor artwork – however you like to expressyourself!

If you would like information or have aquestion you can write in to BTF, SecondFloor, 3 Devonshire Place, Harrogate HG14AA or email children@btf-thyroid.org. Wewill ask our childrenʼs medical adviser, DrTim, to reply and may publish the letter inthe Childrenʼs Corner. If you are under 18,donʼt forget to ask your parents to state inyour letter or email that we can publishwhat you send us.

paramedics were called to school, as Iwent to the nurse and had a pulse of over160! Of course, I went back on thetablets.

In February of this year I had theradioiodine treatment. I can see thedifference already, my neck looks so slimand Iʼm starting to see the definition in theshape of my neck. Itʼs made me feel somuch better as I now donʼt have muchdiscomfort when wearing shirts with topbuttons, as previously they used to bereally tight on my neck where it bulged outso much! I find out this summer howsuccessful the treatment actually was andif Iʼm going to need any further treatment.ʼ

Keisha added some reassuring words forothers in a similar situation: ʻBelieve me, itall gets so much better, although you maynot feel particularly great about it now,youʼll be fine in the end!ʼ

You can read other inspiring stories onthe BTF website www.btf-thyroid.orgunder ʻYour Thyroid/Share Your Storyʼ.

ʻI wasdiagnosedwith an over-active thyroidat the age ofseven. I amonly 17 nowso I havesuffered withthis conditionfor the past 10years of mylife. In some

ways it has been quite lonely, which iswhy I was so happy to see the ʻMy Storyʼpage on the BTF website!

Thyroid issues in children are obviouslyvery rare, which is why it had never beenpicked up on before. As a child I hadAttention Deficit Hyperactivity Disorder(ADHD), so I was under a specialist forthis, but my nan noticed that my eyesalways bulged and I had a large goitre.She immediately pointed this out to mymum, who then spoke to my ADHD doctorabout this. Because of my age, my doctorsaid she bet her yearʼs wages I wouldhave the blood test and it would comeback negative because itʼs just so rare inchildren. I had the blood test, and to hersurprise, it came back positive.

As a child, I didnʼt really understand whatthis meant. No one had ever spoken tome about thyroid issues before, I didnʼteven know what a thyroid was so it didnʼtreally affect me that much. The only thingthat did bother me was the blood testsevery 3-6 months and the constantchanges in my dosages for mymedication. I was told to go oncarbimazole but my dosage changednumerous times.

I hated having to take the tablets. To me,that was the worst thing about having athyroid issue. I tried so many differentways of taking my tablets, but being a kidit was the one thing I didnʼt look forwardto. I just wanted to be a kid that didnʼthave to worry about taking tablets orhaving blood tests, or missing out onlessons at school.

As I got older I just used to forget to takethe tablets, and a couple of years ago Istopped taking them for about six months.I did myself no favours as I was havingheart palpitations and one day the

The main types of thyroidproblems in children:An underactive thyroid gland in babies(congenital hypothyroidism)

Sometimes people are born without athyroid gland or with a gland that is toosmall. When this happens they donʼt getenough thyroid hormone because theirthyroid gland ʻfactoryʼ is not properly built.These babies are usually picked up by ablood spot test a few days after birth andare treated with thyroid hormonereplacement (levothyroxine) which is thesame as the natural thyroid hormone.Thyroid replacement hormone works verywell so an underactive thyroid shouldnʼtstop children leading a normal life.

An underactive thyroid gland due toantibodies (Hashimotoʼs disease)

In this condition antibodies attack thethyroid gland by mistake and damage it.Sometimes it is obvious that something iswrong because the thyroid gets big butsometimes it happens without the personknowing anything about it until theybecome underactive. In this case theymay have problems such as tiredness,feeling cold and slow growth. Thankfullythis problem is quite easy to treat as wellby putting back the thyroid hormone –either as tablets or in liquid form.

An overactive thyroid (Gravesʼdisease)

Antibodies can alsomake the thyroid gooveractive because theyswitch the gland on and tell itto make extra thyroid hormonecontinuously instead of justwhen it is needed. This can makepeople feel poorly and stop them fromconcentrating and sleeping properly. Anoveractive gland can be more difficult totreat than an underactive one. Somepeople will be given an anti-thyroidmedicine to take by itself (usuallycarbimazole) which reduces the amount ofthyroid hormone made by the thyroidgland. The amount can then be adjusteduntil the thyroid hormone levels arenormal. Other people are givena bigger dose which stopsthe gland from workingcompletely. The bodyʼsneed for thyroid hormonecan then be met bylevothyroxine to replace themissing hormone. This type oftreatment is called ʻblock andreplaceʼ.

Children’sCorner

MY STORYKeisha Hunn explains how she struggled with the diagnosis and treatment of her over-active thyroid as a young child but after successful treatment is feeling confident aboutlife again.

Keisha Hunn

BTF News 86 l PAGE 9

The reports stated that scientists havefound a genetic variant that may increasethe risk of having a lower IQ.

Dr Taylor and his colleagues haveidentified that children under seven with acommon gene variant together with lowlevels of thyroid hormone were four timesmore likely to have an IQ below 85. Theresearchers took a large population (3000)of normal children about whom they haddetailed information on their early life andhome environment and looked at whetherchildren with lower thyroid hormone levelsand this genetic variant were more likely tohave a lower IQ. The study found that in atypical class of 30 children, four will havethe variant and one of these will also havelower thyroid hormone levels and have a

Can you find the hidden words in this word search puzzle?

G O T I B I N O D O C T O RO U R T H Y R O I D A E B DG A U T S F M O F L R S O EN C S I S S Z F H I B U V AL E V O T H Y R O X I N E MT N P D R M O V R L M D R EA Q E I E Q N M M I A E A AL H F N A T L R O I Z R C PL P E E T C D Q N H O A T GK M J N M I T A E G L C I UT S H V E S E E I G E T V PT T L F N A S A I S S I E TU E B U T T E R F L Y V J SI B L O O D T E S T S E G U

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carbimazolebutterflyoveractiveunderactiveblood testsdoctoriodine

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higher chance of a lower IQ. The otherthree children with the variant, but thyroidhormone levels not so low will not beaffected. This highlights that both thegenetic variant and lower thyroid hormonelevels need to be present to have theincreased risk of a lower IQ.

Dr Taylor said ʻIf further studies confirm ourfindings, then potentially there may be abenefit in carrying out a genetic test for thisgene variant along with the standardneonatal thyroid screening in order toidentify those children most at risk ofdeveloping low IQ. We could thenpotentially in the future also carry outgenetic testing on children with borderlineblood tests tooʼ.

RESEARCH IN THE MEDIAIn March, the national press (including the Sunday Times and Sunday Telegraph, 23March 2014) reported on findings presented by Dr Peter Taylor (lead researcher at theUniversity of Cardiffʼs School of Medicine) at the Society for Endocrinologyʼs BESconference in Liverpool (see page 4).

MEDICINESUPDATE

Latest news aboutlevothyroxine and Eltroxintablets from AmdipharmMercury (AMCo)

AMCo have produced literature forpatients to help clear up any confusionabout which products are available, andto provide a full comparison of productsmarketed by AMCo - branded Eltroxinand generic levothyroxine. Both thegeneric and branded AMCo products areavailable as 25, 50 and 100 microgram(mcg) strength tablets. In the UK allmedicinal products (such aslevothyroxine and Eltroxin) are identifiedby their Product Licence (PL) numberwhich is printed on the immediatepackaging (carton, label and foil). Allbranded (Eltroxin) products manufacturedunder a particular PL number are alsolicensed under the generic name(levothyroxine). These products areidentical in every way. Thus the 25mcg,50mcg and 100mcg tablets, whetherbranded (Eltroxin) products or generic(levothyroxine), with the same PLnumber, are identical, except for thepackaging.

The 50mcg and 100mcg tablets are eachcurrently available under two different PLnumbers. The 100mcg tablets marketedunder the two different PL numbers areidentical. For the 50mcg strength tablets,there is a very minor difference betweenproducts manufactured under different PLnumbers in the amount of powderedacacia (an inactive binder) that thetablets contain. Apart from this, theproducts are exactly the same. AMCohas made changes to its licences in orderto ensure that the amount of powderedacacia manufactured in future is thesame. Therefore, there will be nodifference in the tablet compositions forall levothyroxine and Eltroxin 50mcgtablets manufactured in future.

Manufacture of the 50mcg tablets underPL 16201/0001 and 100mcg tablets PL16201/0002 will cease from around July2014, effectively bringing into line the PLnumber by which both branded (Eltroxin)and generic (levothyroxine) AMCoproducts are identified. Full information isavailable on the BTF website: www.btf-thyroid.org

PAGE 10 l BTF News 86

and Endocrinology at the Royal FreeHampstead NHS Trust in London. Prior tothis he was a consultant endocrinologist atthe North Middlesex Hospital NHS Trust.His training in general medicine andendocrinology was completed at posts inthe West Midlands, North East Englandand North Staffordshire.

His main area of expertise is thyroiddisease but his clinical practice includesall aspects of diabetes and endocrinology.He has published on various aspects ofthyroid disease and served on theExecutive Committee of the BTA between2002 and 2008.

What do you hope to achieve during yourterm of office as BTA President?

It is a great honour and privilege to beelected as BTA President. I amenormously grateful to my predecessorProfessor Graham Williams for leaving theBTA in such a strong position and for histremendous contribution in developing theBTA during his term. When I was the BTASecretary in 2004 the BTA ExecutiveCommittee held an ʻaway dayʼ to analysethe strengths and weaknesses of the BTAwith the aim of formulating a long-termstrategy. The main strengths agreed andthat have remained are the high quality ofthe membership, the increasingly popularscientific meetings and the continuingdevelopment of our liaison with the BTF.Thyroid disease and pregnancy is anincreasingly important area where wehope to provide clear treatment guidance.The emerging issue of iodine deficiency inyoung women in the UK will need to berecognised and addressed by the publichealth authorities. I hope to build on thoseacknowledged strengths promoting clinicaland basic thyroidology and the needs ofpatients with thyroid disorders.

What is your view of the collaboration withthe BTF, and how can we help each otherand make a difference?

I have been a Trustee of the BTF for twoyears and have been hugely impressedwith all their work and support to patientsas well as the BTA, much of which isbehind the scenes. The BTF has played avital role in the UK Iodine Group (formerlythe UK iodine Status Strategy Group(UKISS)) and recently in promoting thecare of children with thyroid disorders. TheBTF recognises that engagement andeducation of our primary care colleaguesis crucial in supporting patients withthyroid disorders. The continuingcontroversies regarding the assessmentand management of primary

INFERTILITYGood thyroid function is an importantfactor in becoming pregnant andcarrying a healthy baby to term. Thereare many reasons for difficulties inconceiving in couples - a poorlyfunctioning thyroid being an oftenoverlooked factor particularly in femalesubfertility.

According to Professor Simon Pearce,Consultant Endocrinologist at the RoyalVictoria Infirmary in Newcastle uponTyne ʻUndetected thyroid problems cancause significant problems with fertilitybut are generally straightforward tocorrect once identified.ʼ

The symptoms of a poorly functioningthyroid can often be subtle so it isimportant for women to see their GP ifthey have been trying to conceive forlonger than a year to check their thyroidis functioning correctly before startingother medical procedures. This isparticularly important if they have ahistory of thyroid disorders in their familyas many are inherited.

A normally functioning thyroid gland isessential to ovulation, implantation andmaintenance of a healthy pregnancy.Thyroid hormones, previously thoughtnot to affect male fertility, are also nowbeing recognised as playing animportant role, for example in spermproduction.

The most common type of thyroiddisorder in child-bearing women ishypothyroidism. Low levels of thyroidhormone can interfere with the releaseof an egg from the ovaries (ovulation),which impairs fertility. In addition, someof the underlying causes ofhypothyroidism, for instanceHashimotoʼs thyroiditis, appear to alsoimpair fertility.

Treating hypothyroidism in women is animportant part of any effort to correctinfertility: women who havehypothyroidism and hope to becomepregnant, need to work with their doctorto make sure their hypothyroidism isunder tight control. Women who havehypothyroidism and become pregnant,need to tell their doctor as soon aspossible. Close monitoring of thyroidhormone levels during pregnancy canhelp normal fetal development andreduce the risk of miscarriage.

Most women already on levothyroxinetablets and who become pregnant willneed to increase their dose duringpregnancy. Often, this dose increase willbe needed as soon as the womenknows she is pregnant.

Women who have an overactive thyroidshould contact their endocrinologist ifthey are pregnant or are planning tobecome pregnant because they mayneed to change their medication andhave more frequent blood teststhroughout the pregnancy. There is asmall risk of birth defects with allantithyroid drugs during pregnancy, butsuch treatment is safer to both motherand baby than uncontrolled thyroidoveractivity during pregnancy. Youshould discuss these risks with yourendocrinologist before embarking onpregnancy.

It is safe for pregnant women to taketablets for both an overactive andunderactive thyroid during pregnancy.Indeed, adequate thyroid hormones areessential for a babyʼs neurologicaldevelopment whilst in the womb.

The overriding message from theprofessionals is that the earlier thyroidproblems are acted on in pregnancy thebetter the outcome for the unborn child.

International Thyroid Awareness Week25 - 31 May 2014 highlighted infertilityas one of the 'five reasons to be awareof thyroid disease' (see page 2).

MEET THEPRESIDENT OF THEBRITISH THYROIDASSOCIATION

Dr Mark Vanderpump MB ChB MDFRCP was elected President of the BritishThyroid Association (BTA) in April. TheBTA is a non-profit making LearnedSociety of professional clinical specialistdoctors and scientists in the UK whomanage patients with thyroid diseaseand/or are researching into the thyroid andits diseases in humans. The BTA worksclosely with the BTF.

Dr Vanderpump is Consultant Physicianand Honorary Senior Lecturer in Diabetes

Dr Mark Vanderpump

BTF News 86 l PAGE 11

BTF ResearchNews

BTF RESEARCHAWARD WINNERS

Dr Vicky Smith MRC Research Fellow,School of Clinical and ExperimentalMedicine, University of Birmingham whowas awarded the BTF Research Grant in2012, has sent in her final report:

Characterisation of thyroid structureand function in the PBF knockoutmouse

PBF is a protein that is present in thethyroid and is upregulated in both benign

and malignant thyroid disease. We haveshown that PBF can downregulate twoproteins that are important for normalthyroid function, namely NIS and MCT8.NIS takes up iodide from the blood intothe thyroid and is therefore important forthyroid hormone synthesis, and MCT8secretes thyroid hormone from the thyroidinto the blood. NIS is also important forradioiodine uptake and hence increasedPBF protein can impact on criticaltreatment of thyroid cancers and theirmetastases.

Multinodular goitres contain increasedlevels of PBF, and mice that have highlevels of PBF in the thyroid develop largegoitres. Thyroid cancers with higher levelsof PBF are more likely to recur andbecome metastatic, and are associatedwith a reduced survival rate. However, theway in which PBF affects thyroid growthand cancer development is not fullyunderstood.

These studies indicate that PBF is animportant regulator of the thyroid and tounderstand more about how it does this,we aim to characterise a mouse whichdoes not have the PBF protein, a PBFknockout mouse. Our main objectives areto analyse the effect of not having PBF onthe growth and development of the thyroidand on how the thyroid functions.

Our initial studies were very promising,with the successful production of chimericmice showing a high level of contributionfrom the cells containing the PBF deletion.However, genetic screening of subsequentgenerations of mice revealed that cellswith PBF deletion were not being passedfrom generation to generation. Wetherefore discovered that PBF is likely tobe important in the process ofreproduction, making it difficult to obtain amodel in which we could study the thyroid.

To overcome this we therefore switched tocreating a mouse in which PBF is onlydeleted in thyroid cells. We have done thisby manipulating cells grown in vitro (in adish in the laboratory) so that they willproduce the PBF protein normally until wetrigger the deletion specifically in thethyroid. It was possible that the deletion ofPBF in non-thyroid cells may have alsoaltered thyroid growth and function(perhaps through altered hormonesecretion). This new model, which iscurrently under evaluation, will thereforenow show us more specifically what effectlosing PBF has on the thyroid gland.

Alongside this work, we have continued tointensively investigate the mechanism bywhich PBF inhibits radioiodine uptake viathe NIS transporter. Importantly, we have

recently shown that we can use a drug torestore iodide uptake following repressionof the NIS protein by PBF in thyroid cells.Our future research will involve the use ofboth the thyroid-specific knockout mouseand drug treatment in models of thyroidcancer and goitre. This will enable us tounderstand more about how PBFcontributes to thyroid disease and assessPBF as a therapeutic target to improveradioiodine treatment of thyroid cancer.

Dr Petros Perros, ConsultantEndocrinologist at the Royal VictoriaInfirmary, Newcastle and winner of theBTF Research Grant in 2013 has sent asix month report about his study so far:

Peripheral blood microRNA markers inpatients with papillary thyroid cancer:

About 2,500 people are diagnosed withthyroid cancer in the UK every year. Themajority survive for many years, but haveto have checks regularly as the cancercan return even 30 years after the originaldiagnosis. Doctors have a very usefulblood test available called a ʻthyroglobulintestʼ, which can signal early if the thyroidcancer is beginning to come back. So anegative thyroglobulin test is veryreassuring for both patient and doctor andsuch patients can be followed up lessfrequently. Unfortunately, the thyroglobulinblood test in about a third of people withthyroid cancer is made useless by thepresence of antibodies in the bloodstream. Since the thyroglobulin blood testwas invented in the early 1980s no otherbetter diagnostic test has beenforthcoming. Recently interest hasfocused on detecting chemicals in theblood stream called ʻmicroRNAsʼ. Theyare thought to be released by circulatingcancer cells and can act as markers ofcancer.

With the generous support of a BTF grant,we embarked on a project to explore the

Continued on page 12

Dr Vicky Smith

Dr Petros Perros

hypothyroidism remains a difficult area ofour clinical practice in which we are oftencriticised for practising evidence-basedmedicine. I am very supportive of the BTFin the recent initiative to improve the careof patients with hypothyroidism.

What is your vision of how thyroid patientsshould be managed and how would youlike to see this develop in the comingdecade?

I am increasingly being asked about thefeasibility of telephone and virtual clinicsto manage patients with thyroid disorderswhich appear to be increasingly popularamongst commissioners of health care.Many patients with thyroid disorders areincreasingly being denied access tospecialist input so it is crucial that the BTAprovides support to primary care teamswho will often be providing care for themajority of patients. The BTA will berequired to lead on setting high qualitystandards for management of patients inthe future NHS and providing patients withinformation about their thyroid disorder.

PAGE 12 l BTF News 86

RESEARCH FROMAROUND THEWORLD

Treatment decisions inpatients with subclinicalhypothyroidism

Patients with a slightly increased thyroidstimulating hormone (TSH) level butnormal free T4 levels are diagnosed ashaving subclinical hypothyroidism.Treatment of these patients with thyroidhormone is controversial as over-treatment can cause problems includingabnormal heart rhythms and bone lossleading to osteoporosis. (The BritishThyroid Association recommendstreatment if TSH concentration is higherthan 10 mU/l. Treatment can be initiatedat lower levels depending on clinical needfor instance if the patient is consideringpregnancy.)

A recent study of the UK-wide databaseof patients receiving thyroid hormonereplacement therapy has been carriedout to assess the level of over treatment.The study evaluated 52,000 patientsreceiving an initial prescription for thyroidhormone replacement therapy. It wasfound that from 2001 to 2009 the averageTSH for which a new patient receivedthyroid hormone therapy fell from8.7mU/L tp 7.9mU/L with people 30%more likely to be prescribed levothyroxineat lower levels in 2009 than 2001. As aresult approximately 83% of the patientsstarted on thyroid hormone replacementtherapy had a normal free T4 prior tostarting therapy. After 6-12 months oftreatment, 6.3% of patients were found tobe hyperthyroid from their medication.After 54-60 months of treatment, 10.2%were over-replaced and biochemicallyhyperthyroid.

Taken together this suggests that morepatients with marginal indicators ofhypothyroidism are being started onthyroid hormone replacement and thatthese patients are at significant risk ofbeing made hyperthyroid as a result oftheir treatment. The authors of the studycautioned that GPs need to be aware ofthis trend before starting patients on longterm thyroid hormone replacement andonce therapy has begun regularmonitoring appears to be needed toprevent overtreatment.

Taken from the American ThyroidAssociation Clinical Thyroidology for thepublic Volume 7, Issue3, 2014http://www.thyroid.org/patient-thyroid-information/ct-for-patients/vol-7-issue-3/based on an article from Taylor PN et al Falling threshold for treatment ofborderline elevated thyrotropin levels –balancing benefits and risks: evidencefrom a large community-based study.JAMA Intern Med. 2014 Jan; 174(1):32-9.)

Possible link betweenmaternal thyroid dysfunctionand offspring autism andADHD

Researchers from Aalborg University andAalborg University Hospital in Denmarkhave identified a potential correlationbetween maternal thyroid disease that isfirst diagnosed and treated in mothersafter the birth of a child and the risk ofautism or ADHD in their offspring.

Researchers reported that based on atotal population sample of 800,000children over 30,000 were born tomothers with some kind of thyroiddysfunction. Where maternalhypothyroidism was diagnosed there wasa slightly increased risk of their offspringbeing diagnosed with ASD, whereas adiagnosis of maternal hyperthyroidismhad a slightly increased risk of offspringbeing diagnosed with ADHD.

Taken fromwww.autismdailynewscast.comSource: Anderson. S et.al. Attentiondeficit hyperactivity disorder and autismspectrum disorder in children born tomothers with thyroid dysfunction: aDanish nationwide cohort study. BJOG.2014 March 10

Dr Perros, medical editor comments:The results from this study are not easyto interpret. The findings suggest anassociation between maternal thyroiddisturbance detected after childbirth andADHD and ASD. This association israther weak, though statisticallysignificant. So, the first point to make isthat even if these observations arecorrect, cause and effect cannot beassumed. Furthermore, as the authorspoint out there are other studies that donot confirm this trend and some thatshow an association in the oppositedirection, ie ADHD being linked with

use of microRNAs in thyroid cancer. Weused blood samples from patients who wewere confident had no cancer and patientswho we knew for certain still hadcancerous cells in their body. We testedthem for differences in microRNAs in thecirculation. The preliminary analysis hasshown that there were 18 microRNAs thatwere different between the groups. Thiscould mean that some of these markersmay be used to identify patients withthyroid cancer. These results need to beverified, but we are very encouraged atthis stage and we plan to do some moreanalyses on the data.

Continued from page 11

BTF AWARDSEach year we invite applicationsfor two awards: the BritishThyroid Foundation ResearchAward and the Evelyn AshleySmith Award for nurses.

BTF Research Award The deadline for this yearʼs award of£20,000 is 31 August 2014. Weinvite applications for research thatis specifically directed to the study ofthyroid disorders or investigationsinto the basic understanding ofthyroid function.

Evelyn Ashley SmithAward for nursesBTF is offering two awards fornurses, endocrine nurses, midwivesand healthcare professionals with aninterest in thyroid disorders. Theaward of up to £500 is to help coverconference/training expenses,including registration fees and /ortravel costs. The award of up to£1000 is to help support a specificproject lasting one year; or supportan on-going project; or reward apiece of work already completed, butnot yet published. You may apply forboth the £500 Nurse Award and the£1000 Nurse Award provided thateach award is completed onseparate application forms. Theclosing date for receipt ofapplications is 1 July each year.

Please see the BTF websitewww.btf-thyroid.org for more detailsand an application form.

BTF News 86 l PAGE 13

Letters andComments

Hyperthyroidism andcholesterolNR asks: I wonder if you might be able totell me if there is a link betweenhypothyroidism and high cholesterol?

I have been treated with levothyroxine forjust under five years and for at least fourof those years until recently was on adose of 175mcg per day. Following aroutine blood test, my doctor reduced thisto 125mcg. Following a further blood testsix weeks later, he advised me that Ishould drop the dose further to 100mcgbut also advised me that he was ʻverysurprisedʼ to see I had cholesterol levelsof 7.2.

I asked if there was a link between the twoand he thought not but I wondered if youmight have any further information.

Our medical advisor replies: Yes,untreated hypothyroidism is a well-recognised cause of high cholesterol.Once you have been treated though, itgenerally goes back to normal if thehypothyroidism was the cause. If you haveborderline hypothyroidism (subclinical),then the average drop in cholesterol is 0.2mmol/l following treatment withlevothyroxine, so for most people thereisnʼt a massive difference.

Many women have high total cholesteroland high good cholesterol, which is calledHDL [high-density lipoprotein]. Itʼs veryimportant not to get treated for highcholesterol if itʼs attributable to high HDLas the treatment probably worsens yourrisk of heart problems not the other wayround. There are very few reasons to treata 35 year old woman for high cholesteroland I suggest you should be reticent toaccept any medication until a full profilehas been done (i.e. the HDL has beenmeasured).

Thyroid nodulesNS asks: Doing some research on theweb regarding my wifeʼs condition, I cameacross your website.

For nearly 40 years she has beensuffering with non-cancerous thyroidnodules. About 30 years ago she was dueto have an operation to remove her thyroidgland. At the last visit with the consultant, Continued on page 14

she was told there would not be a need foran operation because the nodules haddisappeared. Now in 2014 after her mostrecent visit to the hospital she was onceagain told she would need to have herthyroid gland removed and would be onmedication the rest of her life.

On the web, I saw a mention about laserablation thus removing only the nodules,which in my opinion would definitely bepreferable. Although this has beenpioneered in the US (in 2006) I amstruggling to find any mention of it in theUK.

I will be very much obliged if yourorganisation has any knowledge ofpractitioners who carry out this procedurein the UK.

Our medical advisor replies: Thyroidnodules are common and can affect up to50% of the population, mainly olderwomen. The risk of cancer is very low andmost nodules can be managedconservatively. If the nodule causesproblems particularly if it is growing,causing symptoms or is a cosmeticconcern AND once cancer has beenexcluded then surgical removal has beenthe mainstay of treatment for decades. Inthe last decade newer therapies havebeen suggested for managing thyroidnodules such as alcohol injection (mainlyif the nodule is cystic – that is, containsmainly fluid and recurrent after aspiration)and radiofrequency ablation, lasertreatment, microwave or high frequencyultrasound treatment for solid non-cancerous nodules. All these proceduresare in their infancy and a number ofcentres worldwide are still gainingexperience in their use. In Europe, laserablation of solid thyroid nodules hasmostly been used in Denmark and Italybut not in the UK, as far as I am aware.These European groups are stillpublishing their experiences as part oftrials. In inexperienced hands, theseprocedures are not without risks –damage to the vocal cord, laryngeal nerve(nerve to the voice box) and severetransient pain has been reported. Theseissues are likely to be more frequent inoperators who are still gaining experiencerather than fully trained personnel.

Unnecessary surgery?CB asks: I am British and currently livingin Johannesburg, South Africa. On arecent routine examination a nurse couldsee a swelling in my neck, which led to anultrasound examination. The report says itis probably a colloid nodule. I have seen a

maternal hypothyroidism (nothyperthyroidism). This is an example ofhow large databases can be used to lookat trends and potential links, but usuallylittle more as the biases are great. Theycan be however the starting point fordesigning more robust studies that maypotentially be able to answer importantresearch questions.

Link between thyroid diseaseand ethnicityA new study by researchers in Australiaappears to have found a link betweenrace and a personʼs risk of developingautoimmune thyroid conditions such asGravesʼ disease or Hashimotoʼsthyroiditis. African Americans and Asiansare much more likely to develop Gravesʼdisease than whites according to thestudy published in the Journal of theAmerican Medical Association.Conversely whites have an increased riskof Hashimotoʼs thyroiditis. The findingsare based on a study led by Dr. DonMcLeod of the QIMR Berghofer MedicalResearch Institute in which the medicalrecords from all United States active dutymilitary personnel aged 20 to 54 from1997 to 2011 was analysed.

ʻWe donʼt yet know whether thedifferences seen are due to genetics,environmental exposures or acombination of both. But if thesedifferences are due to racial variations inimmune system pathways, in the futurewe could use this information to designnew treatments or prevention forautoimmune disease.ʼ said McLeod.

The researchers now need to confirmthat these patterns are seen in the widerpopulation and are not specific to the USmilitary.

ʻFinding the root causes of thyroidautoimmunity has the potential to lead toprevention of thyroid disorders, and mayalso lead to crucial insights into otherautoimmune diseasesʼ

Taken from Asian Scientistwww.asianscientist.com (April 28 2014)Sources: Donald McLeod,endocrinologist and researcher, QIMRBerghofer Medical Research Institute,Queensland, Australia; M.D.,director,clinical endocrinology, Beth IsraelDeaconess Medical Center, Boston; April16 2014, Journal of the American MedicalAssociation.

PAGE 14 l BTF News 86

Local Groupsblood test results, but a consultant wouldonly be recommending this course oftreatment if the blood tests were showinga recurrence of the thyrotoxicosis. It is notunusual for people who have been verythyrotoxic to feel well with milder levels ofthyrotoxicosis.

We would therefore strongly advise younot to stop your medication without furthermedical advice as this could result in moresevere thyrotoxicosis, which could beharmful in the long term. If you were nothappy with the advice from yourconsultant we would advise you to ask foranother appointment with the consultantso that you can raise your concerns. If youdonʼt feel able to do this, then you havethe option of asking your GP to refer youfor a second opinion.

Crumbling tabletsFrom former BTF Trustee Peter Foley

Over a period of the last two years I havenoticed that the tablets in the Actavispacks have a tendency to crack and/ordisintegrate when pushed from the blister.This makes them very difficult to usesuccessfully and can cause additionaldifficulties for patients with eyesightimpairments.

I contacted the company during summer2013 and their reply was that they wereaware of the problem with tablet qualityand were doing their utmost to resolve it.The packs did in fact improve significantlybut my last prescription of December hasonce again had a few split tablets

Actavis are in smaller sheets of fourteentablets with a rather tighter fitting blisterthan other manufacturersʼ products andneed more pressure to gain access to thetablet and therefore the extra pressureexerted may contribute to the breaking ofthe tablet.

If you have experienced similar problemswe would like to hear from you. Emaile.clegg@btf-thyroid.org

Continued from page 13

Please check the BTF website for thelatest details. Please also checkbefore you attend a meeting that ithas not had to be cancelled due topoor weather conditions.

Belfast

NEXT MEETING: The group meetsevery first Thursday of every secondmonth at 5pm.Check the BTF websitefor details.

LOCATION: Merchant Hotel, Belfast(High Street entrance).

CONTACT: Ursula Tel: 07720 659849email: ursulajordan06@aol.com forfurther information.

Birmingham

NEXT MEETING: TBC. Check theBTF website for details.

LOCATION: Yardley Baptist Church,Rowlands Road, Yardley, Birmingham,B26 1AT. There is free parkingavailable.

DONATION: £2 voluntary donation forvenue costs and refreshments.

CONTACT: Janet Tel: 0121 628 7435or email: janetdmp@googlemail.com

Cambridge

NEXT MEETING: Saturday 12 July2014 from 10am -1pm

LOCATION: Friendsʼ Meeting House,Jesus Lane, Cambridge CB5 8BA.

PROGRAMME: To include a talk byMiss Rachna Murthy ConsultantOphthalmologist and OculoplasticSurgeon at Ipswich Hospital andAddenbrookeʼs Hospital and Dr PaulMeyer Consultant MedicalOphthalmologist at AddenbrookesHospital.

DONATION: Suggested minimumdonation: £3.

ʻspecialist surgeonʼ who without evenblinking wants to remove my right thyroidgland.

I am concerned that since most peoplehave private health insurance here I ampossibly having unnecessary surgery.

I have normal TFT results and donʼtsmoke. The blood test also showed I wasanaemic.

Our medical advisor replies:Unfortunately, we are not able to formallyadvise as you live outside the UK.However it would be reasonable to statethat in the UK it would be anticipated thata nodule would be subject to biopsy andthe cells formally reviewed by acytopathologist before a recommendationfor surgery was made. Indications forsurgery would include an abnormal biopsyresult and/or a nodule that was increasingsignificantly in size and causingobstructive symptoms.

Second opinionSH asks: I am hoping you can advise me,as I appear to have run out of options. Iwas diagnosed with Gravesʼ two yearsago and have been on varying amounts ofPropylthiouracil ever since. After an initialspike my levels have gradually droppeduntil a few months ago they were on thelow side of normal. At that time I felt asthough they were very much too low butcontinued on 50mg. My last appointmentwas a couple of weeks ago and I wasconvinced that I would be able to ceasethe drug, as I had no symptoms and feltvery well, other than still carrying the 3½stone that I had put on during treatment.

Rather than telling me I could cease themedication, I was told that my levels hadincreased and I would need to increasemy tablets and decide on whether I wouldopt for the radioactive treatment or anoperation.

I completely disagree with the test results.I feel fine and am very reluctant toincrease the medication, let alone opt formore radical treatment.

Is there any likelihood that my ʻnormalʼlevels are above what my specialistconsiders to be acceptable? Could I juststop the medication altogether and seewhat happens? I feel I have nowhere toturn, I really do feel well and completelydisagree with my consultant.

Our medical advisor replies: Thank youfor contacting BTF. It is difficult tocomment on this without knowing your

BTF News 86 l PAGE 15

The BTF is very appreciative of our fantasticteam: employees, volunteers, members,professionals, doctors and nurses who helpthe organisation to develop, as proved byour successful activities over the years.

Patrons:Clare Balding OBELord Jamie BorwickJenny Pitman OBEMelissa Porter BA (Hons)Dr W Michael G Tunbridge MA MD FRCPGay SearchJosef Craig MBE

Trustees:

Mr Richard D Bliss MA MB FRCSAngela Hammond (Vice Chair)

Professor P Hindmarsh BSc MD FRCPFRCPCH

Nikki Kieffer

Bridget OʼConnorJanet Prentice BSc (Hons)

Professor Geoffrey E Rose BSc MS DScMRCP FRCS FRCOphthDr M Strachan MD FRCP (Edin)Mrs Judith Taylor BA (Hons) (Chair)

Ex-Officio Members of the Trustees:

Dr M Vanderpump MB, ChB, MD, FRCP -President, British Thyroid Association

Newsletter Disclaimer:

The purpose of the BTF newsletter is toprovide information to BTF members.Whilst every effort is made to provide correctinformation, it is impossible to take accountof individual situations. It is thereforerecommended that you check with a memberof the relevant medical profession beforeembarking on any treatment other than thatwhich has been prescribed for you by yourdoctor. We are happy to forwardcorrespondence between members, but donot necessarily endorse the views expressedin letters forwarded.

Medical comments in the newsletter areprovided by members of the medicalprofession and are based on the latestscientific evidence and their own individualexperiences and expertise. Sometimesdiffering opinions on diagnosis, treatmentand management of thyroid disorders maybe reflected in the comments provided, aswould be the case with other fields ofmedicine. The aim is always to give the bestpossible information and advice.

If you have any comments or queriesregarding this publication or on any matterconcerning the British Thyroid Foundationwe would be pleased to hear from you.

CONTACT: Mary on 01223 290263 oremail her onbutterflyecho@hotmail.com.Please call or email if you are thinkingof attending the meeting to give anidea of numbers.

FUTURE MEETING: Saturday 15November 2014 - Dr Carla Moran willgive a talk on thyroid disorders andpregnancy/fertility.

Edinburgh

NEXT MEETING: The Edinburgh BTFSupport Group meets on the lastTuesday of the month except forschool holidays.

LOCATION: Liberton High School,Gilmerton Road, Edinburgh, EH177PT.

This meeting is a ʻdrop-in sessionʼand anyone is welcome between7.15pm and 8.30pm to discuss theirparticular thyroid condition and to getadvice and support. Check the BTFwebsite for further details.

CONTACT: Margaret Tel: 0131 6647223 or email: M2mcgregor@aol.com

Leeds (Wharfedale)

NEXT MEETING: Details availablesoon - check the BTF website fordetails.

LOCATION: TBC.

DONATION: No charge but a smalldonation to the BTF would beappreciated.

CONTACT: Caroline on 0113 2886393 or email:cfields237@btinternet.com for moreinformation.

NEXT MEETING: Saturday 13September 2014.

LOCATION: The Atrium, Royal FreeHospital, Pond Street, London NW32QG. Car parking is available butlimited and expensive. For directionsand details of public transport to theRoyal Free Hospital, please visitwww.royalfree.nhs.uk/

DONATION: Suggested minimum £3donation.

CONTACT: Denise on 07984 145343email: denisesims@btf-thyroid.org

FUTURE MEETING: 8 November2014

Milton KeynesNEXT MEETING: Saturday 11October 2014 at 10.30am. This will bea support group meeting.

LOCATION: The Pavilion, OpenUniversity, Milton Keynes, MK7 6AA.

Information events are held at10.30am every three months. Checkthe BTF website for further details.

DONATION: £2 voluntary donation forroom hire and expenses of runningthe group.

CONTACT: Wilma Tel: 01908 330290or see: www.thyroidmk.co.uk or findus on Facebook.

Notts/DerbyNEXT MEETING: 1 September 2014from 7 to 8.30pm.

The group will now meet every threemonths instead of monthly (excludingbank holidays). Check the BTFwebsite for more details.

LOCATION: The Staff of Life publichouse, West End, Sutton-in-Ashfield,Notts, NG17 1FB.

CONTACT: Bridget on 01623 750330after 6pm on weekdays and any timeat weekends. London

Welcome to Denise our newLocal Group Coordinator forLondon. She has taken over therole from Lorraine Williams.(see page 2).

PeterboroughWelcome to Jennie, our newLocal Group Coordinator! Pleasecall her on 01733 391231 oremail: jjo@coachingoutliers.co.ukif you would like to come along toa meeting.

PAGE 16 l BTF News 86

OUR PARTNER ORGANISATIONS

BTF LOCAL COORDINATORS Our 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 contacts are happy to take calls on thyroid disorders that they have experienced. Please see the key below

Belfast Ursula (U) 07720 659849ursulajordan06@aol.comBirmingham Janet (PC,CS,RAI,PH) 0121 6287435janetdmp@googlemail.comCambridge Mary (O,RI,U) 01223 290263butterflyecho@hotmail.comEdinburgh Margaret (PC) 0131 6647223

Carole (FC,CS,RAI) 01204 853557Dave (PC,CS,RAI) 07939 236313Jackie (PC,CS) 01344 621836Gay (G,TS) 020 8735 9966Nia (U) 01942 819195Karen (U) 01628 529212Wilma (U) 01592 754688Angela (U) 01943 873427

AMEND Tel: 01892 516076 http://www.amend.org.ukHypopara UK http://www.hpth.org.uk.HPTH Helplines 01342 316315 (South) and 01623 750330 (North)Thyroid Cancer Support Group Wales Tel: 08450 092737http://www.thyroidsupportwales.co.ukButterfly Thyroid Cancer Trust Tel: 01207 545469http://www.butterfly.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

BRITISH THYROID FOUNDATION DETAILS

Patricia (U) 01795 661157Richard (U) 01483 576785Colin (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 525770Penny (Ch) 01225 421348

Leeds (Wharfedale) Caroline (O,U) 01132 886393 London Denise (U) 07984 145343denisesims@btf-thyroid.orgMilton Keynes Wilma (U) 01908 330290Notts/Derby Bridget (GR,TS,U,PH) 01623 750330Peterborough Jennie (GR,TS,U) 01733 391231

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

2 to 7pm weekdays only 10am to 12 noon weekdays After 6pm weekdays and anytime weekends2 to 8pm Tuesdays and Wednesdays up to 8pmAfternoons only

ALL ENQUIRIES TO: The British Thyroid Foundation, 2nd floor,3 Devonshire Place, Harrogate, North Yorkshire HG1 4AA.Tel: 01423 709707 or 01423 709448 website: http://www.btf-thyroid.org.

BritishThyroidFoundation @britishthyroid

Director and Secretary to the Trustees: Mrs J L HickeyTreasurer: Dr Mark Strachan Computer Manager: Professor B HickeyWebmaster: Claire SkaifePA to the Director and Office Manager: Mrs Cheryl McMullanemail c.mcmullan@btf-thyroid.orgDevelopment Officer: Julia Priestley

Editorial Board: Nikki Brady, Liz Clegg, Dr Dan Ezra,Professor Simon Pearce, Dr Petros Perros, Dr Peter Taylor,Dr Mark VanderpumpMedical Editor: Dr Petros PerrosHead Office Volunteers: Jan Ainscough, Jennifer Linley, Helen Dawson,Angela Hammond, Vivienne Rivis, Fiona MaxwellDesign and artwork for BTF News: Keen Graphics 01423 563888

Next issue of BTF News: November 2014. Letters and articles should be sent to editorialboard@btf-thyroid.org by 1 October 2014. News from local groupsshould be sent in to Liz Clegg; e.clegg@btf-thyroid.org to arrive by 1 October 2014.For online donations please visit http://www.justgiving.com/btf/donate or text our unique code - THYR01 - and the amount you would like to donate to 70070.Copyright © 2014 British Thyroid Foundation. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted inany form or by any means without the prior permission of the copyright owner.

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, senior citizen (over 65), under-18s and students in full-time education. Please help us by ensuring that you pay the correct subscription.

Email only

£200 by cheque

Cancer52 http://www.cancer52.org.ukThyroid Eye Disease Charitable Trust: Tel: 0844 8008133http://www.tedct.co.ukBritish Thyroid Association http://www.british-thyroid-association.orgBritish Association of Endocrine and Thyroid Surgeonshttp://www.baets.org.ukSense about Science http://www.senseaboutscience.org.uk

Office enquiry line open: Mon to Thurs, 10am - 2pm.

In the event of a complaint, please address yourcorrespondence to ʻThe Chair of Trusteesʼ.