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Issue no 65 Summer 2008 www.btf-thyroid.org BT F N e w s BTF INFORMATION EVENTS – LEEDS AND NEWCASTLE UPON TYNE The British Thyroid Foundation l BTF has hosted two information events recently. In March, we were joined by TEDct (Thyroid Eye Disease Charitable Trust), to co-host a joint Information Event at Pudsey Civic Hall, Leeds. The day began with a welcome from Janis Hickey, Director of the BTF. Speakers included: Dr Ramzi Ajjan, Senior Lecturer and Honorary Consultant in Diabetes and Endocrinology, University of Leeds who gave a fascinating overview of thyroid disorders, followed by patients who gave their personal experiences: Leeds local group co-ordinator, Angela Hammond (hypothyroidism), and Judith Tabor (hyperthyroidism). Mr Richard Gale, Specialist Registrar, Ophthalmology, St Jamesʼ University Hospital, Leeds spoke on thyroid eye disease with the patientʼs perspective being given by BTF Trustee, Peter Foley. The speakers were joined by Dr Colin Dayan (Consultant Endocrinologist, Bristol Royal Infirmary and Chair of TEDct) and Dr Stephen Gilbey (Consultant in Diabetes and Endocrinology, St Jamesʼ University Hospital, Leeds) during the question and answer session. Pictured above manning the BTF stand at the Information Event Leeds are: left to right Judith Tabor, BTF Trustee, Peter Foley, BTF local group co-ordinator, Angela Hammond and BTF Director, Janis Hickey. 2nd Floor l 3 Devonshire Place l Harrogate The audience at the BTF TEDct Information Event – Leeds. June saw the BTF holding an Information Event at the Freeman Hospital, Newcastle upon Tyne. Speakers included: Janis Hickey (Director, British Thyroid Foundation) who gave a brief summary of the work of the BTF, Margaret Morris (Endocrine Specialist Nurse and recipient of the BTF Evelyn Ashley Smith Award 2007), who spoke about her study, and Dr Petros Perros (Consultant Endocrinologist, Freeman Hospital) who gave an overview of hypothyroidism, and included the history of thyroid research, key research workers, and groundbreaking discoveries. Professor Simon Pearce (Consultant Endocrinologist, Royal Victoria Infirmary) provided facts about hyperthyroidism and dispelled some myths, and Dr Denise Adams (General Practitioner, Ponteland, and thyroid patient) gave a talk about thyroid medication, using a colourful presentation of artistsʼ and sculptorsʼ artwork, followed by Dr Stephen Ball (Consultant Endocrinologist, Royal Victoria Infirmary), who told us about advances in the field of thyroid cancer, and clarified the standards of treatment and care that patients should expect. The event included question time and lively discussions took place with the medical panel which was joined by Miss Jane Dickinson, Consultant Ophthalmologist, Royal Victoria Infirmary. We would like to thank everyone involved with the preparation for these Information Events, including the staff of both Pudsey Civic Hall and the Freeman Hospital who were so accommodating and made us feel very welcome; the Newcastle upon Tyne Hospitals NHS Trust for providing the welcome refreshments; all the helpers who came along to give us a hand on the day and especially the speakers, who so very generously gave up their Saturday to l North Yorkshire l HG1 4AA come and share their knowledge with us it was very much appreciated. We hope to be able to host further Information Events around the country in the near future. If you would be interested in helping with such a venture in your area then please do get in touch with BTF Head Office. Pictured above: Professor Simon Pearce speaking at the BTF Information Event in Newcastle upon Tyne. BRITISH ENDOCRINE SOCIETY CONFERENCE APRIL 2008 – HARROGATE The annual Society for Endocrinology BES meeting held in Harrogate was a great success. There were 925 attendees with professional interests in endocrinology over the four days with 27 companies and associations exhibiting, including the BTF, AMEND and TEDct. The wide range of sessions included eight excellent plenary lectures and many other thought-provoking and interesting presentations. Many awards were presented for outstanding work and a total of 23 prizes were awarded to young endocrinologists. The conference is returning to Harrogate for the next annual meeting on 16-19 March 2009. BTF was BTF News 65 l PAGE 1 able to display its ʻQuick Guidesʼ, which received favourable feedback, and use the opportunity to advertise both the ʻResearchʼ and ʻEndocrine Nurseʼ awards. has an excellent working relationship with the BTF and I am looking forward to working with them during my term as Presidentʼ. Our thanks go to the previous postholders: Professor Tony Weetman, Dr Prakash Abraham and Dr Bijay Vaidya for their valuable input to the BTF over the past three years. If any BTF member would be interested in starting a local support group in the Sheffield, Birmingham or Newcastle upon Tyne areas, please contact BTF Head Office as the new BTA post-holders would be keen to offer you their support. Pictured above from left to right, visiting the BTF stand at the BES conference: Leanne Ward, endocrine specialist nurse, Hull; Dianne Wright, BTF Trustee and specialist nurse in endocrinology, Bradford; Shashana Shalet, lead endocrine specialist nurse, Hope Hospital, Manchester and Catherine Collins, endocrine specialist nurse, Hope Hospital, Manchester. PAGE 2 l BTF News 65 DOCTORS FOR REFORM The following is taken from the Doctors for Reform website: www.doctorsforreform.com and reproduced with their kind permission: The NHS doctorsʼ group Doctors for Reform has launched a new campaign to help patients who have been prevented from paying extra towards their NHS care in order to receive new drugs and treatments. Pictured above at the TEDct stand at the BES conference, left to right: Lin Welch TEDct, Betty Nevens BTF and Sheila Daniels TEDct. Professor Jayne Franklyn, Professor of Medicine, University of Birmingham, Queen Elizabeth Hospital, Birmingham has recently been elected President of the British Thyroid Association with Dr Amit Allahabadia, consultant endocrinologist from Royal Hallamshire Hospital, Sheffield; taking on the role of Secretary and Dr Salman Razvi, consultant endocrinologist from the Queen Elizabeth Hospital, Gateshead, who is the new Treasurer. Professor Franklyn says, ʻBTA …to BTF Trustee and local co-ordinator for Plumstead (now Greenwich group), Davinder Babraa, who, on July 7th 2008 celebrated the tenth anniversary of the group she set up. Our thanks go to Davinder, her husband Gajinder, her team of helpers, and all the members of the Plumstead group who have supported her over the years in making the group so successful. Davinder Kaur Babraa, BTF local co-ordinator for Plumstead. Professor Jayne Franklyn NEW PRESIDENT, TREASURER AND SECRETARY OF THE BRITISH THYROID ASSOCIATION CONGRATULATIONS Dr Amit Allahabadia Legal opinion indicates that the Department of Healthʼs bar on such “topup” payments is unlawful. Doctors for Reformʼs campaign will build up a “fighting fund” of £35,000 to enable a patient to undertake a judicial review of the current legislation. This would establish a precedent that will potentially benefit thousands of patients around the country. Why we need your support Dr Salman Razvi We strongly sympathise with patients who have been caught up in the current confusion over “top-up” payments. The current NHS funding system is not transparent, and patients are unsure of their rights and entitlements. Some patients have been able to “top-up” their NHS care and some have not. Patients in identical situations have access to different types of drugs depending on the area of the country in which they live. The Department of Health has said that patients should not be able to “top-up”. But legal opinion is that such payments should be allowed under the current law. We want to help patients who want to challenge the ban on top-up payments in a legal case. Your financial support is not needed to pay for legal fees; the solicitors and barristers are giving their time for free. It is needed to form a fighting fund to pay the costs of the case if it is lost. These costs are estimated to be £35,000. If the case is won, all donations will be returned, unless donors are happy for the donation to be put towards the ongoing work of Doctors for Reform. How much should I give? All donations are very welcome, up to a maximum of £5,000. How can I give? You can donate over the telephone by calling Doctors for Reform on 0207 233 3824 or send a cheque to Doctors for Reform, Hope House, 45 Great Peter Street, London, SW1P 3LT. Key arguments and supporters The Department of Health has argued strongly against “top-up” payments. Alan Johnson, Secretary of State for Health, has said: “A founding principle of the NHS enshrined in every single code of practice – most recently the 2003 code of practice – is that someone is either a private patient or an NHS patient. They can be a private patient and decide to resume their treatment as an NHS patient, but they cannot, in one episode of treatment, be treated on the NHS and then allowed, as part of the same episode and the same treatment, to pay money for more drugs” (Hansard, Column 724, 18 December 2007). But legal professionals have identified a number of grounds that can be used to challenge the Departmentʼs position. We will be running this campaign with the support of Halliwells LLP Solicitors who have acted pro-bono on all of the previous cases in the area. We also have the full support of the Doctors for Reform membership. Several members of Doctors for Reform have agreed to give a second medical opinion, where practical, for patients considering legal action. About Doctors for Reform Doctors for Reform is an independent, non-party group which believes that the time has come to look at new ways to supply and fund healthcare. Its membership is currently nearly 1,000 NHS doctors. SOCIETY FOR ENDOCRINOLOGY Many thanks to the Society of Endocrinology who have generously awarded BTF a grant to enable one member of office staff to attend a telephone counselling skills course. HEAD OFFICE ADDRESS BTF is updating its literature and included in these updates is our postal address of 2nd Floor, 3 Devonshire Place, Harrogate, North Yorkshire HG1 4AA. However, the previous address of PO Box 97, Clifford, Wetherby, West Yorkshire LS23 6XD, although not now being advertised as it will eventually be phased out, for the time being is still active and whichever address is used the correspondence will reach us. DONATIONS Many thanks for your generous donations - we are grateful for them all. Remember to contact us if you are undertaking a fund-raising event in aid of BTF, giving plenty of notice if you require a ʻBTFʼ T-shirt or running vest and send us a photograph for our records and possible inclusion in the newsletter. Also check with your employer if you are undertaking a fundraising event, as some employers operate a match-funding scheme in which they match all or part of any funds you raise. We would also like to express our gratitude to the following people: Debby Benjamin who held a ʻsinging for the terrifiedʼ workshop and raised £72.50. John and Sylvia Brown who raised £100 through holding a ʻCoffee Morningʼ. Mrs M Parle for her donations in lieu of flowers in respect of recent losses. Mrs D E North who held celebrations for her 80th birthday (very many Happy Returns to you, Mrs North) and raised £365 by requesting donations to BTF in lieu of gifts. The Perry Parsons Big Band who held a concert for The Supper Club, Ikenham and raised £200. For information on the band, see their website www.ppbb.co.uk Mr Johan Venter who recently celebrated his 60th birthday (Happy Birthday, Mr Venter) and raised £160 by requesting donations in lieu of gifts. We would like to extend our sympathy to friends and families of the following, and thank them for the kind donations in their memory: Anne Tomlinson Finbarr Joseph Belcher BTF AT THE SCOTTISH PARLIAMENT (MAY 2008) In May 2008, members of the BTF Edinburgh local support group, headed by co-ordinator Margaret McGregor, hosted a briefing session on thyroid disease at the Scottish Parliament for MSPs (Members of the Scottish Parliament) and their researchers. Dr Anthony Toft, consultant endocrinologist, Edinburgh Royal Infirmary, and former BTF Trustee agreed to lead the briefing, which was also attended by BTF Trustee Mike Gourlay. The following is an account of the briefing: With the right diagnosis and treatment the lives of people with thyroid disorders can be turned around. This was the message given by Dr Anthony Toft, consultant physician and endocrinologist at Edinburgh Royal Infirmary, when he visited the Scottish Parliament to speak to MSPs and their researchers. The meeting was attended by Nicola Sturgeon, Scotlandʼs Minister for Health and Wellbeing, MSPs, researchers and a representative group of BTF members from around Scotland. Dr Toft described the meeting as “a valuable opportunity to ensure that our health policymakers are aware that there are issues surrounding common conditions often perceived as simple and straightforward to diagnose and treat”. BTF News 65 l PAGE 3 Among those who received a certificate of thanks on the day were BTF office volunteers: Jan Ainscough, Kath Parker and Pat Crossland. Above: The Scottish Parliament Building Mike Gourlay from the BTF Board of Trustees outlined the work of the BTF since its inception and its role in advising and supporting patients who have thyroid disorders. The host of the event, Cathy Peattie MSP, who herself suffers from a thyroid disorder, told the meeting, “It is important that MSPs get a better understanding of the range and nature of thyroid disorders and treatments, and the implications for those affected. We are making decisions that will affect peopleʼs access to therapies and the Health Serviceʼs ability to prioritise and provide treatment. So I was very pleased to be able to help organise this meeting to give MSPs an opportunity to increase their awareness of the issues”. Margaret McGregor, the local BTF co-ordinator, who set up the meeting said, “The meeting was a useful step in raising the profile of thyroid conditions and the BTF at a political level”. Many thanks to all who attended. MAYOR OF HARROGATE PRESENTS AWARDS TO VOLUNTEERS Volunteers from in and around Harrogate received thanks from the Mayor, Councillor John Fox, during an event organised by the Council for Voluntary Services (CVS) held in Harrogate as part of the National Volunteersʼ Week celebrations held in June. More than 100 people attended, with 27 charities present to represent their cause including the BTF, represented by secretary, Cheryl McMullan and office volunteer, Kath Parker. The year of the volunteer is the theme during the Mayorʼs term in office, where he has pledged to support and highlight the role of volunteers in the community. PAGE 4 l BTF News 65 Pictured above: BTF office volunteer, Kath Parker receiving her certificate of thanks from the Mayor of Harrogate, Councillor John Fox. THE SECOND NATIONAL AUDIT REPORT OF THE BRITISH ASSOCIATION OF ENDOCRINE AND THYROID SURGEONS (BAETS) The following is reproduced with kind permission of Dendrite Clinical Systems. Dendrite Clinical Systems Ltd is a specialist supplier of clinical databases, analysis software and consultancy services for the international healthcare sector. Website: www.e-dendrite.com CLINICAL DECISION-MAKING AT YOUR FINGERTIPS The British Association of Endocrine and Thyroid Surgeons (BAETS, previously the British Association of Endocrine Surgeons) is pleased to announce a new joint publication of the Second National Endocrine Surgery Audit Report, with Dendrite Clinical Systems. This latest publication documents the current status of endocrine surgery in the UK and this latest audit provides valuable insights into the outcomes and workload of endocrine surgery and it is hoped this will assist in the planning and structure of training programmes for future endocrine surgeons. “The aim of the audit is to build a national picture of the practice of various pathologies. By recording the outcomes of investigations, operations and in particular complications, it allows members to compare their outcomes with national data,” commented Mr David ScottCoombes, Director of the BAETS Audit and Consultant in Endocrine Surgery at the University Hospital of Wales, Cardiff, UK. “In addition, by establishing individual workloads, the audit provides information that we hope will encourage national debates, such as who should be a national training unit and how many centres are needed to undertake surgery for rare illnesses. In addition, the audit records the amount of surgical training that individual members provide. This latest report will show that the BAETS is a truly professional body demonstrating its commitment to audit.” Since the launch of BAETSʼ web-based data entry system in August 2005, some 11,000 endocrine operations have been submitted by BAETS members on surgery to the thyroid, parathyroid, adrenal and pancreas. Prior to the BAETS involvement with Dendrite the audit did not exist. A paper pilot was undertaken, designed by the members of the Executive committee (of the BAETS) that specified the data that the Association wished to be gathered. The BAETS engaged Dendrite to produce the first national audit report from paperbased data collection. Dendrite proposed the implementation of their web-based registry system and this was commissioned two years ago. “The very good news is that members have taken to the web-based data entry system like a duck to water,” Mr Scott-Coombes revealed. “It has been so successful that there are very few questions generated to the support staff.” This latest report covers the period from January 1st 2005 to December 31st 2006 and covers the four key surgical areas of endocrine disease: thyroid, parathyroid, adrenal and pancreatic surgery. The 144page document examines existing surgical practice and reports on current clinical quality, which can be compared with standards set by national guidelines. The ability to record pathology also allows an examination of current surgical practice in benign and malignant disease, as well as participation in modern multidisciplinary management for thyroid cancer. Key results from the audit Included in the publication are the outcomes from 3,804 thyroid operations (approximately one-fifth of the total number performed each year in the UK) submitted by over 70 BAETS members and the report highlights that there is a wide range of workload for thyroid disease. According to the audit, some 22.5% of surgeons perform five or fewer thyroid operations per year. Another finding is that thyroid surgery is consultant-led in the main. In relation to clinical data and outcomes, the report records that thyroid malignancy accounted for 20% of all thyroid operations. No fewer than 80% of patients with thyroid cancer underwent pre-operative fine needle aspiration biopsy. Areas for improvement include the fact that only 79% cases of thyroid cancer were discussed at a multidisciplinary team meeting and that the rate of pre-operative vocal cord check for re-do thyroid surgery was only 79%. The analysis for parathyroid surgery includes data from 1,896 procedures submitted from over 50 BAETS members. Again, the report notes that there was a wide range in workload, with 41% of surgeons performing fewer than ten cases each year. Like thyroid surgery, parathyroid surgery is consultant-led with evidence of supervised training in one-fifth of operations. The latest analysis has confirmed that BAETS members have embraced localisation studies, although the report highlights that there is some confusion about its role with regard to undertaking a targeted approach for those pathologies, which are themselves an indication for bilateral neck exploration. Overall, a third of operations was targeted. The overall success rate (normocalcaemia) was an impressive 95%. The data indicates that intraoperative qPTH assay and preoperative localisation improved outcomes. The report also shows that the failure rate for multiple endocrine neoplasia was 20%. The overall mortality was 0.2%. A total of 27 members submitted data from 317 adrenal operations, with 70% of cases undertaken by eight members and ten members performing two cases or fewer over a two-year period. Phaeochromocytoma, Cushingʼs and Connʼs accounted for 72% of the pathology, with laparoscopic surgery reported as the most favoured approach, unless the tumour was malignant. The mortality rate was reported as 0.7%. With regard to pancreatic surgery, insulinoma was found to be the most common pathology, with 70% of operations involving a laparotomy. Unfortunately, there was insufficient data to draw conclusions as only 24 cases were submitted by nine members. It is hoped that an increase in the data will provide more meaningful conclusions over time. “We have had a fantastic response in terms of numbers of cases being submitted. I think this success in numbers we have is because the data we are collecting is not overcomplicated, but the huge numbers that we are accumulating make the data powerful. The report clearly shows that there is a wide variance in individual workload of members, particularly in the practice of surgery for thyroid cancer,” added Mr Scott-Coombes. “The audit also reveals that there are probably too many surgeons operating on rare diseases. The complication rates are higher than were expected, however this demonstrates honest data collection. Overall, there were good outcomes for parathyroid disease and the evidence clearly shows good training within thyroid and parathyroid surgery. Currently, the data for adrenal and pancreas surgery is still too small to draw many conclusions.” Future goals It is expected that in the future the dataset can be expanded to create greater clarity on additional issues, for example, distinguishing the primary thyroid pathology from any secondary diagnosis, establishing the indication for thyroid surgery and whether re-do thyroid pathology is performed on the same side as the previous operation. The web-based data entry system will allow a subtle increase in the complexity of the data collected. This is the second such national audit and although it has provided a wealth of data, according to Mr Scott-Coombes, there are still areas for improvement. “In order to get good compliance from our members the data that is collected has to be relatively uncomplicated. The feedback that we are giving to individual members is currently rather limited. We are working on a system that will give a more in-depth annual report for each member including comparisons with the national average. Although the audit is currently anonymous, I think we may slowly lose the anonymity.” Moreover, the audit currently collects data from members of the BAETS, despite much thyroid surgery being undertaken by non-members. “We have contacted other national organisations (ENT-UK [the British Association of Otorhinolaryngologists] and British Association of Head and Neck Oncologists [BAHNO]) to encourage those members who undertake thyroid surgery to contribute to the audit.” It is hoped that this latest report will be the catalyst for additional research projects as well and to stimulate debate among members that will result in improvements in service delivery, training and adherence to national guidelines. “The next audit will report on 2006-2007 data. Much of this will be cumulative and will also include the data from the 2005-2006 audit. We will ask members to complete their data submission by April 2009 and hope to produce a report by September 2009. It is my hope that the large numbers of patients included will start to show trends with respect to workload and outcome,” he added. Mr Scott-Coombes also paid tribute to Dendrite: “I have enjoyed a close collaboration with Dendrite, a company that has a proven track-record in medical audit and who tailor the analyses in response to the clinical input. Not only has their support in writing the report has been magnificent, but their staff are both personable and knowledgeable in their field. I believe this type of audit will become more widespread amongst other specialties and I would have no hesitation in recommending Dendrite to other societies and associations.” Dr Peter Walton, Managing Director of Dendrite Clinical Systems, commented: “I would like to thank all the contributors for their efforts and in particular, Mr ScottCoombes, for his unwavering enthusiasm and collaborative approach. This second national audit clearly shows the value of national clinical audits. All healthcare systems have finite resources and such assessments can provide data on optimum provision of resources, especially in regard to current workloads and future training. We look forward to working to produce the third national audit with the BAETS in the future.” BTF News 65 l PAGE 5 THE ROYAL COLLEGE OF OPHTHALMOLOGISTS (RCOPHTH) BTF Director and Secretary to the Trustees, Janis Hickey, was invited to attend the Royal College of Ophthalmologistsʼ annual congress held in Liverpool. Janis tells us about the event as follows: The Royal College of Ophthalmologists (RCOphth) held its annual congress in May at Liverpoolʼs brand new Arena and Convention Centre. The Gravesʼ Orbitopathy session was chaired by Miss Jane Dickinson, from the Royal Victoria Infirmary, Newcastle upon Tyne, who had kindly arranged for me to attend the session. Speakers included Mrs Carol Lane, from the University Hospital of Wales, who spoke on “The Five Minute Assessment of Gravesʼ Orbitopathy”, Professor Wilmar Wiersinga, from the Academic Medical Center, University of Amsterdam, whose talk about “The Use and Misuse of Medical Therapies” gave information about comparative treatments, and Mr Geoffrey Rose, from Moorfields Eye Hospital, London, who spoke about “The Scope for Surgical Rehabilitation”, in which he described the advances in surgical techniques over the past decade, and how important it was to listen to patientsʼ opinions about acceptable standards in rehabilitative surgery. BTF trustee, Peter Foley, then took part in an interview with Miss Dickinson, and gave a vivid account of his experience of severe thyroid eye disease and its impact on his life. This dialogue between patient and doctor, thought to be the first of its Pictured above: From left to right: Miss Jane Dickinson, Mr Geoffrey Rose, Mrs Carol Lane, Professor Wilmar Wiersinga, Mr Peter Foley and Mrs Janis Hickey. kind in the history of RCOphth meetings, was of great interest and value in conveying the patient perspective of thyroid eye disease, and a format to be welcomed at all medical meetings. Throughout the presentations, reference was made to the work of EUGOGO – the European Group on Gravesʼ Orbitopathy PAGE 6 l BTF News 65 new quick guides and the BTF: ʻThyroid Cancer - For Patients By Patientsʼ booklet. The meeting was attended by surgeons, oncologists, endocrinologists, physicians and cancer nurse specialists. An expert panel presented 12 difficult and unusual thyroid cancer patient cases outlining the patient history and characteristics followed by a discussion of treatment and investigation options and a clinical strategy for treatment. IODINE SUPPLEMENTS Pictured above: The newly opened Arena and Convention Centre, Liverpool, venue of the Royal College of Ophthalmologistsʼ annual congress 2008. a multidisciplinary consortium of clinicians who have a special clinical and research interest in Graves' orbitopathy. EUGOGO has developed standardised clinical assessment methods for the evaluation of patients with thyroid eye disease, and are currently working on multi-centre treatment trials using these standard assessments. Professor Wiersinga, President of EUGOGO, emphasised that patientsʼ quality of care could be enhanced by adopting a multi-disciplinary approach - the organisation of combined thyroid eye disease and endocrine clinics that provide a favourable environment for teaching and research, and by involving patient support groups. I would like to express my thanks to Miss Jane Dickinson for inviting me to this very interesting session. MASTERCLASS IN CLINICAL PRACTICE FOR THYROID CANCER - APRIL 2008 BTF was represented by Carole Ingham (Trustee and Chair of the BTF Cancer Group) at this highly informative and educational meeting held at the Royal College of Physicians, London. The BTF stand was received with great interest. Compliments were given by delegates attending the meeting about the Over the past few months, BTF has been inundated with letters from members who have received advertisements and information regarding non-prescription mail order products claiming to improve an underactive thyroid condition. Our enquiries reveal that the active ingredient in these products is iodine and the British Thyroid Association has issued the following statement on the use of iodine supplements: The thyroid gland requires iodine for normal function. Adults need 150 micrograms of iodine per day. Pregnant women need 200 to 250 micrograms per day and young children need less than 150 micrograms per day. The UK is not an iodine-deficient country and we obtain the iodine we need from a normal healthy balanced diet. Table and cooking salt made in the UK contains little or no iodine. Too little iodine can result in thyroid swelling (a goitre). Goitre in the UK is not due to iodine deficiency. Too much iodine can be dangerous and cause either underactivity of the thyroid (hypothyroidism) or in some cases overactivity (hyperthyroidism). If you are taking thyroid hormone (eg levothyroxine) for hypothyroidism or for a goitre (an enlarged thyroid gland) there is no need to supplement with iodine. It will do no good. Also it can be harmful and dangerous to take iodine if you have an overactive thyroid even if you are on standard antithyroid drugs as the extra iodine counteracts their effects. Should you take iodine supplements at any time? Only if it is recommended by your GP or hospital consultant. Iodine supplements will not: l l Stop the autoimmune process in Hashimotoʼs disease Help to reduce weight at any time even if you are on levothyroxine l l Help if thyroid function tests are borderline and you are not on levothyroxine Help to reduce the dose of levothyroxine if you are already taking it l Boost a failing thyroid gland l Help to keep you normal after treatment for hyperthyroidism l Act as a natural product to replace levothyroxine Iodine supplements will help: In persons who are vegans (who may be iodine-deficient) None of the other substances in preparations containing iodine has any proven effect, adverse or otherwise, on the thyroid gland. PUTTING THE PATIENT FIRST: CASES JOURNAL HOLDS THE PROMISE OF BETTER CARE We have received the following press release from BioMed Central (BioMed Central are the online publisher of free peer-reviewed scientific articles in all areas of medical research and biology): Patients and doctors are increasingly using the internet to learn more about illnesses. Now, a new venture from BioMed Central allows patients and doctors to contribute directly to advancing medical understanding of their disease, by sharing their experiences online. Cases Journal, an online open access journal, publishes case reports across all medical specialties. It aims to publish every wellreported description of a patient's case. Traditional medical journals have published only the most original or striking case reports, but Cases Journal will make every patient count. We hope to publish thousands of cases each year. Doctors and patients are encouraged to write case reports together, where each report can include a 'Patient's perspective' where the patients themselves describe their symptoms, tests, and treatments in their own words. This will help other patients with similar problems, but will also provide physicians with an unprecedented level of detail on each clinical condition. All case reports published in Cases Journal (and its sister publication, Journal of Medical Case Reports, edited by Professor Michael Kidd) will be added into a database that allows physicians to search for cases similar to those they see in their practice. The database can be searched for reports of patients from a similar demographic area, experiencing similar symptoms or taking the same medication. Users, therefore, can benefit from the experience of thousands of doctors and patients worldwide to help inform their treatment decisions. The database will also help to identify adverse drug reaction as early as possible - by searching for case reports related to a particular drug, clinicians will have an unparalleled level of information on new treatments. Richard Smith, Editor-in-Chief of Cases Journal (best known for his previous role as Editor of the British Medical Journal), said of the new journal, "Health care is in some ways nothing more than an accumulation of case reports just as a population is a collection of people. And just as every person is important and different so is every case. In Cases Journal, everybody who sees a patient, and everybody who is a patient, can contribute and I urge you to do so". Anyone wishing to contribute to Cases Journal can do so in conjunction with their doctor at www.casesjournal.com CASE NOTES – RADIO 4 Dr Mark Porter hosted a radio programme on 1st April 2008, which covered the topics of thyroid eye disease, thyroid cancer, thyroid and pregnancy. During the programme Janis Hickey, BTF Director, spoke about her experiences of thyroid eye disease, and Kate Farnell (Butterfly Thyroid Cancer Trust) spoke about thyroid cancer. Also featured were Dr Mark Vanderpump and BTF Trustee Professor John Lazarus. If you wish to listen to this programme or see the transcript of it, there is a link from the BTF website: www.btf-thyroid.org (under ʻWhatʼs Newʼ) to the BBC webpage for that programme. Then choose "Listen Again". Alternatively paste this link into your browser: www.bbc.co.uk/radio4/science/casenot es_20080401.shtml THE PATIENT EXPERIENCE OF SERVICES FOR THYROID EYE DISEASE (TED): A QUESTIONNAIRE SURVEY The Thyroid Eye Disease Charitable Trust (TEDct) and the British Thyroid Foundation (BTF) would appreciate your help. We are looking for people willing to complete a questionnaire relating to personal experiences of the treatment of thyroid eye disease. It is hoped that the information from this survey will help to improve the treatment and care of thyroid eye disease in the U.K. The survey contains 23 questions, which should take about 15 minutes to complete. If you would be interested in completing a questionnaire, please contact BTF Head Office (email: [email protected] Tel 01423 709707) giving your name and address including postcode or write in to: TED Survey, British Thyroid Foundation, 2nd Floor, 3 Devonshire Place, Harrogate, North Yorkshire HG1 4AA and we will be happy to send you a copy of the questionnaire. The more responses we have the more we can press for changes in services for people with Thyroid Eye Disease that reflect everyoneʼs views. The deadline for the return of completed questionnaires is 1st September 2008. We will make the results of the survey available through our websites (http://www.tedct.co.uk/ and http://www.btf-thyroid.org/) and newsletters later in the year. BTF News 65 l PAGE 7 Research News RESEARCH AWARDS 2008 Two one-year awards of up to £10,000 each are being offered to enable medical researchers to supplement existing projects or for pump-priming existing research ideas. Applications are invited for basic science or clinical projects. BTF will be seeking to fund one basic science and one clinical project, or two clinical projects each year. Funds will be awarded for consumables, running costs and necessary items of equipment. Research must be directly related to the thyroid or thyroid disorders. The successful project must be specifically directed to the study of thyroid disorders or an investigation into the basic understanding of thyroid function. In all cases, a panel appointed by the Trustees of the British Thyroid Foundation in conjunction with representatives from the British Thyroid Association and the British Thyroid Foundation will referee applications. Applications will be graded on the merit of the project and the awards will be given to those that achieve the highest score. Further information and application forms are available from The British Thyroid Foundation, Research Award, 2nd Floor, 3, Devonshire Place, Harrogate, North Yorkshire, HG1 4AA. Application forms are also available on the BTF website www.btf-thyroid.org. The closing date for applications is 31st August 2008. REQUEST FOR THYROID HELP FOR DISEASE IN RESEARCH TAYSIDE The following was published in ʻThe PROJECT – Endocrinologistʼ 87:18, copyright Society HYPOTHYROIDISM for Endocrinology 2008 and reproduced with their permission: AND DEPRESSION We have been asked to include the following request from Sam Kirby regarding a research project she is undertaking: ʻI am a qualified counsellor and postgraduate researcher at Bristol University. I am interested in people's experience of depression pre and post hypothyroidism diagnosis for a research project I am about to begin. This is a qualitative piece of research and I am looking for participants. I would be most grateful if any of your members with hypothyroidism would agree to be interviewed for my research. For further information I can be contacted on 0117 9591 591 or by email at [email protected]ʼ. PAGE 8 l BTF News 65 Thyroid disease is common in the UK and its causes are varied. Hypothyroidism is usually managed within primary care, while hyperthyroidism and other thyroid conditions typically need to be referred to hospital specialists. Understanding the occurrence of thyroid disease is critical in order to assess the impact it will have on the use of healthcare resources. Several studies have shown geographical variation in the incidence of thyroid disease, but few have investigated the variation within a single location. Leese and colleagues have carried out a population-based study to determine the changing incidence and prevalence of different thyroid conditions in Tayside, Scotland. They found that the prevalence of all thyroid disease increased from 2.3% to 3.8% of the population over 8 years (1994 – 2001). This 63% increase is due to an increased incidence of hyperthyroidism in females (6.3%) and primary hypothyroidism in males (4.1%). Earlier diagnosis may also be a factor, and the authors report a 36% increase in the number of thyroid tests performed during the study period. The reported increase in prevalence and incidence of thyroid disease indicates that general practitioners and endocrinologists will be subject to increasing workloads in the future. CLINICAL THYROIDOLOGY - NOTES BY DR MAZZAFERRI MD Dr. Mazzaferri is the Editor-in-Chief of Clinical Thyroidology. The following article is taken from the professional publication ʻClinical Thyroidologyʼ. It is reproduced in its original format as requested by the American Thyroid Association (ATA) and is available on their website: www.thyroid.org. Copyright belongs to the ATA and the article is reproduced with their kind permission. Smoking stimulates thyroidgland secretion The background of the study. Smoking may stimulate thyroid hormone secretion, in addition to being a risk factor for hyperthyroidism and eye disease caused by Gravesʼ disease. In this study, the relationships between smoking and pituitary–thyroid function were studied in a large number of subjects. How the study was done. The study group consisted of 30,834 adults living in one county in Norway. None had a history of thyroid disease, and all provided information about smoking, including the age at which they had started smoking, the number of years they had smoked, the number of cigarettes smoked daily, and if and when they had stopped smoking. Serum thyrotropin (TSH) was measured in all the subjects and free thyroxine (T4) was measured in those with abnormal serum TSH concentrations. The results of the study. The average serum TSH concentrations in both women and men were highest in the never smokers and lowest in the current smokers. TABLE. GEOMETRIC MEAN SERUM TSH CONCENTRATIONS IN 30,834 NEVER SMOKERS, FORMER SMOKERS, AND CURRENT SMOKERS WOMEN No. (Number) Never smokers 10,622 Current smokers 5,577 Former smokers MEN 4,240 Serum TSH (mU/L) 1.66 1.61 1.33 Never smokers 3,295 1.70 Current smokers 3,023 1.40 Former smokers 4,037 1.61 Among the patients who had stopped smoking, the average serum TSH concentrations increased gradually with time after cessation of smoking, especially in women. Among current smokers, serum TSH concentrations were lower in those who smoked more often. For example, among the women, the mean serum TSH concentrations were 1.61 mU/L in the never smokers and 1.30 mU/L in those who smoked >13 cigarettes daily. The results were similar among the men. Among the women, the frequency of high serum TSH concentrations was higher in the never smokers than in the current smokers. The results in the men were similar, although fewer men had high serum TSH concentrations. Conversely, low serum TSH concentrations were more frequent in women who were current smokers than in those who had never smoked (few men had low serum TSH concentrations). YOUR THOUGHTS ABOUT 28-DAY LEVOTHYROXINE PRESCRIBING: RESULTS OF THE BTF SURVEY Half the respondents (51%) on 28-day prescriptions did not have to ask their doctor for the higher amount (Fig 3), whilst fewer than a third (27%) of those prescribed levothyroxine for 28 days had asked their GPs for a longer prescription (Fig 4). GPs were split about 50:50 between those who agreed to prescribe a longer amount and those who refused to extend the prescription when asked. Many thanks to our members who completed our survey on 28-day prescribing in the Autumn 2007 issue of the BTF News. Simon Pearce, Professor of Endocrinology at Newcastle University, has kindly summarised the results of the survey and these results are as follows: The Survey Following our request in the Autumn 2007 newsletter for information about your experiences of obtaining levothyroxine prescriptions, an overwhelming response was received. The following article contains a summary of the results from the 2551 questionnaires returned. Firstly, 96% of respondents have been taking levothyroxine tablets for more than a year, with more than 70% of people taking it for more than five years (Fig 1). Figure 2 shows that 38% of people were being prescribed levothyroxine for 28 days at a time, with only 28% receiving prescriptions for three months (84 days). Figure 5 shows that the overwhelming majority of respondents are not happy with the 28-day prescribing arrangement, 59% of people being dissatisfied overall, compared to just 13% feeling satisfied. Interestingly, people are very careful about keeping up-to-date with their prescriptions: only 17% of people have missed levothyroxine tablets, with only 6% having gone without tablets on more than one occasion (Fig 6). The conclusions of the study. Smokers have lower serum TSH concentrations and a lower prevalence of hypothyroidism as compared with nonsmokers, and among women a higher prevalence of hyperthyroidism. The original article. Asvold BO, Bjøro T, Nilsen TI, Vatten LJ. Tobacco smoking and thyroid function: a population-based study. Arch Intern Med 2007;167:1428-32. (Fig 6) OVERLEAF. BTF News 65 l PAGE 9 tablets, several postcode regions came up as showing that everyone, or nearly everyone who responded is being given 28-day prescriptions. These regions may have stricter prescribing policies than others: Northamptonshire, Norwich area of Norfolk, Maidstone, Hastings, Sutton area of Lincolnshire, Beverley and East Yorks, Exeter & East Devon, Bishops Stortford, Clitheroe and the East Lancashire area. When asked what were the major reasons for dissatisfaction with 28-day prescribing the two most common responses were that it is inconvenient to pick up or that it interferes with the working day (Fig 7). In free text several other common themes emerged: l l l l l In rural areas people are travelling significant distances to get their prescription, sometimes making more than one journey per prescription (eg. to order it, pick it up and have it dispensed). People with physical disabilities, unsurprisingly, have problems getting to the practice. Many people feel that it is a waste of their doctorʼs time and they do not want to bother the doctor for something so simple. Working long hours or shift-work makes it difficult for many people to get to the surgery or pharmacy during limited opening times. Several people leave the UK, on holiday or for work, for more than a month each year, and this also causes a problem. In contrast, where other medications are being prescribed every 28 days, several people comment that it makes it easy to remember that all the prescriptions are for 28 days, and that they have to go back for their other medications anyway. While it is difficult to be sure how the distribution of people who replied compares to that of the whole UK population dependent on levothyroxine PAGE 10 l BTF News 65 How does this compare with other sources of information? Good information about local prescribing practices is difficult to come by. However, the Department of Health issues a yearly statistical analysis of all the drugs dispensed through community pharmacies and this allows some idea about the national picture. During 2001, there were 4.1 million prescriptions for levothyroxine 100 µg tablets in England and the average content of each prescription was 54.4 tablets. This is sufficiently close to the figure of 56 tablets to assume that most people were receiving 56-day prescriptions (on average). By 2007, there were 7 million prescriptions for levothyroxine 100 µg tablets and the average content of each prescription was reduced to 44.9 days, slightly over 6 weeks. This is certainly consistent with the information in Figure 2, that around a third of people taking levothyroxine now receive 28-day prescriptions. What is the point of 28-day prescribing? In England, local Primary Care Trusts have responsibility for the drug budget for each of the GP practices in their area. Twenty eight-day prescribing was brought in to try to limit wastage of drugs. Drug wastage is known to be a significant source of lost money for the NHS. The reasons are mainly that many medical problems get better and the person then stops taking the medication. If people have a three-month prescription, there is a risk that a much larger amount of medication may be wasted. Also, certain drugs do not agree with patients due to side effects etc. So a person may take only one or two daysʼ worth of tablets and the rest is wasted. Pharmacies never reissue a drug that has been dispensed even if it is returned with the wrapper intact, as they cannot guarantee it was stored correctly. So 28-day prescribing was simply meant to save money. Almost every Primary Care Trust, however, has made an exception to the 28-day rule for drugs, such as the oral contraceptive where the consequences of a single missed tablet could be disastrous, and the medication is very cheap. A similar exception could be made in the case of levothyroxine for equally valid reasons – it is cheap, and people whose blood test results indicate an alteration to their dose of levothyroxine are normally advised to take the altered dose for three months before a further blood test is carried out. What about the implications of 28-day prescribing for levothyroxine? The results of the survey show that most people on levothyroxine have been taking it for more than a year, and of course, the vast majority will need it for the rest of their lives. The survey also shows that most people are unhappy with having to go back to GP every 28 days to get the repeat prescription. Surely, though, 28-day prescribing is worthwhile, as the NHS is saving money that can be used elsewhere? – Well actually, no. Levothyroxine is so cheap (less than 4 pence per 100 µg tablet, about £1 per 28-day supply) that the monthly dispensing fees paid to the pharmacist for 28-day prescriptions (90 pence per prescription) can never significantly balance out any marginal saving from ʻun-wastedʼ tablets. In fact the extra dispensing fees actually add to the NHS bill, as pharmacists receive 90p thirteen times each year, rather than just 4 or 6 times a year as would be the case were fewer prescriptions written to cover longer periods. Wilma Beckett, Janis Hickey on behalf of the British Thyroid Foundation and myself, on behalf of the British Thyroid Association (BTA), estimated a net loss to the NHS of about £7 million nationally from 28-day prescribing of levothyroxine alone. Our calculations were published in the British Medical Journal online correspondence on July 21st last year. The BTF, in partnership with the BTA, will present the survey results widely to medical professionals and prescribing advisers in an attempt to bring about a situation which is more convenient for the patient, saves general practitionersʼ time and potentially a saving to the NHS. The Department of Health itself gives plenty of indicators why people with chronic health conditions should be an exception to the 28-day prescribing trend (see following articles), and this of course includes hypothyroidism. Summary From the survey, it is clear that there are a lot of people being prescribed only 28days of levothyroxine at a time, and that many people are dissatisfied with the situation. It is also evident that this “blanket” policy, as applied by certain PCTs neither makes good clinical sense for patients, nor good financial sense for the NHS in the case of levothyroxine. However, it is clear from the two documents reproduced below that these are not national policies, and that your GP, as the person directly responsible for your care, still has complete discretion to prescribe the clinically appropriate amount of levothyroxine for you. We hope this information may help to change local PCT policies with regard to thyroxine and other cheap but essential medication. We also think that most GPs will see the obvious common sense in longer levothyroxine prescriptions, and not feel impelled to follow thoughtless local PCT policy in this area. The Department of Health Position 28 April 2008 It is common practice nowadays for prescriptions to be issued for only one month or 28 days at a time. However, there has been no Government directive to specify the length of time for which prescriptions should be issued. Responsibility for prescribing, including the issue of repeat prescribing and the length of prescriptions, rests with the doctor who has clinical responsibility for that particular aspect of a patientʼs care. The issuing of prescriptions for shorter periods of time commonly arises from attempts to cut down on the amount of medicines wasted or unused each year. For instance, if the doctor decides to change the patientʼs medication (for example, because the patient is suffering from side-effects), it cannot be issued to another patient. Returned medicines are destroyed because there is no guarantee that the medicine was kept under the right conditions or has not been contaminated. Issuing shorter prescriptions also gives the doctor the opportunity to review ongoing medication, which is important for some groups of patients. In addition, there may be safety considerations associated with storing large quantities of a particular drug in the home, and some medicines have a short shelf-life. The Department recognises that prescriptions covering longer periods of time are more appropriate and more convenient for some patients, and may also reduce pharmacistsʼ and doctorsʼ time and costs. The decision of ʻhow much to prescribeʼ is therefore a complex decision. The National Prescribing Centre issued guidance in 2000 to Health Authority and Primary Care prescribing advisers. This was authorised by a senior Department of Health official and outlined advice on what factors should be taken into account when considering prescription duration (copy attached {see below}). National Prescribing Centreʼs Advice: Prescription duration and drug wastage Every pound wasted on unused prescription drugs is a pound lost to direct patient care. The Department of Health is determined to cut down on drug wastage and has already taken a number of initiatives to improve prescribing practice, supported by prescribing advisers and pharmacists in the NHS. For example, there have been encouraging results from several repeat dispensing schemes in which pharmacists have helped to manage repeat medication. Schemes in which patients have the opportunity to discuss their medicines with a pharmacist, who then makes recommendations to their GP, have also been considered. The Department is determined that best practice from all these schemes will be shared across the NHS. Many prescribers already routinely write prescriptions for one calendar month. Overall, the more medicine that is prescribed at any one time, the more likely it is that some of it will be wasted, especially where patients are taking many medicines, or are less able to manage their medicine stocks effectively. However, where patients have stable chronic conditions and can manage their stocks of medicine, prescriptions for longer periods may be more suitable, and more convenient for patients. Factors to take into account when considering prescription duration include: l l l l l l How stable the patientʼs condition is and how often their clinical management is to be reviewed; Risk of side-effects, taking into account the patientʼs clinical history; How likely it is that the patient will take the medication as they are supposed to; Safety considerations associated with storing the particular drug in the home; Shelf-life of the medicine; Relative cost to the NHS of the ingredients, dispensing and prescribing time. (Note: dispensing fees do not come off PCG (Primary Care Group, now known as PCT Primary Care Trust – Ed) budgets; changes to the overall volume of dispensing fees may create in-year pressures but are likely to balance out the following year); l l Patient convenience including, where relevant, cost in prescription charges. It is particularly important that the prescriber takes into account the views of patients if a change in their prescription duration, say from three months to one month, is being considered; Where practices are considering a change in prescription duration policy, liaising with affected dispensing contractors is also advisable. In determining how much of a drug to prescribe, prescribers should ensure that, first and foremost, the prescription meets the clinical needs of the patient. Kevin Guinness, Head of the Pharmacy and Prescribing Branch, Department of Health. From Connect, the National Prescribing Centre quarterly newsletter, issue 20, March 2000. In returning their BTF 28-Day Survey many people enclosed letters with further comments. Representations of the points made in these letters are as follows: ʻWhen I lived in Kent I could only get a prescription for 28 days supply of thyroxine. So every month I had to have an appointment with my doctor so he could sign my repeat prescription. Recently I have moved to Hampshire where my new doctor informed me that they do ʻblock prescriptionsʼ. This is fantastic as the doctor has in effect ʻpresignedʼ my prescriptions for the next 12 months and now I simply go to the pharmacy and pick up my next monthʼs supply – very convenient.ʼ ʻI have queried why I can only have 28 days medication at a time and was informed that it is due to EU (European Union) regulations!ʼ ʻI order prescriptions on-line, but it is still a nuisance having to order every 28 days and then visit the pharmacy to collect the medication.ʼ ʻI was always able to have a four-month prescription but now my GP informs me, that because I am over eighty, I can only have a 28-day prescription. I think this is a blatant case of ʻageismʼ. I now have to take a journey into town every month to obtain my tablets rather than every four. I do not have anyone to collect my prescription for me.ʼ BTF News 65 l PAGE 11 ʻMy GP recently changed my prescriptions to 28-day and I mentioned your survey to her and suggested this change was very expensive. She said she was already aware of this but said we must consider the pharmacists. If we do not give them sufficient work we will lose them.ʼ ʻWithout warning, when I went to collect my prescription for thyroxine, I noticed the prescription was for only 28 days rather than the usual 3-months. When I queried it I was informed this was now the rule and was then given a letter from the GP practice explaining this was the case for all free prescriptions imposed by the local PCT, with the exception of HRT (Hormone Replacement Therapy), the contraceptive pill, and people who pay for NHS prescriptions. I fail to understand why HRT is exempt, yet thyroxine isnʼt. The other very serious issue is of course the discrimination and inequality of treatment between people on free prescriptions and those who are not, which will especially affect people of retirement age, people on benefits etc.ʼ ʻAre the NHS policy makers complete idiots – People on daily medication such as thyroxine need it to stay well, we have no choice – target the medications that are more likely to be wasted such as painkillers, antibiotics etc.ʼ ʻHere in France, our records, test results, x-rays, consultant/doctors notes are given to you to keep and produce when required (thus, no loss of records when you go for an appointment). Top copies of prescriptions (called ordonnance here) are yours to keep, during and after dispensing and are issued for a variety of time spans, and will be of a repeat nature from one to three months, even sometimes six months. They are shown as a monthly amount with the required number of repeat months. It is necessary to give them, each time, to the pharmacy for the next monthly amount to be dispensed; the pharmacist notes the quantity and drug on the national computer, which is linked throughout the country. If you try and get the supply early against the prescription you are questioned for the reason e.g. going on holiday. Each time we attend the doctors we pay him directly a consultation fee, which is later reimbursed from the state and our health insurance, therefore one tends to go only when necessary.ʼ ʻMy doctor admitted that all the doctors in the surgery each spent an hour every day writing repeat prescriptions. Surely writing a 3 month prescription for levothyroxine would go some way to cutting down their workload, as well as making it more PAGE 12 l BTF News 65 convenient for the patient, especially when you think how many people have hypothyroidism in this country…. Itʼs just common sense, surely!ʼ The next steps: How to take things forward If you are not satisfied, for whatever reason, with your prescribed supply of levothyroxine, you should discuss this firstly with your GP who may judge that your condition is stable and that it is clinically appropriate for you to receive prescriptions to cover longer periods. You may wish to show your GP or the surgeryʼs Practice Manager this article about 28-day prescribing, and in particular, the message from the Dept. of Healthʼs National Prescribing Centre. It may help you to obtain a prescription that is more convenient for you. Writing to the Chief Pharmacist at your local PCT is another route you can take. Details of PCTs or health boards (Northern Ireland and Wales) or health councils (Scotland) are available on: England: www.nhs.uk Scotland: www.show.scot.nhs.uk Wales: www.nhsdirect.wales.nhs.uk Northern Ireland: www.n-i.nhs.uk LETTERS AND COMMENTS We welcome letters from our members but, owing to restricted space, letters will be subject to editing at the Editorʼs discretion. Please understand that medical comments are given for information only and cannot replace a personal consultation with your doctor or specialist. You should not alter the recommended treatment issued by your personal physician without their knowledge and agreement. We would advise you to consult with your GP or specialist with regard to further treatment choices or advice. Dear Editor I have been taking medication for hypothyroidism for many years. Recently I was reading about cholesterol in a medical handbook, which was available to patients in my GP waiting room. I noted that cholesterol level could be affected by an underactive thyroid. When I had my first cholesterol check last year the good one was excellent but the bad one was 7.2 with an overall reading of 5.0. My GP wanted me to have statins but I decided to try lowering my cholesterol by diet and at the last check it had come down to 6.8, making the total reading under 5.0. What I would like to know is why an underactive thyroid affects oneʼs cholesterol. I am taking 125 mcg of levothyroxine. Yours sincerely Mrs PAM Our medical adviser replies: Cholesterol is a particular type of fat in the blood and is influenced by the amount of thyroid hormones secreted by the thyroid gland. If a person has a low thyroid level then the cholesterol is usually higher than normal. This is due to changes in metabolism, which occur in hypothyroidism where there is reduced breakdown of cholesterol in the body (rather than an increase in its production). Once hypothyroidism is treated and maintained within the ʻnormalʼ range, the cholesterol levels should go back to their previous levels, unless the raised cholesterol is due to other factors. Dear Mrs Nevens I have heard that aspirin can affect your thyroid function test. Is this true and if so, how? If it is true should I then not take aspirin prior to my annual thyroid function test? I take 75 mg of aspirin per day for stroke prevention. Yours sincerely Mr GB Our medical adviser replies: Aspirin, when taken at regular doses of 300 to 900 mg per day, can cause a small fall in free thyroxine (FT4). Doses of 75 mg have not been studied but it is highly unlikely that such a small dose would have any effect on FT4. Aspirin has no effect on thyroid stimulating hormone (TSH) levels in blood and your GP will be using TSH to assess adequacy of thyroxine (T4) replacement at your annual check so there is no need to stop taking aspirin prior to your annual test. Dear BTF I recently visited my dentist and he said he would give me an injection without adrenalin. I tried to ask about this but did not receive a satisfactory reply. I am currently taking 100 mcg of levothyroxine for hypothyroidism. Could you give me any advice about the non-use of adrenalin by the dentist? I have been left confused and a little worried about my next dental visit. Yours sincerely Miss AMK Our medical adviser replies: There is no logic in avoiding local anaesthetic containing adrenalin for dental work in people who are taking thyroxine, though it is probably not a good idea to use adrenalin in a patient with untreated thyrotoxicosis (overactive thyroid). Dear Sir/Madam I would greatly appreciate the BTFʼs opinion on the effects, if any, of DECT (digital enhanced cordless telecommunications) telephones on existing cases of hypothyroidism. Thank you. Yours Mrs JB Our medical adviser replies: Your question relates to the effect of electromagnetic fields such as those produced by DECT or mobile phones on the thyroid. The BTF does not have an official stance on this as there is scanty relevant evidence for or against, but I am happy to give you my views. There is a lot written about this and ample material on the Internet suggesting that the hypothalamic-pituitary-thyroid axis is disrupted. A search of the medical literature on this subject has yielded only one article relating to the effects of electromagnetic fields in human subjects (Djeridane Y, Touitou Y, de Seze R. Influence of electromagnetic fields emitted by GSM-900 cellular telephones on the circadian patterns of gonadal, adrenal and pituitary hormones in men. Radiat Res. 2008 Mar;169(3):337-43). This study showed no effects on the function of the thyroid. There are, in addition, other articles relating to effects in experimental animals or cells in culture, some showing a small effect. This is an evolving field of research, but at present, it seems that there is no significant influence of DECT on the thyroid in humans. Dear Editor I have been a member of the BTF for about 10 years. The magazine has been very useful in managing an underactive thyroid. I am currently on 150mcg per day of levothyroxine. For the last two and a half weeks, I have been on a gluten-free diet, as I was having trouble with my bowels and waterworks. Since going on a gluten-free diet, there has been an almost 100% improvement. The doctor has carried out various tests but none has detected a gluten intolerance. I have researched a gluten-free diet and in a lot of cases this can be associated with a thyroid problem. Perhaps you can give me some advice, or possibly print my letter to see if anyone else is having the same problem. Yours sincerely Mrs JS Our medical adviser replies: The association between coeliac and thyroid disease is that if you have one autoimmune thyroid disorder you are at a greater risk of developing a further nonthyroid autoimmune disorder. Coeliac disease is an autoimmune condition brought about by an intolerance of gluten, found in wheat, rye and barley. Symptoms may include bloating, diarrhoea, nausea, wind, etc. It follows that diagnosis can take time as the symptoms may be due to other causes. An appropriate diet should solve the problem after an accurate diagnosis by your doctor. If you have had the appropriate investigations and they have come back negative it is unlikely that you have coeliac disease. Making a definitive diagnosis is important as a gluten-free diet is not easy to follow for the rest of one's life. Furthermore if you have not received professional dietetic advice, such restriction can lead in the long-run to vitamin and mineral deficiencies. Dear BTF Three years ago I was on tablets for an overactive thyroid. After giving birth two years ago it seemed to stabilise and when tested a year ago all was OK, but last week when I had my annual blood test the results showed it was now underactive with the following results: TSH (thyroid stimulating hormone) 54.9 mu/L and FT4 (free thyroxine) 7.9 mol/L I donʼt have any symptoms of hypothyroidism. Can you comment on why this is? Yours sincerely Mrs PA stimulating and inhibitory antibodies to the thyroid and the balance fluctuates between the two. Sometimes the thyroid underactivity can be transient due to inflammation of the thyroid (a condition called ʻthyroiditisʼ) and the gland in due course (after several weeks usually) repairs itself and can function normally. Your doctor will be able to assess in which category you fall, although that is sometimes impossible to predict and the ultimate test is to either wait and see what happens to your thyroid blood tests, or, if you start on thyroxine, it can be withdrawn after a few months to see if you still need it. The fact that you have no symptoms is not unusual, however, if your thyroid underactivity persists and is not treated, you will develop symptoms. Pregnancy or miscarriage can trigger thyroid underactivity, but this usually happens within one year of giving birth or miscarrying. Dear Sir Ten years ago I was diagnosed as a Type 2 Diabetic. The diagnosis was based purely on a single capillary blood sample, with a blood glucose level of 33.6. After eight years of treatment I have been Our medical adviser replies: Thyroid underactivity (hypothyroidism) can sometimes occur in people who have had an overactive thyroid due to Gravesʼ disease in the past, and have completed a course of antithyroid medication treatment successfully. In fact this happens to as many as 10-20% of people with Gravesʼ disease and some doctors consider it as part of the natural course of Gravesʼ when the thyroid ʻburns outʼ. In any case about 10% of all women develop an underactive thyroid at some point in their lives. There is a variant of Gravesʼ disease (sometimes called Hashitoxicosis) when the thyroid can swing from underactive to overactive or the other way around. This is thought to result from the body producing BTF News 65 l PAGE 13 informed that I am not diabetic and that I never have been. At the time of diagnosis I was under treatment for hypothyroidism. I am led to believe that hypothyroidism can cause a sugar metabolism disorder. Can you please confirm this? I would be grateful for any help that you can give me in this matter. Mr RG Our medical adviser replies: Having untreated hyperthyroidism (overactive thyroid) not hypothyroidism (underactive thyroid) can push the sugar levels up but these would return to normal levels once the hyperthyroidism is treated. Dear Betty I am waiting to undergo radioiodine treatment, for thyroid cancer recurrence, on 14th April. I am currently on a low-iodine diet. However, I am unclear as to when I should stop this diet and return to normal eating. Any advice would be appreciated. Many thanks Mrs MW Our medical adviser replies: A lowiodine diet should be followed for about 2 weeks prior to ablation with normal diet resuming after the ablation, in fact around the same time as resuming thyroxine. Dear BTF Having just returned from attending your ʻInformation Eventʼ at the Freeman Hospital in Newcastle upon Tyne, I felt I had to write and tell you how impressed I was. Everything was very good, from the facilities provided by the hospital to the organisation by yourselves and most of all the excellent speakers. In these days where ʻdoctor bashingʼ seems to be the norm, one would see from the interest shown by the doctors present, taking care to answer questions arising and showing genuine concern for individual cases, not to mention the fact that they all gave up their day off (Saturday) to take part, that perhaps this is not justified and I think we should all remember this. Well done BTF! Yours sincerely Mrs NB Many thanks for sending in your comments, they are much appreciated – Ed. PAGE 14 l BTF News 65 LOCAL GROUPS If any member is interested in becoming a BTF local support group co-ordinator or telephone contact, please contact BTF Head Office on 01423 709707, or the regional support group adviser for your area as listed in this newsletter. Sometimes messages can be difficult to interpret from an answering machine, so if your call is not returned, please call again. Pictured: Anthony Robinson, Prescribing Support Pharmacist, Bolton PCT with members of the Bolton Group at their meeting on June 7th. Bolton Many thanks go to the speaker at our June meeting – Anthony Robinson, Prescribing Support Pharmacist, Bolton Primary Care Trust. Anthony gave a very interesting and informative talk about thyroid medication and the PCT along with answering many questions from those attending the meeting. The next meeting will be held on Saturday 8th November from 10am to 12 noon at The Barlow Institute, Bolton Road, Edgworth. The speaker for this meeting will be Professor Tim Dornan, endocrinologist from Hope Hospital, Manchester. A donation of £1 per person is suggested to help cover costs for room hire and refreshments. Please do not hesitate to contact me for any further information or if you feel you may be able to offer your help at future meetings. Tel. 01204 853557 or email [email protected] - Carole. Edinburgh The Edinburgh Group continues to meet on the last Tuesday of the month (except during school holidays) in Liberton High School, Gilmerton Road, Edinburgh EH17 7PT at 7.15pm. If you would like further information, or would like to help with the group, please contact me on 0131 664 7223 - Margaret. Fife Why not come along to our group and learn a little more about the thyroid condition? We meet in Glenrothes, on the last Wednesday of every month starting at 7.30pm and finishing approximately 9pm. For further details contact me on 01592 754688 - Wilma. Manchester and Salford The meeting held on 17th June was very well received. We were joined by Dr. Indi Banerjee, Paediatric Endocrinologist at Manchester Childrenʼs Hospital, who spoke on paediatric endocrinology. His talk was very interesting and informative; we learnt some valuable things specifically in the Manchester area. I would like to thank Dr Banerjee for his time and the presentation he gave. The next meeting will be held on Wednesday 10th September (a change to date previously advertised). The venue will be Sacred Trinity Church, Chapel Street, Salford M3 5DW and will start at 7pm. The speaker to be announced at a later date. We also intend to hold an informal AGMtype meeting in the week commencing 27th October 2008. Any preferences for the actual date, time and venue would be welcomed. However, the consensus at the June meeting was to meet in a café in Manchester. We will be discussing ideas for a Christmas fundraising event for BTF, and any feedback/suggestions regarding the local group meetings will also be received with thanks. For any enquiries or information of future meetings or to receive email updates about meetings, email [email protected] I am also available on 0161 737 0345 after 6pm - Nia. Milton Keynes Our speaker in June was Dr Shanthi Chandran, consultant endocrinologist, Milton Keynes Hospital NHS Foundation Trust. This very busy lady took time out from her new consultant role to meet the Milton Keynes group members. A short presentation on thyroid nodules was followed by an extensive question and answer session. Dr Chandran and her colleague, Dr Asif Ali, are newly appointed consultant endocrinologists in Milton Keynes. We would like to congratulate them on their new posts and we look forward to working with them. On Saturday 6th September Dr Tina Kenny, general practitioner and Chair of the Professional Executive Committee of the Milton Keynes PCT will be describing ʻthe current changes in health care and the impact this will have on patient careʼ. On Saturday 6th December Dr Haido Vlachos, consultant psychiatrist, Milton Keynes Primary Care Trust, will be joining us to discuss ʻthe psychological problems in thyroid conditionsʼ. Both these meetings will be held at 10.30 am at the Pavillion, Open University, Milton Keynes. If you are newly diagnosed, or have a long-standing thyroid condition, come and join our local meetings. A donation of £1 is requested from all who attend to pay for the room hire, to help balance the books. This includes coffee and a biscuit. For any further information please contact my deputy co-ordinator, Brenda, on 01908 502214 – email [email protected] - Wilma. Oxford We will be holding an informal meeting on Tuesday 16th September at 8pm, North Oxford Association Community Centre, Diamond Place, Banbury Road, Summertown, Oxford OX2 7DP. For further information please contact me: [email protected] or telephone 01235 832696 - Lesley. Tadworth, Surrey Our next meeting will be held on Tuesday 14th October at the Diabetic Centre, St Helier Hospital, Carshalton at 7.30pm. Please call to confirm attendance. Also, please telephone me on 01737 352536 if you feel you would be interested in becoming more involved with this group - Jane. For up-to-date information regarding all local group meetings and for meeting dates that may not coincide with the BTF Newsletter publication, visit the BTF website www.btf-thyroid.org or contact the Local Co-ordinator of the group – details on the back page of this newsletter. The British Thyroid Foundation became a registered charity in 1991. It aims to provide support and clear information to people with thyroid disorders, to promote a greater awareness of these disorders amongst the general public and the medical profession, to help set up regional support groups and to raise funds for research. The BTF is very appreciative of our fantastic team: employees, volunteers, members, professionals, doctors and nurses who help the organisation to develop, as proved by our successful activities over the years. Patrons: Maria Aitken Jenny Pitman OBE Melissa Porter BA (Hons) Claire Rayner OBE Dr W Michael G Tunbridge MA, MD, FRCP Gay Search Trustees: Mrs D Kaur Babraa Mrs W Beckett BA RGN SCM RHV Mr P Foley Dr G Gibson MBChB, DRCOG, MRCGP, DFFP Mr M Gourlay Dr P Hammond MA MD FRCP Mrs C Ingham Mrs J Lane MRPharmS, BPharm(Hons) PGDip Professor JH Lazarus MA MD FRCP Dr P Perros FRCP Ms Alison Waghorn MD FRCS FRCS (Ed) MBChB Mrs Dianne Wright RGN, DipHE Ex-Officio Members of the Trustees: Professor J A Franklyn MD PhD FRCP – President, British Thyroid Association Mrs L Welch – Trustee of the Thyroid Eye Disease Charitable Trust. Solicitors: McCormicks Solicitors, Wharfedale House, 37 East Parade, Harrogate HG1 5LQ. Tel. 01423 530630 Newsletter Disclaimer: The purpose of the BTF newsletter is to provide information to BTF members. Whilst every effort is made to provide correct information, it is impossible to take account of individual situations. It is therefore recommended that you check with a member of the relevant medical profession before embarking on any treatment other than that which has been prescribed for you by your doctor. We are happy to forward correspondence between members, but do not necessarily endorse the views expressed in letters forwarded. Medical comments in the newsletter are provided by members of the medical profession and are based on the latest scientific evidence and their own individual experiences and expertise. Sometimes differing opinions on diagnosis, treatment and management of thyroid disorders may be reflected in the comments provided, as would be the case with other fields of medicine. The aim is always to give the best possible information and advice. If you have any comments or queries regarding this publication or on any matter concerning the British Thyroid Foundation we would be pleased to hear from you. BTF News 65 l PAGE 15 BTF REGIONAL SUPPORT GROUP ADVISERS: South East South West Midlands North Jane 01737 352536 Bob 01202 722784 (and thyroid cancer contact) Wilma 01908 562740 Carole 01204 853557 OFFICIAL BTF LOCAL CO-ORDINATORS: Our co-ordinators will also be happy to take general calls on all aspects of thyroid disorders Bolton Edinburgh Fife Henley-on-Thames Leeds Greenwich, London Manchester Milton Keynes Oxford Tadworth, Surrey Carole (FC,CS,RIC) 01204 853557 Margaret (C) 0131 6647223 Wilma (U) 01592 754688 Paul (O,TS,U) 01491 574934 Angela (U) 01943 873427 Davinder (U) 020 84732579 Nia (U) 0161 7370345 Wilma (U) 01908 562740 Lesley (U) 01235 832696 Jane (GR,RI,TED,G,U) 01737 352536 OFFICIAL BTF TELEPHONE CONTACTS: Our telephone contacts will also be happy to take general calls on all aspects of thyroid disorders Penny Dave Jennifer Jackie Chris Anne Fiona Gay Collette Brenda Jane Olwen David (Ch) 01225 421348 (PC,CS,RI) ( 07939 236313 (U,H) 01773 880887 (PC,CS) 01344 621836 (U) 01462 711475 (PC,CS) 01484 510888 ***(C,HCN,CS,RI) 01926 853320 (G,TS) 0208 8469101 *(U,ITSH) 01695 721281 (U) 01908 502214 (C,TC-P) 01522 872331 (O,RI,U) 01536 513748 (U) 01708 223375 Christine Chris David and Mina Sandra Sheryl Sue Tom Christine Janet Anna Peter (FC,CS,RI) 01493 721354 *(PC,FC,CS,RI) 01840 213171 01594 810677 *(U) 0151 4748884 **(U) 029 20610090 (PC,CS,RI) 01909 732476 (O,U) 01244 547646 (C,CS,RI) 01387 256776 (O) 01322 225470 ****(P-op H) 01202 255159 ***(TED, GR) 01200 447615 * 9am to 5pm only ** Afternoons only *** After 7pm **** 10am to 12 noon Mon-Fri KEY O PC TS G P-op H Overactive thyroid Papillary cancer of the thyroid Thyroid Surgery (non-cancer) Goitre Post-op Hypoparathyroidism CS ITSH H RI U Thyroid cancer surgery Isolated TSH deficiency Hashimoto’s Radioiodine treatment Underactive thyroid AMEND – Information on medullary thyroid cancer. Contact: Jo Grey 01892 525308 email: [email protected] website: www.amend.org.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 is available to patients nationwide. Contact: Kate Farnell 01207 545469 email: [email protected] website: www.butterfly.org.uk Thyroid Cancer Support Group – Wales 08450 092737 email: [email protected] website: www.thyroidsupportwales.co.uk Thyroid Eye Disease Charitable Trust: TEDct, PO Box 2954, Calne SN11 8WR 0844 8008133 email: [email protected] Thyroid Federation International Website: www.thyroid-fed.org British Thyroid Association Website: www.british-thyroid-association.org PAGE 16 l BTF News 65 Ch Thyroid disorders in children FC Follicular cancer of the thyroid C Cancer of the thyroid TED Thyroid eye disease RI Radioiodine treatment GR Graves’ disease HCN Hürthle Cell Neoplasm TC-P Thyroid cancer in pregnancy All enquiries to: The British Thyroid Foundation, 2nd floor, 3 Devonshire Place, Harrogate, North Yorkshire HG1 4AA Tel 01423 709707 or 01423 709448 Website: www.btf-thyroid.org Office enquiry line open: Mon to Thurs, 10am - 2pm. In the event of a complaint, please address your correspondence to ‘The Chair of Trustees’. Director and Secretary to the Trustees: Mrs J L Hickey Office Manager: Mrs B Nevens Secretary to the Director: Mrs C McMullan Treasurer: Mr A B Menzies Medical Editor: Dr P Perros Computer Manager: Professor B Hickey Webmaster: Dr M Ali Design and artwork for BTF News: Keen Graphics 01423 521070 For on-line donations please visit www.justgiving.com/btf/donate Next issue of BTF News: Autumn 2008. Articles should be sent to "The Editor" by 10th September 2008. © BTF 2008. Written permission to copy part or all of the contents of the BTF News must be sought from Head Office.