World Thyroid Forum
World Thyroid Forum
Ardencote Manor Country Club, Claverdon, Warwickshire – Friday 27th April 2012
The first World Thyroid Forum under the auspices of the World Thyroid Register (WTR) was held on the 27th April 2012. There was representation from the Royal College of Obstetricians and Gynaecologists, the Private and Public medical sector, General Practice and Thyroid Support Groups within the UK and Europe. Dr Gordon R B Skinner chaired the Forum.
Apologies were received from the World Health Organisation, Department of Health, National Institute for Health and Clinical Excellence, Medicines and Healthcare Products Regulatory Agency, General Medical Council, Royal Society of Medicine, Royal College of Physicians, Royal College of Pathologists, Royal College of Psychiatrists, Royal College of Nursing, Independent Doctors Federation, British Medical Association, British Medical Journal, Medical Protection Society, Medical Defence Union and British Thyroid Foundation.
We regret that we did not receive the courtesy of a response from the Royal College of General Practitioners, British Thyroid Association, Society for Endocrinology, Association of Clinical Biochemists nor any Professor of Endocrinology or Consultant Endocrinologist who were invited to the Forum.
This addressed the problems of hypothyroidism in identical twins, the role of thyroid chemistry in Obstetrics and Gynaecology and the usefulness of tri-iodothyronine in treatment resistant depression.
Ms Coralie Phillips and Ms Donna Roach are authors of a most interesting book Hypothyroidism in childhood and adulthood which documents their trials and tribulations during their childhood; it is a unique account allowing comparison of differential treatments in identical twins. They also presented the results of their MSc research, Coralies MSc thesis entitled Controversy concerning the diagnosis and treatment of hypothyroidism: Stakeholders views and recommendations which indicated that a large body of public opinion including thyroid support groups, voluntary organisations and patient support groups were concerned that these patient led organisations were having too little influence on future research into the problems of hypothyroidism. Donnas MSc thesis highlighted concerns regarding a link between artificial fluoridation of water and hypothyroidism.
We were pleased to welcome Dr Paul Hardiman as representative of the Royal College of Obstetrics and Gynaecology; Dr Hardiman is a Consultant and Senior Lecturer at Royal Free Hospital and University College, London.
Dr Hardiman drew attention to the comparative paucity of literature on the relevance of hypothyroidism to obstetrical and gynaecological problems on the Royal College of Obstetrics and Gynaecology (RCOG) website in the UK in comparison to the USA. He provided an interesting account of the evolving utilisation of thyroid function tests in this discipline. Before 1994, this was routine but had gradually declined to approximately 5% of these patients towards the end of the century and reached even lower levels following an audit report which resulted in the 2004 RCOG Guidelines which did not advocate routine thyroid function tests.
Dr Hardiman reminded the Forum of the (then) somewhat controversial work of the late Dr Ginsberg who would diagnose hypothyroidism on the basis of their clinical features notwithstanding unremarkable thyroid chemistry. The Chairman (GRBS) also recalled enjoying professional interaction on shared patients with Dr Ginsberg; she was a wonderful character and is greatly missed by patients and colleagues alike.
Dr Hardiman undertook to revisit the requirement and or extent of utilisation of thyroid chemistry in Obstetrics and Gynaecology with the Royal College of Obstetrics and Gynaecology.
Dr Zaman from the Community Mental Health Team for Older Adults, John Black Centre, Birmingham presented a most interesting paper on the use of tri-iodothyronine in treatment resistant depression. The Star D study which was a prospective clinical trial of Major Depressive Disorder indicated moderate improvement on both lithium (maximum dose 900mg per day) and tri-iodothyronine (maximum dose 50micrograms per day) over 9 weeks of treatment. There was no significant difference in the remission rate, mean time to response to medication and mean time to remission but there was a significant decrease in the frequency of adverse effects and continuance in the trial in patients receiving tri-iodothyronine compared to lithium. This is an important finding suggesting that tri-iodothyronine is a useful adjunctive medication for the treatment of patients with treatment resistant depression.
Mr Paul Robinson whose book Recovering with T3 gives a challenging account of his personal experience of treatment failure with thyroxine – containing preparations, described his return to health using tri-iodothyronine in tune with the circadian rhythm of cortisol production. Difficulties in thyroxine administration which as indicated by the Chairman tend to be the exception rather than the rule were revisited by three case presentations later in the afternoon session.
Mr Robinson also emphasised that a laboratory test which measured not the concentration of thyroid hormones in the serum but the efficacy of these hormones at the cellular level would clearly impart a higher level of precision to the diagnosis and management of hypothyroidism.
This focussed on reports from three Thyroid Support Groups in the UK and Sweden.
We were very pleased that Ms Ewa Berthagen who is the Chairperson for one of the two Thyroid Support Group in Sweden attended the Forum and provided an update of the delivery of care to hypothyroid patients in Sweden. Ms Berthagen drew attention to two serious problems in Sweden namely the non-recognition of hypothyroidism pursuant to thyroid chemistry within 95% reference intervals and the virtual impossibility of providing thyroid medication by an unlicensed medication in Sweden. A petition containing 1000 signatures did not engender any movement in regulatory strategy. It is necessary for patients to travel to Norway or Finland to obtain their medical care; this would seem an even more difficult situation than can obtain in the UK.
Ms Sheila Turner, Chairperson of Thyroid Patient Advocacy outlined four important initiatives of her Support Group and stressed the importance of all patient help groups working together. Firstly the Group have prepared detailed documentation for presentation to the Royal College of Physicians with copies being sent to the General Medical Council, the Secretary of State for Justice, the Treasury Solicitor, the Secretary of State for Health and Shadow Secretary of State for Health, the Royal College of General Practitioners, the Association for Clinical Biochemistry; the Society for Endocrinology; the British Thyroid Association; the British Society of Paediatric Endocrinology and Diabetes, the Deans of all UK Medical Schools and all NHS Endocrinologists. The document presents argument that the medical curriculum is not providing a balanced education on the diagnosis, management and therapeutic strategy for hypothyroidism with greater focus on the physiology of peripheral thyroid utilisation and tissue resistance.
Secondly, the serious problems caused by the two physiologically different definitions of ‘hypothyroidism’.
Thirdly, the registry of counterexamples has reached 2000 in number and is providing critical evidence on the importance of acceptance by the medical profession that there are patients who unequivocally cannot return to optimal health on thyroxine replacement alone; three interesting case reports which relate to this problem were presented later in the afternoon session.
Fourthly, Ms Turner has opened discussion with a member of the Scottish Parliament and there will be formal debate with a balanced group of colleagues in the near future to explore these possible shortfalls in healthcare. Thyroid Patient Advocacy also runs a very successful and active Internet Thyroid Support forum.
Ms Susan Chippendale represented Thyroid UK and presented an interesting overview of the ongoing activities of this organisation. Ms Chippendale emphasised the importance of working with the Department of Health and the medical profession and was pleased to report that an increasing number of medical practitioners, pharmacists and of course patients make contact with Thyroid UK for information on various aspects of hypothyroidism. They also have a researcher who is involved in a study comparing blood and urine tests.
Thyroid UK have initiated a petition to request investigation into the relative efficacy of tri-iodothyronine and natural desiccated thyroid preparations. The petition has presently 3314 signatories. They have also initiated a new membership scheme with a related new publication which is intended to reach a wider base of patients who need help.
Ms Chippendale introduced the Health Unlocked site which has 4500 members and provides advice to patients and this will clearly complement the latter initiatives.
The Thyroid Tracker is due to be launched in London; patients can input their health data to monitor their and view other members data with their permission. The information can be printed off by patients who can then present their symptoms to the Family Practitioner. They are also starting Webinars in September/October 2012.
Thyroid UK are working with the NHS Sustainability Unit to investigate ways of saving the environment and money for the NHS and are also asking for prescriptions to be re-issued at six monthly rather than one or three monthly intervals.
On behalf of the World Thyroid Register, the Chairman gave thanks to the representatives of the thyroid support groups and offered the unqualified support of the WTR to these important projects.
This examined three case reports wherein two of the patients were present at the Forum and answered questions on their medical problems; the patients kindly waived any concerns over confidentiality.
The first patient was unable to take thyroxine over many years and was only returned to optimal health using a T3 containing preparation. It was also notable that this patient had diabetes and hypothyroidism was not diagnosed for some 8 years. This is a critical point; the Chairman emphasised that the presence of another condition most particularly a patient who is deemed by questionnaire to have depression should not be excluded from a diagnosis of hypothyroidism which in his view was not an unusual occurrence in present day medicine.
The second case concerned a patient who unequivocally developed an exacerbation in hypothyroid symptomatology with increasing levels of thyroxine. While there is controversy over the reality and significance of Wilsons syndrome, this patient history certainly points in this direction and we are awaiting the outcome of T3 therapy in this patient.
The third case concerned a patient who reported three serious bouts of acute discomfort particularly relating to muscle cramps and pains within one hour of receiving 25 micrograms of thyroxine two in tablet and one in liquid form. It was particularly interesting that this patient had a high level of thyroid peroxidase antibodies encouraging a hypothesis that the patient was suffering from a form of immune complex shock and there is evidence in the literature that high thyroid antibody levels are in general associated with fibromyalgic type symptomatology.
The final session opened with a general discussion on the context of the proceedings and the delegates were invited to vote on the following.
- Do you think the usefulness of thyroid chemistry towards the diagnosis of hypothyroidism should be investigated by formal clinical trial?
- In a patient under treatment, do you think that the role of thyroid chemistry in deciding the optimal level of thyroid replacement should be investigated by formal clinical trial?
- Do you think that the relative efficacy of the two synthetic hormone preparations and the desiccated preparations Armour and Erfa should be compared by formal clinical trial?
- The results are shown below:
|Do you think the usefulness of thyroid chemistry towards the diagnosis of hypothyroidism should be investigated by formal clinical trial?||40||1||0|
|In a patient under treatment; do you think that the role of thyroid chemistry in deciding the optimal level of thyroid replacement should be investigated by formal clinical trial?||39||1||1|
|Do you think that the relative efficacy of the two synthetic hormone preparations and the desiccated preparations Armour and Erfa Thyroid should be compared by formal clinical trial?||41||0||0|
These results provide a clear mandate to the WTR to seek definitive conclusion on these three issues.
The WTR feel that it is now critical to convene an academic Forum of medical practitioners and scientists who have been engaged in practice and research into these areas. We invite colleagues with relevant clinical and/or research interests to make contact with the WTR towards preparation of this Forum. We have provisionally scheduled this meeting for November 2012 at the Ardencote Manor Country Club in Claverdon.
The meeting concluded with thanks from the Chairman to the delegates who attended the Forum and particularly the patients who co-presented their case histories in person.
We were oversubscribed with 41 attendees and are grateful to Dr Ahmad and Ms Siddiqui for their assistance in organising this Forum and to Mr and Mrs Taylor for technical back up; additional thanks to the Staff of the Ardencote Country Club who accommodated extra numbers at short notice and provided a very tasty lunch.