BBTTFFNNeewwssThe newsletter of the British Thyroid Foundation Issue 92

July 2016

F O U N D A T I O N

B R I I S HT

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

C

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

In this issueNews from BTF HQ 2

Out and About 4

In the Media 4

BTF Projects Update 5

Fundraising and Donations 6

My story: A mother's experienceof having a child born withcongenital hyperthyroidism 7

Feature: The history of thyroidhormone replacement byDr Stefan Slater 8

Feature: How thyroid disordersaffect bones 10

Research News: New studieson the causes of Graves' disease,possible combined T4/T3treatment and new findingssupporting universal thyroidscreening in pregnancy 11

Doris Godfrey ResearchAward Winner 11

Letters and Comments 12

Local Groups listings andinformation 15

BTF Support Contacts 16

www.btf-thyroid.org

BTF News 92 l PAGE 1

This two-day event (also incorporating the 64th meeting of the BTA), packed with talks by renownedendocrinologists on research and possible new treatments in endocrinology and diabetes, includeda ʻsymposiumʼ on thyroid research and possible new therapies which was chaired by two BTFTrustees - Dr Petros Perros and Dr Mark Vanderpump.

Amongst other things, delegates at the meeting discussed21st Century issues with thyroid hormone replacements.

Professor of Clinical Diabetes and Metabolism at CardiffUniversity, Colin Dayan who spoke at the event said: ʻDrMurrayʼs discovery (see below) of thyroid hormonereplacement was certainly groundbreaking. But 125 yearson, there are still many unanswered questions - such ashow much thyroid hormone is ideal for pregnancy, or inchildren; and do blood levels really tell us whether there isenough thyroid hormone within the bodyʼs cells?

ʻWith over five million thyroid blood tests every year andmore than one million people taking the hormone, theseare still important questions for a largenumber of people.ʼ

Celebrating 125 years of thyroid hormonereplacementEndocrine specialists and delegates from as far afield as Australia and the USA converged onNewcastle in May to celebrate 125 years of thyroid hormone replacement at a meetingorganised by the British Thyroid Association (BTA) and Newcastle University.

Who was George Murray?

Dr George Murray was a young doctorfrom Newcastle who, in 1891, injectedan extract from a sheepʼs thyroid glandinto a patient with symptoms of thyroidunder-activity and noticed animprovement in the patientʼs symptoms.Once thyroid hormone was found towork by Dr Murray, many other forms ofhormone replacement weresubsequently developed, such as insulinfor diabetes and oestrogen hormonereplacement for the menopause.

See page 8 for an article by Dr StefanSlater who gave a fascinating talk atthe meeting about the history of thediscovery of thyroid hormonereplacement.

Janis and Cheryl from HQ manning the BTF stand

with Kevin Barrell from biotech company Apitope

(see page 11 for a report on theApitope study)

BTF Patrons Michael Tunbridge (left) andJohn Lazarus with Janis Hickey

Plaque on George Murrayʼs housein Newcastle

PAGE 2 l BTF News 92

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

Trustees:Mr Richard D Bliss MA MB FRCS (Chair), Dr TimCheetham BSc MB ChB MD MRCP MRCPCH,Angela Hammond, Mary Newton BA (Hons), BridgetOʼConnor, Dr Petros Perros BSc MBBS MD FRCP,Janet Prentice BSc (Hons), Professor Geoffrey ERose BSc, MS, DSc, MRCP, FRCS, FRCOphth,Professor M Strachan MD FRCP (Edin)

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

The British Thyroid Foundation, Suite 12, OneSceptre House, Hornbeam Square North,Hornbeam Park, Harrogate HG2 8PBTel: 01423 810093 www.btf-thyroid.org

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

Director and Secretary to the Trustees:Mrs J L HickeyTreasurer: Professor Mark StrachanComputer Manager: Professor B HickeyEditor: Liz Clegg e.clegg@btf-thyroid.orgMedical Editor: Dr Petros PerrosEditorial Board: Mr Daniel Ezra, Professor SimonPearce, Dr Petros Perros, Dr Peter Taylor,Dr Mark VanderpumpWebmaster: Claire SkaifePA to the Director and Office Manager:Mrs Cheryl McMullan c.mcmullan@btf-thyroid.orgDevelopment Officer: Julia Priestleyjulia.priestley@btf-thyroid.orgClerical Assistant: Helen DawsonHead Office Volunteers: Jan Ainscough, AngelaHammond, Fiona MaxwellDesign & Artwork: Keen Graphics 01423 563888

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

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

BritishThyroidFoundation

@britishthyroid

News fromBTF

Carole InghamIt was withgreatsadnessthat welearnt ofthe suddendeath ofCaroleIngham,BTFTrustee,just a few

days after she attended the TrusteeAway Day meeting in York in January.Carole became involved with the BTF in1999, as a local coordinator for theBolton group. The group first met inNovember 1999 and Carole ran itsuccessfully until 2013, when shebecame a telephone support contact.Carole was a trustee on two occasionsand Chair of Trustees between 2009and 2012. She was the BTF thyroidcancer group lead for several years,playing an instrumental part in thepreparation of the first edition of the BTFbooklet ʻThyroid Cancer: For Patients,By Patientsʼ, which brought togetherpatients who wished to share theirexperiences of thyroid cancer. She alsohelped revise further editions. Carolerepresented the BTF at numerousconferences and meetings, including theYorkshire, the Manchester and CheshireCancer Networks and Cancer52. Shealso helped to organise many BTFinformation events. Carole lost herhusband, Ian, in 2014, but she remainedactively involved in the BTF.

We will remember her as a personcommitted to supporting people withthyroid disorders, in particular thyroidcancer.

After Caroleʼs funeral, her family -Alison, Winston, Janet, Kevin, Stuartand her godchildren Terri and Liam sentspecial thanks to Janis Hickey forhelping her friends and familyunderstand the enormous commitmentand dedication that Carole showed tothe BTF. They also thanked the BTF forthe floral tributes and kind messagesfrom BTF members.

Levothyroxine tablet survey One of the BTFʼs projects is to supportpeople with hypothyroidism, and to collectand reflect their views in order to helpimprove patient care. An effective way ofdoing this is to host a survey. AmdipharmMercury (AMCo) prepared an onlinelevothyroxine tablet survey that was hostedon the BTF website from 3 December 2014to 15 February 2015. The survey wasanonymous and conducted in line with theData Protection Act and all the ethicalpolicies that apply to surveys of this kind inthe UK.

There were 16 questions, which were alloptional, and respondents had theopportunity to add free text comments.Questions (1) to (4) were answered with asingle response from a pre-defined list ofpossible answers. The total numbers ofrespondents was 1,644 and a summary ofthe results of the survey is available on theBTF website www.btf-thyroid.org

Recycling for good causesThank you toeveryone who hassent in theirunwanted items. Sofar we have raised over £50. If you havemore items to donate and would likeadditional freepost labels please emailfundraising@btf-thyroid.org

Thyroid cancer conferenceJoin the Butterfly Thyroid Cancer Trust forthe first UK thyroid cancer conference forpatients.Where: Royal Society of Medicine,1 Wimpole Street, London.W1G 0AEWhen: Monday 5 December 2016 12-5pmCost: Free! Lunch and afternoon teaprovided.At the forum you will have the chance tomeet other patients, listen to leading expertsand have the opportunity to ask questions.To book your place email:enquiries@butterfly.org.uk

Pregnancy trial now closedThe tablet trial (Thyroid AntiBodies andLEvoThyroxine) has now closed torecruitment; the TABLET team havesurpassed their target and recruited 952women into the trial. Results from the trialwill be available in spring 2018. They willspend the next 18 months following upwomen and their pregnancy status. Theteam would like to thank everybody fortheir support.

BTF News 92 l PAGE 3

Pay by standing order andsave money!Paying your membership by standing orderis the most cost effective way to pay for yourBTF membership. It also helps us to keepcosts down. Please email membership@btf-thyroid.org for a standing order form or callthe office on 01423 810093 and ask us tosend you one.

Calling all longstandingmembersUnbelievably, it will be the BTFʼs 25th

Anniversary in October! We would love toinclude stories from members who havebeen with us from the start (or for a while!).Please get in touch and tell us about yoursupport for BTF, how you first heard aboutthe charity, how youʼve been involved andhow the BTF has helped you. Write to theoffice or email e.clegg@btf-thyroid.org.

The changing face of the BTFWhen BTF was established in 1991 there was very little information available to helpthyroid patients understand more about their disorder. There was no internet of courseand people had to become members of the BTF to receive the information we produced.It was entirely due to the loyalty of members that the BTF was able to grow and is thethriving and well-respected organisation that it is today.

Fast forward 25 years and how the world has changed! Did you know that in the last 12months we have had over 1,691,000 hits to the BTF website? This compares to just438,000 hits in the same period three years ago. Of course we are delighted that somany more people get support from the BTF but the downside of this growth is that fewerpeople feel the need to become BTF members. In 2005 there were over 5,800 memberswho brought an income of almost £79,000; in 2016 there are about 3,800 who bring anincome of just £48,000.

In line with the BTFʼs charitable objectives our trustees believe that raising the profile ofthyroid disorders and educating the public is a vital part of the work we do. To that end wewill continue to develop our resources and are committed to making them freelyaccessible on the website. To make this possible however, and to ensure we are notoverly reliant on membership income, itʼs vital that we seek out and develop new sourcesof funding.

If you have any suggestions about fundraising or would like to contribute in any wayplease phone 01423 810093 or email fundraising@btf-thyroid.org

Easy way to donate to theBTFPayroll Giving is a flexible scheme thatallows anyone who pays UK income tax togive regularly and tax-free to the charitiesand good causes of their choice. PayrollGiving donations are deducted before taxso each £1.00 you give will only cost you80p, and if youʼre a higher rate tax payer itwill only cost you 60p. Payroll Giving (alsoknown as ʻGive As You Earnʼ or ʻworkplacegivingʼ) is a valuable, long term source of

revenue, providing regular income tohelp charities budget and plan ahead moreeffectively. Itʼs cheaper because itʼs taxfree - for example, a donation of £5 permonth costs the basic rate tax payer £4.00(the taxman pays the rest!). It is also theonly way for higher rate taxpayers to passon their 40% or 45% tax to charities. Only28% can be recouped via other ways ofgiving.

Go to www.payrollgiving.co.uk for moreinformation.

Office moveWe are now settled in our new offices.We would particularly like to thank Timand Cath Culligan and Bryan Hickeyfor all their help with the set up of thenew telephone system and computers.Weʼre also grateful to Naish EstateAgents and Solicitors in York for theirconveyancing services, which werekindly provided free of charge.Our new address is:Suite 12, One Sceptre HouseHornbeam Square North,Hornbeam ParkHarrogate HG2 8PB.Our new phone numberis 01423 810093

ChariTable BookingsThe BTF has signed up for the ChariTableBookings restaurant reservation App(iphone only at present). This allowscustomers to book tables at thousands ofparticipating restaurants across the UK. Atno cost to the customer, £1 for EVERY dinerwill be kindly donated by the restaurant tothe BTF. Simply download the ChariTableapp on your iphone and book your favouriterestaurant knowing that youʼll be supportingthe BTF while you eat!

London Marathon 2017place available!Email fundraising@btf-thyroid.org foran application form.

PAGE 4 l BTF News 92

Out and About

In the Media

International meeting held to identify earlysigns of Gravesʼ disease and eye problemsJanis Hickey, BTF Founder, attended a three-day meeting of expertsinvolved in the INDIGO (Investigation of Novel biomarkers andDefinition of the role of the microbiome In Gravesʼ Orbitopathy) (see

BTF News 90 page 11)project and EUGOGO(European Group on GravesʼOrbitopathy) in Cardiff inApril. The meeting includedfeedback from people withGravesʼ disease andthyroid eye disease on thefinal afternoon. Followinga fascinating descriptionof a studyinto the

effect of probioticson the gut - the subject matter of the INDIGO

trial study - presented by Professor Colin Hill ofCork University, Lynne Kyffin, a TED patient fromNewcastle, gave an equally fascinating talk entitled:Are You What You Eat? Lynne described lifeevents and illnesses she had experienced overmany years and how, by researching her eatinghabits and food content, and subsequentlyadjusting her diet, felt far healthier than she hadfor the past three decades.

A patient group was asked to discuss whetherthe presentations would lead them to reflect onhow else they might deal with their thyroid

Europe bans two endocrine-disruptingweedkillersThe European Commission has ordered a ground-breakingsuspension on two endocrine-disrupting weedkillers that have beenlinked to thyroid cancer, infertility, reproductive problems and foetalmalformations, as reported in The Guardian on Tuesday 19 April2016.

The article explains: ʻThe use of Amitrole and Isoproturon will nowbe banned from 30 September 2016 across Europe, after an EUcommittee voted unanimously for the first ever ban on endocrine-disrupting herbicides. Endocrine disruptors are chemicals that caninterfere with the hormone system. Scientific studies indicate thatthey can cause cancerous tumours, birth defects and a range ofailments related to gender, sex and reproductive systems.

Hans Muilerman, chemicals officer at Pesticide Action Network(PAN) Europe, said: ʻThis is a historic decision as it is clear that thesechemicals are 100% endocrine disruptors. We applaud these two

disorder or TED, and whether instabilities in their gut may havecaused their thyroid disorder. Janis Hickey presented a summary tothe conference participants: most patients were unsure whether theywould make any changes to their diet, but a couple ponderedwhether being vegetarianfor three decades mighthave had adverse effects,and whether alcohol had apart to play. It had beenclear from Lynneʼspresentation that she hadfound information lackingon precisely what dietarychanges to make, and itwas felt more researchand evidence was neededbefore an awareness campaign couldbe conducted. The patient group agreed that it would be helpful toorganise a questionnaire about lifestyles, life events and diet.

Professor Marian Ludgate, coordinator of INDIGO, commented:ʻThe patient group are absolutely right in saying that more studies

need to be done. As part of the INDIGO project, patientsrecruited are asked to complete a questionnaire abouttheir diet and lifestyle habits, in addition to providingvarious samples for analysis. We hope that this willprove to be informative and eventually lead to bettercare for people with TED.ʼ

For further information about the INDIGO research studysee: www.indigo-iapp.eu/

proposals but at the same time note that a large reservoir of harmful,classified and endocrine-disrupting pesticides is still waiting for adecision, which has been repeatedly postponed by the commission.ʼ

Amitrole, also known as aminotriazole, is widely used in 10 EUcountries, including the UK, in industrial farming. But a EuropeanFood Safety Authority (EFSA) analysis found that it was an endocrinedisruptor that could damage unborn children, and have toxic effectson the thyroid and on reproductive organsʼ.

Source: http://gu.com/p/4te8g/sbl

Professor Colin Hill

Janis Hickey

Lynne Kyffin

CPhoto 123rf.com

BTF News 92 l PAGE 5

BTF Projects UpdateExperts at themeeting referred tofoods such as dairyproducts and fishthat are high iniodine but alsopointed out thatstudies show thatthe levels ofiodine varywidely in both.Organic milk forexample has farless iodinecontent than conventional milk.Experts warned that despite the existing evidence andWHO recommendations that supplements should be made availablein countries where pregnant women cannot access iodised salt, thelast guidelines from the UK Government on iodine status were issuedin 1991. They emphasised that more evidence is required and so toois the political will to promote a policy change to protect unbornchildren from the harmful health effects of low iodine.

The well-respected medical publication The Lancet Diabetes andEndocrinology published editorial comment following the meeting.Go to: www.thelancet.com/pdfs/journals/landia/PIIS2213-8587(16)30055-9.pdf

The BTF is currently focusing on several key thyroid related areaswith the aim of improving knowledge, assisting with research andimproving the patientʼs experience. We are developing strategies forhypothyroidism care, iodine deficiency and subsequent thyroidproblems, children with thyroid issues, thyroid cancer and thyroid eyedisease. Each project group meets regularly to discuss progress,although we do not always have updates available for everynewsletter.

Iodine projectInternational iodine meetingJanis Hickey, BTF Founder, attended a meeting organised by theIodine Global Network (IGN) in March. The meeting focused on therole of iodine in pregnancy, the issue of mild-to-moderate iodinedeficiency in the UK, and how pregnant women living in thisenvironment unknowingly place their children at possible risk ofimpaired intelligence and learning disabilities.

The IGN emphasised the importance of people with normal thyroidfunction having sufficient iodine levels, both before and duringpregnancy, as well as during breast-feeding. There was alsodiscussion of possible solutions to remedy this situation: the iodisationof salt; or iodine supplementation before and during early pregnancyand breast-feeding. The meeting highlighted the fact that according toThe World Health Organisation (WHO) the UK is shown to be one ofthe top ten iodine-deficient countries in the world. WHO has producedrecommendations for the management of iodine deficiency, yetvarious UK-based studies show that pregnant women and women ofchild-bearing age have levels below the level recommended by WHO.The IGN concluded that considering the evidence to date, ideally arandomised controlled trial (RCT) is now required to investigate iodinedeficiency in pregnant women and cognitive outcomes intheir children.

John Lazarus, BTF Patron and Chairman, UK Iodine Groupspeaking at the meeting

Thyroid cancerWe are in the final stages of updating our thyroid cancer booklet:Thyroid Cancer For Patients, By Patients. The unique emphasisabout this publication is that it includes much helpful information thathas been contributed by patients. If you would like to share yourexperiences (even if it is simply a couple of sentences about how youfelt at any stage of your own thyroid cancer journey) please emailjulia.priestley@btf-thyroid.org. We would love to hear from you!

Children

BTF involvement in possible new treatmentfor Gravesʼ disease in childrenThe BTF is closely involved in the conduct of a new study looking tosee if a trial drug called Rituximab will slow down or stop the thyroidgland making too much thyroid hormone in children. This trial will seeif Rituximab can help make young people with Graves ʻ diseasebetter when it is used together with a short course of carbimazole.

Dr Tim Cheetham from Newcastle Universityʼs Institute of GeneticMedicine and BTF Trustee is leading a trial to find a cure for Gravesʼ

in young people. In Gravesʼ hyperthyroidism the thyroid produces toomuch thyroid hormone. Patients with this condition can havetiredness, sleeping problems, poor concentration and weight loss. Itis difficult to treat Gravesʼ in the young because the tablets available(carbimazole) have a number of side effects and yet do not usuallycure the condition. Only 25% (one in every four) 12-20 year olds willbe permanently better after a standard two year treatment. Otherways to treat this disease include surgery and radio-iodine. Surgeryand radio-iodine can have significant risks and are not a curebecause patients that have surgery or radio-iodine need to takethyroid hormone replacement. Rituximab is a medicine that is alreadyused in other autoimmune conditions, such as rheumatoid arthritis.We will keep you up to date with the progress of this trial.

The BTF website has a wealth of information on thyroid disorders andchildren - go to www.btf-thyroid.org/projects/children

Thyroid eye diseaseJanis Hickey, BTF Founder attended a meeting organised byINDIGO looking into the possible causes and early detection ofthyroid eye disease in April. See page 4 for a full report ofthe meeting.

Delegates at the meeting

PAGE 6 l BTF News 92

Fundraisingand Donations

FundraisersSixteen year oldAmber Burns hasraised a fantastic£75 by holding acake sale at herschool. Amberhad a totalthyroidectomylast year. She isplanning toorganise asponsoredwalk later inthe year.

Lottie Brand raised nearly £400 byholding a sponsored silence for seven days -quite a challenge! Lotty explained herreasons for the challenge: ʻBefore ChristmasI had half of my thyroid removed and one ofthe risks of this surgery was temporary orpermanent voice loss. This did make meseriously ponder what it would be like to losethe use of my voice. I wanted people to thinkabout the things we all take for grantedʼ.

Joanne Lewis raised £44 for the BTF byrunning the Coventry Half Marathon.

Corinne Neill and a group of her friendsand family climbed Ben Nevis in June (ina heat wave!) in remembrance ofCorinneʼs sister Gwen who recentlypassed away after battling thyroidcancer. They have raised over £700 sofar to support the work of the BTF inGwenʼs memory.

Gwenʼs family also donated £470 from acollection held at her funeral andCorrineʼs husband Graham nominatedthe BTF for a recent charity day held byCaddies at Muirfield Golf Club andraised an amazing £1520.

The group on the climb

Gwen and Corinne

Ryan Neill, Ryan

Campbell and Siobhan

Neill at the summit

If you are involved in a fundraising eventin aid of the BTF please get in touch sothat we can send you sponsorshipforms, posters and other publicitymaterials. We can also supply BTF t-shirts or running vests, but please allowenough time for us to get the right sizefor 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 tospace) and on the BTF website.

Eleven year old Aarabi Ketheeswaranathanraised £30by sellingcards shehad madeto herfriendsandrelatives.

The Inner Wheel Club of Ipswich Orwellchose the BTF as their charity of the year.Linda Smith, their President who has anunderactive thyroid helped organise agarden party and raised over £500. Over theyear the group has managed to raise over£1000 for the BTF!

Future FundraisersRachael Harrop is taking part in the York10k in August. She was diagnosed with anunderactive thyroid four years ago. www.justgiving.com/Rachael-Harrop1

Steve Foulkes is cycling from London toParis in September 2016 for the BTF.www.justgiving.com/steven-foulkes

Natalie Ryan is running her first 10k inSeptember when she takes on the HursleyMulti-terrain Race in Hampshire.Natalie had a thyroidectomy 15 years agoand has found subsequently having anunderactive thyroid challenging.

Great North RunWe have five runners in the Great North Runin September - Adam Perros, MartinPriestley, Mo Bhaskaran, Liz Killean andMarika Wiebe-Williamswww.justgiving.com/fundraising/Marika-Wiebe-WilliamsThis is the first time we have taken places inthis iconic race - look out for photos in thenext BTF News!

DonationsMany thanks for your generous donations.We are grateful for them all, including thosedonated online, often in response to adviceand support from our telephone contacts,local coordinators and BTF head office andalso for donations by members at the time ofjoining BTF or at renewal time.

Donation of £350 from Mrs Squires and MrsSearles.

Donation of £100 from DK Cookson.

Donation of £100 on behalf of the BBC inmemory of Adam Beck, a make-up artistwho suffered from a thyroid disorder.

BTF News 92 l PAGE 7

My StoryChloe was diagnosed with congenital hypothyroidism (CHT)when she was born. Chloeʼs mum Emma explains the rollercoaster ride from that diagnosis:

Chloe had her heel prick test at five days old athome, without any problems and we forgot aboutit. It wasnʼt until the following week that wediscovered the heel prick test had proved vital,when the community midwife paid a visit. Wethought sheʼd come to see how Chloe andmyself were, as Iʼd had a c-section andbreastfeeding hadnʼt worked out. But sheʼdcome to tell us Chloe might have congenitalhypothyroidism. Having not paid muchattention to the heel prick test information, wethought Chloe had some life threateningdisease and were devastated. The midwifeexplained this wasnʼt so and that sheʼdmade us an appointment with a doctor inthe childrenʼs department at the localhospital.

At first I had a blood test along with Chloe,to see if it was me that had theunderactive thyroid and Chloe may havebeen carrying it still from being insideme. Not the case though, and so itbegan! Her doctor explained congenitalhypothyroidism (CHT) very clearly to us, answering anyquestions we had. It was then that we realised it was easilytreated and that Chloe could lead a normal life. There were manytrips to the hospital in the first few months of Chloeʼs life, bloodtests a-plenty to get the levothyroxine dose correct.

At first, we crushed the tablet and put the bits of tablet in a little ofher milk on a teaspoon and she happily swallowed it. It did seema bit of a palaver at first, but we all got used to it and it becameroutine to her, the norm. I think Chloe was around two when shefirst took the tablet by herself. She surprised us by just popping iton her tongue and sometimes crunching it. To this day (aged 10)she still just pops it in her mouth at breakfast time.

When Chloe got to the chubby baby stage, with the folded bits ofskin that they have to grow into, finding a good clear vein on herhand or arm became a problem. For a time we had to visit thechildrenʼs ward at our hospital for her blood tests, as there wereplenty of staff around who were used to children. But no matterhow many staff, she would struggle and scream. By the time shewas one, I was a dab hand at applying the numbing cream anddressing, and at restraining her. And by the time the childrenʼsward decided she was old enough to attend the blood clinic(about five years old) I had to plan going so my husband couldcome too. Chloe on my lap with my arms cuddling (firmly!),keeping her upper body still, husband helping one nurse with the

arm the blood was to be taken fromwhilst another nurse took the blood! Itwasnʼt till Chloe was about seven thatthings improved. My husband andmyself had been invited for an over-40health check, which involved a blood testeach. I had a light-bulb moment, and saidChloe should come, come and see that wedonʼt scream and struggle. And as luckwould have it, she was due a blood testshortly after. She just winced and cried alittle. And by the next blood test, she hoppedin the chair herself! There is also a veryimportant someone who comes along to theblood tests too. Chloeʼs favourite and mostloved cuddly, Ducky. We couldnʼt do withoutDucky support!

Chloe was taken off levothyroxine at three, tosee if her thyroid would ʻkick inʼ. Her doctor had

always told us this was the age to do it, as much rapid growth hadtaken place by that age. After six weeks or so weʼd noticed Chloehad begun to slow down, lethargic, not eating well, and a bloodtest confirmed her thyroid still wasnʼt working, and she would beon levothyroxine all her life.

In April 2014, we attended the BTF Childrenʼs Conference. It wasgreat for Chloe to meet other children who pop a tablet everydaylike her. Weʼve yet to meet anyone locally who has CHT. ButChloe takes it all in her stride, itʼs the norm to her and we plodalong happily with her. Despite the struggles with the blood testsfor a few years, weʼve had a good journey so far, with a greatdoctor and staff at the hospital who are informative, caring andunderstanding.

International Thyroid Awareness Week 2016 was celebratedaround the world from 23-27 May. This yearʼs campaignaimed to raise the profile of thyroid disease and how itaffects children and babies. www.thyroidweek.org

We have lots of information to help parents and children onthe BTF website.Go to www.btf-thyroid.org/projects/children

ʻHaving not paid muchattention to the heel prick testinformation, we thought Chloehad some life threateningdisease and were devastated.ʼ

PAGE 8 l BTF News 92

The 125th anniversary of the discovery of thyroid hormonereplacement for an underactive thyroid gland in 1891 by Dr GeorgeMurray of Newcastle was celebrated on 12 May. Doctors andpatients world-wide had good cause to celebrate, for the achievementmarked the birth of clinical endocrinology and was followed over theyears by many hormone discoveries such as of insulin and cortisone,to the benefit of countless patients.

Hostile ridiculeThe story has been told to generations of medical students, of howyoung George in February, 1891, age 25, presented his plan, at theNorthumberland and Durham Medical Society, to treat a woman of 46with myxoedema with injections of an extract of sheep's thyroid. Heproposed getting the thyroids from an abattoir, dissecting them outunder antiseptic conditions and then preparing a liquid extract. But atthe meeting he was ridiculed. One member said it would be just assensible to inject an emulsion of spinal cord to treat spinal corddisease and the medical college refused facilities. However, hepressed on and started treating his patient on 13 April 1891 with twiceweekly injections and she dramatically improved. This was reportedin the British Medical Journal and again the following year when heincluded three other treated patients.

Why had his idea been mocked? Probably because two years earlier,in 1889, the distinguished French physician and researcher, CharlesEdouard Brown-Séquard, had reported what were regarded asdisreputable experiments on rejuvenation, injecting himself withextracts of dog and guinea pig testicle. The sensational nature ofthese experiments antagonised ʻrespectableʼ doctors and blindedmany to the principle of organ replacement therapy that was trying toshine through.

Dawning understandingMurrayʼs achievement was built on the studies and observations ofother doctors in preceding years, as is usual with medicaldiscoveries, and they, too, deserve credit. The full story is, therefore,more complex and contains some very human ingredients: missedopportunity, ignorant prejudice - like the reaction to the rejuvenatingexperiments - jealousy, rivalry and even deception. With hindsight,the steps taken were in logical order, but at the time doctors struggledwith the unknown. For what the thyroid did was a mystery. It seemedimportant, given its very generous blood supply. Some wondered if itacted as a kind of safety valve to prevent sudden rushes of blood tothe brain; others that it was involved in voice production; still othersthat it produced a ʻpeculiar fluidʼ of unknown function. Then, between1836 and 1877, five English doctors pointed the way.

In 1836, Thomas King, pathologist and surgeon at Guyʼs Hospital,London, made a meticulous anatomical study of the thyroid andconcluded that it did, indeed, secrete a peculiar fluid directly into theblood stream and that this fluid possibly contained ʻa particularmaterial principleʼ with important functions. The word ʻhormoneʼ wasyet to be coined, but King is regarded by some as the ʻFather ofEndocrinologyʼ for this conclusion. He also found abnormalities in the

thyroid and related them to ʻpeculiaritiesʼ in the patients during life.Frustratingly, he provided no clinical details - a missed opportunity.

In 1850, Thomas Curling, surgeon at the London Hospital, found notrace of a thyroid at post-mortem in two patients with cretinism andconcluded that this most probably had something to do with theircondition.

In 1871, Hilton Fagge, a physician at Guyʼs, described four cases ofcretinism and argued that failure of thyroid function was to blame. Healso accurately predicted the clinical picture were this to happen inadults. He did not have long to wait, for, in 1874, Sir William Gull, hissenior physician colleague at Guyʼs, reported five cases of what hecalled ʻA Cretinoid State supervening in Adult Life in Womenʼ.

Finally, in 1877, WilliamOrd, physician at StThomasʼ Hospital,London, coined theterm ʻmyxoedemaʼ forthese adult patients,from the ʻmucousoedemaʼ which, atpost-mortem in onepatient, heconsideredunderlay the skin.This was aninspired invention;a snappy-for-the-times,memorable,single-wordlabel whichpersists to thisday as the alternative namefor hypothyroidism - underactivity of thethyroid. He also described the ʻpractical annihilationʼ of the thyroid atthe autopsy, objective evidence, as he concluded, of a possiblecausal link to the condition. He proposed an engaging, if incorrect,theory to explain the lethargy, inertia and slow responses of thedisease; that they might result from the sheathing and insulation ofthe body in a jelly-like, mucin-laden integument that interfered withsensory perception and stimulation. Maybe there is yet an element oftruth in this.

A complete transformation:The 125th anniversary of the discovery ofthyroid hormone replacement

Cretinism before (left) and just two months after starting thyroid replacement (1895)

William Ord

Feature

BTF News 92 l PAGE 9

The Swiss keyThe next key studies were, fittingly, from two Swiss surgeons,Jacques-Louis Reverdin in Geneva and Emil Theodor Kocher inBern. This was fitting because goitre was endemic in Switzerland andin other land-locked mountain valley regions across the world, due,as we now know, to iodine deficiency. We had our own ʻDerbyshireneckʼ. So extremely common was goitre in the Tyrol, that in 1775 aremark is recorded of an English visitor that he would have beenhandsome if only he had had one! These goitres could be huge andconstrict the windpipe, and surgeons sometimes had little choice butto try to remove them despite the very high surgical mortality. Withexperience, however, an increasing number of patients survived theoperation, which was often one of total thyroidectomy, the wholethyroid being removed. Reverdin and Kocher had become experts,especially Kocher who carried out over 4000 thyroidectomies in hiscareer, with an ultimate operative mortality of under 0.5% by 1912,when it had previously been so high that in 1850 the FrenchAcademy of Medicine banned the operation! Mark you, the fallingmortality will have had, in addition to ever-improving surgicaltechniques, something to do with ceasing to attempt a total excision,as we shall shortly see.

For, critically, Reverdin in 1882 reported long-term ill effects fromsurgically successful total thyroidectomy and realised that theseeffects looked just like the patients described by Gull and Ord. Heproposed the term ʻmyxoedème opératoireʼ and substituted subtotalthyroidectomy for total, as he felt that complete loss of the thyroidwas to blame. He spoke to Kocher who then investigated his post-operative patients and found the same. Strangely, however, Kocher atthis point thought the problem was due to loss of the safety valveeffect of the thyroid, the old theory, and to oxygen deficiency frompost-operative narrowing of the trachea. Yet, he subsequentlydeceitfully promoted the priority of his findings anddismissed Reverdinʼs contribution. In 1909he became the firstsurgeon to receive theNobel Prize forMedicine for his workon the thyroid. Whilethere is no doubt ofKocherʼs overall far fargreater contribution tothyroidology thanReverdinʼs, in the matter ofoperative myxoedemaReverdin holds theintellectual property. Somefeel he should have shared inthe Prize.

The missing linkThe final piece in the jigsawultimately leading to Murrayʼstreatment plan came from a youngGerman immigrant, working at StThomasʼ in throat disease. This wasFelix Semon, later Sir Felix and doyen of British laryngology. In 1883he proposed that myxoedema, cretinism and the effects of totalthyroidectomy were all due to the same cause, absence ordegeneration of the thyroid. He, too, was at first ridiculed, but theClinical Society of London undertook to canvass 115 British andEuropean surgeons for their experience of thyroidectomy - aremarkable project for its time - and their feedback squared withReverdinʼs and Kocherʼs observations.

The reader may find it odd it should have taken so long to realise thattotal thyroidectomy was bad, but surgeons in those days seldomfollowed-up their patients once discharged from hospital. The fact thatthey had survived an operation was, alone, regarded as a success,but long-term complications were often missed.

Treatment at lastWith all this evidence, another English surgeon and researcher, VictorHorsley, later Sir Victor and eminent neurosurgeon, advocatedgrafting sheepʼs thyroid to treat myxoedema. Two Portuguesedoctors, Antonio Maria Bettencourt-Rodrigues and José AntonioSerrano of Lisbon, then did this in 1890. They found an immediateimprovement before the graft itself could have started working andconcluded that this must be due to simple absorption of ʻjuiceʼ fromthe grafted gland. This was a conclusion of extraordinary importanceand set the stage for George Murray, who knew of this work, toprepare a thyroid extract and inject it. In fact, Bettencourt had beatenhim to it in 1890, but found difficulty repeatedly preparing the extract,did not persevere and later in life acknowledged Murrayʼs pride ofplace in the discovery.

Murray and others quickly established the principles of treatment ofmyxoedema to which we still adhere, as large series of cases werequickly assembled. There was clearly no shortage of them as doctorseverywhere realised in retrospect they had seen such cases.Considering the pretty uniform picture of overt hypothyroidism, it israther remarkable the condition was not recognised sooner as adistinct clinical syndrome. Whole sheep thyroid or its extract, orally,replaced injections within months, the disgusting taste needingdisguised in a sandwich, or lightly fried with anchovy paste on toast,or taken with current jelly. The beneficial effects seen were

remarkable. As one physician put it:

ʻThis treatment is invariably followed by an improvement, by arapid change in the appearance of the patient – there is acomplete transformation, and the patient has ceased to be apatient, and appears a new individualʼ.

The miracle had occurred; clinical endocrinology was born.

This article was written by Dr Stefan D Slater, Retiredconsultant physician & endocrinologist MD(Hons)FRCP(Edin), FRCP(Glas), FRCP(Lond), FRCP(Ire)

For further information, go towww.jameslindlibrary.org/articles/the-discovery-of-thyroid-replacement-therapy/

Cretinism is a term used in the past foruntreated congenital deficiency of thyroid

hormone (congenital hypothyroidism) which causesseverely stunted physical and mental growth. Since theinclusion of congenital hypothyroidism (CHT) in 1981 onthe list of diseases tested on blood taken from the heelprick performed on babies when first born, this rarecondition can thankfully now be quickly diagnosed andtreated in the UK.

Sir Felix Semon

PAGE 10 l BTF News 92

FeatureBone and thyroid disordersThyroid hormones are essential for normal bone strength. Throughout ourlives, the cells in bones break down and re-grow, a process known asremodelling. A proper balance of breaking down and rebuilding bonetissue is needed for bones to stay strong. As we age, bone tends to breakdown more quickly and rebuild more slowly. Hyperthyroidism (over-activethyroid) can accelerate bone breakdown and cause osteoporosis (fragile,porous bones). Hypothyroidism (under-active thyroid) can also impairbone formation in children.

What is osteoporosis?Osteoporosis - literally ʻporous bonesʼ - is a medical condition wherebyyour bones become fragile and are more likely to break. The commonsites for breakage are the wrist, spine and hip. Although osteoporosis canbe treated it is better to prevent it in the first place.

How does osteoporosis occur?Two types of cells are constantly at work in your bones to allow yourskeleton to grow and repair any damage such as fractures. ʻOsteoclastsʼbreak down the bone while ʻosteoblastsʼ build it up again. Each ʻturnoverʼcycle normally takes 200 days. Many factors influence this process ofbone replacement, including hormones, the amount of exercise you takeand the amount of vitamin D and calcium in your diet. The rate at whichthe bone replacement occurs is normally in balance. If more bone is lostthan is replaced, your bones become less dense and you may developosteoporosis. If you develop osteoporosis your bones can breakmore easily.

Who is at risk for osteoporosis?All men and women are at risk for osteoporosis - everyone starts to losesome bone density from the age of 35 years and this is just a normal partof ageing. It is more common, however, in older women after themenopause, as they stop producing oestrogen, a hormone that protectsthe bones. After the menopause bone can be lost more rapidly over thenext five to ten years.

Factors that increase the risk of osteoporotic fractures include:l Personal history of a broken one, especially a fragility fracture either

occurring spontaneously, or as a result of low trauma such as a minorfall

l Family history of osteoporosis or low trauma fracturel Early menopause, previous steroid therapyl Anorexia nervosa, low body weight, poor diet, smoking, excessive

alcohol intake, lack of exercise or mobilityl Prolonged untreated hyperthyroidism,l Prolonged over-treated hypothyroidisml Other illnesses such as rheumatoid arthritis, coeliac disease, and

primary hyperparathyroidism

What is the link between thyroid disease and osteoporosis?Thyroid hormone affects the rate of bone replacement. Too much thyroidhormone (i.e. thyroxine) in your body speeds the rate at which bone islost. If this happens too fast the osteoblasts may not be able to replacethe bone loss quickly enough. If the thyroxine level in your body stays toohigh for a long period or the thyroid-stimulating hormone (TSH) level inyour body stays too low for a long period then there is a higher risk ofdeveloping osteoporosis. There is also some evidence that people withlow TSH levels may lose bone at a faster rate than those with normal TSHlevels even when the blood thyroxine measurement is within the normalrange, but this is still being studied.

Over-active thyroid (hyperthyroidism)If you have hyperthyroidism, the first step is to treat the over-activity. Oncethe level of thyroid hormone in your body has been reduced to a normallevel the rate of bone loss will no longer be so rapid and the bone strengthmay improve. Some people, however, will have persistent bone loss, withor without thyroid disease, and postmenopausal women are at particularlyhigh risk of this. If you have had prolonged untreated hyperthyroidism andhave other risk factors for osteoporosis and bone fractures, a bonemineral density scan two to three years after your thyroid treatment startswill help assess your risk. If a bone density scan shows osteoporosis thenthis can be treated with medication.

Under-active thyroid (hypothyroidism)An under-active thyroid is not, in itself, a risk factor for osteoporosis, but ifyou are prescribed levothyroxine to increase your thyroid levels to thenormal range you should have regular blood tests, at least once a year, toensure your thyroid hormone levels are not too high.

How can I reduce my chance of osteoporosis?You can help keep your bones healthy by eating a well-balanced dietcontaining calcium-rich foods, maintaining normal vitamin D levels,avoiding smoking, keeping your alcohol drinking to within recommendedlimits, and exercising regularly. High impact exercise, such as jogging orpower walking, helps strengthen bones. Other exercises, such as Tai-Chi,may be useful in improving balance, therefore reducing the risk of fallswhich could break bones. Hormone Replacement Therapy (HRT) mayhelp to reduce the risk of osteoporosis in women but it is nowrecommended only for the treatment of menopausal symptoms and maybe associated with increased risk of other conditions depending on theindividual. Spending 10-20 minutes every day in the sunshine providesthe best source of vitamin D during summer months.

How much calcium should I take?The National Osteoporosis Society (www.nos.org.uk) recommends adaily intake of 700mg of calcium for men and women, including pregnantwomen, or up to 1,000mg daily if you are on osteoporosis drugtreatments. If you are breast-feeding you need to increase your calciumintake by an extra 550mg daily.

What foods contain calcium and vitamin D?Calcium is most easily obtained from (preferably low-fat) dairy productssuch as milk, cheese and yoghurt. One pint of skimmed milk contains880mg of calcium. Certain types of fish, and green vegetables such asokra and watercress, are also a good source of calcium if you dislike orcannot consume dairy products. Oily fish, such as salmon, trout,mackerel, herring (including kippers) and fresh tuna contain vitamin D.Even if you are taking other medication for osteoporosis if there is notenough calcium or vitamin D in your diet and/or your bone density isreduced then you should talk to your doctor about taking calcium andvitamin D supplements.

Future researchMuch research is taking place on how to best manage bone conditionssuch as osteoporosis in thyroid patients. Joint winners of the 2007 BTFResearch Award Professor Duncan Basset and Professor GrahamWilliams used the BTF award to study the role of a transporter of thyroidhormone called MCT8 and the role it plays in bone mass and skeletaldevelopment. They were able to show for the first time that active thyroidhormone transporters within the body such as MCT8 are essential fornormal skeletal development and bone mass. This study has led to moreextensive studies and attracted further funding.Professor Bassett commented ʻWe hope these studies will yield importantnew insights into the regulation of both skeletal development and adultbone turnover and provide the basis for new approaches to prevent boneloss in patients with elevated thyroid hormone levels.ʼ

CPhoto 123rf.com

BTF News 92 l PAGE 11

Research News

Photo 123rf.com

Go-ahead for new study targeting the causesof Gravesʼ diseaseApitope, a European biotech company focused on the discovery anddevelopment of revolutionary disease modifying therapies forautoimmune and allergic diseases, including Gravesʼ disease, haverecently received regulatory approval from the Medicines & HealthcareProducts Regulatory Agency for its Phase I study into Gravesʼ disease.The BTF will help provide advice and insight into clinical plans andduring the clinical trials. Screening of patients for the study is planned tocommence in June 2016 at the following specialist centres located inthe UK: Royal Victoria Infirmary, Newcastle; Queen Elizabeth Hospital,Birmingham; University Hospital of Wales, Cardiff; The Christie,Manchester; Kingʼs College Hospital, London.

Other centres will also be participating from other countries of theEuropean Union.

Dr Keith Martin Chief Executive Officer at Apitope says: ʻThese arevery exciting times for Apitope and the Gravesʼ disease patientcommunity. This will hopefully be the first study on a road that will leadus to the first potential new drug therapy for Gravesʼ disease in manyyears; it will be unique in that it is targeting the cause of the disease.ʼ

Further information about this study and other Apitope developmentprogrammes can be found on the Apitope website www.apitope.com

New study into combined T4/T3 treatmentThe BTF has been invited to join an independent advisory panel for astudy on the development of a new formulation of thyroid hormones thatwould combine T4 with a sustained release formulation of T3. DiurnalLtd and the University of Sheffield are applying to the EC for a grant tosupport the production of the drug, phase 1 clinical studies and a phase2 proof of concept study. They believe they have the technology to testfor the first time the effects of a truly normal physiological ratio of T3:T4and hopefully improve quality of life for those patients who feel T4 alonedoes not provide full replacement. Results of the grant application willbe known in October.

BTF Research Award findings may help pavethe way for worldwide thyroid screening inpregnant womenDr Peter Taylor, winner of the 2014 Research Award for his studies intothe management of hyperthyroidism during pregnancy explains: ʻThereis growing interest in the need for universal thyroid screening inpregnancy, with its recent introduction in China and likely introduction inSpain and India soon. Universal thyroid screening of pregnant women isalso cost-effective and compares favourably to commonly screened forconditions such as gestational diabetes. Whilst all major endocrine,thyroid and obstetric societies recommend that clear cases of thyroiddisease should be treated in pregnancy, we are currently unclear as towhether individuals with borderline thyroid abnormalities in pregnancy(subclinical hypothyroidism and isolated hypothyroxinemia) should alsobe treated.ʼ

To an extent this can be addressed using the Controlled AntenatalThyroid Study (CATS) obstetric outcomes that we are currentlyanalysing which have shown some benefits in treating these borderline

thyroid abnormalities. In particular, treatment has resulted in fewerpremature babies and higher birth weights as well as reducing thenumber of early caesarean sections. Universal screening may alsopotentially reduce the number of stillbirths. Findings from this study andothers may provide the necessary data to encourage universalthyroid screening.

Doris GodfreyResearch Award 2016Simon Pearce, Professor ofEndocrinology and HonoraryConsultant Endocrinologist, Instituteof Genetic Medicine, InternationalCentre for Life, Newcastle uponTyne was awarded the 2016 BTFResearch Award for his study:Differentiated thyroid cancersurvival, recurrence rates bydisease stage and quality of lifein the Northern Cancer Network

Professor Pearce and Chief Investigator Dr Petros Perros, givea summary of the study:Thyroid cancer causes about 2,500 deaths in the UK every year.International statistics show that the UK has a higher death ratecompared to many other European countries. It is unclear why thatmight be the case; especially since a lot of NHS resources havebeen allocated to cancer care over the past 20 years. One possibleexplanation is that very small thyroid cancers (which rarely causedeath) are not recorded in UK national statistics. This study willlook at death statistics from thyroid cancer with relation to howadvanced the cancer was when it was diagnosed. Such informationwill make it possible to compare with other countries in a moreinformative and fair way, so that we can understand why there aredifferences. This is important in planning and improving services forpatients with thyroid cancer. Besides surviving from cancer, thequality of life of thyroid cancer patients is important. This study willalso find out about quality of life of survivors of thyroid cancer fiveand 10 years after they have been diagnosed. Correlating quality oflife measurements with other aspects of the cancer (for examplehow advanced it was when diagnosed and with some of thetreatments) will give us a better understanding of how to treatpatients with thyroid cancer in future.

PAGE 12 l BTF News 92

Letters andComments

Bipolar disorder andthyroidectomyN asks: I have a bipolar disorder. Now Ihave been diagnosed with thyroid cancerand it is proposed to remove my thyroid. Doyou know if my mood might be affected bythe lack of a thyroid?

Our medical adviser replies:Hypothyroidism can certainly causesignificant depression but if s/he is on theappropriate levels of levothyroxine thisshouldnʼt be a problem.

For someone with a psychiatric backgroundthere is a good case for using recombinanthuman TSH, (a therapy that allows you toremain on levothyroxine throughouttreatment) for radioiodine ablation or for

diagnostic purposes rather thanlevothyroxine withdrawal, which may wellprecipitate more psychiatric problems. The2014 BTA guideline recommendation on thissubject is below, and you may wish to bringthis to the attention of the doctors treatingyou if they plan radioiodine ablation withlevothyroxine withdrawal.

For the groups of patients with the conditionslisted below, recombinant human TSH is theonly possible or safe option for diagnosticpurposes and for ablation or therapy:

l hypopituitarisml severe ischaemic heart diseasel previous history of psychiatric

disturbance precipitated byhypothyroidism

l advanced disease/frailty.

Gap between takinglevothyroxine and calciumproductsM asks: I found the feature on thyroid andweight gain (BTF News 91, page 8) to bereally helpful but have a query in relation tosome advice that was published alongside it.

Within the section headed ʻTips and adviceon diet and thyroidʼ the author identifies thatcalcium-rich foods can interfere withlevothyroxine absorption, but there is adiscrepancy within the article around theinterval which should be left, suggesting boththat there should be ʻa gap of four hoursbetween the twoʼ, and that levothyroxine is infact best taken on an empty stomach at leasthalf hour before foodʼ. It is then stated thathaving left a thirty minute gap, lots of milkshould be avoided.

The BNF (British National Formulary) statesthat levothyroxine should ʻpreferably betaken at least 30 minutes before breakfast,caffeine containing liquids or othermedicationʼ.

I have previously been advised that a gap offour hours should be left betweenlevothyroxine and calcium supplementswhich might be the gap alluded to in thearticle, but would be interested to know ifthere is clear evidence to avoid lots of milkfor four hours after taking levothyroxine as issuggested, and if this is the case why theBNF is out of step? Lastly, if the advice in thearticle is correct, presumably reducing mybreakfast milk will increase levothyroxinetake-up? Since I only have annual bloods,how should this change be managed?

Our medical adviser replies: The publishedevidence on the topic derives mainly from

two studies; One entitled Timing oflevothyroxine administration affects serumthyrotropin concentration. ClinicalEndocrinology Metabolism. 2009;94:3905-3912www.ncbi.nlm.nih.gov/pmc/articles/PMC2758731/, and the other Effects of evening vsmorning levothyroxine intake: a randomizeddouble-blind crossover trial. Archives ofInternal Medicine 2010;170:1996-2003www.ncbi.nlm.nih.gov/pubmed/21149757

The first study compared patients takinglevothyroxine within 30 minutes of breakfastwith taking levothyroxine four hours after thelast meal of the day. Absorption oflevothyroxine was better when taken fourhours after the last meal. The second studyshowed that taking levothyroxine 60 minutesbefore breakfast on an empty stomach wasbetter than taking it within two hours of thelast meal of the day, which in turn was betterthan taking it within 20 minutes of breakfast.So, we can conclude that taking food mayinfluence the absorption of levothyroxine forup to four hours and the closer togetherthese are the greater the effect onlevothyroxine absorption. Calcium salts havebeen reported to interfere with the absorptionof levothyroxine (see Exaggeratedlevothyroxine malabsorption due to calciumcarbonate supplementation ingastrointestinal disorders by AnnPharmacother. 2001 Dec;35(12):1578-83)www.ncbi.nlm.nih.gov/pubmed/11793625.I am not aware of any literature specificallyimplicating milk and dairy products, howeverit is likely that calcium in food products hassimilar effects to calcium tablets.

I hope this explains why the advice is notsimple and may appear to be inconsistent! Iwould add that for most people takinglevothyroxine the effects of timing on thecontrol of the condition (hypothyroidism) areminor and of no clinical significance with theexception of pregnant women and patientswith a previous history of thyroid cancer whoare on suppressive levothyroxine treatment(where minor deviations of thyroid hormonelevels may have important consequences).For patients who are established onlevothyroxine treatment and whosebiochemical control is satisfactory, there isno need to be concerned or change routine,if whatever you are doing is working for you.

Cholesterol and the thyroidB asks: Iʼve had an underactive thyroid forseveral years, I eat a healthy diet with nounhealthy fats, cakes etc. However, to mysurprise I now have a cholesterol level of6.7, but my doctor didnʼt acknowledge mysuggestion of a connection with my thyroid

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

Please address general letters to: TheEditor, BTF News, The British ThyroidFoundation, Suite 12, One SceptreHouse, Hornbeam Square North,Hornbeam Park, Harrogate HG2 8PB orby email to editorialboard@btf-thyroid.org

Please address medical queries to theMedical Enquiries Coordinator at theaddress above or by email to medical-query@btf-thyroid.org. Please rememberto include your membership number.

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

BTF News 92 l PAGE 13

issue/medications. As she knows I donʼtdrink, smoke and eat a plant whole food diet,she said it more likely inherited. Not so, plusIʼd never had an issue with cholesterol priorto having my thyroid issue and Iʼm now 53. Ihave low blood pressure, so again not thenorm if you have high cholesterol from dietor lifestyle.

So my question is, do you have anyinformation that I can take to my doctorabout this issue? For example is it helpful toup my levothyroxine a little or every secondday, to see if that reduces cholesterol etc?

Fifty two years of age is the average for themenopause, Iʼm not quite there yet, butobviously very likely to be in the process. Ifitʼs not my thyroid, could it be themenopause causes a shift?

Iʼm not keen to start on statins at some pointin the future, but as I already eat an oat bran,fruit, vegetable and bean diet, I know I canʼtjust stop eating or drinking something that isconsidered unhealthy or is high cholesterol. Iwondered whether I could have mylevothyroxine dose adjusted up slightly butas my results are within the normal range, Iknow my doctor wonʼt be keen to adjust mydose without a good argument to support theidea.

Any help you can give will be greatlyreceived. From the above Iʼm obviouslyrunning with the idea my thyroid is to blame,but I am open to other ideas too, if I can seea connection. In many ways I wish it werebecause I ate unhealthily, was a smoker ordrinker, as I could then just change my dietor lifestyle and thereby reduce mycholesterol naturally.

Our medical adviser replies:Whilst untreated hypothyroidism may beassociated with raised cholesterol, it isunlikely that adequately treatedhypothyroidism with a normal serum TSHconcentration is responsible here. Similarly itis unlikely that the menopause is causingthis. It is excellent that you lead a healthylifestyle with a healthy diet although anumber of people who lead healthy liveshave problems with raised cholesterol andrequire treatment with statins for this.

If there is scope to increase the dose oflevothyroxine slightly then it would be OK todo this as long as serum TSH stays in thenormal range. I do however feel it is unlikelythat this will lower the serum cholesteroldramatically.

Thyroid eye disease referraland supportR asks: I was diagnosed with Gravesʼdisease around 15 months ago, which is

comparison with normal children. I amwondering about the contradiction betweenthe correctness of the facts on the BTFwebsite, as a scientific approved website,and those articles. My child is a 16 days oldgirl with positive CHT and I found thesedifferent texts regarding this issue confusing.I do appreciate if you could help or addressthis contradiction on your website.

Our medical adviser replies:The outlook for babies with CHT who aretreated early is excellent which is why wescreen for this condition.

Babies with severe CHT may (in theliterature) have subtle differences whencompared to children without CHT as yousuggest (some but not all studies) - but theystill attend normal school and are unlikely torequire special needs input etc. Some of thesuboptimal outcome data may also reflectsuboptimal management in childhood ofcourse. Babies born now are managedbetter than babies born in the past (startedon levothyroxine more quickly, reviewedmore frequently etc).

It is worth reflecting on the fact that whetheryou are born into a loving, caring, supportiveenvironment matters much more….and alower IQ (by even a few points) does notmean an abnormal IQ.

Hence I think the statement ʻYour child hasan excellent chance of a normal childhood,going to a normal school and living a normalindependent life as an adultʼ is undoubtedlycorrect - I know because I see it all the time!The literature is confusing though - as youhave discovered.

How lucky we are to live in countries wherescreening for CHT takes place...it is not so inmany parts of the world.

being controlled. I still have pain around myright eye socket and occasional feeling ofgrittiness. My eyes also do not look the samein comparison to photos of when I wasaround 17. This has all been devastating andupsetting to me. I wonder if you have anyinformation on the best treatment availableto address the ʻsensationʼ around the righteye (orbital) and how I can obtain orbitalsurgery to help to return my eyes to the waythey were previously. Is there any way I canalso be supported with this matter? Mycondition has really changed my life and Ifeel a lot more restricted now, so any supportwhatsoever would be marvellous.

Our medical adviser replies:You should discuss with your GP orendocrinologist whether you have thyroideye disease. If that is the case then referralto one of the multidisciplinary centres fortreatment of thyroid eye disease on theNHS may be indicated. Recent nationalguidelines published by the Royal College ofPhysicians - Management of patients withGravesʼ orbitopathy: initial assessment,management outside specialised centresand referral pathways,www.clinmed.rcpjournal.org/content/15/2/173.full.pdf+html (Clinical Medicine 2015;15:173-8) recommend that GPs or endocrinologistsshould refer patients whose dominantclinical features are due to thyroid eyedisease to specialised ophthalmology unitsor joint thyroid eye clinics. The precise typeof treatment most appropriate will depend onthe assessment at the specialised clinic andmay include orbital decompression.

The BTF has a list of telephone volunteersfor members to call for support (see the backpage of this newsletter) that you may findhelpful. You can also join the BTF closedFacebook group for people withhyperthyroidism which many people find tobe a useful source of support.

Congenital hypothyroidismand IQM asks: I have read a page on your websiteregarding congenital hypothyroidism (CHT)and newborn babies www.btf-thyroid.org/information/leaflets/42-congenital-hypothyroidism-guideRegarding CHT patients it has been writtenʻScreening for CHT at birth and startingtreatment if the test is positive means that alow IQ and other development problems canbe avoided.ʼ However I have seen somescientific articles, which are investigating IQscales in children with CHT (even with earlytreatment) and normal children in a long-term and short-term period, which suggestCHT children, would have a lower IQ in

PAGE 14 l BTF News 92

Leaving alegacy to theBTFHelp to make a realdifference by rememberingBTF in your Will. Any gift,large or small, makes a realdifference. Legacydonations allow us tocontinue providing life-changing support to peoplewith thyroid disorders.

If you do decide to remember BTF in your Will, your gift will mean that BTF will still behere for people who need our support in years to come. By leaving a legacy you cantake advantage of the reduced rate of inheritance tax of 36% (previously 40%) thatcame into effect from April 2012 for estates leaving a legacy to charity. Call 01423810093 or email legacies@btf-thyroid.org for an information pack.

Shop online and raise money!

Have you heard about easyfundraising yet? Itʼs the easiest way to help raisemoney for the BTF! If you already shop online with retailers such as Amazon,M&S, Argos, John Lewis, Comet, Vodafone, eBay, Boden and Play.com thenwe need you to sign up for free to raise money while you shop!So how does it work? You shop directly with the retailer as you would normally, but if you sign up tohttp://www.easyfundraising.org.uk/causes/btf for free and use the links on theeasyfundraising site to take you to the retailer, then a percentage of whateveryou spend comes directly to us at no extra cost to yourself.

How much can you raise?Spend £100 with M&S online or Amazon and you raise £2.50 for us. £100with WH Smith puts £2.00 in our pocket and so on. There are over 2,000retailers on their site, and some of the donations can be as much as 15% ofyour purchase.

Save money too!easyfundraising is FREE to use plus youʼll get access to hundreds ofexclusive discounts and voucher codes, so not only will you be helping us,youʼll be saving money yourself.

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

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

How it works

For just £1 per week you will beallocated a six digit Unity lottery number.You can purchase more than one entry ifyou wish. Every Saturday, the luckywinners are selected at random and theprize cheques issued and posted directlyto you, so there is no need for you toclaim. You must be 16 over to enter.Winners have to match 3,4,5 or all 6digits of the winning number in thecorrect place in the sequence.

To join go to:www.btf-thyroid.org/support-us/3-play-the-btf-lottery

Directlysupport theBTF byplaying theUnity lotteryand be inwith thechance ofwinning£25,000!

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£10005 digits

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CPhoto 123rf.com

JustTextGiving from VodafoneYou can support people with thyroid disorders by donating via your mobilephone. Just text THYR01 and the amount you would like to donate to 70070.

BTF News 92 l PAGE 15

Local Groups

Below is a list of official BTFLocal Groups with details oftheir meetings:

BirminghamNext meeting: TBCLocation: Yardley Baptist Church, RowlandsRoad, South Yardley, B26 1AT, off the A45Coventry Road. Free parking available.Programme: Patient Group, Information andSupport Meeting Head & Neck Disease(including the thyroid).Donation: £2 voluntary donation.Contact: Janet Tel: 0121 628 7435 or email:janetdmp@googlemail.com

CambridgeNext meeting: Saturday 12 November 201610am-1pm (provisional).Location: Weston Colville Reading RoomCB21 5NXProgramme: Check the BTF for details.Tea,coffee and biscuits provided.Donation: Suggested minimum donation: £4to cover costs.Contact: Mary on 01223 290263 or emailbutterflyecho@hotmail.comPlease call or email if you are thinking ofattending the meeting to give us an idea ofnumbers.

EdinburghNext meeting: The Edinburgh BTF SupportGroup meets on the last Tuesday of themonth except for school holidays.Check the BTF website for further details.Location: Liberton High School, GilmertonRoad, Edinburgh, EH17 7PT.Contact: Margaret Tel: 0131 664 7223 oremail: M2mcgregor@aol.com

Leeds (Wharfedale)Next meeting: Caroline is currentlyconfirming details of her next meeting.See the BTF website for more details.Contact: Caroline on 0113 288 6393 oremail: cfields237@btinternet.com

LondonNext meeting: See the BTF website formore details.Location: Crown Court Church, RussellStreet, Covent Garden, London WC2B 5EZhttp://www.crowncourtchurch.org.uk/where-to-find-us/Programme: TBADonation: Suggested min donation £3.Contact: Denise denisesims@btf-thyroid.org

Milton KeynesNext meeting: Saturday 8 October 2016Location: The Pavilion, Open University,Milton Keynes, MK7 6AA. Programme: Patientʼs experiences - see theBTF website for details.Donation: £2 voluntary donation.Contact: Wilma Tel: 01908 330290 or seewww.thyroidmk.co.uk or find us onFacebook.

Milton Keynes welcomed DrMark Vanderpump to theirgroup meeting in June. He gavea talk to a packed room on themanagement of hypothyroidismand its challenges.

Please check the BTF website (www.btf-thyroid.org) for the latest details. Pleasealso check before you attend a meetingthat it has not had to be cancelled.

Are you interested inbringing people togetherto start a BTF supportgroup in your area? Wewould particularly like toset up new groups inthe North East, NorthWest, Bristol/Bath areaand Wales. Guidanceand support from BTFHQ is available.

Milton Keynes local BTF Groupraised a fantastic £270 fromtokens collected at their localWaitrose in the Green CommunityToken scheme they took part inearlier this year.

Buy a teddy and supportthe BTFBuy one of these adorableteddies for £7.50 and all theprofit will go towards the BTF.Go to theBTF websiteto orderonline or bycheque bydownloadingand sendingwith theorder formon thewebsite.

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

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

Birmingham Janet (PC,CS,RAI,PH) 0121 6287435janetdmp@googlemail.comCambridge Mary (O,RI,U) 01223 290263butterflyecho@hotmail.comEdinburgh Margaret (PC) 0131 6647223

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

OUR PARTNER ORGANISATIONS

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

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

Thyroid Cancer Support Group Ireland www.thyroidcancersupport.ieemail info@thyroidcancersupport.ie

Butterfly Thyroid Cancer Trust Tel: 01207 545469 www.butterfly.org.ukCancer52 www.cancer52.org.ukThyroid Eye Disease Charitable Trust Tel: 07469 921782www.tedct.org.ukBritish Thyroid Association www.british-thyroid-association.orgBritish Association of Endocrine and Thyroid Surgeonswww.baets.org.uk

Ch Thyroid disorders in childrenC Cancer of the thyroidPC Papillary cancer of the thyroidCS Thyroid cancer surgeryRAI Radioactive iodine (I-131) ablation

RI Radioactive iodine treatment for anover-active thyroid

TED Thyroid eye diseasePH Post-operative hypoparathyroidism

KEY

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

Leeds (Wharfedale) Caroline (O,U) 01132 886393London Denise (U) denisesims@btf-thyroid.org

Milton Keynes Wilma (U) 01908 330290

G GoitreTS Thyroid Surgery (non-cancer)U Under-active thyroidO Over-active thyroidGR Gravesʼ disease

2 to 5pm Monday, Tuesday and Thursday 6 - 8pm weekdays10am to 2pm weekdays

After 6pm weekdays and anytime weekendsUp to 8pm

Members living in the UKBy cheque By standing order Lifetime membership

Members living overseas £25 Europe

Full: £20 per yearConcession: £10 per year

By cheque from a UKbank account

By standing order througha UK Bank

Full: £17 per yearConcession: £8.50 per year

By sterling bank draft drawn ona UK Bank

CURRENT MEMBERSHIP RATES

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

£200 by cheque

The British Thyroid Foundation, Suite 12, One Sceptre House, Hornbeam Square North, Hornbeam Park, Harrogate HG2 8PBTel: 01423 810093 www.btf-thyroid.org Office enquiry line open: Mon - Thurs: 11am-2pm.

BritishThyroidFoundation @britishthyroid

PAGE 16 l BTF News 92

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

Next issue:25YEARSOFTHE BTF

A SPECIALANNIVERSARY EDITION