|Welcome to our website. It's always a work in progress and your feedback is welcome|
Patients’ Experiences Survey (Clinical Trials)
The National Institute of Health Research, the European Patients‘ Academy on Therapeutic Innovation (EUPATI-UK) and the International Society for Pharmaceutical Engineering (ISPE) are conducting a survey about participants’ experiences in clinical trials. If you have participated in a clinical trial your opinions are very important and will help improve clinical trial participants’ experiences.
Your responses are confidential. The questionnaire may be completed on your behalf by your carer/representative.
Taking part in this survey is voluntary and any information you submit will be anonymous. Published reports will NOT contain any information that identifies an individual and results will be anonymous
Here is the survey link https://ispe.co1.qualtrics.com/SE/?SID=SV_e8TmdgJy5kXXJNH
If you want to know more about the work of the partners institutions supporting this survey, ISPE, NIHR, NHS and EUPATI follow these links:-
Living with Medicines Survey
A revised version of the Living with Medicines Questionnaire©, which asks people about what it is like to use regular long-term medicines is now being conducted at Medway School of Pharmacy, in Kent by a PhD student.
It is thought that the findings will support the Medicines Optimisation agenda developed by the Royal Pharmaceutical Society, whose objective is to enhance patients’ experiences of care (and medicine use).
If you are taking prescribed medicines regularly, please think about completing the survey. The survey is anonymous.
To take the survey please go to:
Are You Tired of Being Tired? Join the Abundant Energy Summit
Register for the free summit and receive four free gifts which includes a video entitled, “Is Gluten Stealing Your Energy?” and an e-book, “Gluten Sensitivity, Chronic Fatigue and Autoimmune Disease” both by Tom O'Bryan, DC.
The summits are free during the period 24th – 30th August and there will be an option later to buy a digital download of all 30 hours.
For more information and to register go to: https://fn235.isrefer.com/go/summitreg/lynmynott/
AllTrials Campaign Launches in US
You may have heard about the AllTrials campaign in the UK, one of the campaigns run by Sense About Science UK, which is calling for all health research trials to be registered and reported.
The campaign has been running in Europe for a while but now, excitingly, it has now been launched in the US too.
50 patient support groups, medical societies, universities and consumer groups came together to launch the AllTrials campaign in the US and to say:
“We are calling on everyone in our sector to join us in supporting the AllTrials campaign. Hundreds of thousands of patients have taken part in clinical trials which have never reported results. For every day that passes, more information is at risk of being lost forever. We have to make every clinical trial count. Join us today.”
Campaign co-founder Dr Ben Goldacre explains: “Patients want the treatments that are best for them. This needs good quality evidence on what works. Unfortunately, we now know that around half of all clinical trials, on the treatments we use today, are withheld from doctors, researchers, and patients. This makes a mockery of our efforts to make truly informed decisions. It also puts the reputation of the entire medical profession—and pharma—on the line.”
“We provided our bodies, our tissue samples, our data,” says patient activist AnnaMarie Ciccarella. “I’ve heard the same sentiment expressed many times from patients in clinical trials, ‘This may not help me, but it may help another person.’ It’s time to honor that sentiment.”
“Imagine there was an election,” says Steven Woloshin MD, a professor at the Dartmouth Institute for health policy and clinical practice. “Would you trust the results if only half of the votes were reported? Imagine if the winner of the election was the one who decided which half of the voting was reported? That would be crazy, but that’s what the situation is when trials are not reported.”
Since 2013, AllTrials has won support from almost 600 patient groups, professional societies, and academic institutions, and 85 thousand members of the public. The global campaign now represents 500 million patients, and it has helped change the law in Europe so that, starting in 2016, all drug clinical trials will be publicly registered and their results reported.
Last week AllTrials announced that pharmaceutical investors representing more than $3.8 trillion in assets are supporting the campaign.
For more information about the US launch go to: http://www.alltrials.net/news/usa-launch/
For more information about Sense About Science USA go to: http://www.senseaboutscienceusa.org/alltrials/
If you would like to sign the petition on behalf of an organisation, email your organisation’s logo and a short statement to email@example.com.
TABLET (Thyroid AntiBodies and LEvoThyroxine) trial
Thyroid antibodies are associated with miscarriage and pre-term births. TABLET is a large double blind placebo controlled trial to be run across approximately 20 UK sites.
This trial is testing the hypothesis that the taking of a small (50µg) dose of thyroxine by euthyroid women aged between 16 and 40, with thyroidperoxidase (TPO) antibodies, before and during pregnancy, will increase their chance of delivery beyond 34 weeks of their pregnancy.
Recruitment will be taking place in miscarriage clinics and infertility clinics in hospitals in England and Scotland.
They will be asking women who have miscarried, and plan to be actively trying to conceive within the next year to have a screening blood test for thyroid antibodies. Women who are being treated for infertility will also be asked to be screened. Women who have positive TPO antibodies with normal thyroid test results will be asked to consent to be randomised into the trial.
If you, or anyone you know, would like to take part in the trial, contact the TABLET team on 0121 4159111 or email firstname.lastname@example.org
For more information go to: www.birmingham.ac.uk/TABLET
Yellow Card Scheme App
A Yellow Card smartphone app has been launched for people to report problems with medicines.
The Yellow Card Scheme monitors the safety of UK medicines and act as an early warning system to identify potential side-effects and adverse reactions of both prescription and over the counter drugs.
Hypothyroid Patient Experiences Survey
Closing date 9th August 2015
Thyroid UK has been working on an important new project over the past couple of months and we are now ready to let everyone know about it.
We were invited by the Scottish Government to work with them on a listening exercise to learn more about patients' experiences in respect of the diagnosis and treatment of hypothyroidism.
The Scottish Government were asked to look into how patients were diagnosed and treated by the Scottish Parliament Petition Committee under the petition lodged by three Scottish petitioners.
Two of the petitioners stood down leaving Lorraine Cleaver as the only petitioner still involved - PE01463: Effective thyroid and adrenal testing, diagnosis and treatment.
The listening exercise is taking place via a survey that will be placed onto the Thyroid UK website, our HealthUnlocked forum and our Facebook and Twitter pages.
It will also be sent to all Health Boards in Scotland and Wales, the Northern Ireland Health and Social Care Trusts and all Clinical Commissioning Groups in England via their twitter pages so that more patients can access the link.
It is well known that 5-10% of patients (possibly more) do not recover fully on the standard medication given for hypothyroidism and we hope that the results of this survey will give some clues as to why this is and subsequently lead to a change in the way thyroid disease is diagnosed and treated in the UK.
We are asking questions such as how long patients had symptoms for before being diagnosed; how many times did they visit their GP before diagnosis; how much are patients spending on private consultations and were patients refused certain thyroid hormone medications even though they made them better.
The survey is open to anyone who has hypothyroid symptoms residing in the UK (excluding the Channel Islands due to not using the NHS system) and is completely anonymous.
The survey takes approximately 15 - 20 minutes to complete and participation will contribute to improving care and support for people with thyroid disease across the whole of the UK.
Thyroid UK is grateful to Wicked Minds Healthcare Consultancy and Healthbox360 for their strategic advice on the content and flow of this survey.
Please participate in this survey and help us spread the word by placing the link on any thyroid forums, facebook and twitter pages you go to.
You can also help by downloading the Poster to place in your doctor’s surgery or endocrinologists clinic.
You can download the poster here
For more information about this petition please go to: www.scottish.parliament.uk/GettingInvolved/Petitions/PE01463
To participate in the survey please go to: www.surveymonkey.com/r/JBD52TV
TV Programme - Mystery Illness / Medical Condition
Tigress Productions (www.tigressproductions.co.uk) are producing a new eight part series for a terrestrial broadcaster and are looking for people to take part.
They are looking for people who have a mystery illness or condition that's proving impossible to diagnose.
If we could get thyroid disease mentioned in this programme it may well move the campaign for better diagnosis and treatment forward!
Do you have a mystery illness or medical condition that's proving impossible to diagnose?
Have you tried a long series of medical treatments and finally been cured?
Tigress Productions would like to speak to people with medical mystery experiences for a new TV documentary series.
Please call 0117 933 5654 / 0117 933 5609 or email email@example.com for more information.
Please Vote for The Vaccine Research Trust
The Vaccine Research Trust (founded by the late Dr Gordon R B Skinner MD, DSc, FRCPATH, FRCOG), is raising funds to carry out thyroid research, which will help many of us to get properly diagnosed and treated.
Diagnosis and Treatment of Chronic Fatigue Syndrome
As part of Biocare's Summer 2015 Advanced Education programme, Dr Myhill is to deliver a seminar detailing her views on the causes of CFS, the assessment techniques she uses, and her unique 'sustainable medicine' approach to treatment.
For more information, click here to download the PDF flyer
The Health eHeart Study
The Health eHeart Study is run by a team of physicians and researchers who want to investigate questions about heart health such as “Can heart disease be predicted based on measurements, behaviour patterns (sleep, diet, activity) and family and medical history?” and “Can we determine what causes episodes of atrial fibrillation?” amongst many others.
They want to see if new and more accurate ways can be developed to predict heart disease, understand the causes of heart disease (including heart attack, stroke, heart failure, atrial fibrillation, and diabetes) and find new ways to prevent it. They also want to create personalized tools you can use yourself to forecast when you might develop heart disease or, if you have it already, when you might be getting worse.
They need help to do this and they have therefore devised an innovative study which will enable them to answer these questions.
Other things you may be asked to do is to collect data at home such as weight, blood pressure etc., use technology (they may send you a sensor to wear or ask you to add a gadget to your smartphone), download apps and especially inform them if you go into hospital. The study will be a long-term one, possibly years so you need to be committed.
The first survey is expected to take 30-60 minutes but you don’t have to do it all at once. You can pop out and pop in again.
We think this survey is very important and urge you to participate, which you can do by clicking here: www.health-eheartstudy.org
Discounted Tickets for
Tickets for the B12deficiency.info conference entitled, "B12 Deficiency & Thyroid Disease - Linking Nutrition, Genetics & Data" have now been discounted!
With the 25% Discount Code, tickets are now available for £44.
The code for the 25% discount is btwelve – don't forget to enter it on checkout.
There are some great speakers especially Sally Pacholok RN BSN, author of the book, "Could it Be 12?" and Lorraine Cleaver, Scottish Parliament Petitioner.
Dr Malcolm Kendrick will be speaking about his excellent book, "Doctoring Data - how data are manipulated to present information in wildly inaccurate ways."
The conference is being held at Loughborough University on Saturday 16th May. It will be a great day out and you will be mixing with patients and professionals alike.
For more information and to book go to: www.b12deficiency.info/conference
Healthwatch Trafford ME/CFS Survey
Healthwatch Trafford have launched a major survey of ME/CFS services.
It's a 45 question survey asking patients to give brief illness histories and then answer questions about how well they have been dealt with by their local health services - particularly at GP and hospital levels.
The survey can be done online or printed off and returned by post. Although the survey is primarily for people living in the Trafford area of Greater Manchester any questionnaires completed by people living outside the area may be shared with other Healthwatches. The project is supported by the Patients Association.
Thyroid UK suggests that everyone fills it in so that word can spread about how patients with ME/CFS are dealt with by the medical profession.
It can be filled in online here:
Erin Brockovich calls for an end to fluoridation
Erin Brockovich posted a message on her Facebook account recently, calling for an end to fluoridation, for hearings to hold public officials accountable, for organizations to rescind their endorsements, and for further research on removing accumulated fluoride from our bodies.
To read her message go to: https://www.facebook.com/permalink.php?
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.
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:
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.
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.
More information about DHEA in general can be found here:
Scottish Thyroid Petition Update
Scottish Parliament Petition - PE01463
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.
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.
One year since Dr Gordon Skinner’s last IOP
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
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
**and copied to Dr Afshan Ahmad
Thyroid Federation International - Statement
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).
May 25th, 2014
Dr Petros Perros, Newcastle
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:
Homeostatic equilibria between free thyroid hormones and pituitary thyrotropin are modulated by various influences including age, body mass index and treatment
Article first published online: 7 JUL 2014
Design and methods
To view the above summary online, go to: onlinelibrary.wiley.com/doi/10.1111/cen.12527/abstract
Our Government e-petition
| July 2013 | Aug 2013 | Sept 2013 | Oct 2013 | Nov 2013 | Dec 2013 |