Download BTF INFORMATION EVENTS – LEEDS AND NEWCASTLE UPON

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
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North Yorkshire
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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
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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
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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
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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
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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
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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
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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:
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Stop the autoimmune process in
Hashimotoʼs disease
Help to reduce weight at any time even
if you are on levothyroxine
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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
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Boost a failing thyroid gland
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Help to keep you normal after treatment
for hyperthyroidism
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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
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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
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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
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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:
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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
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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:
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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);
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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
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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
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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
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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.