A Happy New Year to all our readers

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 number 79 January 2012

IN THIS ISSUE....News about BTF.....................pages 2-3Out and About .......................page 4Fundraising and Donations...............................pages 5-7In the Media ...........................page 8Study to look at howto treat subclinicalhypothyroidism......................page 8Over-the-countersupplements ʻput lives atriskʼ say US researchers ......page 8TEAMeD study findsʻwide varianceʼ in surgicalprocedures in England..........page 9BTF Research News -articles by Peter Taylor(BTF Research Award 2011)and Nikki Kieffer (EvelynAshley Smith Award 2010 .....pages 10-11My Story - living withcongenital hypothyroidism...page 12Letters and comments...........pages 12-13Local groups.............................pages 14-15

BTF News 79 l PAGE 1

Continued on page 2

Online forum on thyroiddisordersWeʼre excited to announce that theBTF has been invited to take part inan NHS Choices/Talk Health onlineclinic about thyroid disorders from 25-31 January, in partnership with Senseabout Science.

A team of clinical experts will answergeneral questions about thyroiddisorders from members of the publicduring that week, after which theinformation will be archived on theNHS Choices website.For more information seehttp://www.talkhealthpartnership.com/nhs_choices/Online_clinic_thyroid_disorders.php

AHappy New Year to all our readers

Janis Hickey, BTF Director, said: ʻIt is ourpolicy to review all of our literature every twoyears and update if necessary.

ʻThis is a very major undertaking and onethat we take very seriously.

ʻThere are three main criteria. The contentneeds to be clear and understandable forpatients, it must be up to date, and it shouldbe backed by evidence.ʼ

All of the content is sent first to the membersʼpanel and our local coordinators andtelephone contacts who are invited to makecomments and suggestions on the currentleaflets. It is then sent to BTFʼs medicaladvisors who are asked to makerecommendations via a simple review formon whether the content of each leaflet needsno revision (in which case, the content isreviewed again when the material needsreprinting), minor revision, or major revision,and to list the points that they recommendchanging. The reviewers are selectedaccording to their specific expertise.

After incorporating the changes, the texts arethoroughly proofread for accuracy and clarityand anything that is not clear is reviewedagain.

The final content is sent to the British ThyroidAssociation and the British Association ofEndocrine and Thyroid Surgeons who reviewand endorse the final product.

Judith Taylor, BTF Editor, said: ʻAs editor, Isee part of my role as being to navigate away through the recommendations made bypatients and medical experts to make adocument that everyone can agree on andsupport.

ʻIf any of the recommendations are unclearor, as sometimes (but rarely) happens, thereis a disagreement, we check and recheckuntil there is a consensus.

ʻIt sometimes happens that an adviser willrecommend a change to one leaflet thatneeds to be applied to other leaflets. Part ofmy role is to keep an eye out for thesechanges and ensure that they areconsistently applied across the literature.ʼ

There is a two-page Quick Guide and a moreextensive six-page leaflet covering each ofthe following topics:l Antithyroid drug therapy to treat

hyperthyroidisml Congenital hypothyroidisml Hyperthyroidisml Hypothyroidisml Pregnancy and fertility in thyroid disordersl Psychological symptoms and thyroid

disordersl Thyroid cancerl Thyroid disorders and osteoporosisl Thyroid eye diseasel Thyroid function testsl Thyroiditisl Thyroid nodules and swellingsl Thyroid surgeryl Treatment of an over-active thyroid with

radioactive iodineChanges made since the previous QuickGuides and leaflets were produced in 2008include:Antithyroid drugs - adding a warning topatients on propylthiouracil (PTU) to alerttheir doctors if they notice any yellowing ofthe skin or eyes. Although this is very rareindeed, the FDA in America has issued awarning that PTU can cause severe liverdamage. Advice for children not to take PTU

NEW LEAFLETS AND QUICK GUIDES PUBLISHED!The BTF Quick Guides and leaflets have now all been reissued following an extensivereview of all of the BTF patient literature which started in 2010. The revised QuickGuides and leaflets were released during the second half of 2011.

PAGE 2 l BTF News 79

NEWS ABOUT BTF

BTF is 21 this year!The BTF will reach its 21st anniversary inOctober. A project group consisting ofEleanor Temple (BTF Trustee), CathrynPerkins (volunteer), and BTF staffmembers Janis Hickey and CherylMcMullan has been formed to plan someexciting fundraising activities.

Janis Hickey says: ʼIf you have anyfundraising ideas please get in touch.ʼ

Welcome to…Our new patron, Lord Borwick ofHawkshead - Chairman, FederatedInvestments LLP.

Jamie Borwick,56, who is abusinessmaninterested incharities, traveland politics, hadGravesʼ diseasea couple of yearsago and thyroideye disease aswell, so when histhyroidmisbehaved

again this year, he had it removed in anoperation in May 2011.

Jamie started with Sir Robert McAlpine &Sons Ltd in Scotland and Newcastle forten years before joining ManganeseBronze Holdings PLC, becoming CEO atthe age of 31. MBH at that timemanufactured the traditional London Taxiand a range of automotive components.

He was a member of various City ofLondon committees and chaired the CBISmaller Quoted Companies Group,somewhat bizarrely gaining a ʻSaying ofthe Yearʼ award from Accountancy Age!

After becoming Chairman of MBH in 2001,Jamie left in 2003 to manufacture electrictrucks until 2010.

He is currently a non-executive Director ofHansa Trust PLC, a successful InvestmentTrust, having held that post since 1984.He is also Chairman of CountrysideProperties (Bicester) Ltd, and has run aseries of investments redevelopingproperty for housing and also offices in the

West End of London. He is also Chairmanof a new company working to teach musicto children using software.

Having made the London Taxi wheelchair-accessible, Jamie is also a Vice Presidentof RADAR, the disability rights charity, andfor some years ran the wheelchair andscooter section of Motability, financingdisabled people to have mobility. He isalso a Trustee of the British LungFoundation and Chairman of the ParentsGroup of the Royal Brompton Hospital,and a Trustee of two other charitiesworking in education of deaf children andresearch into the genetic causes of heartmalformations.

Jamie lives in London with his wife andfour children. His wife Victoria is anelected politician.

JuliaPriestley,who hasjoined BTFHQ as avolunteer.

Afterstudyinghistory atuniversity,Julia trainedas a lawyer

and worked at large law firms inManchester, London and Leeds whereshe specialised in commercial propertylaw.

In 2001, after settling in Harrogate, shetook a career break when she had herchildren. Since that time she has alwayslooked for ways to be involved with localorganisations, for example with herchildrenʼs pre-school playgroup, localorchestra and as a school governor.

Julia said: ʻI welcome the chance tovolunteer for the BTF and support theimportant and varied work it does.ʼ

Farewell to…. Ex-officioTrustee GregSadler, whohas decided tostep down fromrepresentingthe BritishAssociation ofEndocrine andThyroidSurgeons onthe BTF Board

of Trustees due to his heavycommitments.

Lord Borwick of Hawkshead

Julia Priestley

Greg Sadler

Continued from page 1

unless they are allergic to other drugs wasincorporated.Osteoporosis - the recommended dailyintake of calcium was increased from 700mgto 1000mg in line with National OsteoporosisSociety guidelines.Pregnancy - informing patients who aretaking levothyroxine about the need to seetheir doctor and increase their dose oflevothyroxine as soon as they know they arepregnant, by 25-50mcg, and to arrange tohave a thyroid function test.Thyroid surgery - expanding theinformation about the potential risk ofparathyroid damage and adding thisinformation to the thyroid cancer leaflet,along with a strong recommendation topatients to have surgery at the hands of anexperienced endocrine or head and necksurgeon.Thyroid cancer - revising the leaflet in linewith changes made in the thyroid cancerbooklet, and altering the recommendation tomen that they avoid fathering a child fromfour months to six months after radioactiveiodine treatment, in line with the latestguidelines.Thyroid function tests - adding clearerwording to point out that reference rangesmay vary between different laboratories,therefore the interpretation will depend onthe range used by that particular laboratory.

How to orderThe Quick Guides, handy short referencesfor people who are just finding out about aparticular disorder, are all available on theBTF website. Health professionals can orderthe Quick Guides in bulk to display at theirclinics and give to patients. An order form isavailable on the website. It is also possible toorder on line and to pay by credit card or PayPal.The leaflets are only available to members.

Information prescriptionsAll of the BTF Quick Guides have now beensubmitted and uploaded to the NHSInformation Prescriptions project.

The Information Prescription Service (IPS) isbeing developed to allow users, bothprofessional and public, to create informationprescriptions (IPs) for long-term healthneeds. The project is now being tested.

The BTF thyroid cancer information hasbeen uploaded to the Cancer InformationPathways which are being merged withthe IPS.

The next literature review process willstart in spring 2013. We invite membersto send in any comments they may haveabout the current leaflets.

We hope all our supporters had a lovely Christmas and we wish youa Happy New Year.


Childrenʼs Christmas cardcompetitionThanks to all those who supported us bybuying our Christmas cards.

Due to fantastic coverage of our childrenʼsChristmas card design competition in BTFHQʼs local newspaper, the HarrogateAdvertiser, we had to organise a furtherprint run!

Thanks also to our winner PatrickMukaziʼs school - Saltergate Infant Schooland Nursery, Harrogate - for selling cardsat the schoolʼs Coffee Morning andChristmas Fayre.

Anna Knightsʼ butterfly printAward-winning botanical artist AnnaKnightsʼ beautiful limited edition fine artprint ʻPeacock Butterfly on Apple Blossomʼwas displayed at RHS Garden HarlowCarr just outside Harrogate for severalweeks during September and October,along with BTF materials.

The display highlighted September -Thyroid Cancer Awareness Month.

Janis Hickey says: ʻWe are very gratefulto staff at RHS Garden Harlow Carr forgiving us the opportunity to exhibit Annaʼspainting and for highlighting ThyroidCancer Awareness Month in this way.ʼ

Anna, who is a thyroid cancer survivor, isdonating all profits from the print to theBTF. The print is still available to buy inthree standard sizes with prices from £90.For more details and to buy on line visithttp://www.annaknights.co.uk/

A two-day course will be given by Annafrom 17-18 September at RHS GardenHarlow Carr. The course will focus on howto create fruit good enough to eat -creating shine and bloom. Please contactRHS Garden Harlow Carr on 0845 2658070 for more information and to book.

Anna will also be supporting BTF atHarrogate Spring and Autumn Flower

Shows in 2012. She will have a stand atthe spring flower show, which will takeplace from 26-29 April. Why not comealong and support us if you can?

Gardening Scotland 2012BTF has been offered a complimentarystand by the organisers of ʻGardeningScotland 2012ʼ. Our floral display -ʻBlossoms and Butterfliesʼ - will haveAnna Knightsʼ print as the centre piece.

BTF Patron, Gay Search, said: ʻItʼs veryexciting that the BTF will be representedat Scotlandʼs answer to Chelsea. I am agreat believer in the holistic therapeuticvalue of plants and gardens, so it seemsan ideal marriage. I am already lookingforward to seeing it in June.ʼ

For further information see:www.gardeningscotland.com or call theticket hotline: 0131 333 0965

BTF strategy plan reportThe BTF Strategy Group has drawn up adraft strategic plan which has beencirculated to the Trustees for comment.

The plan lays out a number of strategicaims, describes the key activities thathave already been undertaken to achievethem and charts a path for the future. Italso outlines the key success factors thatwill show whether and how the BTF ismaking a difference and where it canimprove.

If you have any suggestions for ourstrategy, please send an email to JanisHickey: [email protected]

Two TEAMeD articlesaccepted for publicationTwo articles submitted by the Thyroid EyeDisease Amsterdam DeclarationImplementation Group UK (TEAMeD) arebeing published.

A research study entitled ʻOrbitaldecompression for Gravesʼ orbitopathy inEnglandʼ has just appeared in Eye (seepage 9), while an article aimed at GPs -ʻNearly Missedʼ - has been accepted bythe publication GP.

SfE grant for TEAMeD studyTEAMeD has received a grant of £17,894from the Society for Endocrinology tosupport a manager and database entryclerk as part of a study entitled ʻPost-Radioiodine Management of Patients withGravesʼ Diseaseʼ.

New website area for andabout children The BTF website now has a new areadedicated to parents/carers of children withthyroid disorders and children with thyroiddisorders.

The new area, located under Your Thyroid,is called ʻFor Parents and Childrenʼ and willinclude the full text of a new guide forparents and carers called Thyroidconditions in babies, children and youngpeople: A guide for parents and carers. Itincludes contributions by patients andcarers.

It also includes ʻDr Timʼs Newsʼ, which hasvarious articles written by Dr TimCheetham, Consultant PaediatricEndocrinologist at the Royal VictoriaInfirmary, Newcastle Upon Tyne, andʻLetters from Parents, Carers and Kidsʼ,with letters previously published in BTFNews and newly submitted letters.

The ʻJust for Kidsʼ area now includesinformation about hypothyroidism andhyperthyroidism written at childrenʼs levelby Dr Cheetham. In the future it will alsoinclude educational tools for children suchas word searches, thyroid vocabulary, andother multimedia tools.

Pregnancy project groupinvestigates TSH rangesThe BTF Thyroid in Pregnancy projectgroup is investigating TSH referenceranges for pregnant hypothyroid patients toassist in careful monitoring of thyroidconditions in each trimester of pregnancy.

A questionnaire has been circulated to labsabout reference ranges for thyroid functiontests in pregnancy. Lab responses areeagerly awaited. Locally, work continues todevelop trimester specific ranges.

More publications have been added to thegroupʼs growing list of research into thyroidand pregnancy:

ʼScreening for Thyroid Dysfunction inPregnancy: Is It Worthwhile?ʼ by John H.Lazarus in the Journal of ThyroidResearch and

ʼThyroid Function in Pregnancy: Maternaland Fetal Outcomes with Hypothyroidismand Subclinical Thyroid Dysfunctionʼ byNeil K Vanes, John H Lazarus, andShiao-Y Chan in the Maternal MedicineReview.

If you are interested in participating in theThyroid in Pregnancy project group, pleasecontact Donna Reed [email protected]

Annaʼs painting on display at Harlow Carr


RCP updates hypothyroidismstatementThe BTF supports the updated statementon The diagnosis and management ofprimary hypothyroidism which the RoyalCollege of Physicians issued in June2011.

The RCP first issued this statement inNovember 2008.The statement has nowbeen formally re-endorsed. This follows areview, conducted in line with bestpractice policies, by the followingorganisations:

l The Royal College of Physicians, in particular its Patient and Carer Networkand the Joint Specialty Committee for Endocrinology & Diabetes

l The Association for Clinical Biochemistry

l The Society for Endocrinologyl The British Thyroid Associationl The British Thyroid Foundation Patient

Support Groupl The British Society of Paediatric

Endocrinology and Diabetes

As stated on the RCP website: ʻTheoutcome of the review was that the advicefrom 2008 to those treatinghypothyroidism remains valid. Minoramendments have been made to givefurther explanation where thoughtapplicable.ʼ

The full statement is on the RCP website:http://www.rcplondon.ac.uk/resources/clinical-resources/diagnosis-and-management-primary-hypothyroidism

ʻAsk for the evidenceʼThe BTF supports the Sense AboutScience ʻAsk for Evidenceʼ campaignwhich helps people to ask questions aboutthe status of scientific statements andresearch reported in the media.

BTF Director Janis Hickey said: ʻThere ismuch misleading information on the web,which may lead some people to think thatthey can treat their thyroid disorder by, forexample, supplementing their medicationby changing their diet or buying expensivesupplements online, when there is noevidence that these work. It is important toask questions and to make informeddecisions based on the body of evidenceand recommendations of your doctor,rather than on speculative claims.ʼ

Janisʼ statement along with others is onthe Sense About Science website:http://www.senseaboutscience.org/pages/a4e_launch.html

Sense About Scienceʼs ʻVoice of YoungScienceʼ network has been in search ofevidence behind claims and has puttogether a fascinating dossier ofexperiences:http://www.senseaboutscience.org/pages/there-goes-the-science-bit....html

OUT AND ABOUTSociety for EndocrinologyNurses UpdateDonna Reed, BTF Project Facilitator,manned the BTF stand at the Society forEndocrinology Nurses Clinical Updatewhich took place in Stratford-upon-Avonon19-20 September. This meetingspecifically aimed at new and veteranendocrine nurses featured Nikki Kieffer,Endocrine Practice Nurse and a memberof the BTF Thyroid in Pregnancy ProjectGroup, presenting information on thyroiddisorders to nurses.

BTF supplied every nurse in attendancewith samples of patient information to takewith them.

Royal College of GeneralPractitionersʼ ConferenceDonna Reed also represented BTF at theRoyal College of General Practitionersʼconference which took place from 20-22October in Liverpool.

There she met up with Dr David Kerbel,GP and member of the BTF Thyroid inPregnancy Project Group, to discussstrategies for the pregnancy project.

Donna also gave out information aboutthyroid eye disease early detection andthyroid conditions in pregnancy. It was awonderful opportunity to create awarenessfor BTF and our special projects.

Endocrinology ClinicalUpdateDonna Reed, Cheryl McMullan andJennifer Linley represented BTF for aday each at the Society for EndocrinologyClinical Update 7-9 November inSheffield. Our stand emphasised ourprojects with our project poster and wehanded out critical information aboutthyroid eye disease and thyroid conditionsin pregnancy.

Cancer52 briefing at theHouse of LordsJudith Taylor, BTF Editor and ThyroidCancer Project Group Lead, attended abriefing organised by Cancer52 at theHouse of Lords on 21 September. Around50 representatives of charities andindustry were briefed on the organisationʼsachievements over the past five years andits aims for the future. The briefing washosted jointly by Cancer52ʼs HonoraryPresident, Baroness Morgan of Drefelin,and Professor Sir Mike Richards,National Clinical Director for Cancer.Simon Davies, Cancer52 Chair, spoke ofthe organisationʼs objectives.

Cancer52 defines itself as ʻthe commonvoice for the less common cancersʼ. It hasgrown from an initial group broughttogether at the request of ProfessorRichards to provide input into the CancerReform Strategy. It is so named because52% of cancer deaths in the UK are fromthe less common cancers (i.e. excludingthe ʻbig fourʼ: bowel, breast, lung andprostate), although in 2010 this proportionincreased to 53%.

Nikki Kieffer speaking at the SfE Nurses ClinicalUpdate Meeting in September

GP Dr David Kerbel who is a member of the Thyroid inPregnancy group

Donna Reed on the BTF stand at the RCGPconference


British Thyroid Association

Lorraine Williams, London groupcoordinator and Judith Taylorrepresented the BTF at the BritishThyroid Association Annual Meeting onWednesday 30 November and Thursday 1December. They shared display spacewith Lin Welch of the Thyroid EyeDisease Charitable Trust (TEDct). Therewas a lot of interest especially in the newpatient information leaflets and in thethyroid cancer booklet.

The meeting was held at the RoyalCollege of Pathologists, next to the RoyalSociety building, in London and is aimedat clinicians and researchers and includedspeakers from France, Germany and Italy.There were half-day sessions on thyroidcancer and thyroid eye disease. Ahighlight of the meeting was a patientinterview. Dr Petros Perros interviewed apatient with thyroid eye disease, whichwas well received by the audience.Several people commented afterwardsthat it was valuable and interesting to hearof the patientʼs journey through diagnosisand treatment from her own perspective.

Thyroid Cancer Alliancerepresentatives meet inNewark, NJ

The Thyroid Cancer Alliance (TCA) heldits first Annual General Meeting inOctober. The meeting was held in Newark,New Jersey,USA. The travel and meetingcosts were covered by a grant fromGenzyme.

The TCA is an international coalition ofnational advocacy organisations whorepresent thyroid cancer patients. It

includes organisations from the USA,Canada, Argentina, France, Germany andthe Netherlands as well as the UK.

Judith Taylor attended the meeting as theBritish Thyroid Foundationʼs thyroidcancer project group lead and alsorepresented Hypoparathyroidism UK(HPTH UK) at the meeting. There wereten people present, representing 11organisations.

The organisation is set up under Canadianlaw. The representatives formallyaccepted the By-Laws, with certainamendments, and three officers wereformally voted in: Kate Farnell (ButterflyThyroid Cancer Trust, UK) President,Joan Shey (Light of Life, USA) Vice-President, and Rita Banach (ThyroidCancer Canada) Treasurer.

Judith writes: ʻAfter the formal AGM eachof the representatives gave a shortpresentation about their organisations andI presented a brief overview about theBTF and HPTH UK as well as distributingcopies of our literature.

ʻIt was amazing to have this opportunity tonetwork with representatives of otherthyroid cancer patient organisations and tolearn about their work.ʼ

The TCA plans to undertake regularpatient surveys, in collaboration withclinicians, with the aim of publishing theresults in a peer reviewed journal.

The TCA hopes to expand to includeorganisations from other parts of the worldand plans to meet every year, whereverpossible to coincide with a majorprofessional meeting. The next meetingwill be held during the European ThyroidAssociation meeting which will be takingplace in Pisa, Italy, in September 2012.

Teamwork - from left to right Judith, Lorraine, and Lin

Representatives of 11 national organisations at thefirst AGM of the Thyroid Cancer Alliance

FUNDRAISING ANDDONATIONSIf 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 publish it inBTF News and the BTF website.

The Big BTF Summer Walk!We would like to say a huge thank you toeveryone who took part in the Big BTFSummer Walk!

At the start of the summer we asked oursupporters to organise their ownsponsored walks to raise money for theBTF, and we were overwhelmed with theresponse we received from across thecountry.

So far we have received an incredible£1,874.50 in sponsorship.

The Harrogate Stray Ladies (the BTF HQteam) opened the BTF Big Summer Walkwith their walk on 21 June 2011, whichraised £125. (See BTF News 78 .)

This was followed by a walk organised byGlenda Shepherd around Walsham LeWillows, Suffolk, on a lovely sunnySunday. The group raised a fantastic£365.50. See BTF News 78 for story andmore photos.

Harrogate Stray Ladies try to work out where theyʼreheading to ...

Glenda and friends

Continued on page 6


18-year-old Fiona Iddon led a walk fromOrmskirk to the Leeds and LiverpoolCanal. Her group, named ʻThe OrmskirkOwlsʼ, included her sister, grandparentsand her grandparentsʼ walking group.

Fiona was diagnosed with a thyroiddisorder five years ago. She and TheOrmskirk Owls raised £474 for the BTF.

Catherine Lomax-Boyeson, 36,organised a walk along the river Ouze inYork from Homestead Park to MillenniumBridge and back.

Catherine is a mum of two children agedfive and eight, and works as a staff nurse.She was diagnosed with thyroid cancer inJuly 2004. Along with her family andfriends, she raised £498.

Catherine said: ʻHaving been diagnosedwith thyroid cancer in 2004, Iʼve found theBTF a great support. I find the newsletterprovides invaluable information andsupport and the telephone contacts arevery helpful. So I wanted to givesomething back to a charity that helped(and still does) me and my family. Weenjoyed the lovely weather and the kidsenjoyed the lollies at the end.ʼ

Janet Hopper, along with her husbandTerry and beloved pooch Basil, took partin a four-mile walk at Kirkburton,Thunderbridge, and raised £100 for theBTF.

Janet was treated for thyroid cancer over25 years ago and is still going strong.

She said: ʻI am grateful for the work andsupport of the BTF.ʼ

Cousins Sharon Middleton, Emma Wardand Amanda Stinson raised an incredible£712.50 by organising a five mile walkfollowing the Blackwater Rail Trail fromMaldon to Witham in Essex.

Sharon suffers from hypothyroidismcaused by Hashimotoʼs Disease, Amandahas hyperthyroidism caused by GravesʼDisease and Emma, along with her sisterand father, also have thyroid disease.

The three ladies were joined on the walkby Sharonʼs husband Wayne and their 10-year-old son Olly, Sharonʼs mum Janet,Amandaʼs mum Jane and Emmaʼs partnerMartin.

Sharon said: ʻThe weather was extremelykind to us; warm and sunny but rain soonarrived once weʼd finished the walk - howlucky we were!

ʻIt seemed appropriate to start the walkfrom the Tesco Superstore in Maldon.Special thanks must go to Lucy Cummins

(Community Champion) at TescoMaldon who kindly donated refreshmentsfor the walkers.

ʻThank you also to Maldon District VintageTractor & Engine Club for your generouscharity donation, and to all our friends,work colleagues and family members whohave supported us too!

ʻWe all enjoyed the walk very much andwe hope that we have been able to raiseawareness for the BTF and the amountwe have raised will help in some way.ʼ

Christine Jackson also raised £95 byorganising her own walk.

Next year we will be opening the Big BTFSummer Walk on 21 June and it will rununtil 21 September. Keep an eye out formore information on our website and inthe newsletter!

British ASICS London 10kRun Simey Coombs, Richard Coombs,Allison Duggal, Tony Megwai and LindaSomerville together raised a fantastic£465 by taking part in the 2011 BritishASICS 10k London Run on 10 July.

Thank you to all our participants.

A big thank you to all ourfundraisers!Phoebe Baker who raised £144 by takingpart in the Moonlight Colourthon, andHarriet Bridgland who raised £14 bytaking part in the Sunlight Colourthon.

The two events are sponsored walkswhich take place in Southend. Participantsin the ʻMoonlight Colourthonʼ walk a half

The Ormskirk Owls

Catherine with family and friends

ʻOn the Trailʼ – Sharon Middleton with friends. Thelarge BTF T-Shirt that was sent in the registration packwas worn by ʻRoadkillʼ the groupʼs raccoon ʻwalkmascotʼ.

Janet and Terry Hopper with Basil


London 10k run 2012

The BTF will have places in the2012 British ASICS London 10kevent. Entry includes chip timing andofficial photographs.

The run will take place on 15 July,twelve days before the OlympicGames, and much of the route willbe used for the Olympic marathon.

We already have two runners signedup for 2012. If you would like a placeplease phone the BTF HQ on 01423709707.


marathon (13.1 miles) at night and areencouraged to dress brightly. This yearʼsevent set off from Chalkwell Park on 2 July2011.

The Sunlight Colourthon is aimed at theunder 16s or anyone who feels the halfmarathon is a challenge that bit too far.The ʻSunlight Colourthonʼ takes placeearlier the same day, with the challengebeing to complete as many laps aspossible of a predetermined circuit inChalkwell Park within a given time.

Sarah Nally who raised £72.50 by takingpart in the Cardiff Half Marathon on 16October.

The Davies Family who raised amagnificent £1,890 by taking part in theGreat North Run on 18 September.

Eifion Davies took part in the main event,while son Sean, 15, and daughter Ella,10, both ran in the Junior North Run whichis a 4km/2.5 mile route.

Debbie Davies, who had also planned ontaking part in what would have been hersecond Great North Run, unfortunatelyhad to pull out as she was undergoingtreatment for thyroid cancer.

Debbie said: ʻI was very proud to havebeen able to keep Ella company and runher race with her, which she completed ina very respectable 30 minutes. Sean wasvery pleased to have run his in a verycompetitive 16 minutes, which we were allvery proud of. I think they may have gotthe running ʻbugʼ now, as the atmosphereand crowd support was so amazing!!!

ʻThe real challenge though to be fair, wasfor Eifion who faced the 13.1 mile route inthe Great North Run. It was his very firstevent of any kind, and we were extremelyproud to watch him cross the finish line ina fantastic time of 2hrs 17mins. Hethoroughly enjoyed the whole experience,and is already planning next yearʼs run,which hopefully I will be able to take partin too!ʼ

Paolo Rossi who took part in the BristolHalf Marathon on 11 September andraised £69.

KirstyRussell whotook part inthe ʻRun tothe Beatʼmarathon - ahalf marathonwith livemusic playedaround thecourse whichstarts andfinishes at the

O2 arena andtakes the runners around Greenwich.

Kirsty said: ʻI was diagnosed with Gravesʼdisease in March after Iʼd already signedup to participate in my first half-marathon.The day was a lot of fun. It was very hotand with 17,000 people running, verybusy!

ʻI struggled for the last four miles butsuccessfully completed the run in twohours and 28 minutes which was withinmy target of two and a half hours! It was agreat day and I look forward to taking partin it next year.ʼ

Gemma White who raised £243 by takingpart in the Goodwood Roller Marathon inAugust 2011.

Gemma said: ʻThe marathon was a greatday! I was hoping to complete in less thanthree hours and my official time was twohours 48 minutes, which I was reallypleased with as I didnʼt feel tired until thelast lap!

ʻAll of the skaters from my team did reallywell and we raised a bit of money forvarious charities. Since taking part in themarathon, Iʼve also been selected torepresent Ireland in the first ever RollerDerby World Cup, which is being held inToronto this December, so Iʼm still trainingas hard as I was before the marathon!ʼ

Cara Woodward who raised £50 byselling cakes at school.

Steve Robb who completed the BUPAGreat Edinburgh Run in glorious conditions(wet and a bit wild!) on Sunday 2 October,in a time of one hour and four minutes.

Steve raised an incredible £650, exceedinghis £500 target.

He said: ʻI would like to thank all those thatgave so generously, who I couldnʼt havedone this without and hope I did themproud. My daughter Eilidh, who was bornwithout a thyroid, came along to watch andI thoroughly enjoyed the event. I think thismay have started a bug. Iʼm alreadyplanning my next challenge!ʼ

Matthew Cannings who raised a massive£1,515 at the Bristol Half Marathon on 11September 2011.

The Notts/Derby group who donated £33raised from a tombola organised by localcoordinator Bridget OʼConnor andmembers of her group at the Ashfield Showduring summer.

Donna Reed, BTF staff, who raised £130from donations in lieu of payment for theyoga classes she teaches.

Future fundraisersNeil Prentice, husband of BirminghamLocal Coordinator Janet Prentice, hasvolunteered to raise funds for the BTF bytaking part in a 10 day cycle from LandʼsEnd to John OʼGroats during May 2012.

Neil will cycle 100 miles a day to completethe task.

DONATIONSMany thanks for your generous donations.We are grateful for them all, includingthose donated by members at the time ofjoining BTF or at renewal time, which aretoo many to list here.

Judith Dryhurst donated £100 on behalfof the Newcastle Group for the BTFResearch Fund.

The Davies family

Gemma White

Steve Robb and daughter Eilidh

Kirsty Russell

Continued on page 8


Two BTF members from Lancashire, whowere unable to attend the Waddow Lodgeopen garden event in May, kindly madedonations: Mrs E Holgate - £20 and MrsA Yates - £50.

Dr Levey, from Norfolk, kindly donated£50.

Elizabeth Barber donated £25 raisedfrom ʻa tremendously enjoyable handbellringing sessionʼ.

Lynn Mansell donated £120 in lieu ofpresents for her 40th birthday.


IN THE MEDIABTF letter in the Observerabout Roger Ebertʼs battlewith cancerʻRoger Ebert is regarded as one of thegreatest film critics in the world. But afterbeing diagnosed with thyroid cancer in2002, he was left unable to speak, eat ordrink...ʼ read the dramatic opening to anarticle in the Observer on 6 November.

The article itself is an extract from RogerEbertʼs new book, Life Itself, where heexplains how his life has been changed.Not by thyroid cancer however, but by arare form of salivary gland cancer whichhe was treated for in the 1980s and whichrecurred a few years ago after he hadmeanwhile been successfully treated forthyroid cancer.

Roger Ebert has had a difficult cancerjourney and despite that has remainedcourageous and optimistic. But we did feelthe introduction (which was presumablywritten by a sub-editor on the newspaper)was misleading, and wanted to reassurethe public that thyroid cancer is, usually,highly treatable, and that it was notresponsible for his disfigurement.

Janis Hickey and Judith Taylor wrote tothe Observer to point out the error, andthe letter appeared the following week.Here is the text of our letter (which waspublished on 13 November with somecuts):

ʻDear Editor,

ʻWe would like to congratulate you onpublishing the very candid and movingarticle by the American film critic, RogerEbert, in yesterdayʼs Observer, about hisbattles with thyroid and salivary gland

cancer, but at the same time ask you toreassure your readers by correcting themisleading article subheading and thestatements in the accompanying article byRachel Cooke.

ʻThyroid cancer is highly treatable asRoger Ebert states in his article, andindeed in his own case he was able toresume normal life after treatment. It wasnot his treatment for thyroid cancer thatleft him unable to speak, eat or drink. Byhis own account, he was diagnosed with arare type of cancer of the salivary glandsin the 1980s which came back some 20years later, a few years after he hadmeanwhile been successfully treated forthyroid cancer. He describes theunfortunate story of how he came to haveextensive facial surgery for his salivarygland cancer, with the resulting loss ofpart of his jaw and ability to eat, drink andspeak, in detail in the article.

ʻUnfortunately the incidence of thyroidcancer is growing in the UK and it is nowthe 18th most common cancer amongwomen. For more information see ourwebsite www.btf-thyroid.org and ourbooklet Thyroid Cancer – For Patients, ByPatients (2nd revised edition 2010).ʼ

See also Letters and Comments, page 13.

Sources: Roger Ebert ʻIʼm happy I donʼtlook worseʼhttp://www.guardian.co.uk/film/2011/nov/06/roger-ebert-cancer-life-itself downloaded6 November 2011 and Rachel CookeʻRoger Ebert: ʻIʼm an optimistic personʼhttp://www.guardian.co.uk/film/2011/nov/06/roger-ebert-cancer-life-cinema?intcmp=239 downloaded 6November 2012

Thyroid cancer in the news

Thyroid cancer was in the news inSeptember when two of our associatedorganisations held special events to raiseawareness during Thyroid CancerAwareness Month.

In Gateshead, the Butterfly ThyroidCancer Trust organised a Neck Check inthe Metrocentre, on 24 September.Medical professionals from The RoyalVictoria Infirmary, Freeman Hospital, TheNorthern Centre for Cancer Care (NCCC)Newcastle upon Tyne and SunderlandRoyal Hospital were there throughout theday to carry out free neck checks and talkwith visitors. The event was featured onTyne Tees TV and nearly 1,000 peopleturned up for neck checks. Around 40people were referred for furtherinvestigations.

In Cardiff, the Thyroid Cancer SupportGroup Wales distributed leaflets in QueenStreet. Helen Hobrough, Chair of ThyroidCancer Support Group Wales and herselfa thyroid cancer survivor, and Dr LauraMoss, Consultant Clinical Oncologist atthe Velindre Cancer Centre, Cardiff andthe groupʼs Honorary President, wereinterviewed before the event on WomanʼsHour.

TRUST study will look at howto treat subclinicalhypothyroidismResearchers from five Europeanuniversities are collaborating on aresearch trial to try to understand howpeople with subclinical hypothyroidism canbest be treated.

The study is called ʻThyroid HormoneReplacement for SubclinicalHypothyroidism Trialʼ (TRUST). It isfunded by a 6 million Euro grant from theEuropean Unionʼs 7th FrameworkProgramme (FP7) and involves scientistsfrom Ireland, Scotland, The Netherlandsand Switzerland.

The researchers will follow 3,000 olderpeople with subclinical hypothyroidism forfive years. Half will be placed on thyroidreplacement hormone (levothyroxine)while the other half will be given aplacebo. The two groups will then bemonitored for five years to see how theyrespond to treatment.

Reported in: Medical News Todaydownloaded 27 Nov 2011http://www.medicalnewstoday.com/releases/238100.php

ʻOver-the-counter thyroidsupplements put lives at riskʼsay researchersResearchers in the United States havefound that people may be putting theirhealth at risk if they use thyroidsupplements available over the counter.

The study, which was led by Dr VictorBernet of the Mayo Clinic, Florida, waspresented at the American ThyroidAssociation (ATA) Meeting in October, andlooked at ten commercially available ʻover-the-counterʼ (OTC) thyroid supplementswhich were purchased from the localstores and online distributors.

Dr Bernet became interested when, aschairman of the ATA Public Health

RESEARCH IN THENEWS


committee, he heard reports of abnormalthyroid test results in people who hadused OTC thyroid supplements.

The researchers measured the amount ofthyroxine (T4) and triiodothyronine (T3) ineach sample.

Most of the supplements studiedcontained clinically significant amounts ofT4 and T3, some of which exceededcommon treatment doses for an under-active thyroid. This potentially exposespatients to the risk of symptoms of anover-active thyroid, or hyperthyroidism,causing an increase in heart rate, heartirregularities and palpitations, say theresearchers.

Nine of the ten contained T3 and five ofthem would deliver as much, or more, thanfifty percent of the total amount of T3produced by the body daily.

Four of the ten supplements contained T4,and some of those contained a dose thatcould be twice as much as what an adultneeds each day.

Thyroid ʻsupplementsʼ are currently notregulated in the USA.

ʻThe results emphasise the importance ofpatient and provider education regardingthe use of OTC herbal supplements andhighlight the need for greater regulation ofOTC supplements potentially dangerousto the publicʼ the researchers conclude.

Source: Abstracts from the 81st Meetingof the American Thyroid Association,Thyroid, 21 Suppl 1 2011

Reported in: Punsky K ʻUse of OTCthyroid pills is risky says Mayo Clinicresearcherʼ 27 Oct 2011 Eurekalertdownloaded 27 Nov 2011http://www.eurekalert.org/pub_releases/2011-10/mc-uoo102711.php

Dr Mark Vanderpump, ConsultantPhysician and Honorary Senior Lecturer inDiabetes and Endocrinology at the RoyalFree Hospital, London, comments: ʻThisinteresting study has raised concernsregarding the use of desiccated (dried)animal thyroid preparations that areavailable over the internet. It is not knownwhether these are the preparations beingobtained by patients in the UK. Animalthyroid extracts are not physiological asthey contain T4 to T3 in a ratio ofapproximately 3:1. The ratio of T4:T3secreted by the human thyroid is 14:1.This means that patients on these extractsmay be exposed to much higher levels ofT3 with potential deleterious toxiceffects on the bones and the heart.ʼ

New technique ʻlights upʼparathyroid glands duringsurgeryLocating the parathyroid glands duringthyroid and parathyroid surgery can be amajor challenge. Now, a team atVanderbilt University, Nashville,Tennessee, USA has discovered a way toʻlight upʼ the parathyroid glands. Thetechnique uses near-infrared (NIR)autofluorescence during surgery.

Being able to identify the parathyroidglands during surgery could be a big helpin reducing damage to or removal of theglands during surgery, which cansometimes lead to life-longhypoparathyroidism and dependency oncalcium and Alfacalcidol tablets.

The discovery was sparked by a surgeryresident, Lisa White, who took part in herfirst neck surgery in 2007. The parathyroidglands were hard to find and after thesurgery she searched the literature to seeif there were techniques for visualisingparathyroid tissue. Her search led to herworking with Dr Mahadevan-Jansen whohad developed an optical technique fordetecting liver cancer. The team has nowpublished its findings in the Journal ofBiomedical Optics.

Source: Paras C, Keller M, White L, PhayJ, Mahadevan-Jansen A. Near-infraredautofluorescence for the detection ofparathyroid glands. Journal of BiomedicalOptics. 2011 Jun; 16(6):067012

Reported in: Salisbury DF. Discovery ofparathyroid glow promises to reduceendocrine surgery risk. Eurekalert 20 June2011 downloaded 27 Oct 2011http://www.eurekalert.org/pub_releases/2011-06/vu-dop062011.php

Professor William Fraser, Professor ofMedicine at the University of East Angliaand an authority in metabolic bonedisease, comments: ʻThis is of clearinterest to people with thyroid andparathyroid disease. The technique doesnot cause changes in thyroid tissue andthe authors are not entirely sure what iscausing the fluorescence in parathyroidtissue so significant work is still required. Itcould be argued that during thyroidsurgery a quick look would be possible tosee where the parathyroids are lying toensure they are not accidentally damagedbut I think a proper trial in thyroid surgerywould be required before it could bestated this was of value in reducing theincidence of hypoparathyroidism postthyroid surgery. I am not clear on how longit takes to use this technique to identify the

glands (parathyroid glands that areembedded in the thyroid - Ed). Intrathyroidal glands are unlikely to beidentified by this technique although theabsence of a fluorescing gland might alertthe surgeon to the possibility.

Study finds wide variance inaccessing orbitaldecompression services inEnglandA study just published in the journal Eyeprovides evidence of a wide variance inaccessing services for orbitaldecompression in England.

It also shows that a large number of theseprocedures take place in hospitals withlow volume of work - ten or fewerprocedures a year.

Orbital decompression is the partial orcomplete removal of one or more of thefour walls of the orbit (eye socket). Thisprocedure is primarily performed forpatients who have Gravesʼ disease withthyroid eye disease, also known asGravesʼ orbitopathy (GO).

The research team - members of TEAMeD(Thyroid Eye Disease AmsterdamDeclaration Implementation Group UK) -set out to obtain data on orbitaldecompression procedures performed inEngland, classed by hospital and locality,to evaluate regional variation in care.

The data were examined over a two-yearperiod between 2007 and 2009 andanalysed by hospital and primary caretrust.

Nearly half (44%) of these operations tookplace in hospitals with an annual workloadof ten or fewer procedures.

When the researchers looked at the samedata by primary care trust they found analmost 30-fold variance in the rates ofdecompression performed per unitpopulation.

The researchers conclude: ʻA Europeanconsensus on the management of Gravesʼorbitopathy recommended that patientswith Gravesʼ orbitopathy should bemanaged in specialist centres withappropriate experience and expertise, andthis is echoed by the AmsterdamDeclaration (see BTF News 71).

ʻOn the basis of our data on orbitaldecompression, England appears to fallshort of this expectation.

ʻGuidance on care pathways forpatients with Gravesʼ orbitopathy might

Continued on page 10


contribute significantly towards promptassessment of this condition in specialistcentres and improvement in clinicaloutcomes.ʼ

The research team consisted of P Perros,T Chandler, CM Dayan, AJ Dickinson,P Foley, J Hickey, CJ MacEwen, JHLazarus, J McLaren, GE Rose, JM Uddinand B Vaidya on behalf of TEAMeD UK(Thyroid Eye Disease AmsterdamDeclaration Implementation Group UK)

Janis Hickey, BTF Director and one ofthe studyʼs participants, says: ʻTo ourknowledge this is the first geographically-based study of orbital decompression,highlighting the irregular provision andperformance of decompressive surgery forthyroid eye disease. Its cogent message isthe first step to enabling equal access toservices for all TED patients.ʼ

Source: Perros P et al. Orbitaldecompression for Gravesʼ orbitopathy inEngland. Eye advance online publication,9 December 2011


BTF ResearchNews

We are delighted to announce that theBTF Research Award for 2011 has beenawarded to Dr Peter Taylor BSc MBChBMRCP SCE (Diab/Endo) for a studyentitled ʻThyroid Function and BodyComposition in Children: cause or effect?A study using Mendelian Randomisationʼ.

Dr Taylor is a Welsh Clinical AcademicTrainee - Diabetes and Endocrinology - atthe Centre for Endocrine and Diabetesand Sciences, University Hospital Wales.

Dr Taylor writes: My interest in thyroiddisease started in 2006 when I worked as aSenior House Officer (SHO) in Diabetesand Endocrinology at the Edinburgh RoyalInfirmary under Dr Anthony Toft.

I had one of those wonderful ʼlight bulbʼmoments in medicine, during a very laterunning winter clinic.

Every patient I had seen had had verydifferent symptoms, ranging fromworsening mood and energy levels todifficulties with their weight and bowels.Many patients also commented that theystill felt ʼnot quite rightʼ despite havinghormone levels that were in the ʼnormalrangeʼ.

As thyroid hormones control manyprocesses including heart rate, cholesterollevels, bone growth, brain development,mood, and body weight I wanted to explorethe health impact of this modest variation inthyroid hormone levels and if it could bebetter treated. There is now increasingevidence that these differences mayultimately play an important role indetermining which individuals will go on todevelop heart disease, thin bones(osteoporosis), obesity, depression andother important medical conditions.

As a result of my ʻlight bulbʼ moment, Idecided to undertake a career in academicmedicine specialising in thyroid-basedresearch - a far cry from my childhoodambitions of being an astronaut.

I relocated to the South West and everycolleague I discussed my research careerwith recommended I approach ProfessorColin Dayan.

Through him I forged links with the AvonLongitudinal Study of Parents and Children(ALSPAC), the largest and most detailedstudy of children from birth to age 18 in theworld. It holds detailed information onalmost 15,000 children and their parents. Iteven has a detailed collection of thechildrenʼs teeth and hair. These childrenhave been repeatedly interviewed,prodded, scanned and even had detailedstudies undertaken of their DNA.

Our department has special expertise instudies of this natureand this has givenme the opportunity to explore the geneticdifferences between people that determinea personʼs thyroid hormone levels and howin turn this influences their health.

Most excitingly we are also able to usethese genetic techniques to study theintracellular thyroid hormone pathway(inside cells) which is not possible withtraditional blood tests and there isincreasing evidence that this intracellularpathway may influence mood, osteoarthritis

and responsiveness to thyroid hormonereplacement therapy.

Overall this work will allow greaterunderstanding of how our genes changeover childhood and how this may impact onour lifetime chances of developing thinbones fractures and even obesity. It mayalso lead to an adjustment in how wemonitor thyroid hormone replacement inchildren.

Itʼs a project that will certainly keep mebusy and more importantly keep my lowboredom threshold at bay (I still read bookswhile cleaning my teeth - and yes itʼsdefinitely easier with a Kindle).

Ultimately from our research we propose toidentify individuals who might benefit fromthyroid hormone supplementation based onanalysis of both their serum hormone levelsand their genetic profile.

When Iʼm not researching into thesegenetic polymorphisms, or writing researchgrants I can generally be found worryingabout the genetic determinants of the twoillnesses that run in my family (diabetesand supporting Man City) the last is sadlyincurable I fear, but at least of late it hasnot been too bad, bar the actions of acertain Mr C Tevez.

Once again a very big thanks to everyonein the British Thyroid Foundation for thissupport …

… and if anyone can recommend how toget toothpaste off a Kindle screen pleasedo let me know!

Thyroxine replacement andpregnancy

In July 2010 NikkiKieffer submittedan idea for a studyto look into howaware doctors andwomen are aboutthe currentguidelines aboutthyroxinereplacement inpregnancy. She

was awarded The Evelyn Ashley SmithAward for a nurse with specialist interestin thyroid disorders. She has nowcompleted her study and has provided uswith the following report.

Nikki Kieffer writes: Thyroxine isessential for the development of a babyʼsbrain and nervous system.

In pregnancy the babyʼs own thyroid glandonly begins to produce thyroid hormonesafter the twelfth week. This means thatPeter Taylor with his son Miles

Nikki Kieffer


during the first twelve weeks of pregnancythe only source of thyroxine available tothe developing baby is from the mother.

It is therefore essential that the mother ison an adequate dose of thyroxinereplacement to ensure that there isenough available for both the mother andthe developing baby.

Guidelines for the management ofhypothyroidism in pregnancy suggest thatwomen on thyroxine replacement shouldbe having their dose of levothyroxineadjusted to its optimal level beforepregnancy or at the latest as soon as theybecome pregnant. To be sure that themother is on the right dose of thyroxinereplacement during pregnancy it issuggested that, once the levothyroxinedose has been adjusted to keep theThyroid Function Tests (TFTs) within therecommended levels, then TFTs should bechecked at least once per trimester(twelve weeks).

Whilst we do have a dedicatedEndocrine/Antenatal clinic in our hospital itis rare for women on levothyroxine to bereferred to this clinic until they have beenseen by the community midwife at twelveweeksʼ gestation, with the result that theyare rarely seen until they are well into theirsecond trimester of pregnancy. It isunclear as to how they are beingmanaged in early pregnancy and bywhom.

As only very small numbers are referred tothe clinic it seems that some women arenot being referred at all and it is unclearas to who is managing these patientsduring their pregnancies.

This prompted two questions.

The first question was: are GPs managingthese women and if so are they aware ofand using the current guidelines?

The second question was: whetherwomen on levothyroxine are aware of theneed to optimise their levothyroxine beforeand during pregnancy and whether theyare being advised appropriately.

The initial study was done via theLeicestershire Thyroid Register whichcurrently monitors thyroid hormone levelsin patients on thyroxine replacement andadvises on replacement doses directly tothe patient by post.

Questionnaires were sent to 100 womenof child-bearing age and to their GPs.

The women were asked questions toidentify whether they had been more

closely monitored in pregnancy andwhether their dose of levothyroxine hadbeen changed during pregnancy, and if soby whom.

The GPs were asked about theirawareness and use of the guidelines.

This initial study showed a distinct lack ofknowledge in both GPs and patients.

The questionnaires were then updatedwith more specific questions in someareas and were sent out to over 500women who had not previously beencontacted, and to 210 GPs.

Sixty five per cent of the 70 GPs whoreplied had no knowledge of anyguidelines. Only a small percentage wasaware of the target values for TFTs duringpregnancy and when levothyroxine dosesshould be changed. Nearly half said theywould leave monitoring and changes oflevothyroxine dose to the EndocrineAntenatal clinic - a worry given the latereferral to this service.

Two hundred and thirty two replies werereceived from the patients. Just under halfof these (44%) had either not beenpregnant or had not been on levothyroxineat the time of their pregnancy. Of theremainder about half had been advised tochange their dose of levothyroxine inpregnancy and about one third had beenadvised to increase the frequency ofthyroid blood tests.

From the replies to these questionnaires itis clear that the knowledge of how tomanage thyroxine replacement inpregnant women is poorly understood byGPs, and women on thyroxinereplacement are often not being managedduring their pregnancies as recommendedin the guidelines.

As a result of these findings we plan todraw up local guidelines for GPs and toadvertise more widely the availability ofexpert advice from the EndocrineAntenatal Service.

We also plan to write a quick guide forwomen on what to do with their thyroxinereplacement when planning a pregnancyand the importance of increasedmonitoring and adjustment of dosesduring pregnancy. We plan to send thisguide out via the thyroid register.

I am grateful to the British ThyroidFoundation for giving me the opportunityto carry out this study. I would also like tothank Dr James Falconer-Smith for hishelp in identifying the women eligible forthis study from the thyroid register. I am

sure that, as a result of this study,hypothyroid women in Leicestershire willbenefit from improvements made to themanagement of women on thyroxinereplacement during pregnancy.

BTF Research Award 2012The first BTF Research Award wasmade in 1997. The value of the annualaward is up to £10,000 to supportmedical research projects. The awardcan be used to supplement existingprojects or help get new researchideas started. Funds will be awardedfor consumables, running costs andequipment.

We invite applications for researchthat is specifically directed to the studyof thyroid disorders or investigationsinto the basic understanding of thyroidfunction. The deadline is 31 August2012. Full details are on the BTFwebsite.

The BTF is an NIHR partnerorganisation in respect of its researchawards funding stream. Studiesfunded through this funding streamare eligible for inclusion in the NIHRClinical Research Network Portfolioand therefore able to access NHSsupport via the NIHR ClinicalResearch Network infrastructure.

Evelyn Ashley SmithAward for NursesIn 2012 the BTF is offering up to£1000 to help a nurse, endocrinenurse, midwife or healthcareprofessional with a specialist interestin thyroid disorders with educationaland/or travel costs.

The amount may be awarded eitheras a single award to an individualbased on merit for educationalpurposes of up to £1000, or dividedinto two travel awards of up to £500each.

The Evelyn Ashley Smith Award canbe used to: l support training needs including

travel costs to attend conferences;l support a specific project lasting

one year; orl reward a piece of work that has

already been completed, but not yet published.

The deadline is 1 July 2012. Fulldetails are on the BTF website.


Danielle Milbank was diagnosed withcongenital hypothyroidism in the 1980swhen she was six weeks old, and hastaken medication all her life. She is now ayoung mother and had to be monitoredclosely through her pregnancy. Danielleʼsbaby, Joseph, is a very healthy boy anddoes not have thyroid disease. Here isDanielleʼs story…

I was diagnosed with hypothyroidismwhen I was around six weeks old, at atime when testing at birth wasnʼt carriedout. My parents were concerned that Iwasnʼt active or growing quickly, and ourGP suggested a test. As a baby I wasgiven levothyroxine in liquid form, but Ionly remember later on having two pillscrushed and put in with cereal and milk.

I quite liked the little ritual and though Iwas aware of my condition, I didnʼt see itas an illness, and certainly didnʼt feel Iwas different from my friends. However,when on holiday, for example, I wasfrustrated when being made to getcompletely dry after swimming and beforeI could go and play, as the difficulty inkeeping warm would make me shiveruncontrollably.

On the whole, I had no fear of doctors,hospital or needles, and apart from a briefphase of getting almost hysterical, I washappy to go for blood tests - I still have aninterest in medicine which I think startedthen. I certainly felt well-informed and was

never worried by the idea of havinghypothyroidism as it was always

clearly explained that it is treatedvery simply with daily tablets.

As a teenager I had phases ofpoor compliance, which wereserious enough to affect myhealth. The resultingforgetfulness probablyexacerbated the problem andalthough the doctors wanted tomanage my hypothyroidismcarefully during that time, inretrospect I donʼt feel I took thecondition seriously. In my 20s Iwas still guilty of forgetting adose here and there, although Inever felt the symptoms ofunder-replacement particularlybadly. On one occasion my GPremarked that he was verysurprised to see a very livelyand energetic person in front ofhim given the very low T4 andvery high (20-50) TSH levels on

the recent blood test.

When my husband and I were tryingto conceive I discovered that it could

take longer as a result of the condition, butI fell pregnant within a year of trying and Ifound it helpful to read about otherwomenʼs experiences of being hypo andhaving children. Of all the things I could dofor my babyʼs health, being diligent withtaking levothyroxine would be the mostimportant, and since I conceived, myattitude has been different as itʼs no longerjust myself Iʼm responsible for.

I was under consultant care throughoutpregnancy and had frequent blood testsand extra growth scans, which thankfullyshowed that the baby was growing anddeveloping normally.

In February I gave birth to Joseph, aperfect little baby boy (7lb 13oz). When itcame to his heel prick test results I wasconfident that if he did havehypothyroidism, it would be fine and wewould know how to make sure he washealthy. He isnʼt hypothyroid, and Iʼvesince found out that the form I have isnʼtthought to be hereditary.

With good GP care and access to clearinformation about the condition, and how itaffects pregnancy and the growing baby,starting a family has been the sameadventure as anybody elseʼs, andhypothyroidism hasnʼt caused us anyworry. Joseph has been successfullybreastfed for six months and is a veryhealthy boy with no allergies or otherissues, and is an exceptionally smiley andgood-natured baby! Weʼre very lucky.

Letters andComments

Hypo but no symptomsSR asked: I am a 64-year-old female whoretired four years ago. Recent blood testshave shown low thyroid function.I am perplexed as I have none of thesymptoms and feel just as vivacious andhealthy as I always have (lucky for me) andthe condition of my hair is also good.

I have managed to lose weight (two stone)over the last six months which should havebeen harder if my metabolism is slow.

Is it possible the test result could be a sign ofsomething else, and what is the danger if Icontinue untreated as I hate taking drugs ofany kind.

Our Medical Advisor replied: Sometimesthe level of hypothyroidism is so slight thatthere are no obvious symptoms and it canonly be detected by blood tests.

The risk of hypothyroidism increases withage, particularly for women, and can causemany different symptoms, such as feelingtired, weak or depressed, dry skin and brittlenails, not being able to stand the cold,constipation, trouble thinking clearly, muscleweakness, cramps and aches.

Symptoms occur slowly over time and mayincrease if left untreated. At first you mightnot notice them, or you might mistake themfor normal aging.

People usually see their doctor if they havesymptoms like these that get worse or wonʼtgo away.

The aim of treatment is to restore your healthand minimise future symptoms by gettingyour Thyroid Stimulating Hormone (TSH)back within the reference range.Levothyroxine is a synthetic version ofthyroxine produced by the thyroid gland. It isvery pure, has negligible side-effects, andcauses virtually no allergies because it issimilar to natural thyroxine.

SR replied: Thank you so much for yourresponse and the information which isthorough and sympathetic to my plight,without being patronising.

Conflicting symptoms andsomething stuck in my throatPF asked: I have had an under-activethyroid for years and have been treatedsuccessfully with levothyroxine.

Recently I am getting conflicting symptomsof both hyperthyroidism and hypothyroidism.On one hand I am feeling hot, nervy, finding

MY STORY

Danielle Milbank with her son, Joseph


it hard to concentrate, have difficulty gettingto sleep, and have a feeling of extremehunger and if I donʼt get something to eatthen I feel very faint; on the other hand I amputting on weight and very tired and couldsleep in the afternoons.

I have a feeling that there is something stuckin my throat. I have had blood tests for mythyroid and a full blood count and all arenormal, but I know Iʼm not right and at themoment feel like Iʼm living half a life.

Our Medical Advisor writes:Werecommend that you discuss yoursymptoms, blood test results andlevothyroxine dosage with your doctor andtake advice.

The feeling of something stuck in the throatcould be significant and you should see yourdoctor for examination with a minimum ofdelay.

Your doctor should assess any swelling andwhether there is any evidence of growingthyroid nodules, and refer you to a specialistif necessary.

Most nodules and swellings are harmless,but it is always best to have them checked incase they are amongst the few that are moreserious.

It may be worth using a visit to your GP torequest referral and review by anendocrinologist if your GP does not seem tobe taking things forward.

What is the treatment forʻreverse T3ʼ?SF writes: I have been unwell for a numberof years with symptoms like weakness, lowblood sugar, tiredness and poor qualitysleep as well as very poor concentration. Ihave had various diagnoses such as MyalgicEncephalopathy (ME) and ʼSick Thyroidʼ.

My initial blood tests a few years ago did notindicate a thyroid issue but over a period oftime it was observed that the various thyroidindicators were swinging hugely within thereference range which I was told was notnormal for a man in his early 40ʼs.

A year ago I was put on levothyroxine as wellas Dehydroepiandrosterone (DHEA) andCoenzyme Q10 and hydrocortisone. Whilethere was some improvement I would stillʼcrashʼ quite regularly and sleep continues tobe a serious issue. A few months ago I hadfurther blood tests and it was subsequentlyrecommended that I increase mylevothyroxine to 100mcg which had animmediate negative effect. I felt farworse, and after a week I came off thelevothyroxine entirely. That did seem to helpas I had more clarity and felt physicallystronger although my sleep quality was stillpoor.

My consultant organised some veryspecialised blood tests as he now suspectsthat I am producing ʼReverse T3ʼ instead ofT3. He explained that in general T4 was

converted to T3 but they suspect that in mycase that was not happening and instead Iwas producing RT3, which may explain thatwhen I increased my levothyroxine intake Igot worse and produced way too much RT3.The blood test results should indicatewhether that is the case but I wonʼt have theresults until the end of the month.

In the meantime I have been put on 20mcgof TI-TRE [this is liothyronine or T3 - Ed]. Iʼmnot sure yet if that is helping or hindering.

Would the production of Reverse T3 causethe symptoms described above and what isthe general approach to addressing a casewhere too much RT3 is being produced?

Our Medical Advisor replies: Themeasurement of Reverse T3 (rT3) istechnically very challenging and currently noUK clinical laboratory has a reliable test.

Certain private laboratories offer rT3measurements, however it is not clear ifthese tests are able to discriminate rT3 fromT4 to a sufficient degree, and the assaysmay pick up total T4 and the results will bemisleading.

As far as we are aware, there is no acceptedand conclusive evidence in the clinicalliterature that rT3 tests have the requiredprecision to be meaningful.

On this basis there is no accepted generalapproach to using a T3 supplement basedon such assay findings.

We note that at present you are uncertainwhether your TI-TRE treatment is helping orhindering. Your symptoms may have othercauses. It is important that these are alsoconsidered in assessment of your symptoms,test results and physical and mentalcondition, and this may include screening forsleep apnoea.

Thyroid cancer in youngwomenCT wrote in response to the letter by JanisHickey and Judith Taylor in the Observer(see page 8): Thank you so much for writingto the Observer about the Roger Ebertarticle. The wording of your letter was almostword for word what I wanted to write myself. Iam sorry he had thyroid cancer, but as yourightly point out it was treated.

I wish they knew why thyroid cancer is onthe increase in young women. I wish mydaughter had not contracted thyroid cancerin 2004. She is well now, but she suffered asevere dislocation in her young life and hadher degree studies interrupted. She hasstarted back in higher education now but shestill suffers from anxiety and anger at the turnher life took. She is glad she is alive, butbeing young is sometimes overwhelmed bythe anger. I donʼt think she read theObserver article, but it could have added toher anxiety a lot due to the sloppy editing.

Our medical advisor replies: There isevidence of an increased incidence of

thyroid cancer in both men and women,though more marked in women. Thyroidcancer has always been commoner inwomen, so this gender difference is not asurprise. The increase in thyroid cancersseems to be small cancers and probablyearly stage, as many of the people were notshowing symptoms of thyroid disorders.There has been no rise in deaths fromthyroid cancer.

Thus, although one cannot be certain, theremay be a positive message. It is likely thatthe rise in incidence is at least partlyexplicable by higher awareness, and thatearlier diagnosis is enabling earliertreatment.

It is interesting that this rise in incidence hascoincided with much wider use of ultrasoundCT, MRI and PET scanning. There is nosignificant evidence that exposure toradiation, including from medical sources,could be a possible factor in the rise inthyroid disorders.

The sex difference is well established andmay be based on genetic or hormonalfactors, but it is not entirely clear why. It maybe that women are more health consciousand more likely to seek medical advicethan men.

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

Please address generalletters to the Editor, BTF News, TheBritish Thyroid Foundation, 3Devonshire Place, Harrogate, NorthYorkshire HG1 4AA or by email [email protected]

Please address medical queries to theMedical Enquiries Coordinator at theaddress above or by email [email protected]

Remember to include your membershipnumber.

Unless you state otherwise, we willassume that you consent to havingyour letter and reply published in thenewsletter. Medical queries will beanonymised.

Medical questions, whether or notintended for publication, will normallybe referred to one of our medicaladvisors, 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 withyour doctor.

You should not alter the recommendedtreatment issued by your personalphysician without their knowledge andagreement.


LocalGroups

Please check the BTF website for thelatest details about forthcoming meetings:http://www.btf-thyroid.org

BirminghamNOVEMBER: Our speakers includedAndy Turner PhD, a Senior ResearchFellow at the Applied Research Centre inHealth and Lifestyle Interventions atCoventry University. He introduced us toʻHOPE: A health and lifestyle coachingprogrammeʼ. Dr Penny M Clark,Consultant Clinical Scientist, QueenElizabeth Hospital Birmingham, guided usthrough the types and processes of ʻLabTestsʼ for thyroid disorders, and Dr NeilGittoes, a Divisional Director andConsultant Endocrinologist at the QueenElizabeth Hospital Birmingham presentedan overview of the over-active thyroid. Themeeting was well attended and veryinformative. NEXT MEETING: Date to beconfirmed. Meetings take place at YardleyBaptist Church, Rowlands, Birmingham,B26 1AT. Free Parking. DONATION:Small voluntary donation (£1).

CONTACT: Janet Tel. 0121 [email protected]

BoltonNEXT MEETING: Date to be confirmed.Meetings take place at Barlow Institute,Bolton Road, Edgworth, Bolton. PROGRAMME: Information will be postedon the website soon.

CONTACT: Carole Tel. 01204 [email protected]

Coventry

SEPTEMBER: This was the very firstmeeting of the BTF Coventry group withColin Baldyga, the newest BTF LocalGroup Coordinator. Donna Reed from

BTF HQ gave an overview of the nationalBTF organisation and Dr Sailesh Sankarpresented a very informative overview ofthyroid disorders. The meeting was verywell attended.

OCTOBER: At the October meeting weorganised our group. Several peoplecame forward to help run the group.

DECEMBER: Sonia Sandhu, ExpertPatients Programme, talked about howEPP helps patients to manage thyroiddisorders as long-term health conditionsand get the best out of care andtreatment. NEXT MEETING: Meetingstake place the first Wednesday of everymonth at Albany Club, Earlsdon Street,Coventry, CV5 6EG. There is very limitedstreet parking in the vicinity of the club.However, the club is well served by buses19 and 12 which operate from the PoolMeadow bus station. If coming by bus,visitors should alight at the City Arms i.e.the Wetherspoons pub located next to theEarlsdon island. The Albany Club isalmost opposite the City Arms. Disabledaccess is available. PROGRAMME:Patient support discussion.

CONTACT: Colin Tel. 02476 711577

EdinburghNEXT MEETING: The Edinburgh Groupmeets on the last Tuesday of the month at7.15pm (except school holidays or ifotherwise stated) at Liberton High School,Gilmerton Road, Edinburgh, EH17 7PT.

CONTACT: Margaret Tel: 0131 664 [email protected]

HerefordNOVEMBER: The Hereford Group held itslast meeting on 17 November at thePoint4. Denise Hannagan, Local GroupCoordinator, presented information aboutExpert Patients Programme, and twoobservers came from Link. We had threenew members join the group.

ʻI am sorry to let everyone know I will nolonger be able to coordinate the BTFHereford Local Group. I will continue tosupport BTF by remaining as a phonecontact. I have enjoyed my associationwith the BTF and look forward to passingon my knowledge gleaned from BTF tohelp people suffering from thyroidproblems.ʼ - Denise

If anyone is interested in taking over theBTF Hereford Local Group, please contactthe BTF main office on 01423 709707 oremail.

London

OCTOBER: Graham Williams, Professorof Endocrinology at Imperial CollegeLondon, President of the British ThyroidAssociation and BTF Ex-Officio Trustee,gave a fascinating talk about hisspecialism, thyroid and bones. Hisresearch into the molecular mechanismsof thyroid hormone action on bone isinternationally recognised and he wasrecently awarded the Society forEndocrinology Medal in recognition of hisoutstanding studies (see BTF News 77).His talk brought his cutting edge researchto life for thyroid patients and gave us allplenty to think about. He was also kindenough to answer questions for over anhour covering almost every aspect ofthyroid disorders. Gay Search, televisionpresenter and British Thyroid Foundationpatron, shared her experiences of hergoitre and full thyroidectomy from whichshe has made an excellent recovery. Onceagain we are grateful to the Royal Free forthe use of their room and would also liketo extend grateful thanks to GX Gallery ofCamberwell for lending us a beautiful littlewooden easel to display a small print ofAnna Knightsʼ artwork, Peacock Butterflyon Apple Blossom. Everyone whoattended agreed that they had found theevent useful and had learned somethingnew. NEXT MEETING: Saturday, 3 March,10am-1pm, at the Atrium, Royal FreeHospital, Pond Street, London, NW3 2QG.Car parking is limited and expensive. Fordirections and details of public transportplease visit www.royalfree.nhs.ukPROGRAMME: Details will be availableon the BTF website nearer the time.DONATION: Suggested minimum £2.

CONTACT: Lorraine Tel: 01843 579 793;[email protected]

First meeting of the Coventry group with Dr Sankarspeaking

Professor Williams and Lorraine Williams (no relation)reviewing the presubmitted questions

The BTF is very appreciative of our fantasticteam: employees, volunteers, members,professionals, doctors and nurses who help theorganisation to develop, as proved by oursuccessful activities over the years.

Patrons:Maria AitkenClare BaldingJenny Pitman OBELord Jamie BorwickMelissa Porter BA(Hons)Dr W Michael G Tunbridge MA MD FRCPGay Search

Trustees:

Nikki Brady BA(Hons)Angela Hammond Professor P Hindmarsh BSc MD FRCPFRCPCHMrs C InghamMr Geoffrey E Rose BSc MS DSc MRCP FRCSFRCOphthDr M Strachan MD FRCP(Edin) Mrs Judith Taylor BA(Hons)Mrs Eleanor Temple LLB (Hons)Barrister at LawMrs Dianne Wright RGN BSc(Hons)

Ex-Officio Members of the Trustees:

Professor G R Williams BSc MBBS PhD FRCP- President, British Thyroid Association

Solicitors:McCormicks Solicitors,Wharfedale House, 37 East Parade, HarrogateHG1 5LQ.Tel. 01423 530630

Newsletter Disclaimer:The purpose of the BTF newsletter is to provideinformation to BTF members.Whilst every effort is made to provide correctinformation, it is impossible to take account ofindividual situations. It is thereforerecommended that you check with a member ofthe 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 do notnecessarily endorse the views expressed inletters forwarded.

Medical comments in the newsletter areprovided by members of the medical professionand are based on the latest scientific evidenceand their own individual experiences andexpertise. Sometimes differing opinions ondiagnosis, treatment and management ofthyroid disorders may be reflected in thecomments provided, as would be the case withother fields of medicine. The aim is always togive the best possible information and advice.

If you have any comments or queries regardingthis publication or on any matter concerning theBritish Thyroid Foundation we would bepleased to hear from you.


Milton Keynes

AUGUST: The Milton Keynes group werefeatured in the Community Zone. DECEMBER: The group welcomed DrShiao Chan, Honorary ConsultantObstetrician and Lead Consultant for theEndocrine Antenatal Clinic, BirminghamWomenʼs Hospital Foundation Trust, andDonna Reed, BTF Project Facilitator, asspeakers for the 3 December meeting.Donna Reed presented an overview of theBTF national organisation. Dr Chan spokeon thyroid conditions during and afterpregnancy, specifically how important it isto increase the levothyroxine by 25-50mcgduring pregnancy especially during the firsttrimester when diagnosed withhypothyroidism. NEXT MEETING: Date tobe confirmed. Meetings take place onSaturdays from 10.30am-1.00pm (includingregistration time) at The Pavilion, OpenUniversity, Milton Keynes, MK7 6AA.DONATION: £2 voluntary donation.

CONTACT: Wilma Tel. 01908 562 740

Newcastle & North TynesideOCTOBER: Our autumn meeting, held inthe Newcastle City Library, was wellattended despite the uncharacteristic heatwave. Julia Charlton, Senior Lecturer inNursing at Northumbria University gave acomprehensive and riveting presentationabout healthy eating and sense of wellbeing. An excellent question and answersession followed the presentation. The ideaof well being continued with a brief tasterdemonstration of Iyengar Yoga for thyroidpatients by Ali and an explanation of BachRemedies for mood enhancement by Sue.And the promised SURPRISE? - anexquisite performance by ECHO, a localharp and flute duo. As one participantwrote: ʻJulia fed the Mind, Ali and Sue fedthe Body, Jacqui (harp) and Cathy (flute)fed the Soul.ʼ

NEXT MEETING: 24 March. Meetingstake place at The Bewick Hall, Level 2,Newcastle City Library, 33 New BridgeStreet West, Newcastle upon Tyne (5minutes walk from Monument Metro).PROGRAMME: Kate Farnell, ButterflyThyroid Cancer Trust; Ali Broady - Yogafor thyroid patients.DONATION: £2.50 to cover room hirecosts.

CONTACT: Judith Tel. 0191 2531765between 4pm and 6pm, Mondays,Tuesdays, [email protected]

Notts/DerbySEPTEMBER: Six members attended themeeting and we were pleased to welcomeDave, a BTF telephone contact fromDerby. OCTOBER: Seven membersattended and arrangements were madefor the two awareness meetings inNovember and the Christmas Fuddle.NOVEMBER: Two successful awarenessevents were held. Fifty people attendedthe first on 10 November in Newark, andthis year we were fortunate enough tohave two Consultant Endocrinologists -Professor George Thomson andProfessor Devaka Fernando, aConsultant Surgeon Mr Keshev Nigamand a lovely Specialist Registrar DrLuckni Sellahewa join us. We also held afundraising raffle for a Christmas hamper.

About 150 people attended another verysuccessful evening at Kings Mill on 15November with a similar running order.Special thanks were given to the doctorsand Sarah Elphick, Communications andMembership Manager, who organised thevenues. Another raffle was also held andraised £100 which will be divided betweenthe BTF, HPTH UK and the local supportgroup. NEXT MEETING: Monday, 6February - weather permitting - at TheStaff of Life (public house), West End,Sutton-in-Ashfield, Notts, NG17 1FB.

CONTACT: Bridget OʼConnor Tel: 01623750330 after 6 pm weekdays and anytimeweekends

Milton Keynes in the Community Zone

Surprise performance by ECHO, a local harpand flute duo

Speaking to a packed room - question and answertime at the Kings Mill thyroid awareness evening


OUR PARTNER ORGANISATIONS

OFFICIAL BTF LOCAL COORDINATORS - PLEASE SEE KEY BELOWOur coordinators will also be happy to take general calls on all aspects of thyroid disorders

OFFICIAL BTF TELEPHONE CONTACTS - PLEASE SEE KEY BELOW

Birmingham Janet (PC,CS,RIC) 0121 6287435Bolton Carole (FC,CS,RIC) 01204 853557Coventry – Colin (O,RI,U) 02476 711577Edinburgh Margaret (PC) 0131 6647223London Lorraine (U)[email protected] 01843 579793

Dave (PC,CS,RAI) 07939 236313Jackie (PC,CS) 01344 621836Fiona (C,HCN,CS,RAI) 01926 853320Sue (PC,CS,RAI) 07784 766931Gay (G,TS) 0208 8469101Nia (U) 01942 819195Wilma (U) 01592 754688Joan (U) 01865 730919Angela (U) 01943 873427Sheryl (U) [email protected] 02920 610090

AMEND – Information on medullary thyroid cancer. Contact: Jo Grey 01892 516067 email: [email protected] website: http://www.amend.org.ukHypoparathyroidism (HPTH) UK – an organisation providing information and support about all types of parathyroid disorders. Contact: Liz Glenisteremail: [email protected] website: http://www.hpth.org.uk. HPTH Helplines 01342 316315 (South) and 01623 750330 (North)Thyroid Cancer Support Group – Wales 08450 092737 email: [email protected] website: http://www.thyroidsupportwales.co.ukButterfly Thyroid Cancer Trust – is the first registered charity in the UK dedicated solely to the support of people affected by thyroid cancer and isavailable to patients nationwide. Contact: Kate Farnell 01207 545469 email: [email protected] website: http://www.butterfly.org.ukCancer52 – an alliance of organisations working to improve outcomes for patients affected by less common cancers website: http://www.cancer52.org.ukThyroid Eye Disease Charitable Trust: TEDct, PO Box 1928, Bristol BS37 0AX. 0844 8008133 email: [email protected] website: http://www.tedct.co.ukBritish Thyroid Association website: http://www.british-thyroid-association.orgBritish Association of Endocrine and Thyroid Surgeons website: http://www.baets.org.uk Sense about Science website: http://www.senseaboutscience.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

Bob (U) 01202 722784Richard (U) 01483 576785Denise (O,RI,U) 01432 271561Olwen (O,RI,U) 01536 513748Lucy (GR, RI,U) 0117 9424396Jane (GR,RI,TED,G,U) 01737 352536Peter (TED,GR) 01200 429145Penny (Ch) 01225 421348Debby (Ch) 02089 597257

Milton Keynes Wilma (U) 01908 562740Newcastle upon Tyne & North Tyneside Judith (U) 0191 2531765

Notts/Derby Bridget (GR,TS,U,PH) 01623 750330

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

7 to 9.30pm 10am to 12 noon weekdays 4 to 6pm Mon, Tues, WedAfter 6pm weekdays and anytime weekendsAfternoons only

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

Office enquiry line open: Mon to Thurs, 10am - 2pm. In the event of a complaint, please address your correspondence to ʻThe Chair of Trusteesʼ.

Director and Secretary to the Trustees: Mrs J L HickeyTreasurer: Mr A B MenziesComputer Manager: Professor B HickeyWebmaster: Claire SkaifePA to the Director and Office Manager: Mrs C McMullanemail [email protected] Assistant: Jennifer Linley

Project Facilitator: Donna ReedEditor: Judith Taylor email [email protected] Editor: Nikki Brady email [email protected] Editor: Dr P PerrosHead Office Volunteers: Jan Ainscough, Angela Hammond, Vivienne Rivis, Cathryn Perkins,Tracy Chandler, Nikki Brady, David Fortune, Julia PriestleyDesign and artwork for BTF News: Keen Graphics 01423 563888

Next issue of BTF News: May 2012. Letters and articles should be sent to the Editor, BTF News by 19 March 2012. News from local groups should besent in to the PA to the Director to arrive by 26 March 2012.For online donations please visit http://www.justgiving.com/btf/donateCopyright © 2012 British Thyroid Foundation. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system ortransmitted in any form or by any means without the prior permission of the copyright owner.

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A Happy New Year to all our readers