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Recent News

31/07/2015

Living with Medicines Survey

pharmacistA 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.
The survey will run for three months and you should only take the survey if:

  • You live in the UK
  • You use regular prescription medicines (the ones you get from your doctor)
  • You are 18 years or over

To take the survey please go to:
https://msp.az1.qualtrics.com/SE/?SID=SV_3vHnVholp9dYT3L

 

30/07/2015

Are You Tired of Being Tired? Join the Abundant Energy Summit

Abundant Energy SummitA free online health education summit on overcoming chronic fatigue is taking place on 24th-30th August 2015.  

The summit consists of 30 world-leading experts covering all aspects including mitochondrial function, thyroid, gut, adrenals, immunity, psychology and energy medicine. Experts including people like Thyroid UK Medical Adviser, Dr Sarah Myhill; New York Times best seller on Thyroid Hashimotos; Dr Izabella Wentz; Dr Jeff Bland; Dr Dietrich Klinghardt and more.

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/

 

 

30/07/2015

AllTrials Campaign Launches in US

AllTrials logoYou 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/

To join the campaign, please sign the AllTrials petition, and be sure to get involved with the campaign as much as you can.

If you would like to sign the petition on behalf of an organisation, email your organisation’s logo and a short statement to jcockerill@senseaboutscience.org.

 

17/07/2015

TABLET (Thyroid AntiBodies and LEvoThyroxine) trial
Randomised Controlled Trial of the Efficacy and Mechanism of Levothyroxine Treatment
on Pregnancy and Neonatal Outcomes in Women with Thyroid Antibodies (TABLET)

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 tablet-trial@trials.bham.ac.uk

For more information go to: www.birmingham.ac.uk/TABLET

 

17/07/2015

Yellow Card Scheme App

yellow card scheme logoA 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.

For more information see the MHRA Press Release:
www.gov.uk/government/news/digital-evolution-for-ground-breaking-yellow-card-scheme

13/07/2015

Hypothyroid Patient Experiences Survey

Closing date 9th August 2015

time for feedback

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

Let’s make this survey a successful one!

 

19/06/2015

TV Programme - Mystery Illness / Medical Condition

tigress productions logo

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 medical@tigressproductions.co.uk for more information.

 

18/06/2015

Please Vote for The Vaccine Research Trust

Vaccine Research Trust logo

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.

Dear Friend,
Good news!

The Vaccine Research Trust has been selected by our local Sainsbury's store in Moseley (158 Alcester Road, Moseley, Birmingham B13 8HS) as a possible charity for them to support with fundraising for one year.

However, this is dependent on our obtaining more votes than other competing charities in the area.

It would be really helpful if you could support us by giving us your vote by either going into the store and casting your vote or voting online at https://www.sainsburyslocalcharity.co.uk

You will need to enter the store post code which is as above – B13 8HS – and select Vaccine Research Trust. Voting for Vaccine Research Trust is just a few clicks away and you can use any device for example your computer, iPad or Phone.

Please send this email to friends and family and anyone you know so we can get as many votes as possible for this important opportunity.

Kind regards,


Carol Wright
Administrator
Vaccine Research Trust
22 Alcester Road
Moseley
Birmingham
B13 8BE
United Kingdom

TEL/Fax: 01214492429
MOBILE: 07795386702

email: info@vrt.org.uk
website: www.vaccineresearchtrust.com
DONATE: www.justgiving.com/vaccine-research-trust

 

10/06/2015

Diagnosis and Treatment of Chronic Fatigue Syndrome
Seminar with Dr Sarah Myhill

Myhill talk

 

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

 

 

8/06/2015

Health eHeart logo

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.
To be eligible to participate in the study you need to:

  • complete two surveys every year
  • be over the age of 18
  • have access to internet
  • have an email address
  • be an English-speaker

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

 

12/5/2015

Discounted Tickets for
B12 Deficiency and Thyroid Disease Conference

B12 Deficiency logoTickets 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

 

 

28/4/2015

Healthwatch Trafford ME/CFS Survey

healthwatch trafford logoHealthwatch 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:
www.surveymonkey.com/s/me-cfs-survey

For those of you who want to print it off and send by post a pdf can be found HERE
and a version in Word can be found HERE

 

27/4/2015

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?
story_fbid=10155438554070494&id=75960805493&substory_index=0

 

 

13/4/2015

Vaccine Research Trust Spring Newsletter

To read the newsletter, please click here to download the PDF.

Vaccine Research Trust Spring 2015 Newsletter

 

2/4/2015

Thyroid Survey

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

 

1/04/2015

Conference - B12, Thyroid and Your Patient - Linking nutrition, genetics & data

B12 Deficiency logo

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


31/03/2015

E-Petition Closed

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.

e-petition

 

24/02/2015

Stop water fluoridation, says public health expert

water splashing into a glassNew 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.

 

21/1/2015

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:
www.nlm.nih.gov/medlineplus/druginfo/natural/331.html

 

2/12/2014

Scottish Thyroid Petition Update

Scottish Parliament logoScottish 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:

www.scottish.parliament.uk/S4_PublicPetitionsCommittee/
General%20Documents/PE1463_AAA_Petitioner_19.11.14.pdf

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:

www.scottishparliament.tv/category.aspx?id=25

24/11/2014

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:

biglifefix@studiolambert.com or give the friendly team a call on 020 3040 6809.

Click the image below to download a larger version in PDF format.

Big Life Fix

 

24/11/2014

Hypothyroid Twins' New Book

Coralie & Donna[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

 

22/10/2014

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.
Thank you.

Afshan Ahmad PhD
Director of Research and Development, Vaccine Research Trust
Email: info@vrt.org.uk
Website: www.vaccineresearchtrust.com

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%

 

24/09/2014

One year since Dr Gordon Skinner’s last IOP

 

Dr Gordon SkinnerGordon R B Skinner MD (Hons) DSc, FRCPath FRCOG
22 Alcester Road
Moseley
Birmingham
B13 8BE
Tel/Fax 0121 449 8895

23rd September 2014

 

Dear Everyone,

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.

Kind regards,

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
Email: PSwain@gmc-uk.org

Professor Sir Peter Rubin, Chair of General Medical Council, Seventh Floor, St James’s Buildings, 79 Oxford Street, Manchester, M1 6FQ
Email: customerservicemanager@gmc-uk.org. 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
Email: David.Pearl.cs@judiciary.gsi.gov.uk

 

Professor Dame Sally Davies, Chief Medical Officer, Department of Health, Richmond House, 79 Whitehall, London, SW1A 2NS
Email: sally.davies@dh.gsi.gov.uk

 
The Editor of the Sunday Telegraph
Email: stletters@telegraph.co.uk

**and copied to Dr Afshan Ahmad
Email: info@vrt.org.uk

19/09/2014

Thyroid Federation International - Statement
Thyroid hormone substitution: T4/T3 combination treatment and animal thyroid extracts

Thyroid Federation International logoThe 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
Ashok Bhaseen
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).

 

 

8/07/2014

An important new paper published in Clinical Endocrinology Journal!

Clinical Endocrinology Journal coverThyroid 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."

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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

Summary
Objective

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.

Results
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.

Conclusions
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.

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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

 

 

25/04/2014

Our Government e-petition
2014 - 2015

A Call to Action!

 

fingers holding penOn 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!

HM Government logo

'Fund research into T3 and/or natural desiccated thyroid treatment for hypothyroidism'

http://epetitions.direct.gov.uk/petitions/64191

 


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