Issue no 72 Spring 2010 BBTTFF …btf-thyroid.org/images/documents/btf_newsletter_72_spring_2010.pdf · The British Thyroid Foundation l 2nd Floorl 3 Devonshire Place l Harrogate

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

www.btf-thyroid.org Issue no 72 Spring 2010

IN THIS ISSUE....News from BTF HQ............ page 2Project updates..................page 5Donations........................... page 6BTF research news….........page 7Meet the ... new BTFchildren’s coordinator,Debby Benjamin.................page 8Making sense of scienceclaims, by Julia Wilson ofSense About Science.........page 9Case study: ‘My life is anightmare’........................... page 10Letters .................................page 11Childrenʼs Corner...............page 12Thyrotoxicosis explainedfor young people, by TimCheetham ........................... page 12News from BTFlocal groups........................page 14

PAGE 1 l BTF News 72

The Clinical Management Workshop on ʻTheManagement of Thyroid Cancerʼ, which wasjointly supported by BTF and the SocietyʼsClinical Endocrinology journal, was the perfectsetting for raising awareness of the new patientbooklet among endocrinologists, endocrinenurses, and researchers. Copies were handedout to the participants. The workshop waschaired by A. Allahabadia (Sheffield) andR. Mihai (Oxford). The speakers were allhighly-regarded international authorities onthyroid cancer and we were honoured tosupport such a high-quality workshop.Dr Petros Perros (Newcastle) who chaired theBritish Thyroid Associationʼs 2007 guidelinescommittee spoke of the need for clinicians tomanage not just the nodule but the patient, andoutlined three ways to improve patient care -ʻcommunicate, communicate, andcommunicateʼ.Mr Fausto Palazzo (London) who is a thyroidsurgeon explained the importance ofconcentrating thyroid surgery in the hands offewer, high-volume surgeons to reduce the riskof long-term side effects.Professor Furio Pacini (Siena) who hasauthored many key papers and has beeninvolved in developing both the American andEuropean guidelines spoke about radioactive

iodine treatment and long-term follow-up. Hehighlighted the results achieved withThyrogen® compared with withdrawing patientsfrom thyroid medication before treatment andexplained how studies show they are equallyeffective.Finally Dr James Fagin (New York) gave anoverview of new drugs under investigation thatmay improve outcomes for patients withadvanced or rare forms of thyroid cancer.The new booklet contains an endorsement byTV presenter and sports journalist ClareBalding who was treated for thyroid cancer lastyear (see page 3). The booklet attracted muchattention at the conference. It has already beenendorsed by the British Thyroid Association(BTA), the British Association of Endocrineand Thyroid Surgeons (BAETS), theAssociation for Multiple EndocrineNeoplasia (AMEND), Butterfly ThyroidCancer Trust, Thyroid Cancer SupportGroup Wales, and HPTH(Hypoparathyroidism) UK.As Janis Hickey (BTF Director) and CaroleIngham (BTF cancer group coordinator) write intheir introduction to the booklet: ʻThyroid cancerhas a very high cure rate, and after treatmentmost patients go on to live a full and normal life.But if you are worried you may have thyroidcancer, have just been diagnosed, or are goingthrough treatment, you may be feelingbewildered and confused, and you and yourfamily and friends may want to know what isinvolved and what treatment and support areavailable to you.ʻThe British Thyroid Foundation Cancer Grouphas produced this booklet in order to provideinformation about the different types of thyroidcancer, available tests and treatment, andsources of further help. What makes thisbooklet special is that most of ithas been written or reviewed bythyroid cancer survivors whohave themselves beenthrough diagnosis andtreatment.ʼContinued on page 2

NEW THYROID CANCER BOOKLETLAUNCHED AT MANCHESTERCONFERENCEThe second revised edition of the BTF booklet Thyroid Cancer - For Patients ByPatients was launched in Manchester last month. The booklet was published just in timefor the Society for Endocrinology BES conference in Manchester Central conferencecentre, 15-18 March.

Take aTiPand pass it on.See story onpage 3


New thyroid cancer booklet launched(continued from front page)This edition has been revised in line with theBritish Thyroid Association Guidelines for theManagement of Thyroid Cancer (2nd edition,2007). The information about the low-iodinediet (LID) has been expanded to include aseven-day meal plan and recipes, and achecklist of items you might need to take intohospital if you are having radioactive iodineablation.This edition also includes more informationabout the possible side effects of surgeryand radioactive iodine treatment, aboutadvanced thyroid cancer, about promisingresearch into new treatments for iodine-resistant cancers, and about thyroid cancerand pregnancy.There is some information about the socialissues that survivors face, such asinsurance, and getting back to work.Because there are survivors living today whohad thyroid cancer in the 1950ʼs and 1960ʼsthere is more information available about lateeffects. We have therefore added someinformation about possible long-termconsequences of treatment.The booklet also contains checklists ofquestions to ask your doctors at differentstages of treatment, an expanded glossaryof terms you may come across as a patient,and a list of helpful addresses.

The book was revised and edited by BTFNews Editor, Judith Taylor (herself a thyroidcancer survivor) with input from many BTFmembers and sister organisations. The low-iodine diet, meal plan and recipes werecontributed by Amanda Connor andreviewed by Ian Adam.Special thanks to our reviewers, Dr CliveHarmer, Dr Petros Perros, Ms AlisonWaghorn, Kate Farnell (Butterfly ThyroidCancer Trust), Mr Desmond McGuire andSister Margaret Morris. Thanks also to theBTF local coordinators, telephone supportvolunteers and Membersʼ Panel, whoreviewed the booklet and gave helpfulsuggestions, and to BTF staff and volunteerswho kept things going while Janis wasspending time on the booklet. And gratefulthanks to our designer, Paul Keen, both forthe design and for working with us to speedup the production so that we were able to getthe booklet to the conference.

The booklet costs £3.50 formembers and£6.50 for non-members.Copies can beobtained from:The BritishThyroidFoundation,2nd Floor,3 DevonshirePlace,Harrogate,North Yorkshire,HG1 4AA.Tel/Fax: +44 (0)1423 709707 or 709448, or byemail [email protected].

News from BTF HQ

Office staff and volunteers at BTF HQ

The opening three months of the year have been busy here. Our return to work atthe beginning of January was perhaps similar to that experienced by many of youthat is, delayed by snow. (We know you probably donʼt want to hear the ʻsnowʼword, but, as I write, there is still snow on the distant hills visible from the BTFoffice, on Sutton Bank to the north.)

We have had a good start to the year. Although we experienced a reduction in thesale of BTF Christmas cards, donations were higher, and membership renewalshave been higher too in the first quarter of the year than in previous quarters.Weʼve had some amazing success stories from fantastic fundraisers who havebrought in funds to help support our work. We have to make a special mention ofDave Worrall, who spent a whole year fundraising for BTF during his Captaincyof the Poulton-le-Fylde golf club – a big thank you from all of us. If you wish toraise funds for BTF please do contact us …. and, in particular, if you wish to takepart in the ASICS London Fun Run on 11 July., we still have a couple of placesleft (see page 7).

Last month saw the launch of the second edition of the BTF booklet ThyroidCancer - For Patients, By Patients, made possible by the expertise of the BTFNews Editor, Judith Taylor. We hope to emulate this achievement with similarbooklets about thyroid disorders in children and young people. We are grateful toBTF member and volunteer, Pam Cowburn, for taking a lead in the writing andpreparation of this set of literature. The pregnancy project has got off to a flyingstart, thanks to Donna Reed, a volunteer who contacted us literally hours beforewe closed the office for Christmas. Our thanks to everyone involved in BTF workin so many ways: the team in the office, volunteers who run local groups andprovide telephone support, and our medical advisors and members. Weappreciate your input so much.

I will end by hoping that you all had a Happy Easter - which seems strange whenthere is not a single daffodil in sight. But perhaps by the time you receive thisnewsletter Spring will have sprung. It will be most welcome.

Janis HickeyBTF Director and Secretary to the Trustees

PS We are hoping to be successful in our application for a stand at the YorkshireShow: 13-15 July 2010 in Harrogate. If you happen to visit the Yorkshire Show, docome and seek us out. And… if you have skills in face-painting, creating shapesout of balloons, or similar activities, or know of someone with those skills, andwould be willing to volunteer your time, please contact me. Many thanks.

BTF News 72 l PAGE 3

BTF stand at Manchesterconference

We were very pleased to be invited toexhibit at this yearʼs Society forEndocrinology BES conference inManchester. Not only did this give us anopportunity to support the cancerworkshop and launch our new booklet(see lead story) but we were also able tomeet many clinicians at the stand and alsoexchange ideas with representatives fromother patient groups. We also attended ameeting of patient group representativesorganised by the Society forEndocrinology which we will be coveringin the next issue. Our thanks to theSociety for Endocrinology for facilitatingthese contacts.

Take a Ti P! Help raiseawareness of thyroid andpregnancy

This issue of BTF News includes asample TiP card to help raise awarenessof thyroid disorders and pregnancy. Itsmessage is simple: if youʼre trying for ababy and you have a history of thyroiddisease in your family, are being treatedfor thyroid disease, or have experiencedthyroid disease after any previouspregnancy, see your doctor! You mayneed your medication to be increased orchanged.

Donna Reed writes: This quick littleinformation card can speak volumes whenpassed on to our friends and family. Lookfor yours in the newsletter today and passit on.

Let us know what you think about the Ti Pcard by emailing [email protected]. And if you need more cards,let us know. Send an email to the addressabove, or drop us a line (contact details onthe back page).

NEWS ABOUT BTFWelcome to….Donna Reed, who joined the BTF familyin January 2010 as a full-time volunteer.Donna is a PhD student at the Universityof the Incarnate Word, San Antonio,Texas, and is completing her internationalinternship with us. In 2001, Donna had athyroidectomy after nodules werediscovered and has been taking thyroidmedication since that time.

Donna will be working on special projectssuch as the BTF pregnancy project (seeelsewhere in this issue) and will beattending conferences representing BTFand some of the local group meetings. Inaddition, Donna helps out in the office withgeneral administration and telephone callsand has become a committed member ofthe HQ team.

Katharine Jeans -a BTF member - hasrecently joined the officeteam as a volunteerhelping out with officeadministration…. awelcome addition to theBTF HQ team whosehelp is very muchappreciated.

Welcome back to….Angela Hammond, BTF Office volunteer,who recently had a very bad bout of theʻflu - Angelaʼs case history abouthypothyroidism appeared in the last issueof BTF News. Weʼre glad you managed torearrange your holiday, and hope youhave a lovely time!

Our best wishes to….Sandra Brownlee, local coordinator forLiverpool, who has not yet fully recoveredfrom the back operation she had last year.Sandra is putting her local group on hold.She will let us know when she is able toorganise meetings once again, and we willput a notice in the newsletter.

The BTF stand at Manchester. From left to right: JanisHickey, Donna Reed and Professor John Lazarus

Many of you will have seen TVpresenter and sports journalist ClareBalding, who was diagnosed withthyroid cancer last year, reporting fromVancouver on the Winter Olympics.Somehow Clare also found time whileshe was there to read our new thyroidcancer booklet and send us this review:

ʻIf youʼve ever been diagnosed withthyroid cancer or suspect that you mayhave it, this booklet is a must-read.There is valuable information on everypage and I would particularly echo theadvice to take someone with you whenyou go to see the specialist. After youhear the word “cancer” you do notreally hear much more that is said andyou need someone else to ask theappropriate questions.

ʻWithin the last ten months, I have hadtwo lots of surgery and radioactiveiodine treatment and I have barelymissed a beat as far as work and life ingeneral are concerned. I decided toattack the disease full on, never to useit as an excuse, and never to getnegative about the outcome. It not onlyhelped me to be positive but I do think ithelps those around you, who can oftenworry more than you would.

ʻHaving read the booklet again, I nowrealise that I have been drinking milkytea too close to taking my pills in themorning, which may have beenaffecting their efficiency. I can thereforerecommend reading it more than once,and perhaps getting those you love toread it too.ʼ

Thank you Clare. We hope youcontinue to go from strength tostrength! – Ed


chairperson of the Scottish ParliamentʼsHealth and Sport Committee.

The speakers were Alistair Kemp, Chairof Rare Disease UK; Professor Sir IanWilmut, best known as the leader of theresearch group that in 1996 first cloned amammal from an adult somatic cell (Dollythe Sheep); and Susan Green whose sonhas a rare metabolic disease, Niemann-Pick Disease. Pictured here, Margaret (right) talking with Sir Ian Wilmut

The EditorThe Daily TelegraphVictory HouseMeeting House LaneChatham, KentME4 4TT 22 September 2009

Dear Editor,

I am writing on behalf of the British Thyroid Foundation, a patient support organisation thatprovides evidence-based information to people with thyroid disorders and works closely withprofessional endocrinologists (doctors who specialise in treating hormone disorders,including the thyroid). We were surprised to read some of the advice about how to managean underactive thyroid in the article that you published on 18 September.

The information you provide is extremely confusing for people with an underactive thyroidand some of it is incorrect. While we agree entirely with the response from the GP, theresponses from both the Ayurvedic herbalist and from the naturopath contained misleadinginformation.

The Ayurvedic herbalist recommended avoiding ʻall foods in the brassica family (cabbage,broccoli, brussels sprouts and cauliflower) and soya products, as these can obstruct thyroidhormone formationʼ. On the contrary, foods in the brassica family would only affect thyroidfunction if eaten in vast quantities (more than could be consumed in a normal diet). Theyare safe to eat and contain valuable nutrients.

Soya is known to interfere with the absorption of thyroxine tablets, as do iron and calciumsupplements, and should therefore be taken several hours apart from the tablets.

With regard to the naturopathʼs advice, by eating a balanced diet, there is no need for anyiodine supplementation in this country. If the thyroid gland is completely damaged, neitheriodine in a normal diet nor in sea vegetables will have any effect. If the thyroid gland is onlypartially working, excess iodine can actually interfere with the treatment by damping downthe activity of the remaining thyroid gland. The reason for this paradoxical effect of highdoses of iodine is established and relies on a complicated biochemical mechanism calledthe Wolff-Chaikoff effect. Iodine supplements will not help to reduce the dose of thyroxinetreatment required nor will they boost a failing thyroid gland.

The sentence: ʻIdeally, you would work with a practitioner experienced in hormonalproblems, such as a qualified homeopath or herbalist ...ʼ is completely false. The medicalpractitioners who are experienced in hormonal problems are endocrinologists.

We would be grateful if you would publish this letter.

Yours sincerelyMrs JL HickeyDirector, British Thyroid Foundation

Pregnancy project groupmeets in HarrogateThe BTF Pregnancy Project groupconsisting of Donna Reed, Janis Hickey,Professor John Lazarus and Dr GraceGibson (both BTF Trustees) met inFebruary to brainstorm ways to publicisethe message of thyroid disorder andpregnancy.

The project messages are: 1) increasingthe dosage of thyroxine by approximately25-50 mcg in those women with existinghypothyroidism; 2) timely diagnosis andtreatment of postpartum thyroiditis; and 3)the risks to mother and baby if a thyroiddisorder is left untreated during pregnancy(miscarriage, pre-eclampsia, and placentaabruptio).

Professor Lazarus has had two articlesabout pregnancy and thyroid accepted forpublication in two midwifery journals andan article that Donna wrote on thyroid,pregnancy and the risks has beenaccepted for publication in the Departmentof Health Children, Families and Maternitye-bulletin.

Pregnancy and thyroid disorders werealso highlighted at the Society forEndocrinology BES conference in Marchand we will be raising awareness at theRoyal College of General Practitionersʼconference in October.

Rare Disease DayMargaret McGregor, BTF localcoordinator for Edinburgh, attended areception held on 28 February in theScottish Parliament to highlight RareDisease Day 2010. She sent us thisreport.

BTF is a member of Rare Disease UK andthis year the Day focused on theimportance of research into rare diseases.

The reception, which was attended byover one hundred people, was hosted byChristine Grahame MSP who is

Janis Hickey, John Lazarus, Grace Gibson and DonnaReed

BTF writes to The Daily TelegraphMembers may have seen an article in The Daily Telegraph of 18 September 2009entitled Health Advice: underactive thyroid in which three people - a GP, an Ayurvedicherbalist and a naturopath - each gave advice on how to treat an underactive thyroid.See: http://www.telegraph.co.uk/health/healthadvice/6201576/Health-advice-underactive-thyroid.html.We wrote to the Daily Telegraph to explain that the information presented in this articlecould be confusing for people with an underactive thyroid, and that some of theinformation was incorrect. The newspaper did not publish our letter so we arereproducing it here.


NEWS AND VIEWSHealth scare in New ZealandWidespread attention by the media mayhave been a key factor in the dramaticincrease in reports of adverse reactionsfollowing the introduction of a newformulation of the drug Eltroxin(levothyroxine) in New Zealand, accordingto a recent article in the British MedicalJournal (BMJ).

In 2007 pharmacies in New Zealandbegan dispensing a new formulation ofEltroxin, the only thyroxine replacementdrug approved for use in New Zealand.The rate of adverse reaction reports rosefrom 14 complaints in 30 years to astaggering 1,400 complaints in 18 months- a 2,000-fold increase. The effects werewidely reported in the media. It was alsorumoured that the tablets were beingmanufactured in India and that theycontained genetically modified ingredientsand monosodium glutamate. Onenewspaper published a story headlinedʻChanges to drug blamed for illnessʼ, anda major television channel ran severalstories about reactions in Eltroxin patients.

According to the authors of the BMJarticle, the New Zealand Medicines andMedical Devices Safety Authority(Medsafe) responded by consulting localendocrinologists and with agencies inother countries where the new formulationof Eltroxin was being used. Although somecountries reported a small increase in thenumber of reports, none had such adramatic increase as in New Zealand.Tests showed that the new tablets werebioequivalent to the old tablets, had thesame levels of thyroxine (T4) and had theingredients as listed by the company.

In response to pressure, Medsafeapproved two additional brands oflevothyroxine in October 2008, enablingpatients to switch to an alternative brand.

By April 2009 the level of adverse reportshad dropped to nearly the same level asbefore the formulation was changed, andby June 2009 many patients had goneback to the drug. It was estimated that80% of patients were on Eltroxin.

So why the scare? The BMJ authorsbelieve this was due to a number offactors: Among them, they write: ʻIt seemslikely that many patients taking Eltroxin inNew Zealand misattributed unrelatedphysical symptoms to the new formulation.Additionally, symptoms that resulted frompossible small differences inbioequivalence may have beenmisattributed as harmful adverse effectsrather than an indication that the dose ofthyroxine required re-evaluation.ʼ

In the view of the authors, the way thenew formulation was introduced may haveplayed a role, as it was the only approveddrug at the time. And information about aforthcoming change did not reach themajority of patients beforehand.

ʻThe adverse reports after the changewere picked up by the media, which inturn greatly increased the number ofreports ... and the spread of inaccurateinformation on patient websites alsoadded to patientsʼ concerns and tocomplaints about symptomsʼ say theauthors. ʻThat patients were dependent onthe treatment provided additional concernand impetus to report symptoms.ʼ

ReferenceFaasse K, Cundy T, Petrie K. Thyroxine:anatomy of a health scare. British MedicalJournal 2009;339:b5613

Thyroxine level linked tohard birth?As reported on the BBC News Onlinerecently, a medical research team at theUniversity of Tilburg, Holland has foundthat low to normal levels of thyroxine inpregnancy may be linked to a difficultbirth. Their research findings, published inthe journal Clinical Endocrinology, werebased on a study of nearly 1,000 women.They found that lower levels of thyroxineat 36 weeks of pregnancy were stronglylinked to abnormal positioning of thebabyʼs head and a greater risk of assisteddelivery. Babies were more oftenpositioned wrongly, these labours weremore often longer and harder, and deliverymore often had to be assisted by forceps,ventouse, or caesarean.

Commenting on behalf of the authors,Professor VJ Pop told the BBC: ʻRecentfindings have shown that motordevelopment in children at the age of twois related to low levels of thyroid hormonein pregnancy. It follows that impairedmaternal thyroid function could alsoinfluence foetal movement.ʼ

Commenting on the study, ProfessorJohn Lazarus, member of the BTF Boardof Trustees, told the BBC that the linkfound was not necessarily causal, butadded ʻHowever it does highlight theimportance of checking thyroid hormonelevels in pregnancyʼ.

ReferencesWijnen HA, Kooistra L, Vader HL, EssedGG, Mol BW, Pop VJ. Maternal thyroidhormone concentration during late

BTF PROJECTUPDATESThyroid eye disease

Janis Hickey writes: With the ThyroidEye Disease Charitable Trust (TEDct) weare working towards assisting theimplementation of the AmsterdamDeclaration on Gravesʼ Orbitopathy:Improving Outcomes for Thyroid EyeDisease (see cover story, BTF Newsnumber 71). The next stage is to inviterepresentatives of professionalorganisations with an interest in thyroideye disease to join a working group andbring their expertise to the process.

Thyroid and pregnancy

Donna Reed writes: The PregnancyProject group met in February to outlinestrategies to publicise the message ofthyroid disorder and pregnancy. Themessage is already getting out, see articleon page 4.

Thyroid disorders in children

Penny Root writes: The group met inLondon recently to discuss our proposedGuide for parents and their children withthyroid disorders. Pam Cowburn, a BTFmember and writer, has already startedwork on a booklet for parents and carers,aided by Debby Benjamin who iscollecting case histories.

Thyroid Cancer

Carole Ingham and Judith Taylor write:We met during the BES conference inManchester following the launch of ournew thyroid cancer booklet to discussexpanding the group and setting somenew topics to explore further. Among ourideas: a survey of thyroid cancer patientsʼexperience with travel insurance, and asurvey of radioactive iodine treatmentrooms around the UK. Bear with us as wework out our plans.

28-day prescribing

Janis Hickey writes: On 1 December2009 the British Thyroid Foundation andBritish Thyroid Association wrote a jointletter to the Secretary of State for Healthto voice repeated concerns about thepractice of prescribing medicines for only28 days. The MP for Harrogate andKnaresborough, Phil Willis, followed thisup with a letter of his own in January. Atthe time of going to press we have stillhad no response... Meanwhile, readerscontinue to write in with their experiences.See Letters and Comments in this issue. Continued on page 6


gestation is associated with foetal positionat birth. Clinical Endocrinology (Oxf) 200971 (5):746-51

BBC News. Low hormone levels inpregnancy linked to hard birth 23December 2009http://news.bbc.co.uk/1/hi/health/8425901.stm downloaded 2 February 2010

Living withhypoparathyroidismA leaflet for patients living withhypoparathyroidism has just beenproduced by HPTH UK, a nationalvoluntary organisation working to supportpeople with hypoparathyroidism and otherrare parathyroid conditions and to promotebetter medical understanding of this raredisorder.

The leaflet was launched at the Society forEndocrinology BES conference held inManchester in March. It is the first of itskind in the UK and has been prepared bythe HPTH UK Clinical Advisory Team andHPTH UK in conjunction with the Societyfor Endocrinology.

The commonest cause ofhypoparathyroidism is destruction of theparathyroid glands during neck surgery.The parathyroids are (usually) four smallglands which lie behind the butterfly-shaped thyroid gland in the neck. Theyproduce parathyroid hormone whichclosely regulates calcium levels. Calciumis important for functioning of nerve,muscle, bone and other cell functions.

The HPTH UK Clinical Advisory Team is agroup of endocrinologists with an interestin the parathyroid glands and calciummetabolism who advise HPTH UK onmedical matters.

The leaflet can be downloaded from theHPTH website http://www.hpth.org.uk.Copies of the printed leaflet for distributionin clinics can be obtained by contactingthe Director, Liz Glenister, telephone01342 316315, email [email protected].

DONATIONSMany thanks for all your generousdonations. We are grateful for them all,including those donated by members atthe time of joining BTF or at renewal time,which are too many to list here.Remember to get in touch with us if youare involved in a fundraising event in aidof BTF. We can send you sponsorshipforms as well as posters and otherpublicity materials. We can also supplyBTF T-shirts or running vests, but pleaseleave sufficient time for us to get thecorrect size for you. Please send us someinformation about your fundraising eventand include photograph(s) along with yourpermission to publish it in BTF News.If you are employed, please check withyour employer to find out whether theyoperate a match-funding scheme(matching all or part of what you raise).Here is an update on fundraising activities:

Dave Worrall, captain of the Poulton-le-Fylde Golf Club started a one-year projectin Spring 2009 to raise funds for BTF. Hisinitial target was £1,000. Thanks to someamazingly innovative means, a lot ofenergy and drive and perhaps a littlecoercion he has raised more than fourtimes that amount – over £4,400! We arevery grateful to Dave and his wife, Nicola,for all their hard work. There will be a fullreport in the next newsletter.

Val Ellison, former BTF trustee and localcoordinator, has nominated BTF as herchosen charity during her year as LadyCaptain of the Abergele Golf Club. Valreports: ʻJust to let you know myfundraising is going well. I now have aweight watchers event every Tuesday witha weigh-in and people paying £1 a week -weʼve already raised over £70. We arerunning that till the end of March.

ʻAnother lady member has offered to hosta pre-theatre dinner before we go to seeCalendar Girls. That is for 20 people at £7each, so that should be another £140. Iam having a stall at the coffee morning atthe golf club with a raffle, so fingerscrossed that will bring some money in. Iwill be having raffles at the open eventsduring the year, and hopefully having aquiz night.ʼ

Mailynne Woolley writes: ʻThis April I amrunning both the Paris and Londonmarathons. I have a one-year-oldgrandson who was born without a properlydeveloped thyroid so is dependent ondaily medicine. My mother and sister-in-law also have problems with their thyroidsso I realise how essential your work is.ʼTo support Mailynne, visitwww.justgiving.com/MailynneWoolley.We wish her every success.

We would also like to express ourgratitude to the following:

Dr Michael Tunbridge and Dr MarkVanderpump for once again donatingroyalties from Thyroid Disease: The Facts4th Edition: £165.24.

The mother of Mrs P Doolan who kindlydonated £40.

Val Ellison (see above) for the proceedsof a Childrenʼs Christmas Party (£96) andLadiesʼ Dinner (£149).

Mrs E Grove, former BTF trustee for herdonation of £50, which she kindly donatesevery year.

Mrs T Cairns for the kind donation of £10.

Miss R Lipson for her kind donation of£10.

Mr Robert Muir and Mr AB Legge of Fifefor the proceeds of a coffee morning atUnion Hall, Cowdenbeath: £277.70.

Mrs A Hardy who kindly sent a £40donation with her subscription.

Mrs Monica McGrafth, Essex, forsending £52 from the sale of daughterAlisonʼs handmade cards and some WebbIvory items.

Mrs A Cowan for organising a BurnsCeilidh at Dunnikeir Park Homes estatewhich raised £562.

Jill Sprange (BTF member) who selectedBTF as ʼCharity of the Monthʼ to receivedonations from the ʻBook Swapʼ held atthe Leaf Hospital, Eastbourne: £53.

The Stephens family who gave adonation of £5.

Mrs RA Picking who donated £40donation with her subscription

Mrs G Brewis who kindly made a £50donation with her annual subscription.

Mrs F Riley for raising £150 for BTFwhich was matched by her employer,HSBC.

Young piper at the Burns ceilidh organised byMrs Cowan

Continued from page 5


ResearchNews

Geoff and Anne Yates for their donationof £64 in lieu of golden wedding presents.

Elaine Viles, who swam 22 miles in 28days and raised in excess of £700. (Wehope to publish a more detailed reportwith pictures in the next BTF News.)

Mrs Bridget OʼConnor (TC) who hasdonated £100 from the sale of her bookand a raffle.

How does it work? If a higher rate tax-payer donates £100 to the BTF, £25can be added to the value of this gift inGift Aid. With Transitional Relief, this isincreased by a further £3.20 to a grandtotal of £128.20.

The donor can also receive a £25rebate on this donation, which can alsobe given directly to our cause. HMRCwill further Gift Aid this, increasing therebate to £31.25. Therefore the original£100 donation will be increased to£159.45 (Including the Gift Aid andTransitional Relief).

In order to donate your reclaim to us, allyou need to do is fill in the relevant partof the Self Assessment form with ourunique Her Majestyʼs Revenue andCustoms reference number DAE20SG.

For further information please see:www.hmrc.gov.uk/individuals/giving/tax-return.htm

Payroll Giving is a scheme that letsyou make donations straight from yourgross salary (before tax has beendeducted).

This means you get immediate taxrelief on the value of your donation. So,for a basic rate taxpayer wanting togive a £10 donation, it will only cost £8,or £6 for higher rate taxpayers. Manyemployers also encourage the schemeby matching their employeesʻdonations.

Payments are taken straight from yoursalary either as a regular monthlypayment or as a one off gift. A smallcharge for administration is taken bythe intermediary agencies that processpayroll gifts, although some companiescover this fee as a donation.

How does it work? All you need to dois choose how much you want to giveand to which charity or charities, tellyour payroll department and they willdo the rest.

If you are a UK taxpayer, paid throughPAYE, your company is almost certainlyeligible to offer Payroll Giving (they mayrefer to the scheme using a specificbrand name, such as Give As YouEarn).

Speak to your employer to see whetherthey offer a scheme, and if they donʼt,ask them to consider setting one up.

For further information, please see:www.tax-effective-giving.org.uk

We are grateful for every penny raised.

Membership feesPlease contact us if you need to updateyour standing order. Current rates forUK members who pay by standingorder are £17 (full rate) and £8.50(concessionary rate). Different ratesapply for members who live overseas.

Tax-effective donationsIf you are a higher rate tax-payer, youcan make a donation to our workthrough your Self Assessment taxreturn, ensuring that any part of a taxrepayment can go to the British ThyroidFoundation.

The ASICS British 10KLondon Run - Sunday,11 July 2010Final call! If you would like to takepart in this race and help raise fundsand awareness please contact BTFHQ or [email protected] information.

For further details on the run itself,see the website:www.thebritish10klondon.co.uk.

Pilot follow-up study of theWhickham cohortDr Salman Razvi, holder of the 2006 BTFResearch Award, has sent in the followingfinal report about his study:

Background: The original WhickhamSurvey and its 20-year follow-up studywere pivotal in charting the natural historyof thyroid function and disorders over aprolonged period of time in community-dwelling adults. The aim of this Whickham30+ year pilot study is to assess thefeasibility of conducting a follow-up studyof the full cohort assessing thyroidfunction as well as associations of thyroidfunction with morbidity and mortality.

Methods: A random selection of survivors(n=200) from the 1992-93 survey wasidentified and their current status (alive ordeceased) obtained from local GeneralPractitioners, Primary Care Trusts or NHSSummary Care Records. In addition,current or last known thyroid status,vascular disease (ischemic heart diseaseor cerebrovascular disease), history ofdiabetes mellitus, and list of medicationswere obtained. Furthermore, current orlast documented blood pressure levels,weight and height, electrocardiogram, anda fasting blood sample for thyroid function(TSH and fT4), glucose, lipids and TPOantibody levels were obtained, either fromparticipant visits or from GeneralPractitioner records.

Results: Details of 193 (96.5%)individuals have been obtained, of whom65 (33.6%) are deceased. Of theremaining individuals that are alive(n=128; 66.4%), 119 attended for studyvisits and/or consented to have theirmedical records examined. Nineindividuals declined to take part, and wewere unable to trace seven individuals.Cause of death was obtained for alldeceased individuals from deathcertificates or post-mortem reports.

Continued on page 8



The median duration of follow-up of thepilot cohort is 34 years; mean age ofsurvivors being 68 years and deceasedindividuals being 78 years. Twenty-eightparticipants (12.4%) of the total cohortidentified (alive and deceased) have beentreated with levothyroxine, and 21 (10.8%)have confirmed ischemic heart disease.

Future plans: We plan to submit afunding application to national statutory or

£500 Award for NursesThe British Thyroid Foundation (BTF) is offering an award of £500 to help a nurse,endocrine nurse or midwife improve care for patients with thyroid disorders.The Evelyn Ashley Smith award 2010 can be used to:

l support training needs including conference attendance;l support a specific project lasting one year; orl reward a piece of work that has already been completed, but not yet published.

The award is available to nurses, endocrine nurses and midwives in the UK. Foran application form, go to: www.btf-thyroid.org, email [email protected] or phone: 01423 709707. The closing date for receipt of applications is1 July 2010.

charitable bodies to perform the full studyin the next two to three months. The pilotstudy has provided us with enough dataand experience to be able to plan this inan efficient manner.

I would like to take the opportunity tothank the BTF for the support provided forthis important study which has beensuccessful in demonstrating that a fullWhickham study is feasible.

£10,000 Research AwardThe British Thyroid Foundation (BTF) offers an annual award of up to £10,000 tosupport one-year research projects into thyroid function or thyroid disorders. Theaward can be used to supplement existing projects or to help get research ideasstarted. Funds will be awarded for consumables, running costs and equipment.

The British Thyroid Foundation is an NIHR partner organisation in respect of itsresearch awards funding stream. Studies funded through this funding stream areeligible for inclusion in the NIHR Clinical Research Network Portfolio andtherefore able to access NHS support via the NIHR Clinical Research Networkinfrastructure.

For further information and an application form, go to: www.btf-thyroid.org, [email protected] or phone: 01423 709707. The closing date forreceipt of applications is 31 August 2010.

MEET THE ...New Childrenʼs Coordinator -Debby BenjaminLastSeptemberDebbyBenjaminwent to theMedikidzlaunch withher sonDaniel andboth of themspoke at thelaunch onbehalf ofBTF. Danielhas sincejoined theMedikidzchildrenʼspanel andDebby has become an active member ofBTFʼs childrenʼs project group and is alsotraining to be a BTF ChildrenʼsCoordinator working alongside PennyRoot. Here she shares what has been attimes a very emotional journey.

Six years ago my son was diagnosed withhypothyroidism. He was so ill heʼd becomesuicidal, and we realised finally heʼd beenill for years. It was a very raw time for mywhole family and one week when mysonʼs headmaster had called me anʼoverprotective motherʼ, and thepaediatrician accused me of ʼmedicalisingʼmy child, it nearly became too much.Maybe ʼIʼ was the problem! That week Ispoke to The Samaritans twice in the nightand Penny Root (the BTF ChildrenʼsCoordinator) a few times during the day.My husband was so tender to me eventhough I probably didnʼt say howdesperate I felt. Without ALL that support,Iʼm not sure I would have coped. Pennywas a lifeline. She completely understoodhow upset I was and how the paediatricianhad made me feel. She said it was acommon problem. Hearing that helpedrelieve some of the shame and confusionI felt.

Penny has continued to support meoccasionally over the years, and I will beeternally grateful to her and all those othermums she put me in touch with who gaveme the benefit of their experience.

Last year Dan wrote an article for the newʻChildrenʼs Cornerʼ of BTF News (seenumber 69, page 12) about his experienceof being a child with an under-activethyroid. Dan wrote his article to honourhimself, and thank others who helped himto acknowledge how far he had come.With his tenacity and courage and the


For people with medical conditions, it canbe tempting to search for cures andadvice on the web in the hope of findingsomething that will do more than theirmedications can. The internet is full ofwebsites recommending special diets andpromising ʻmiracle curesʼ. People dressedin lab coats talking about complexbiological molecules and using scientificterminology create a façade of authority;and chat rooms and forums with personaltestimonies can provide hope. But theycan also make people feel pressured to tryʻmiracle curesʼ for themselves.

It can be difficult to know what to believe.How can we tell which claims are backedby scientific evidence? Evidence for someclaims may be unreliable, flawed orincomplete. Adverts for therapies could becommercially motivated and as far as weknow the research could have beencarried out in someoneʼs garden shed!

A useful tool to help make sense ofscience stories is to know whethersomething has been peer-reviewed. Peerreview (also known as refereeing) tells youthat research has passed the scrutiny ofother scientists and is considered valid,significant and original.

When researchers finish a particular stageof research, they usually write up theirresults and conclusions in a paper, whichthey then send to a scientific journal to beconsidered for publication. The journaleditor will receive far more papers thanthe journal has space to publish and sothe papers undergo a selection process.The editor first considers if the paper isrelevant for the journal, before sending itoff to experts in that particular field forreview. The reviewers then return thepaper to the editor and give their opinionas to the quality of the work and whetherthey think it should be published. Thisprocess is called peer review.

Publication in a reputable scientific journaltherefore tells us that a paper has beenpeer-reviewed and acts as a benchmarkfor the quality of the research. It is a firststep to differentiate between scientificresearch and mere opinion andspeculation. When reading about scientificclaims look out for a full reference to ajournal [1]. Youʼre unlikely to come acrossfull references in a newspaper but mostgood reporters will mention the journalthat the research has been published in.You can then go and find out more, forexample using online services such asEurekAlert! [2] which have lists of selectedpeer-reviewed journals.

Dr Irene Hames [3], Managing Editor ofThe Plant Journal, says to check a journalis reliable and peer-reviewed:

ʼLook for details on the journalʼs websiteabout how the published articles havebeen selected. If they say they have beenpeer-reviewed, make sure that it says byexternal experts/reviewers, and not just bythe editor.

ʻIf the journalʼs information is not on line oryou canʼt find what you want, contact thejournalʼs editor or editorial office and askfor this information. Donʼt be afraid to dothis - any reputable journal will be happyto answer questions on this. Bear in mindthat quality of peer review isnʼt related tosize of journal - this is a popularmisconception. The large general,science, and medical journals do havegood peer review systems and a lot ofexpertise built up over many years, butmany small specialist journals also haveexcellent peer review processes.ʼ

Even if medical research is published in apeer-reviewed journal, however, this does

Continued on page 10

wonderful support he had received from apsychologist who has helped himovercome his needle phobia to amanageable level (they still work togetherfor his tests) he is almost ready to ʼgo italoneʼ. It was tough for him to put pen topaper. He used not to talk about hismedical condition at all. She has helpedhim talk about his fears and even tell hisbest friends about it. Heʼs grown throughthe experience and matured and realisedno one laughed at him and that they hadtheir own issues too. It deepened theirrelationships.

Anyway! This article was about Dan reallyowning and accepting his medicalcondition as a part of him and workingtowards putting it in its place, where itwasnʼt too big a part but to have lessanxiety around it. He struggled both todecide to write the article and go to thelaunch because of his search for this. Butboth helped to shape the wonderfulthoughtful young man that he is today.

Janis and Cheryl really supported usbefore the Medikidz launch, and at thereception we met both Penny (which gaveme my chance to say ʻthank youʼ inperson) and Judith the BTFʻs Editor. Boththese women really connected with myson and asked him about his thyroidcondition. Judithʼs thyroid condition wasdiagnosed at Danʼs age and I felt theyboth really understood him. He seemed tosense they were on ʼhis sideʼ and I reallyfelt he was in safe hands. It was a greatstart to the launch to be with them andPennyʼs charming daughter. It was anemotional evening.

I was introduced to speak first. I prayed,looked at my wonderful son and at theBTF team I had the privilege ofrepresenting, and the words just came.The best bit was saying: ʻIt gives me greatpleasure to introduce my son ...ʼ

Daniel and I were so lucky to representthe BTF at the reception. We did our bestto speak for all those people who werenʼtable to be there.

I have since been invited to be trained upto support Penny talking to people on thephone. I have also joined the BTFchildrenʼs project team and am collectingcase studies for the new booklet forparents and carers. When my son wasdiagnosed I remember lookingeverywhere for information; there was solittle, and it didnʼt cover many of ourquestions. I hope that making thisinformation available will make the journeyfar easier for newly diagnosed childrenand their families and I expect this willspeed up treatment time and make theconsultations more effective.

MAKING SENSE OF SCIENCE CLAIMSHow do we know what to believe? In this article Julia Wilson, Development Officer atSense About Science, describes some tools to help weigh up the evidence and makesense of science stories. Julia joined Sense About Science in 2008 as an intern aftergraduating with a degree in Biology from the University of Manchester. In April 2009 shebecame Development Officer at Sense About Science and also coordinates the Voice ofYoung Science (VoYS) network.


CASE STUDYʻMy life is a nightmareʼCR put her faith in a non-NHS ʻalternativeʼthyroid expert to treat her symptoms. Shehas decided to share her story to helpother patients not to make the samemistake. She writes:

I have an under-active thyroid, diagnosed12 years ago, and my main symptom hasalways been thigh and arm muscle painand weakness, i.e. proximal myopathy.Despite adequate treatment withlevothyroxine, I never fully recovered mymobility, and was restricted in how far Icould walk and what I could do.

I saw a consultant neurologist for anumber of years, who was sympathetic,but he explained that there was no furthertreatment available, as no research hasbeen done into continuing musclesymptoms in hypothyroidism, as it is aʻrareʼ symptom.

Last year I consulted a self-styled ʻthyroidexpertʼ who had been recommended tome. He told me that I had clear signs of anadrenal problem, and that this was addingto my hypothyroidism symptoms.

The saliva tests he recommendedapparently confirmed this diagnosis. Hetold me to take ʻadrenal glandularʼ tablets,but I was to stop my levothyroxine for sixdays to ʻavoid an overdoseʼ situation, andthen to take half my normal dose oflevothyroxine with the adrenal tablets. Imentioned my worries about stoppinglevothyroxine, but he brushed aside myconcerns, saying ʻyouʼll just get better andbetter!ʼ I was assured that he wouldalways be available to advise me bytelephone.

As soon as I took the adrenal tablets, mymuscles went very painful and weak. Itried to phone him for advice but he wasunavailable for days. His secretary urgedme to continue as he had advised, sayingʼBe Brave!ʼ but my muscles got worse andworse. After five days I resumed mynormal dose of levothyroxine and stoppedthe adrenal tablets, but I was missing sixdaysʼ dosage of levothyroxine. In amisguided attempt to make up the missinglevothyroxine, I took extra for a few days. Iseemed to be recovering, but then aftertwo weeks I suddenly got severe musclepain and weakness again, plus terriblepainful cramps in my calf muscles. I wasunable to contact the ʻthyroid expertʼ for aweek, and when I reached him, hebecame aggressive, saying that I wasʻbeyond his experienceʼ. He offered me arefund of his fee, and then abandoned me.He has since consistently refused tohelp me.

My GP was unable to help me either, so Iasked to be referred to a thyroidconsultant. This however took six weeks,during which time my muscle symptomsbecame even more severe. I was bed-bound for weeks, with extreme pain andweakness in my thigh muscles, andconstant painful cramps in my calfmuscles. I was left to cope with all this onmy own. It was a terrible stressful ordeal. Ialso had no choice but to rely on paidcarers and kind friends to look after me,as I live alone.

My life has been a nightmare for the lastyear. Since April 2009 I have been virtuallyunable to walk. Although no longer bed-ridden, I still have severe muscleproblems, with pain and weakness, anddreadful stiffness, aches and inflammationin my thigh and arm muscles. I am stillhousebound, still struggling to get aroundthe house and cannot do housework orcook meals for myself. I rely on friends totake me out at all, pushing me around inmy wheelchair.

So far, this has cost me a whole year ofmy life, not to mention the huge financialcost of paying for carers for months, plusthe cost of useless and misleading salivatests.

To my bitter regret, I trusted an over-confident, self-styled ʻthyroid expertʼ, whoonly knew enough to wreck my health andlife, and then left me to my ghastly fate,admitting (too late) that he really knew andunderstood nothing about my case. Itʼs apity for me that he hadnʼt told me thatearlier, before I trusted him. He was un-contactable when things went wrong and Idesperately needed proper advice, eventhough Iʼd been assured that he would beavailable for advice by phone.

I consulted this man to try and improve mymuscle problems. He assured me that hewould improve my life, but he has had theopposite effect of destroying it instead! Mymuscle symptoms are now many timesworse than they were before. This hasalso had an adverse effect on myosteoporosis condition, as I have beenunable to exercise for the last year.

My advice is NOT to trust anyone outsideof the properly accredited medicalprofession. Donʼt make my terrible mistakeand trust other peopleʼs recommendationsof ʻalternativeʼ doctors and nutritionists.

Our medical advisor writes: This ladyhad been taking levothyroxine for 12 yearsfor hypothyroidism but still had muscleproblems which a consultant neurologistcould offer no help with.

She was then told by the self-styledʻthyroid expertʼ that she required adrenal


not mean it is ready for clinical use.Breakthroughs in the lab take many yearsto be translated into therapies we can use.Research can look promising and thencome to a dead end. Some experimentsmay have shown an effect in mice but stillrequire testing on humans; or tests carriedout in human cells in the lab couldpotentially react completely differently incells within the body. Clinical trials are avery important stage for drugs to passbefore being available to the public.Sometimes a really promising drug in thelab may show adverse side effects inclinical trials. Drugs must be tested torigorous standards and pass through anumber of phases: this can take years.This is vital in order for doctors andpatients to be aware of all the benefits andharms [4].

There is no simple way to weigh upscientific claims but it is possible to makea more informed judgement by asking theright questions, such as: is the researchpeer-reviewed, or has there been a clinicaltrial. By understanding how science workswe can better differentiate betweenscience and opinion.

Notes and references[1] An example of a full reference:Hedenfalk I, Duggan D, Chen Y, et al.(2001) Gene expression in hereditarybreast cancer. N Engl J Med, 344: 539-48(or similar format).[2] EurekAlert!www.eurekalert.org/links.php?jrnl=A[3] Irene Hames is also the author of PeerReview and Manuscript Management inScientific Journals: guidelines for goodpractice, Blackwell Publishing, 2007.[4] The UK Clinical ResearchCollaboration publication Clinical Trials:what they are and what theyʼre not hasfurther information about the stages andprocess of clinical trials and can be foundat: http://www.ukcrc.org/publications/informationbooklets/. The Sense AboutScience publication Iʼve Got Nothing toLose by Trying it (2008) has a section onunderstanding clinical trials(http://www.senseaboutscience.org.uk/pdf/Iʼve%20got%20nothing%20to%20lose%20by%20trying%20it%20FINAL.pdf).

Sense About Science is a charitable trustset up to equip people to make sense ofscience and evidence. Sense About Sciencestaff work with scientists, medics andengineers to stand up for science andevidence and to share their insights, workand language with the public. They putpatient groups, local government, journalistsand others with an audience or constituencyin touch with scientists through their ʻcontacta scientistʼ facility.


Letters andComments

replacement therapy on the basis of asaliva test. While a saliva test may haveindicated the possibility of adrenal failure(which can indeed occur in the context ofautoimmune hypothyroidism) furtherspecial testing should have beenperformed to confirm the diagnosis. After12 years of levothyroxine therapy I do notthink there was any indication to stop itwhile adrenal therapy was started.

The cause of her current symptoms is notclear although they do seem to be relatedto stopping her levothyroxine. Currentlyshe still has symptoms even while takingan appropriate dose of levothyroxine and Iwould have expected these to haveimproved over time.

Unfortunately, recent consultant referralsat this stage do not seem to have helpedher. Meanwhile, the lesson from this veryunfortunate experience is to consultdoctors who are accredited appropriatelyin endocrinology.

We welcome letters from our members butplease note that letters may be edited atthe Editorʼs discretion owing to restrictedspace. Please address your letters to TheEditor, BTF News, The British ThyroidFoundation, 2nd floor, 3 DevonshirePlace, Harrogate, North Yorkshire HG14AA or to [email protected], andinclude your membership number. Unlessyou state otherwise, we will assume thatyou consent to having your letter and replypublished in the newsletter. Your letter willbe anonymised. Medical questions,whether or not intended for publication,will normally be referred to one of ourmedical advisors, and you will receive apersonal reply. Please note that theiradvice is provided for information only.You should not alter the recommendedtreatment issued by your personalphysician without their knowledge andagreement. We advise you to consult yourGP or specialist with regard to furthertreatment choices or advice.

28-day prescribingWe continue to receive letters aboutdifferent practices around the UK. Hereare two recent letters.

JO writes: Last year my GP said hewouldnʼt prescribe for longer periods [than28 days - Ed] because the PCT penalised

his practice for doing so. Following this,my PCT offered to contact my GP bytelephone. I have now heard that in thosetelephone discussions with the PCT, herefused point blank to deviate from the 28-day rule on the basis that I am mobile! Here-stated all the ways that I can getmedication - all of which are even moreinconvenient. I have explained to the PCTin what way it is inconvenient, but they stillachieved nothing. The PCT says theultimate decision is his. I am so very, veryangry. I have been on this sinceSeptember 09. I want to complain aboutthe GP and the PCT, but to whom?

I now have a different GP. After my bloodtests in March (following a small increasein dose trial), I will be asking him to makean exception to the 28-day prescribingpolicy, and taking it to the PCT if herefuses. The PCTʼs concluding advice tome was to ask my new GP to prescribe forlonger periods, and the person I wasdealing with said that she would bring upmy issues at a PCT meeting. She also feltit was an unsatisfactory situation.

Normally, if you wish to make a complaintabout a GP, you would first make contactwith the GP or the practice manager toexplain the nature of your complaint. If youneed help or advice or have concernsabout NHS services, contact your localPatient Advisory Liaison Service (PALS)team. If you would like help making yourcomplaint, you can contact the localIndependent Complaints and AdvocacyService (ICAS), see:http://www.pohwer.net/how_we_can_help/independent.html. Ifyou are still unhappy once you havereceived the final response about yourcomplaint or would like an independentreview, then you can contact theParliamentary and Health ServiceOmbudsman (P&HSO), see:www.ombudsman.org.uk. - Ed

RKA, a pharmacist in Wales,comments: The NHS contract forPharmacy currently applies to bothEngland and Wales. With repeatdispensing, six-month prescriptions areissued to the nominated pharmacy andthis saves the patient a lot of hassle.Repeat dispensing is part of the pharmacyessential services but the take-upcurrently is small. The Ministerial Task andFinish group is looking at ways ofimproving the uptake of this service for theconvenience of the patient and NHS. Thiswould also stop any wastage if the dosewas changed.

Glucosamine andCarbimazoleSH asks: I have been able to come offCarbimazole for an over-active thyroid. I

am checked about twice a year until theyare happy it is settled. Due toosteoarthritis I am going to takeglucosamine, which I believe is derivedfrom shellfish. I know with an over-activethyroid anything that has iodine in it is notgood to have. A friend of mine thought shehad read that anyone who has an over-active thyroid should not takeglucosamine. Is this true?

Our medical advisor replies: it is fine totake glucosamine when takingCarbimazole.

Levothyroxine and additivesJH asks: I have been taking levothyroxinefor about ten years. I am having problemsobtaining the tablets without the ingredientacacia powder or the ingredientpregelatinised maize starch which is insome. They both cause side effects. Ihave been on the Teva brand since lastyear which was fine. Now I find they areunobtainable - the same old story. I wouldbe pleased if you could help with someadvice.

Our medical advisor replies: I am sorryto hear you are having difficulties inobtaining your medication. There is amanufacturer that will make thyroxineaccording to the specific needs of thepatient. Their contact details are:

Cardinal Health, Hubert Road,Brentwood, Essex CM14 4LZ

Tel: 01277 266600 or 0800 1376272

I believe you just need a letter from thedoctor to for this to be arranged, but I amsure if you telephone them they will let youknow the procedure.

TSH levels after RAIHE asks: I have had hypothyroidism sinceJune 2002 following radioactive iodinetreatment in 2000. My TSH levels havefluctuated and my levothyroxine hasgradually been increased from 50mcglevothyroxine to 150mcg levothyroxine.Can you tell me why the TSH levelsfluctuate, whether they will eventuallystabilise, and why my TSH level recentlywent up from 1.2 to 2.5 despite theincreased levothyroxine?

We showed HEʼs blood test results(2002-2009) to our medical advisor, whoreplied: The TSH progressively rises afterradioiodine because the thyroid failure isprogressive, so the increasing dose overtime reflects the worsening thyroid failure.The fluctuation between 1.2 and 2.5between September and December 2009



Children’sCorner

If you are a child or a young person with athyroid disorder I would like to invite you towrite about yourself and your thyroiddisorder and about the problems youmight have had and how you have coped.You can also write in for information andadvice and have your letters published.BTF has arranged for a special doctorwho helps children with thyroid disordersto answer your letters in our page. Youcan write to me at:

Childrenʼs Editor, BTF News, TheBritish Thyroid Foundation, 2nd Floor, 3Devonshire Place, Harrogate HG1 4AA,or email me, [email protected] remember to have one of yourparents sign the letter too if you are under18. - Shannon

Thyrotoxicosis - Gravesʼdisease explainedDr Tim Cheetham continues his series ofarticles to help children and young people- and their parents and carers - tounderstand thyroid disease. In this issuehe writes about thyrotoxicosis - an over-active thyroid gland.

People with thyrotoxicosis have a thyroidgland that is ʻover-activeʼ and so makestoo much thyroid hormone.

Thyrotoxicosis affects people of all agesincluding children. Most people have itbecause they have developed antibodiesto the thyroid gland. Usually theseantibodies include some that directlyswitch the thyroid gland ʻonʼ (a bit likeflicking on the light switch at home). Theantibodies that switch the gland on are a

OveractivityUnderactivity

Thyroid hormone

might simply be the daily fluctuation inTSH, as it is a little higher in the morningand evening and reaches a trough everyday about 2pm. So to get comparablereadings, it is best to omit yourlevothyroxine dose on the morning youare tested and have the TSH checked at(for instance) 9am. Levothyroxine is alsoslightly variable in absorption and TSH willfluctuate depending on whether you haveit on an empty stomach or with yourbreakfast (or with calcium or iron tablets,particularly).

CT scan with contrast iodineand hypothyroidismIB asks: Currently I take 75mcglevothyroxine and in November I had a CTscan when contrast iodine was injectedinto my blood stream.

I have been feeling unwell since andwould like to know whether iodine used inthis way can affect a hypothyroidcondition. My GPs are not interested orperhaps do not have the requiredknowledge in respect of thyroid problems.I am 67. Thank you for your time.

Our medical advisor replies: The iodinewill not have had an effect on thehypothyroid condition. Iodine given in thisway for a CT scan can have side effects insome people, but they usually resolve.

Diet and hypothyroidismFB asks: I have recently joined BTF as sixmonths ago I was told I have an under-active thyroid. For the last few years Ihave been under a lot of stress and havenot been eating sensibly. Iʼm wondering ifthat had anything to do with me getting anunder-active thyroid. My mother had anunder-active thyroid in her 60s.

Our medical advisor replies: There is noobvious connection between poor diet anddevelopment of hypothyroidism. Iodinedeficiency can make thyroid problemsmore common (and is a major publichealth problem in developing countries),but this is not a factor in the UK providedthat a reasonable diet is followed, and onethat includes some dairy products.

Natural eye dropsPeter Foley, a BTF Trustee, hadthyroid eye disease in 2001 to 2003,and as a result he now constantlyneeds lubrication of the orbits as hedoes not produce enough naturaltears of his own. Here he writesabout his experience with eye drops.

I developed sensitivities and allergicreactions to most of the eye dropsprescribed during active thyroid eyedisease. My prescription was forMinims Artificial Tears which arebased on 0.44% w/whydroxyethylcellulose and 0.35% w/wsodium chloride. These weresatisfactory for a number of yearsuntil I started to get an almostconstant itching irritation in both eyesand needed to bathe them moreoften with cooled boiled water andinsert more Minims drops.

In May 2008, I attended theInternational Congress of the RoyalCollege of Ophthalmologists with myconsultant surgeon. While there, Itook the opportunity to see whatother eye drops were on offer. I triedsamples of Alcon Tears Naturalewhich contain dextran 70 andhypromellose but found that thesestill caused me irritation.

The eye drops that have improvedthe situation for me personally -especially as I spend much of myworking time out of doors where thecornea can became quite dry inwindy or sunny weather - are Oxyal.These contain 0.15% hyaluronic acidtogether with a protector thatincreases the viscosity of thehyaluronic acid, thus improving thelubrication and lessening the numberof applications necessary to the eyein any one day. On contact with theproteins and enzymes naturallypresent in the lachrymal fluid of theeye, the solution is converted tophysiological salt and oxygen, so thatusers donʼt experience toxicity,allergy or corneal irritation problems.The Oxyal drops contain a rapidlybiodegradable preservative whichcan be used by all contact lenswearers.

I know that these drops may not begenerally available, but my GPʼspractice dispensary soon obtainedthem for me. I have been taking themnow for nearly two years without anyill effects.



feature of Gravesʼ disease which is themost common cause of thyrotoxicosis inyoung people. Not everyone withthyrotoxicosis has Gravesʼ diseasethough. Sometimes the antibodies causethe release of too much thyroid hormonein the absence of the ʻswitching onʼantibodies that are characteristic ofGravesʼ disease.

Girls develop thyrotoxicosis more oftenthan boys. Less than one in 100,000people per year under 15 years old getthyrotoxicosis so it is not common!

Thyrotoxicosis can affect most parts of thebody. The symptoms can include weightloss (even when youʼre eating a lot!),growth spurts so you grow faster than youshould, feeling too hot even in coldweather, loose bowels, mood swings andfeeling irritable, having difficultyconcentrating and sitting still in school soyour teachers start to get cross.

Thyrotoxicosis can also be associatedwith heart problems such as an abnormalheart beat, leaking heart valves, and thedevelopment of weak bones. Youngpeople may be affected for months, oreven years, before a diagnosis is made.The good news however is that themajority of people with thyrotoxicosis soonget back to normal on treatment.

Young people are usually treated withanti-thyroid drugs (ATD). The ATD(usually a drug called Carbimazole) canbe used in one of two ways. The first wayis as part of a block and replace (BR)regime: the anti-thyroid drugs block thethyroid gland from producing anythyroxine. Then levothyroxine is added toreplace the bodyʼs natural thyroxine. Thislets the doctors control how muchthyroxine you have in your body so yourthyroid canʼt give you too much anymore.

The second way is to use a dose titration(DT) regimen, where the dose of the anti-thyroid drug is adjusted so that theamount of hormone made is just right.

Unfortunately, about 70% of the time thethyrotoxicosis returns when the ATDs arestopped. We are doing research now tofind out the advantages anddisadvantages of the BR and DTapproaches. We want to find the best way

of keeping thyroid hormone levels normalduring treatment (not moving up and downso much) and the treatment that is mostlikely to stop the over-activity coming backwhen the medicines are stopped.

If the thyrotoxicosis returns some peopledecide to start anti-thyroid drugs again. Ifthey donʼt want to the choice is eithersurgery to remove the thyroid gland orradioactive iodine (RAI).

Thyroid surgery is safe when conductedby skilled and experienced surgeons.There is a scar but it usually fades quitedramatically with time.

RAI involves taking a pill or drink ofradioactive iodine that goes straight to theover-active thyroid gland where it isconcentrated and destroys the thyroidgland. The RAI doesnʼt go anywhere elsein the body but the thyroid. In NorthAmerica doctors are big fans of RAI but inEurope there are still many people whothink that surgery is best. That says it all -both have advantages and disadvantagesand it is important to speak to experts whocan talk it all through in detail with you. Itwill still be a matter of personal choicethough! Recent work has suggested thattreating young people with RAI isvery safe.

Letters

Word search: hypothyroidismWe would like to thank Alex Grodner for compiling this word search. Alexʼs brotherhas hypothyroidism.Can you find the hidden words in this word search puzzle? Many of the words havesomething to do with having an under-active thyroid. If you like this puzzle please writeand let us know!


J wrote: I am ten years old. My parentswere told when I was eleven days old thatI had no thyroid gland and that I was goingto be disabled. So ever since then I havebeen on thyroxine and right now I am on

Both of these treatments usually involvetaking thyroxine replacement in the longterm, perhaps for life, because theabnormal gland has gone away.

Thanks for the article. I and my mumfound this very interesting as I am the onein 100,000 who had Gravesʼ diseasediagnosed from the age of four. As it isvery uncommon my mum had a job to findout about it and the doctors were not surehow to treat it either. l am still on the drugsat the moment but have been given thechoice of the operation or the radioactiveiodine. So l would like to thank Dr Tim forwriting this article though I would like tosay another symptom for Gravesʼ diseaseis the eyes (bulging and big) as this iswhat somebody spotted to make me goand get my thyroid checked. The picturesare great - Shannon

T M L T F E S U B T V T D I HA H G T A R L K S H P N G R BE G Y T I R E D O Y J E W H LN O A R D B E V D R C M D Q OI F F U O U P C Q O A T L X OK N A S C X Y O P I U A O P DS I M T T S I N C D K E C X TY A I K O C D N B Y Z R L E ER R L N R I R N E A O T F N SD B Y V D Z J B E T T E R I TH Y P O T H Y R O I D Y H C HL G S M I P C Y T W Q N U I YF J D W P H X S L O W F G D MB A E A N T I B O D I E S E IS G H B U T T E R F L Y Q M O

TIREDSLEEPYSLOWCOLDDRY SKINBRAIN FOGFRIENDSFAMILYDOCTOR HUGHAPPYBLOOD TESTTHYROIDTREATMENTANTIBODIESHYPOTHYROIDMEDICINESADBETTERBUTTERFLY


LocalGroups

If any member is interested in becoming aBTF local support group coordinator ortelephone contact please contact BTFHead Office on 01423 709707 / 709448.

BirminghamThe next meeting will take place onSaturday 12 June 2010, from 2-4pm at theYardley Baptist Church, Rowlands Road,Birmingham, B26 1AT (off the A45Coventry Road). Free parking is available.The guest medical speaker is Dr Mark SCooper on the topic ʻThe links betweenblood results and symptomsʼ. A smallvoluntary donation on the day isappreciated to help cover the costs ofhiring the church and providingrefreshments. If you have any queries,please contact me on 0121 6287435or [email protected] - Janet

BoltonWe were pleased to welcome Dr GraceGibson again as our guest speaker on 13March.

Grace gave us all an excellent insight intohow we can gain the best form oftreatment from our GPs. Having a thyroiddisorder may affect every part of you, yourmind, body and spirit. If you are still notfeeling well after being treated withlevothyroxine and you are on the correctdose then you need to be aware of othermedical conditions which may be linked tohaving a thyroid disorder. Do not be afraidto go back to your GP and ask for furtherblood tests.

She also explained about the changingroles of GPs and the large health centresthat are now being established throughoutthe country.

Grace went on to talk about herinvolvement in the BTF thyroid andpregnancy project and how important it isthat thyroid levels are correct before,during and after pregnancy especially ifthere is a history of thyroid disease in thefamily, you have an existing thyroidcondition or had post-partum thyroiditisafter previous pregnancies. She then gaveeveryone one of the new BTF TiP cards(see page 3) and emphasised that it isimportant for us all to pass this messageon to the younger generations.

Our thanks go to Grace for making thelong journey from Hull to be with us.

Please note that there is a change ofdate for the next meeting which will nowbe held on Saturday 19 June 2010 from10am to 12 noon, Barlow Institute, BoltonRoad, Edgworth, Bolton. There will also bea meeting on Saturday 13 November.

Please contact me on 01204 853557 ore-mail [email protected] forinformation or details of meetings - Carole

DurhamThe first meeting of the Durham supportgroup took place on 20 March at DurhamCounty Hall. It was very well attended and received excellent feedback frommembers. A big thank you on behalf of thegroup to Doctor C.S. Arun MD FRCP,consultant in diabetes and endocrinologyfrom Darlington Memorial Hospital, andDonna Reed, BTF volunteer, for theirsuperb and informative presentations; andto Janis Hickey and my mum forsupporting me. I think we were all betterinformed about our conditions after themeeting. Thanks to everyone whoattended, and to those who haveexpressed an interest in helping out in thegroup in the future - I will be in touchshortly! The next meeting will be on 26 June at11am in Committee Room 1B at DurhamCounty Hall. If you would like furtherinformation, please contact me on 0191569 3578 - Jennifer

EdinburghThe Edinburgh Group continues to meeton the last Tuesday of the month (exceptin school holidays or if otherwise stated) inLiberton High School, Gilmerton Road,Edinburgh EH17 7PT at 7.15 pm. The nextmeeting with a speaker will be on Tuesday29 June when Dr Mark Strachan,member of the BTF Board of Trustees andconsultant endocrinologist at the WesternGeneral Hospital in Edinburgh, will speakabout ʻThe Diagnosis and Treatment ofThyroid Disordersʼ. If you would likefurther information or would like to helpwith the group please contact me on 0131664 7223 - Margaret

HerefordWe meet on the third Thursday of everymonth. Unfortunately we had to cancel acouple of meetings due to icy weather.As a new group we are still finding our feetand hope that in the future we can attractmore members. We shall be trying to raisefunds shortly, and are making plans for thesummer.We have members from Essex, Mid Walesand villages around Hereford, and weshall keep in touch with them bynewsletter and phone. If you would likefurther information, please contact me on01432 271561 - Denise


100mcg. Every morning I take either two50mcg tablets or four 25mcg tablets andhave a blood test every six months. I amthe best reader in my class and have thereading age of 17 years. One of the worstthings about having no thyroid gland isthat when I get a cold I can go from a coldstraight to pneumonia but the good thingis that my doctor calls me his little miracle.I do not get teased at school about itbecause some people donʼt know andthose who know understand what it is likefor me. When I donʼt feel well all my bestfriends comfort me - aaawwwwww! Thisdoesnʼt stop me from having fun andgoing on holiday and it certainly doesnʼtstop me from being the best auntie ever tomy nephew!!!!!!

Shannon replied: Hi J, Iʼm 12 years old. Iwas diagnosed with Gravesʼ disease(over-active thyroid) when I was four yearsold. It means I produced too muchhormone and was tall and skinny for myage and l could play in the snow with justa t-shirt and wouldnʼt feel the cold. l usedto drive mum nuts as I was always hyperand up very early. l too am onCarbimazole and levothyroxine. They haveshut my thyroid down and later l will haveto have an op to remove it. My doctor hadnever treated anybody my age with thiskind of disorder so it was a bit miss and goas this is an adult illness. l have thyroideye disease as well and have to takedrops and cream every day. Some peopletake the mickey because my eyes are big,but once l explain they stop. We arefinding more and more children are havingthyroid disorders. That is why I wanted tostart a project for children because it onlymentions adults, so hopefully now itʼsgetting through that children have thesame and itʼs easier to get the informationabout it. l am off to London to do aseminar about my findings. Well have togo for now. Stay in touch. Thanks for yourletter and hope to hear from you soon.

J wrote: You mentioned that people madefun of you. Itʼs really different for me whenI tell people that I have no thyroid gland.They get really really confused so I haveto explain what a thyroid gland is and whyit is very important to your body aboutthree times a day - it gets really annoyingsometimes. I have just had my tabletsincreased which means that one morning Itake 100mcg and the next morning I take125mcg. Because I donʼt have a thyroidgland I can go from a headache to aserious migraine in ten minutes and froma cold to pneumonia. But it doesnʼt affectmy school work. I also go dancing and stillit doesnʼt affect my athletic skills either. Iam in the top class in dancing. Hope tohear from you soon. Keep in touch.


The BTF is very appreciative of ourfantastic team: employees, volunteers,members, professionals, doctors andnurses who help the organisation todevelop, as proved by our successfulactivities over the years.

Patrons:

Maria AitkenJenny Pitman OBEMelissa Porter BA(Hons)Claire Rayner OBEDr W Michael G Tunbridge MA, MD, FRCPGay Search

Trustees:

Mr Scott Brady LLB MBAMr P FoleyDr G Gibson MBChB DRCOG MRCGP DFFPProfessor P Hindmarsh BSc MD FRCP FRCPCHMrs C InghamProfessor JH Lazarus MA MD FRCPDr P Perros FRCPDr M Strachan MD FRCP(Edin)Mrs Judith Taylor BA(Hons)Ms Alison Waghorn MD FRCS FRCS(Ed) MBChBMrs Dianne Wright RGN BSc(Hons)

Ex-Officio Member of the Trustees:

Professor J A Franklyn MD 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 toprovide information to BTF members.Whilst every effort is made to providecorrect information, it is impossible to takeaccount of individual situations. It istherefore recommended that you check witha member of the relevant medical professionbefore embarking on any treatment otherthan that which has been prescribed for youby your doctor. We are happy to forwardcorrespondence between members, but donot necessarily endorse the views expressedin letters forwarded.

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

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

Manchester and SalfordA meeting took place on Tuesday 23March at Sacred Trinity Church, ChapelStreet, Salford, M3 5DW. There will be areport in the next issue.There will be further meetings in June,September and December, from 7- 9pm.Please feel free to contact me on 01942819195 after 6pm orat [email protected] for any information -Nia

Milton KeynesWe had a good meeting in March with ayoung and dynamic GP who conducted aquestion and answer session. The groupappreciated the chance to talk, discussand share information. Plans for future meetings in 2010 are asfollows:Saturday, 5 June: Dr Mark Vanderpump,Consultant Physician and Honorary SeniorLecturer in Diabetes and Endocrinology atthe Royal Free Hampstead NHS Trust inLondon, who will host an open questionand answer session on ʻAll Aspects ofThyroid Diseaseʼ and will also give a briefupdate on the UK Iodine Survey.Saturday, 11 September: Dr MichaelTunbridge, Patron, and one of thefounding trustees of the British ThyroidFoundation, will speak on ʻThe Spectrumof Thyroid Diseaseʼ.Saturday, 4 December: Inge Harrison,Endocrine Nurse specialising in thyroidcancer from Addenbrookes Hospital inCambridge, will talk about ʻA day in the lifeof the Endocrine Nurseʼ.Registration takes place at 10.30am andmeetings finish at approximately 1pm. Allmeetings take place at The Pavilion, OpenUniversity, Milton Keynes, MK7 6AA.For further information please ring Brendaon 01908 502214 or see our local groupʼswebsite www.thyroidmk.co.uk - Wilma

Newcastle upon Tyne andNorth TynesideThe Newcastle and North TynesideSupport Group held its first meeting in thenew premises of the Newcastle CityLibrary on Saturday 27 February. DavidMorning, Senior Lecturer at NorthumbriaUniversity gave a lively andcomprehensive presentation on themental health effects of chronic illness ingeneral and then led a wide rangingdiscussion with particular reference tosufferers from thyroid disorders. Theexcellent central venue attracted morenewcomers to the group and in spite ofthe extreme cold weather over 30 peopleattended.

Our next meeting will be in the samevenue - The Bewick Hall, Level 2,Newcastle City Library, 33 New BridgeStreet West, Newcastle upon Tyne (fiveminutesʼ walk from Monument Metro) - onSaturday 22 May from 10am to 12 noon,when Dr Sue Vidler MIFL, StressManagement Consultant, will facilitate astress management workshop. To book aplace, please contact me on: 01912531765 or email [email protected] suggested entrance donation is £2 tocover room hire costs - Judith

OxfordA small group meeting was held onTuesday 9 March at North OxfordAssociation, and discussions took placeon mental confusion in thyroid patients.Our next meeting will take place onMonday, 24 May from 7-9.30pm. Thespeaker is Colette Tracey who will talkabout physiotherapy advice to re-awakenatrophied muscles. The meeting will takeplace at the North Oxford Association,Diamond Place, Banbury Road,Summertown, Oxford. If you requirefurther information please contact me:[email protected] or telephone01235 832696 - Lesley

Nottingham meetingDo you live in the Nottinghamarea and do you have a thyroid orparathyroid disorder? If you wouldlike to find out more on how tomanage it and about supportnetworks please come along to:

The Education CentreKingʼs Mill HospitalMansfield RoadSutton in AshfieldNottinghamshireNG17 4JL

Tuesday 27 April 2010 5.30pm to 7.30pmRefreshments on arrival

Speakers will include Prof.George Thomson, ConsultantPhysician, Kings Mill Hospital, andJudith Taylor, member of theBTF Board of Trustees and HPTHUK Public Affairs Officer.

To book a place call: 01623622515 ext.3575 oremail [email protected]


OUR PARTNER ORGANISATIONS

OFFICIAL BTF LOCAL COORDINATORSOur coordinators will also be happy to take general calls on all aspects of thyroid disorders

OFFICIAL BTF TELEPHONE CONTACTS

Birmingham Janet (PC,CS,RIC) 0121 6287435Bolton Carole (FC,CS,RIC) 01204 853557Durham Jennifer (U) 0191 5693578Edinburgh Margaret (PC) 0131 6647223Hereford Denise (O,RI,U) 01432 271561

Penny (Ch) 01225 421348Debby (Ch) 0208 9597257Dave (PC,CS,RAI) 07939 236313Jackie (PC,CS) 01344 621836Fiona (C,HCN,CS,RAI) 01926 853320Christopher (PC,FC,CS,RAI) 01840 213171Sue (PC,CS,RAI) 01909 732476Gay (G,TS) 0208 8469101Collette (U,ITSH) 01695 721281Brenda (U) 01908 502214Wilma (U) 01592 754688

AMEND – Information on medullary thyroid cancer. Contact: Jo Grey 01892 516067 email: [email protected] website: www.amend.org.uk

Hypoparathyroidism (HPTH) UK – an organisation providing information and support about all types of parathyroid disorders. Contact: Liz Glenisteremail: [email protected] website: www.hpth.org.uk. HPTH Helplines 01342 316315 (South) and 01623 750330 (North)

Thyroid Cancer Support Group –Wales 08450 092737 email: [email protected] website: www.thyroidsupportwales.co.uk

Butterfly 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: www.butterfly.org.uk

Thyroid Eye Disease Charitable Trust: TEDct, PO Box 1928, Bristol BS37 0AX. 0844 8008133 email: [email protected] website: www.tedct.co.uk

British Thyroid Association website: www.british-thyroid-association.org

Sense about Science website: 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 Graves’ disease

RI Radioactive iodine treatment for anover-active thyroid

TED Thyroid eye diseasePH Post-operative hypoparathyroidism

KEY

BRITISH THYROID FOUNDATION DETAILS

Joan (U) 01865 730919Angela (U) 01943 873427Sheryl (U) 02920 610090Bob (U) 01202 722784Richard (U) 01483 576785Olwen (O,RI,U) 01536 513748Lucy (GR, RI,U) 0117 9424396Jane (GR, RI,TED,G,U) 01737 352536Peter (TED,GR) 01200 429145Bridget (GR,TS,U,PH) 01623 750330

Manchester & Salford Nia (U) 01942 819195Milton Keynes Wilma (U) 01908 562740Newcastle upon Tyne & North Tyneside Judith (U) 0191 2531765Oxford Leslie (U) 01235 832696

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

7 to 9.30pm9am to 5pm only 10am to 12 noon weekdays

Not available to take calls

After 6pm weekdays and anytime weekendsAfternoons only

All enquiries to:The British Thyroid Foundation, 2nd floor, 3 Devonshire Place, Harrogate, North Yorkshire HG1 4AA Tel 01423 709707 or 01423 709448Website: www.btf-thyroid.org. Office enquiry line open: Mon to Thurs, 10am - 2pm. In the event of a complaint, please address your correspondenceto ‘The Chair of Trustees’.

Director and Secretary to the Trustees: Mrs J L HickeyTreasurer: Mr A B MenziesComputer Manager: Professor B HickeyPA to the Director: Mrs C McMullan [email protected] Assistant: Jennifer LinleyEditor: Judith Taylor email [email protected]

Medical Editor: Dr P PerrosChildren’s Corner Editor: Shannon Davidson email [email protected] Office Volunteers: Jan Ainscough, Angela Hammond, Vivienne Rivis,Pam Cowburn, John Gorham, Tracy Chandler, Katharine Jeans, Donna ReedDesign and artwork for BTF News: Keen Graphics 01423 563888

Next issue of BTF News: Summer 2010. Letters and articles should be sent to the Editor, BTF News by 14 May 2010. News from local groups shouldbe sent in to the PA to the Director to arrive by 27 May 2010.For on-line donations please visit www.justgiving.com/btf/donate

Copyright © 2010 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.

Issue no 72 Spring 2010 BBTTFF …btf-thyroid.org/images/documents/btf_newsletter_72_spring_2010.pdf · The British Thyroid Foundation l 2nd Floorl 3 Devonshire Place l Harrogate

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