Vaccine Research Trust Spring Newsletter
To read the newsletter, please click here to download the PDF.
Dr Louise Marry, a practising osteopath for 15 years, has set up a survey for thyroid patients. Dr Marry was 26 when she started to feel like death warmed up so to speak. From that day forward she had such a big struggle and battle with the doctors try and figure out what was wrong with her. No one wanted to listen to how she was feeling as her TSH results were coming back normal.
However, no one tested for the t3 and t4. Dr Marry had many years of suffering before she was diagnosed with Hashimotos disease. Louise has been her own advocate along this whole journey and today she is feeling great thanks to her own research and knowledge in to the thyroid and its many diseases.
Dr Marry wants to eventually publish a book with her findings and her knowledge which has come from both her own experience in having Hashimotos and the patients she has treated as a Doctor in Osteopathy. With this survey she wants to see how people around the world with the disease are feeling and what is being considered by doctors and/or specialists.
Dr Marry practises in Australia.
If you have hypothyroidism and want to complete the survey, please go to: www.surveymonkey.com/s/7B7RP7Q
Conference - B12, Thyroid and Your Patient - Linking nutrition, genetics & data
B12Deficiency.info are holding a conference for healthcare professionals and educators on Saturday 16th May 2015 at the Loughborough University, Room J104, Edward Herbert Building, Loughborough, Leicestershire LE11 3TU.
The speakers are:
- Sally Pacholok RN BSN - The effect of B12 deficiency on all body systems. Symptoms, causes, those at risk and common misdiagnoses.
- Lorraine Cleaver Expert Patient - Diagnosis and treatment of thyroid disease from a patient's perspective.
- Umahro Cadogan Adjunct Professor of Nutrition - Genetic polymorphisms and the role of B12 and folate in methylation.
- Dr. Malcolm Kendrick MbChB, MRCGP GP - Doctoring data - how data are manipulated to present information in wildly inaccurate ways.
If you, or anyone you know, is a healthcare practitioner, this would be a good conference to attend to learn more about B12, thyroid and methylation.
For more information go to: www.b12deficiency.info/conference
Thyroid UK's E-petition closed on 30th March with over 12,000 signatures.
As the e-petitions website is now offline until after the General Election in May, we will have to wait until then for the FINAL figure!
A HUGE THANK YOU to everyone who signed the petition and helped to promote it far and wide.
Stop water fluoridation, says public health expert
New research led by a public health expert at the University of Kent suggests water fluoridation in England is linked to higher rates of underactive thyroid.
Professor Stephen Peckham, of the University's Centre for Health Service Studies, says a switch to other approaches to protecting tooth health should be considered.
In research published in the Journal of Epidemiology & Community Health, Professor Peckham and the research team identified that water fluoridation above a certain level is linked to 30 per cent higher than expected rate of underactive thyroid (hypothyroidism) in England.
The researchers looked at the 2012 levels of fluoride in the drinking water supply, using data provided by the Drinking Water Inspectorate for individual postcodes. They looked at the national prevalence of underactive thyroid diagnosed by family doctors in England in 2012-13 and recorded in their national quality and incentive scheme (QOF) returns. Complete data were provided for 7935 general practices out of a total of 8020.
The researchers also carried out a secondary analysis, comparing two built up areas, one of which (West Midlands) was supplied with fluoridated drinking water, and the other of which (Greater Manchester) was not.
After taking account of influential factors, such as female sex and older age, both of which are linked to increased risk of hypothyroidism, they found an association between rates of the condition and levels of fluoride in the drinking water. In areas with fluoride levels above 0.7mg/l, they found higher than expected rates of hypothyroidism than in areas with levels below this dilution.
High rates of hypothyroidism were at least 30% more likely in practices located in areas with fluoride levels in excess of 0.3mg/l. And practices in the West Midlands were nearly twice as likely to report high rates of hypothyroidism as those in Greater Manchester.
In England, around 10% of the population (6 million) live in areas with a naturally or artificially fluoridated water supply of 1mg fluoride per litre of drinking water.
Professor Peckham said that research was 'observational', so no definitive conclusions should be drawn about cause and effect. He also emphasised that the researchers were not able to take account of other sources of fluoride, often found in dental products and food and drink.
But he pointed out that the findings echo those of previous research and that while they were only able to look at diagnosed hypothyroidism, there might also be other cases of impaired thyroid function that have not yet been diagnosed - and treated.
Professor Peckham concluded that consideration needs to be given to reducing fluoride exposure. Public dental health interventions should 'stop those reliant on ingested fluoride and switch to topical fluoride-based and non-fluoride-based interventions', he said.
The research is published in the latest issue of the Journal of Epidemiology & Community Health, which is the official journal of the Society of Social Medicine.
Lyn Mynott: My view is that whether the fluoride comes from other sources, such as dental products and food and drink, or not there is obviously a big problem here and I hope that Public Health England will sit up and take notice.
Change in DHEA product
Thyroid UK has been informed that there has been a change in the processing of a DHEA product.
Natrol (Vitasunn) and Biovea (Eurovital) DHEA are apparently the same brand and the tablets that have been received are very different to previously although the bottle and ingredients are the same.
The new tablets are a different shape, very powdery and a different colour. Vitasunn have stated that these new pills are not coated.
The Biovea customer tells us that she feels very different on these tablets and this could be because they were absorbed differently.
If anyone is taking these tablets, you need to be aware of this.
More information about DHEA in general can be found here:
Scottish Thyroid Petition Update
Scottish Parliament Petition - PE01463
Effective Thyroid and Adrenal Test, Diagnosis and Treatment
Lorraine Cleaver, Scottish Parliament Petitioner, wrote again to the Scottish Parliament on 19th November. In her letter she quotes the Royal College of Physicians in their response to her "Ask For Evidence" request:
"The RCP's guidance is based on the opinion of an expert panel which was temporarily formed for this purpose. The evidence they used to form their individual opinions has not been collated and therefore the RCP cannot provide an evidence list."
You can see her letter here:
On 25 November 2014 there was a further meeting where the Committee agreed to invite the Scottish Intercollegiate Guidelines Network to consider developing a guideline and to consider a paper by the clerk at its next meeting. You can watch a video of this meeting for approximately two more weeks. The discussion about this petition starts at approximately 33 minutes:
Big Life Fix
Studio Lambert – an award-winning TV production company led by Stephen Lambert, creator of Secret Millionaire, have approached us about an exciting and innovative new project they are working on called Big Life Fix with a major broadcaster.
In the programme, their team of expert engineers and designers will create bespoke inventions to transform peoples' lives for the better.
They want to reach out to the members, supporters and staff at Thyroid UK to offer them the opportunity to get involved. They would like to speak to people who think they could benefit from the help of their expert team, or even people who would like to nominate a loved one.
At this stage we are looking to do some non-broadcast filming, with a view to producing a full series in the near future.
If anybody is interested in being considered for the programme, or if they would like some more information, they can get in touch with the production team on:
firstname.lastname@example.org or give the friendly team a call on 020 3040 6809.
Click the image below to download a larger version in PDF format.
Hypothyroid Twins' New Book
[Coralie Phillips BSc (Hons), MSc and Donna Roach BSc (Hons), MSc - Identical twin authors of the factual book Hypothyroidism in Childhood and Adulthood, the novel Three Times the Trouble and the factual illustrated children's book The Twins' Tale, have written another book.
The book, entitled Duplicate Dreams, is about twins and multiples with identical interests and or careers in common.
They have also been interviewed for an article, which appeared in the Wales on Sunday newspaper on 16th November 2014. The online version of the article can be found at www.walesonline.co.uk/news/local-news/look-same-eat-same-same-8115073
For more information go to www.thyroidbooks.co.uk
The Vacine Research Trust (founded by the late Dr Gordon Skinner), needs to raise funds to enable the publication of all the data collected over the years by Dr Skinner's clinic.
Future health of >300,000 in the UK alone at risk
if vital thyroid studies are not published - PLEASE HELP
Hundreds of thousands of people in the UK have ‘normal’ blood tests for thyroid chemistry but clinical signs and symptoms of hypothyroidism. In the UK, Europe and USA doctors are reluctant to diagnose and treat on the basis of clinical diagnosis in patients with normal blood tests resulting in untold suffering in this group of patients. They are left to suffer with wide ranging problems including lethargy, slowing down of all functions, muscle and joint complications, digestive problems, infertility, cognitive and mental difficulties often being labelled with depression, and related illnesses such as ME, CFS and fibromyalgia. The tragic consequences include loss of livelihoods, homes, families and friends.
The medical profession continues to fail them and there is urgent need for research in this area to help understand the wider implication of clinical signs and symptoms as well as blood tests on correct diagnosis and treatment of hypothyroidism.
Dr Gordon Skinner was one of the very few doctors who argued that blood tests should not be pivotal in the diagnosis and treatment of hypothyroidism in this particular group of patients and treated patients in this category with encouraging results. It is interesting that Dr Skinner was not doing anything new nor prescribing new medication for the treatment of hypothyroidism; patients were diagnosed and treated for this disease based on clinical signs and symptoms and medical examination before blood tests were established.
In 2000 Dr Skinner published a study of 139 patients from his clinic in which he reported that clinically hypothyroid but biochemically euthyroid patients had favourable clinical response to thyroid replacement. Dr Skinner saw thousands of patients since then and his clinical work has accumulated fundamental information on the relationship between clinical signs and symptoms and blood tests before and after treatment in this group of patients. The information amassed by Dr Skinner’s clinic is unique because very few doctors treat patients who are clinically hypothyroid but biochemically euthyroid and thus there is no other source of such detailed data.
It is crucial to collate and analyse this data and publish the findings in scientific journals to ensure this valuable information is presented to the medical world towards improving the care of these patients. This work is now being supported by the Vaccine Research Trust and we are embarking on a major fundraising drive to maintain this vital research which could prevent unimaginable suffering in people who say they are just surviving with no quality of life.
We need £65,000 per year to support this research over the next two years and ask all of you out there to help us raise this by donating, organising fundraising events, and asking anyone you know to fund us. Any amount of donation will be most appreciated.
WITHOUT YOUR HELP THIS CHANCE TO MAKE A REAL CONTRIBUTION TO KNOWLEDGE IN THIS AREA OF MEDICINE WILL BE LOST. PLEASE, PLEASE HELP US.
Afshan Ahmad PhD
Director of Research and Development, Vaccine Research Trust
Please donate on: https://www.justgiving.com/vaccine-research-trust
If you are a UK taxpayer don't forget to ask for ‘Gift-Aid’ as the government will increase your donation by 25%
One year since Dr Gordon Skinner’s last IOP
Gordon R B Skinner MD (Hons) DSc, FRCPath FRCOG
22 Alcester Road
Tel/Fax 0121 449 8895
23rd September 2014
On Tuesday 7th October 2014 it will be exactly one year since Dr Gordon Skinner’s last IOP at the General Medical Council, St James’ Buildings, 79 Oxford Street, Manchester, M1 6FQ. Sadly, one year on, nothing has changed for the patients who continue to be ill and their needs ignored by the medical establishment.
Perhaps the GMC is not the ultimate vehicle for change but they cannot forget that they owe an explanation to Dr Gordon Skinner’s patients - and more widely to this particular group of people who are clinically hypothyroid but biochemically euthyroid - as to why they continued to ignore thousands of letters which supported the success of Dr Skinner’s diagnosis and treatment.
I would like to urge you all to email and/or write to the people listed below at the GMC and the Department of Health to reach them on the 7th October 2014 to remind them that they have been very irresponsible in being influenced by the current dogma regarding the way that hypothyroidism is diagnosed and treated and that if they claim to protect patients and act in the patients’ best interest they must address this issue.
It would be a reminder to the GMC that they cannot renege on their duty by closing the doors and hoping we will all go away. They must take some responsibility for having brought these cases against Dr Skinner and acting under the influence of those who promote this current dogma even though such dogma has failed to take into account the individual needs of patients who are clinically hypothyroid but biochemically euthyroid. One has to ask, was the GMC manipulated by some members of the medical profession in this instance resulting in a failure to protect the interests of certain hypothyroid patients?
It is also very important that everyone who writes asks for acknowledgement of receipt of their letter.
Afshan Ahmad PhD
Names and addresses to write to:
Mr Peter Swain, Assistant Director of Investigation, General Medical Council, Medical Practitioners Tribunal Service, Seventh Floor, St James’s Buildings, 79 Oxford Street, Manchester, M1 6FQ
Professor Sir Peter Rubin, Chair of General Medical Council, Seventh Floor, St James’s Buildings, 79 Oxford Street, Manchester, M1 6FQ
Email: email@example.com. Email to be marked in subject box as: FAO: Professor Sir Peter Rubin, Chair of GMC.
His Honour David Pearl, Medical Practitioners Tribunal Service, General Medical Council, Seventh Floor, St James’s Buildings, 79 Oxford Street, Manchester, M1 6FQ
Professor Dame Sally Davies, Chief Medical Officer, Department of Health, Richmond House, 79 Whitehall, London, SW1A 2NS
The Editor of the Sunday Telegraph
**and copied to Dr Afshan Ahmad
Thyroid Federation International - Statement
Thyroid hormone substitution: T4/T3 combination treatment and animal thyroid extracts
The standard treatment for hypothyroidism is levothyroxine (T4). In the majority of people with hypothyroidism levothyroxine reverses their symptoms. Levothyroxine has a long track record of safety and treatment can be monitored reliably by blood tests. Because of the long duration of action, levothyroxine can be taken once daily. Levothyroxine is a "pro-hormone" and is converted in the body to T3, the really active thyroid hormone, which tissues and cells respond to.
Thyroid Federation International is concerned that many people with thyroid disease feel that their symptoms are not well controlled. The information available in the media on this topic may be confusing for patients. It includes suggestions of using large doses of levothyroxine, T3, combinations of levothyroxine and T3 or desiccated pig thyroid.
Thyroid Federation International believes that patients should be empowered by being well informed about their condition and the various treatment options and should take an active part in decision making about their treatment. Patients must also be well informed about potential adverse effects of treatment options.
People who remain symptomatic on thyroid hormone replacement are an important and medically challenging group who deserve to be taken seriously and managed holistically. Within this group there are individuals with other medical diagnoses or who have never achieved optimal thyroid hormone replacement with levothyroxine; alternative means of thyroid hormone replacement may provide temporary subjective improvement in symptoms, at the expense of long-term harm to their health and may delay the diagnoses of other conditions. Many symptomatic patients who have tried different thyroid hormone replacements fail to improve, which is indicative of the fact that this approach is not a panacea for people who are in that unfortunate category. For some people a trial of combination of T4 and T3 may prove to be beneficial. Thyroid Federation International endorses the European Thyroid Association guidelines on this topic (www.karger.com/Article/Pdf/339444) which provides a sound, responsible, safe and holistic framework (see Appendix 1).
Some people choose to take high doses of thyroid hormones or desiccated pig thyroid. This choice should be respected - in such cases we believe that they should have access to medical supervision and monitoring for potential development of adverse effects.
We believe that engagement between patients, scientists, doctors, patient and medical professional organizations with an open mind is the best way of improving patient outcomes and their quality of life. Our knowledge and understanding of thyroid hormone replacement in people with hypothyroidism needs to be broadened. Thyroid Federation International believes that more research is required using robust scientific methodology.
May 25th, 2014
President of Thyroid Federation International (www.thyroid-fed.org)
Dr Petros Perros, Newcastle
Member of the TFI Medical Advisory Board
Click here to download the full document (which includes the appendix and reference).
An important new paper published in Clinical Endocrinology Journal!
Thyroid UK advisors Rudolf Hoermann, John E.M. Midgley and Johannes W. Dietrich have just had a new research paper published in the Clinical Endocrinology Journal.
Dr John Midgley tells us:
"What it proves is that there is no such thing as a TSH range that is suitable for everyone, and that the range is different according to the effect of independent influences such as age, body mass, size of working thyroid volume and whether someone is on T4 or not.
The T4 therapy range is very much lower than the "normal" untreated and sits around the 1 or lower mark. The 3-4 upper level that works for the normal person is not satisfactory and can indicate undertreatment.
Also we're finding that people with no thyroid working at all cannot easily regain normal FT3 with T4 alone and that TSH suppression often has to happen, and in some people no amount of T4 will regain normal FT3 levels. Recent reviews by the gurus now admit that some people cannot handle T4 only and regain health. Just thought you'd like to know that the avalanche is beginning."
Homeostatic equilibria between free thyroid hormones and pituitary thyrotropin are modulated by various influences including age, body mass index and treatment
Rudolf Hoermann*, John E.M. Midgley†, Adrienne Giacobino*, Walter A. Eckl*, Hans G€unther Wahl‡,
Johannes W. Dietrich§ and Rolf Larisch
Article first published online: 7 JUL 2014
We examined the interrelationships of pituitary thyrotropin (TSH) with circulating thyroid hormones to determine whether they were expressed either invariably or conditionally and distinctively related to influences such as levothyroxine (L-T4) treatment.
Design and methods
This prospective study employing 1912 consecutive patients analyses the interacting equilibria of TSH and free triiodothyronine (FT3) and free thyroxine (FT4) in the circulation.
The complex interrelations between FT3, FT4 and TSH were modulated by age, body mass, thyroid volume, antibody status and L-T4 treatment. By group comparison and confirmation by more individual TSH-related regression, FT3 levels were significantly lower in L-T4-treated vs untreated nonhypothyroid autoimmune thyroiditis (median 4·6 vs 4·9 pm, P < 0·001), despite lower TSH (1·49 vs 2·93 mU/l, P < 0·001) and higher FT4 levels (16·8 vs 13·8 pm, P < 0·001) in the treated group. Compared with disease-free controls, the FT3-TSH relationship was significantly displaced in treated patients with carcinoma, with median TSH of 0·21 vs 1·63 (P < 0·001) at a comparable FT3 of 5·0 pm in the groups. Disparities were reflected by calculated deiodinase activity and remained significant even after accounting for confounding influences in a multivariable model.
TSH, FT4 and FT3 each have their individual, but also interlocking roles to play in defining the overall patterns of thyroidal expression, regulation and metabolic activity. Equilibria typical of the healthy state are not invariant, but profoundly altered, for example, by L-T4 treatment. Consequently, this suggests the revisitation of strategies for treatment optimization.
To view the above summary online, go to: onlinelibrary.wiley.com/doi/10.1111/cen.12527/abstract
The full paper is available for 'Patient Access', which means that:
Patients and/or caregivers may access this content for use in relation to their own personal healthcare or that of a family member only.
To download the full paper in PDF format, click here
Our Government e-petition
2014 - 2015
A Call to Action!
On 23rd April 2014, Thyroid UK re-submitted their Government
e-petition asking for research into T3 and/or natural desiccated thyroid treatment to be funded.
You can view and sign the petition by going to http://epetitions.direct.gov.uk/petitions/64191
So, let's all...
Sign it, share it, Tweet it, FB it, add it to your email signature!
'Fund research into T3 and/or natural desiccated thyroid treatment for hypothyroidism'