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Recent News

19/07/2017

Announcing the launch of an innovative patient-centred portal – Natural Health WorldwideNatural health Worldwide logo

Natural Health Worldwide (NHW) is a new website that connects patients from all round the World with NHW health practitioners.

Craig Robinson's blog entry about this exciting new portal says:

The hope is that NHW will contribute to the future of healthcare being more patient-centred, with access to health practitioners, lab tests, and the necessary knowledge, all putting patients back in control and giving them the choices that they both need and deserve.

Click here to download the full blog text (PDF)

 

12/07/2017

The NICE guideline for CFS/ME is not fit for purpose and needs a complete revision

You may be aware of the current situation with NICE concerning the treatment of ME sufferers using graded exercise (GET) and CBT. Many ME sufferers are made worse by GET and yet this 'treatment' is still being used by NHS specialists. It's a crazy situation, where an illness which has post exertional malaise as a major symptom is being treated by exercise!

Just like thyroid patients ME sufferers aren't being listened to! Please help them by signing the change.org petition here:
https://www.change.org/p/petition-the-nice-guideline-for-cfs-me-is-unfit-for-purpose-and-needs-a-complete-revision

 

24/05/2017

Survey for women with children

Milly Divall is a final year undergraduate at the University of Warwick studying Biomedical Science. For her dissertation she is running a survey regarding the potential impact that a thyroid condition can have on mothers during pregnancy. The data collected from this survey is completely anonymous and cannot be traced back to the individual respondent. 

The survey is aimed at women who have one or multiple children. 

To take the survey go to: 

https://warwick.co1.qualtrics.com/jfe/form/SV_6KcNCBS8Dp9M8YZ

 

04/04/2017

The LDN 2017 Conference

The LDN 2017 Conference being held on 22nd to 24th September at the Sheraton Airport Hotel, Portland, Oregon is also being steamed live.

This looks to be an amazing conference and with so many topics being discussed, there’s bound to be one that interests you:

Autism, Bipolar Disorder, Cancer, Celiac, Crohn's Disease, Type 1 Diabetes, Dissociative Symptoms, Fibromyalgia, Gluten Sensitivity, How to Speak to Doctors, Infertility, LDN and Children, LDN and Pets, Lupus, Lyme Disease and Testing, Mental Health Conditions, Multiple Sclerosis, Nutrition, Pain, Pharmacology, PTSD, Pots, Psoriasis, Restless Leg Syndrome, Sex and LDN Study, SIBO and Irritable Bowel Conditions, Thyroid Conditions, Trial Data, Ulcerative Colitis, Vitamin D and Inflammation - The Case Studies will cover many conditions.

For more information about the conference live streaming go to:  www.ldn2017.com

 

17/03/2017

Healthwatch Trafford have issued the following Press Release today:

More than half of people in the UK with ME/CFS said they wouldn’t trust their GP to give them information on their condition.

A revealing new report released today by Healthwatch Trafford shows the findings of a survey of people with Myalgic Encephalomyelitis(ME), also known as Chronic Fatigue Syndrome(CFS), to find out what their experience of the NHS was like.

The report ‘Tired of explaining : Experiences of services for ME/CFS patients in Trafford and Greater Manchester’ highlights the issues that people with the condition are finding and how that impacts upon them.

Key findings included:

    •More than a third of people in the UK diagnosed with ME/CFS get no information from the NHS (and 40% that did receive some information said it wasn’t useful)

    •Less than 10% of respondents in Greater Manchester felt inpatient hospital facilities were suitable for them

    •More than half in Greater Manchester said they wouldn’t trust their GP to provide them with information about the condition

    •37.5% of people across the UK waited more than 2 years for a diagnosis, with a quarter in Greater Manchester waiting more than 5 years

    •91.9% of respondents in Greater Manchester are unable to work or study because of their condition

    •77% have had ME/CFS for 5 years or more, with 34.7% having had it for 15+

The survey had more than a thousand responses and attracted responses from people around the UK.

Many people with the condition observe they are experiencing poor treatment, often making their condition worse.

ME/CFS as a condition has a number of issues that make its effective treatment very difficult. Chief amongst these is the fact that it isn’t really understood, and so many medical professionals and professional bodies cannot agree on what it is, its cause and what to do about it. This has lead to huge variation in its treatment, with some medical professionals treating it purely as a psychological problem, meaning the physical aspects are not addressed and vice versa.

A core issue is that many feel their GPs knowledge of the condition and treatment options is not adequate and often their attitudes towards it have been a major problem, with levels of trust in their GP amongst those with ME/CFS being low.

Adam Webb, the report’s author and Communications and Information officer for Healthwatch Trafford, said:

“We created this survey after hearing reports of people with the condition receiving poor treatment and aimed it at our local area. We didn’t expect there to be such a large response to it, but the strength of feeling expressed by the respondents shows there is a real issue with their treatment across the whole of the UK.

Addressing the recommendations made in the report would go a long way to improve the lives and treatment of a large number of people who have felt misunderstood for so long.”

ME/CFS is thought to affects around 250,000 people in the UK and around 85% of respondents were women, largely reflecting the general incidence of the condition (four females to every one male )."

Andrew Latham, Chief Officer of Healthwatch Trafford said:

“This report highlights some of the very real issues that people with ME/CFS face on a daily basis, from initial diagnosis through to living with the condition for many years. The report shows that there are multiple issues to be addressed and that whilst our initial focus is on patients within Trafford, the high response rate to our survey shows that these are nationwide problems that cannot not be ignored.

Healthwatch Trafford is committed to making sure that the issues people have told us about get heard by the people with the power to act on the recommendations made, both locally and nationally. We will share this data with providers and commissioners in Trafford and urge our colleagues in local Healthwatch throughout Greater Manchester and the rest of England to do the same. We hope that this can have a positive impact on how patients with ME/CFS access services and the treatment that they receive.”

Adam added :

“We are extremely grateful for the assistance of Manchester Metropolitan University in analysing the survey results”

For more information contact:

Andrew Latham

Chief Officer

andrew@healthwatchtrafford.co.uk

or

Adam Webb

Communication and Information Officer

adam@healthwatchtrafford.co.uk

0300 999 0303

You can see the Summary Report here: http://healthwatchtrafford.co.uk/wp-content/uploads/2015/03/Tired-of-explaining-ME-CFS-Summary-Report-by-Healthwatch-Trafford.pdf

You can see the Full Report here: http://healthwatchtrafford.co.uk/wp-content/uploads/2015/03/Tired-of-explaining-ME-CFS-Report-by-Healthwatch-Trafford.pdf

 

17/02/2017

Thyroid UK is Now Working with Medichecks!

I am very pleased to let you know that Thyroid UK is now working with Medichecks who offer the full range of thyroid and related tests. Their range includes single thyroid hormones, comprehensive thyroid panels, thyroid antibodies, rT3 as well as related tests such as vitamin B12, selenium and other nutritional markers. 

To launch our partnership with Medichecks they are offering a 15% discount on all thyroid-health tests until 28th February so you need to be quick to get your discount!

For more information go to http://www.thyroiduk.org.uk/medichecks

17/01/2017

New Guidelines from the British Thyroid Association - Switching from Liothyronine (LT-3) to Levothyroxine (LT-4)? - 2016

You may be aware that in July 2015 PrescQIPP issued a Bulletin that consisted of a DROP-List (Drugs to Review for Optimised Prescribing) in regard to liothyronine (T3) which has caused havoc for those patients on this medication.  They updated this in July 2016 in line with the British Thyroid Association (BTA) Guidelines – (Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee. Clinical Endocrinology 2015;0:1-10. Available at: http://onlinelibrary.wiley.com/doi/10.1111/cen.12824/full )

PrescQIPP state that they are “an NHS funded not-for-profit organisation that supports quality, optimised prescribing for patients. We produce evidence-based resources and tools for primary care commissioners, and provide a platform to share innovation across the NHS.”

The DROP-List is an accumulation of medicines that commissioners considered as low priority, poor value for money or for which there were safer alternatives and is accessed by subscribers of PrescQIPP, namely Clinical Commissioning Groups.

PrescQIPP then published another Bulletin – “Switching liothyronine (L-T3) to levothyroxine (L-T4) in the management of primary hypothyroidism” along with a template letter meant for doctors.

Since the DROP-List that included liothyronine was first published in July 2015 Thyroid UK noticed that more and more patients were either being refused T3 or having their prescriptions stopped, even though they felt very well on T3.  Thyroid UK is organising a campaign about this to try to help thyroid patients.

In the meantime, the British Thyroid Association has just issued three documents about this:

Switching from Liothyronine (LT-3) to Levothyroxine (LT-4)? - 2016

•    Frequently Asked Questions for GP's

•    Frequently Asked Questions for patients

•    Information for Endocrinologists

In the FAQ’s for GP’s they state, “Whilst we appreciate the commercial imperative to cut prescription costs, like you, our first concern is that in all cases the clinical needs of the patient should come before financial considerations.”

They also state, “The decision to switch from L-T3 to L-T4 should be based on clinical considerations and should be reached in conjunction with the patient after a discussion of the risks and benefits. Patients established on L-T3 who continue to derive benefit from its use should continue on L-T3. However, patients with uncertain benefits should be considered for a switch to L-T4 and advice should be sought from an endocrinologist on how this can be safely done.”

This is most definitely not what many doctors are doing from what we are being told by patients contacting us and on our forum.

In the FAQ’s for Patients, under the question, “Do I have to switch from T3 to thyroxine” the BTA state, “If you are receiving T3 and are satisfied that you are deriving benefits from it then you do not have to stop it. You should let your GP know that you wish to continue taking T3. If the GP is not happy prescribing it they should seek the opinion of an endocrinologist.”

Again, from what we are being told, no offers to seek the opinion of an endocrinologist is being suggested.

In the “Information for Endocrinologists” document under the heading “Clinical approach to patients on L-T3” the BTA state, “For patients who are established on L-T3 and are considered to be stable, a change to L-T4 monotherapy should not be implemented without discussion with the patient. In such cases change of treatment may result in significant instability of thyroid status and potentially undesirable clinical outcomes, which may prove more costly than continuation with L-T3 therapy.”

Thyroid UK is very pleased to see that the BTA have published these documents and understand that for some patients T3 is required to make them feel well again.  Perhaps if their original guidelines had been more specific this sad state of affairs would not have happened. 

If you have had your prescription of T3 stopped recently due to the cost or the BTA guidelines, it might be a good idea to print these documents off, highlight the areas that are relevant to you and take them back to your GP or endocrinologist for discussion.  It might mean that your T3 is reinstated.

Do let us know how you get on if you do this.

To read the BTA documents go to: http://www.british-thyroid-association.org/current-bta-guidelines-

To read the PrescQIPP Bulletin 117 – The PrescQIPP DROP-List 2015) click here

To read the PrescQipp Bulletin 121 - Switching liothyronine (L-T3) to levothyroxine (L-T4) in the management of primary hypothyroidism click here

 

13/01/2017

Healthwatch Trafford Report on Fibromyalgia

Healthwatch Trafford regularly report findings on various topics.  Their latest report is about Fibromyalgia and is available to download from their website. 

The survey was designed to look at the experiences of people diagnosed with Fibromyalgia in accessing local services. There were only 17 respondents but they have compared the results to Greater Manchester and the UK, which is interesting.

It showed that 94% of the Trafford respondents felt that their quality of life had been impacted in some way and they generally felt more positive about their experience in Trafford than those from other parts of the UK.

It’s a very long report but has some interesting aspects to it that we haven’t seen elsewhere.

To read the report go to: http://healthwatchtrafford.co.uk/wp-content/uploads/2015/03/Fibromyalgia-Report-FINAL.pdf

 

12/01/2017

New Minimally Invasive Treatment for Benign Thyroid Nodules

A new minimally invasive treatment for benign thyroid nodules is now available at the Spire Hospital, Southampton.

This new procedure has just received NICE approval and means that, for some patients, a thyroidectomy and treatment with levothyroxine is avoided.

It’s only available privately at the moment but it is hoped that the NHS will see that this much cheaper and effective treatment for benign thyroid nodules is a much better option for patients.

For more information go to: http://www.thyroidablation.co.uk/

 

17/10/2016

Thyroid Awareness Week 2016 Press Release

Download the press release here

http://www.thyroiduk.org.uk/tuk/news_docs/ThyroidAwarenessWeek2016PressRelease.doc

 

14/10/2016

New study showing levothyroxine patients are not converting T3

There is a new paper out showing that patients on levothyroxine are not converting properly and have low T3-T4 ratios.

The authors of the study, Sarah J Peterson Ph.D, Elizabeth A McAninch M.D. and  Antonio C Bianco M.D. looked at 9981 participants of the US NHANES study who had normal TSH levels.  469 of these were treated with levothyroxine.

They found that the patients on levothyroxine had higher FT4 levels, lower FT3 levels and lower T3-T4 ratios but they also differed in 12 out of 52 objective and subjective measures (symptoms and tests).

The levothyroxine treated patients were more likely to be overweight despite taking in less calories and they were more likely to be taking anti-depressants and statins.

The authors state that, “Notwithstanding, the concept that establishing a normal serum TSH renders individuals on LT4 monotherapy clinically euthyroid should be revisited and QOL measures should be more highly prioritized in hypothyroidism research and professional guidelines.”

I completely concur with their comments!

You can find the full text of the paper here: http://press.endocrine.org/doi/pdf/10.1210/jc.2016-2660

13/10/2016

AllTrials Campaign - Video of talk by Dr Sile Lane

Last month Dr Sile Lane delivered a fantastic talk at TEDx Madrid. It is a clear and compelling introduction to the AllTrials campaign which calls for all clinical trials – past, present and future – to be registered, and their methods and results to be fully reported.

The absence of trial information on many drugs we prescribe and use today is a shocking story that many have yet to hear. Please share the video with your friends, family and colleagues – on Facebook, on Twitter (using #AllTrials), on your website, by email – so that they, too, understand what we are calling for and why.

The campaign is now a global force, we appreciate all your help in spreading the word.

Please watch the video - https://www.youtube.com/watch?v=-RXrGLolgEc&feature=youtu.be

 

30/09/2016

College of Naturopathic Medicine Student Clinics

The College of Naturopathic Medicine is holding student clinics at Brighton University between now and ay 2017. 

The clinics are aimed to help people nutritionally support their health conditions, including thyroid problems.  Student practitioners will run the consultations which will be overseen by a fully qualified and trained nutritionist and observed by other student practitioners.

The cost is £40 which includes the initial consultation plus a follow up.  This enables the practitioner to see the client again in order to ensure they are making progress and also to allow for any modifications to the nutritional plan if needed.

This is an excellent way to help both clients and students and a good opportunity to get a consultation and follow up at a very reasonable price.

The College of Naturopathic Medicine run student clinics in other areas too.

For more information click here

 

22/09/2016

Our advisers win competition for favourite article

I am so pleased to tell you that, with your help, our advisers have won a competition for favourite article in the journal, Endocrine Connections.

The competition was fierce but they won with 34% of the vote for their article, Variation in the biochemical response to L-thyroxine therapy and relationship with peripheral thyroid hormone conversion.  The authors are John E Midgley, Rolf Larisch, Johannes W Dietrich and Rudolf Hoermann.

The research they are doing that shows why patients do not always find levothyroxine alone works for them.  Thyroid UK would like to offer them our congratulations for a job well done!

Their article can be found here: http://www.endocrineconnections.com/content/4/4/196.full.pdf+html

 

20/09/2016

PrescQIPP

You may or may not be aware of an organisation called PrescQIPP.  PrescQIPP is an NHS funded not-for-profit organisation that supports quality, optimised prescribing for patients. They produce evidence-based resources and tools for primary care commissioners one of which is the PrescQIPP Bulletins that includes DROP-Lists.  

The PrescQIPP DROP-List (Drugs to Review for Optimised Prescribing) details "treatments of limited clinical value are not used and medicines no longer required are stopped.”

The Bulletin 117 July 2015 4.0 DROP-List that included the drug liothyronine (T3) and was very out of date in respect of guidance for doctors.  

Thyroid UK had some communication with PrescQIPP along with another stakeholder and PrescQIPP reviewed their Bulletin 117 July 2015 4.1 to include the latest guidance and to note that the guidance in their Bulletin was for patients with primary hypothyroidism.

Another recent bulletin (Bulletin 121 Switching liothyronine (L-T3) to levothyroxine (L-T4) in the management of primary hypothyroidism) explained to doctors how they could switch patients from T3 to levothyroxine. 

Thyroid UK was once again, not very happy with this and we sent them a response to their Bulletin 121 which you can find here

PrescQIPP have now responded to us.  The response is typical of the kind of responses we've always got from the British Thyroid Association, which isn't surprising because that is what they use for their information.  You can view their response here:  http://thyroiduk.org.uk/tuk/news_docs/ThyroidUK.PDF

We are not sure whether it is responding to this at this moment in time.  We have decided to start a campaign that will cover various problems with the prescribing and treatment of T3 so watch this space!

 

05/08/2016

Healthwatch Surveys

You may remember that we posted information about a major survey of ME/CFS services, created by Karen Morris, launched by Healthwatch Trafford and supported by the Patients Association, last year. The survey asked 45 questions about your illness histories and then asked questions about how well they had been dealt with by your local health services – particularly at GP and hospital levels.

Although the survey was based in the Trafford area of Greater Manchester, the questionnaire is available for any M.E (more controversially called C.F.S) patient within England, to be shared with other Healthwatches and published in a public report. 

Unfortunately, there has not been a report published yet and Karen contacted Healthwatch Trafford to find out why.  This is the response she received, which includes information on a new survey about Fibromyalgia Services.  Do complete the survey and show them how you feel about services for this condition. Always keep a copy of anything you send:

Hello

I just wanted to get in touch to share an update on what is going on with the ME/CFS survey we launched last year. It has been a simply huge piece of work which has attracted lots of attention, both nationally and (surprisingly) internationally and from media around the country.

Creating the report has been much more difficult than I ever anticipated. Having no background in research, I didn’t plan the project in the most efficient way and am now paying the price. 

The report is currently over 100 pages long and still requires lots of work. However, we are now working with Manchester Metropolitan University to analyse trends and ensure that the report is of a high standard and as accurate as possible.

When it is completed, there will be the full report as well as a summary report, which will be shared with everyone involved as well as with every Healthwatch organisation in England, along with the results for their area. Please also note that the survey will remain open for the foreseeable future.

Find it at http://healthwatchtrafford.co.uk/get-involved/surveys/mecfs-survey/

Following the interest in the ME/CFS work, we are currently undertaking a similar piece of work on Fibromyalgia. We have an intern from Manchester University working with us to conduct a survey on experiences of health services of those with Fibromyalgia. I am aware that due to the nature of the conditions, there are some joint ME/CFS and Fibromyalgia support groups and that many people have symptoms of both, so I would ask that you help us publicise our new survey and fill it out if appropriate.

Find it at http://healthwatchtrafford.co.uk/get-involved/surveys/fibromyalgia-survey/

Thanks for all your help and patience, it is really appreciated.

Kind regards,

Adam Webb

Communications & Information Officer

Telephone: 0300 999 0303

Text number: 07480615478

www.healthwatchtrafford.co.uk

 

15/07/2016

New Article - Diagnosis and Treatment of Hypothyroidism

An extremely good paper has been written by Mel Rowe, Rudolf Hoermann and one of our trustees, Peter Warmingham. The paper was written to meet the needs of both patients and their doctors in respect of suggestions for more effective diagnosis and treatment of hypothyroidism.

This is a must read for patients who can then discuss their findings with their doctor to aid them in finding the best course of action .

Click below to access the paper:

Read article

The authors would prefer that the original document remains with Thyroid UK but anyone can link to this via: http://www.thyroiduk.org.uk/tuk/TUK_PDFs/diagnosis_and_treatment_of_hypothyroidism_issue_1.pdf

 

17/06/2016

PrescQIPP and Thyroid UK’s Response to Bulletin 121 

PrescQIPP is an NHS funded not-for-profit organisation that supports quality, optimised prescribing for patients. They state that they “produce evidence-based resources and tools for primary care commissioners, and provide a platform to share innovation across the NHS.”

One of their projects is the PrescQIPP DROP-List which has caused a lot of angst recently among thyroid patient groups and patients alike because one of their recent DROP-Lists (Bulletin 117 July 2015) included liothyronine (T3).

Some people thought that the DROP-List was a list of medications that are going to be dropped which is incorrect. The PrescQIPP DROP-List is an acronym for Drugs to Review for Optimised Prescribing.  It is a list of medicines that are regarded as “low priority, poor value for money or medicines for which there are safer alternatives.” 

PrescQIPP featured liothyronine on the DROP-List as an item which is poor value for money and has limited clinical value, something that Thyroid UK disagrees with.

In their Bulletin 121 – February 2016, entitled “Switching liothyronine (L-T3) to levothyroxine (L-T4) in the management of primary hypothyroidism” PrescQIPP give a list of recommendations and a long list of items under the heading, “Rationale for switching to levothyroxine”.

They stated, “This is one of a number of bulletins providing further information on medicines contained in the PrescQIPP DROP-List (Drugs to Review for Optimised Prescribing). This bulletin focuses on liothyronine and provides the rationale for new patients to be commenced on levothyroxine and for current patients to be considered for a switch to levothyroxine. Information on liothyronine adverse effects, options for dose conversion in support of the switch and potential switch savings are provided.”

They also stated, “Nationally over £20.8 million was spent on liothyronine over the course of a year (ePACT May to July 2015). Switching to levothyroxine could release significant savings nationally. As with all switches, individual patient circumstances need to be borne in mind, however, with tight switching criteria, assistance from practice nurses, support from your local CCG prescribing teams and the experiences of CCGs/GPs that have already undertaken this work, it is hoped that GPs will participate in realising the cost savings.”

Thyroid UK feels that the prescribing of medicines is being taken out of the hands of doctors by organisations such as the Clinical Commissioning Groups (CCGs) and PrescQIPP.  Thyroid UK has spoken to a Clinical Commissioning Group about the prescribing of T3 and was told that there was no endocrinologist on their CCG. There is also no endocrinologist listed in the PrescQIPP team information.

We hear every day now of patients being taken off of T3 or Armour thyroid because their GP or endocrinologist has been told to stop giving prescriptions. CCGs have a traffic light system, mainly red, amber and green.  Many of them have given T3 a red traffic light which means that it can only be prescribed by a specialist (endocrinologist).  However, many endocrinologists are saying that they are not allowed to prescribe T3 now so it may be that some CCGs are giving it a black or blue traffic light which means not to prescribe at all.

We feel that, actually, the main problem is probably cost because T3 has gone up from 16p per tablet to £9.22 over the past few years (you may have seen The Times article on 6th June) and also because PrescQIPP and some CCGs mention the cost as part of the reason for not prescribing. Some doctors are also telling their patients that it is due to cost.

Thyroid UK has now become a Stakeholder of PrescQIPP so that the next time they do something about thyroid medications, we can comment.

In the meantime, we decided to respond to their Bulletin 121, which you can find here: Download document

They are now looking into this further and we hope that our response will go some way to allowing more patients to be prescribed T3 if they do not resolve all of their symptoms on levothyroxine.

 

10/05/2016

Experiencing a drug side effect?

RxISK is a website that was launched in October 2012 and is run by a group of high-profile medical experts with international reputations in early drug-side-effect detection and risk mitigation, pharmacovigilance, and patient-centered care.

RxISK RxISK is a free, independent drug safety website to help you weigh the benefits of any medication against its potential dangers.

They have a lot of information on their website including an A-Z drug search database, information on complex withdrawal from drugs and guides and papers.

They are offering a free RxISK Report which takes 10 minutes to complete and provides you with a RxISK Score indicating how likely it is that your problem is caused by starting or stopping a prescription drug.

This website is definitely worth a look - http://rxisk.org/

21/04/2016

Thyroid UK Discount with Revital Ltd

revital logoSince the Nutricentre is closing very soon, Thyroid UK has just organised a new working relationship with Revital where people can get 15% discount on all supplements. They offer several Nutri products.

Thyroid UK will also receive 5% on all purchases so by purchasing from Revital using our code, you will not only be receiving a discount but you will be supporting us too. This will help keep us running and campaign for change.

We are aware that Superloop is emailing people informing them that they are now working with Revital. We have received some communications from people who are confused about this so just to clarify, Thyroid UK is not currently working with Superloop and has not done so for quite some time.

To obtain your discount you need to use our code which is 20030400 and mention Thyroid UK.

You can use this code either on line at revital.co.uk or by ordering by telephone - 0800 652 875.

You will need to register online for online orders.

If there is already a discount on any of the products you purchase, there will not be a further discount.

Revital also have several shops in the UK - revital.co.uk/storelocator - where you can also use the code.

If you have any problems regarding ordering please give them a call on 0208 845 4118.

Do please support us when you purchase your supplements.

 

1/04/2016

Nutricentre Closure

Thyroid UK has been informed that Tesco is closing its Nutricentre stores. We don't have information on when this is happening yet.

Nutricentre have today informed us that as from Monday 4th April, everything in their stores will be sold at a 75% discount whether it be online or by telephone.

We are very saddened by this event as we know that many people purchase Nutri products for their thyroid and adrenal health. Thyroid UK will be looking for an alternative supplier and will keep you informed.

You can purchase Nutri products at Your Nutrition Shop - http://www.yournutritionshop.com/shopaff.asp?affid=9 – and you will be supporting Thyroid UK as you shop.

There is currently a 25% sale on Nutri products.

 

4/03/2016

That's Solent TV

Solent TV logo

Lyn Mynott appeared on a That's Solent TV slot in January along with a patient, Caroline Smith, who told her thyroid health story.

The two videos can be found on youtube:

https://www.youtube.com/watch?v=Sf9eeNIviIQ

https://www.youtube.com/watch?v=w-70MfEwLlM

 

26/02/2016

Thyroid UK Submission to Scottish Parliament Petitions Committee
PE01463: Effective thyroid and adrenal testing, diagnosis and treatment

Scottish Parliament logoThyroid UK has sent a written submission in respect of the evidence session at the Scottish Parliament Petition Committee meeting on 9th February 2016. We were very concerned at the poor quality evidence given.

To read our letter go to:
www.scottish.parliament.uk/S4_PublicPetitionsCommittee/
General%20Documents/20160224_PE1463_UUU_ThyroidUK.pdf

To see the video of the meeting go to:
http://linkis.com/scotparl.vualto.com/YxbwB

To read other submissions and the transcript of the meeting go to: www.scottish.parliament.uk/GettingInvolved/Petitions/PE01463


23/02/2016

Call to Invest more money into scientific research to find the cause of M.E./CFS

Simone de Monerri has set up a Government Petition asking for them to invest more money into scientific research to find the cause of M.E./CFS. Because no universally effective treatment exists for M.E. Current NHS treatments for the illness are based on the controversial PACE trial, and have been found ineffective or even harmful.

To sign the petition go to: https://petition.parliament.uk/petitions/118175

For more information go to: https://www.facebook.com/standupforME/?fref=ts

 

23/02/2016

PACE Trial Needs Review

ME Action have created a petition to call for retractions from The Lancet, Psychological Medicine and for the authoris of the PACE trial to publish recovery outcomes. For further information and to sign the petition go to:

http://my.meaction.net/petitions/pace-trial-needs-review-now

To see the recent Open Letter to The Lancet regarding the call for an independent enquiry into the PACE trial go here: http://www.meassociation.org.uk/2016/02/clamour-grows-for-independent-inquiry-into-the-pace-trial-open-letter-to-the-lancet-republished-11-february-2016/

 

4/02/2016

LDN 2016 Conference (Live Stream)

LDN 2016 Conference logoThe LDN 2016 conference is taking place in Florida on 19th - 21st February. 
However, it will be streamed live around the world so you don’t have to go all the way to America to reap the benefits.

There are 21 speakers including one of Thyroid UK’s advisers, Kent Holtorf MD, whose presentation is entitled, “New Evidence-based treatments of Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM) and Dr. Tom O'Bryan who is an internationally recognized speaker and workshop leader specializing in the complications of Non-Celiac Gluten Sensitivity and Celiac Disease as they occur inside and outside of the intestines.

There are speakers talking about topics such as Lyme disease, chronic pain, ulcerative colitis and lots more.

The Live Stream can be watched during the conference or as a recording at a time to suit.  The recording will be available online for 12 months so you will have plenty of time to watch all the presentations.

Questions can be submitted for the Q&A’s a week before and during the conference by emailing questions@ldn2016.com 
There is also an online chat box which worked very well last year.

By purchasing the live stream option you can:

  • watch every session live in the comfort of your own home
  • pose questions to the panel during Q & A
  • receive 12.5 CME credits if you are a health professional
  • watch all presentations afterwards as many times as you like

Tickets for the live stream are $55 but a $15 discount is available with a unique code for Thyroid UK members and Thyroid UK website users. 

To obtain your discount use the code: tuk15

To register for the live stream go to: http://www.ldn2016.com/buy-live-stream 
For more information about the conference go to: http://www.ldn2016.com/

 

 

3/02/2016

BMJ Looking for Patients to Review Articles

The BMJ logoThe BMJ has committed to improving the relevance and patient centredness of its research, education, analysis, and editorial articles.

In order to do this the BMJ are looking for patients and carers to review articles in their journal. No expertise in scientific peer review is needed. They are looking for patients with experience of living with a condition, caring for someone that lives with a condition or patient advocates.

Reviewers will receive free membership to the BMJ as a thank you for taking part.

Do think about doing this as we need to ensure that patient views on hypothyroidism and hyperthyroidism articles are collected.

Full guidance for patient reviewers, including details on how to register are here:
http://www.bmj.com/about-bmj/resources-reviewers/guidance-patient-reviewers?mc_cid=118e654fe0&mc_eid=f3f8eb9309

 

2/02/2016

EUPATI Launches New Educational Toolbox

The European Patients' Academy (EUPATI) has launched a new online toolbox of information which avoids technical jargon and is available in seven European languages.

It covers all aspects of medicines early laboratory research, the process of medicines, clinical trials, different types of medicines including personalised medicines and safety of medicine.

They also have stories of patients who have become involved in research and how it has helped them.
You can find some interesting articles and a blog too.

All of this information can be found here: https://www.eupati.eu/

EUPATI logo

 

2/02/2016

Patients Needed to Review NICE Content

Clinical Knowledge Summaries logoClarity Informatics provide clinical content, in collaboration with the National Institute for Health and Care Excellence (NICE), for the new Clinical Knowledge Summaries (CKS) service available through the NICE website.

They are reviewing their hyperthyroidism and hypothyroidism topics this year and are looking for patients who may wish to feedback on this information.  They have asked us to help them find patients with thyroid disease who would be interested.

Volunteers would need to read the thyroid topics as they are being written and answer a few questions regarding the language that is being used, whether the needs of the patient are being appropriately considered, and whether there is evidence of encouragement of effective communication between the doctor and patient.

You would then need to complete a form with guidance from them if necessary.  Those who take part would receive a Certificate of Acknowledgement.

If you are interested in helping Clarity Informatics please contact them:
Email: cks-enquiries@clarity.co.uk
Telephone: 0191 287 5800

To see the current Clinical Knowledge Summaries,
click here for Hypothyroidism and here for Hyperthyroidism

 

7/1/2016

Mucky Races

Thyroid UK is putting together a team of people who are looking for
the muckiest experience of their lives!

Mucky Races logoMucky Races have obstacle courses that are designed to be challenging but most importantly, they're good fun and suitable for racers of all abilities and ages.

Whichever event you choose to run there'll be plenty of mud, hills, obstacles, water hazards, jumps and hurdles to overcome. Whatever your ability, there is a sense of achievement.

There are several sites across England with various events so you are sure to find a location and event that suits you. For more info on events go to: http://www.muckyraces.co.uk/

There is an on the day helpful guide with some handy tips - http://www.muckyraces.co.uk/day

Team Thyroid is doing the 10k event at Brightlingsea, Colchester, Essex on Saturday 16th July 2016 at 11am where they will Run, Crawl, Hop, Jump, Wade, Walk, Climb and Stride their way to the finish line! For more info go to: http://www.muckyraces.co.uk/mucky-510

We have some Team Thyroid members already but if you are interested in having a mucky fun time with us, do think about joining us and raising some funds to help us do our very important work.

Fees vary depending on which event you take part in and include a goody bag, a t-shirt and a medal. You will be sent a waiver to sign – don't forget to take it with you on the day!

To join Team Thyroid at the Brightlingsea event, the fee is £38.00 plus £2.00 transaction fee until 14th July or £45 (cash only) on the day. Thyroid UK will be giving away a T-shirt to everyone who registers and participates for Thyroid UK.

We will supply sponsorship forms if you need them and help you set up a BT "mydonate" page to help you gather sponsorships.
As soon as you have registered send an email to louise.warvill@thyroiduk.org with Mucky Races in the subject line and we will then contact you about the size of T-shirt you want and give you the code to set up your "mydonate" page.

To register and join Team Thyroid go to: http://www.muckyraces.co.uk/mucky-510
Click “Register” for the Mucky 10 race, complete your details and then click “Find” and type in “Team Thyroid”.  Click “Join” and follow the instructions. 

You can invite friends to join you in the race too!
Hope to see you there!

 

 

3/12/2015

JOIN US IN A WORLD RECORD ATTEMPT!

On 11th June 2016, Skyline, alongside Thyroid UK will be attempting to smash all previous records for skydiving. The aim is to complete the most tandem jumps in England in 24 hours… and we need your help!

Imagine yourself exiting from the door of an aircraft from over 2 and half miles up and freefalling at a speed of 120mph through the clouds, before gliding back down to your envious supporters on the ground below. Skydiving is an unbelievable and exhilarating rush like no other and with no experience required - it's your opportunity to reach for the skies and be part of a World Record!

For this particular skydive you'll be attached to a fully qualified instructor who controls your jump from start to finish; they will do all the hard work for you, allowing you to catch your breath and enjoy the ride!

Thyroid UK has booked 10 places at Sibson Airfield, Wansford, Peterborough, Cambridgeshire, PE8 6NE

As long as you raise the minimum sponsorship level of £395 for your jump, you can recover both the cost of the booking deposit and the jump from your sponsorship money - which means you get to jump for FREE!

If you would be interested in taking part in this event and helping to raise funds for Thyroid UK please send us an email to: louise.warvill@thyroiduk.org

We also have a website where you can book too. Here you can also book for group members (if any of your friends want to join you in your World Record Attempt skydiving adventure).

Just head over to https://www.skylineregistrations.co.uk/parachuting/booking.aspx?clientid=86064
If you choose this option, please remember to pick Peterborough as your choice of airfield.

skyline parachuting tandem world record attempt

 

25/11/2015

Thyroid UK's Open Letter

Thyroid UK has written an open letter to the British Thyroid Association and the Royal College of Physicians in regard to the results of our Hypothyroid Patient Experiences Survey.

To see the letter
click here. To see the results of our survey click here.

We have sent a copy of the letter along with copies of our Survey and its Appendices, to the British Thyroid Association, the Royal College of Physicians and the British Thyroid Foundation asking for their responses.

We will keep you informed.

 

23/11/2015

An Article in The Lancet from Thyroid UK Advisors

The Lancet logoOf rats and men:
thyroid homeostasis in rodents and human beings

Johannes W Dietriche, John E M Midgley, Rolf Larisch, Rudolf Hoermann

Summary
In their Comment in The Lancet Diabetes & Endocrinology,1 Elizabeth McAninch and Antonio Bianco1 raise the important issue of the variable effectiveness of levothyroxine (LT4) monotherapy for hypothyroidism. Residual hypothyroid symptoms in 12% of patients on LT4 treatment in the USA, the European Union, and China translates to more than 13 million people with hypothyroidism who have reduced quality of life, despite normal thyroid-stimulating hormone (TSH) concentrations. The reason for these residual symptoms in this enigmatic group of participants is still unknown.

The full text is available to read here:
http://www.thelancet.com/journals/landia/article/PIIS2213-8587(15)00421-0/fulltext

 

20/11/2015

A New Article on TSH by Thyroid UK Advisors is Published

frontiers in endocrinology logoHomeostatic Control of the Thyroid–Pituitary Axis: Perspectives for Diagnosis and Treatment

Rudolf Hoermann, John E. M. Midgley, Rolf Larisch and Johannes W. Dietrich

The article concludes that:

As a consequence, the use of TSH, valuable though it is in many situations, should be scaled back to a supporting role that is more representative of its conditional interplay with peripheral thyroid hormones. This reopens the debate on the measurement of free thyroid hormones and encourages the identification of suitable biomarkers. Homeostatic principles conjoin all thyroid parameters into an adaptive context, demanding a more flexible interpretation in the accurate diagnosis and treatment of thyroid dysfunction.

To read more, and download a PDF of the full article, click here

 

19/11/2015

Giving Tuesday Heart

Support us on #GivingTuesday

On December 1st, 2015, the world will experience its fourth annual #GivingTuesday.

What is #GivingTuesday?

#GivingTuesday was created in 2012 as a global day of giving back and doing good for others. In its three years, it has proven to be a real and sustainable fundraising tool. #GivingTuesday is coming to the UK for the first time this year.

I'm very excited to inform you that Thyroid UK will be participating in the UK's first ever #GivingTuesday!

We have a goal of raising £5,000 and we really hope you'll be a part of helping us reach that goal! All of the donations received will go towards essential computer equipment and software.

Keep an eye out for emails from us explaining how you can get involved. For more information about #GivingTuesday, visit the official website www.givingtuesday.org.

We hope you're able to participate in #GivingTuesday and make it a huge success by contributing to Thyroid UK on 1st December.

 

 

21/10/2015

EasyFundraising App Now Available

easyfundraising logoEasyfundraising is a simple way to raise funds for Thyroid UK whilst you do your normal shopping. Thyroid UK will receive a percentage of what you pay as a donation from the shop you are buying from. For example, if you purchase goods from Marks and Spencer you can raise up to 6.5% for Thyroid UK for no extra cost or work on your part!

You can shop with 3000 retailers such as Tesco, Next, Very, John Lewis etc so when you do your Christmas shopping you can support Thyroid UK and raise lots of money for us.

All you need to do is to register your cause (Thyroid UK) with easyfundraising, which is free, by going here www.easyfundraising.org.uk/register-your-good-cause

To help you remember to use easyfundraising whilst shopping, easyfundraising have a Donation Reminder that will let you know you can raise money for us whilst you are shopping - new.easyfundraising.org.uk/donation-reminder

To make life easier, easyfundraising have now released Apps for android and iphone and ipad.
You can download these apps here:

Android phone:

https://play.google.com/store/apps/details

iphone and ipad:

https://itunes.apple.com/gb/app/easyfundraising

If you work in a company, please think about asking them if they will use easyfunding when they purchase their stationery etc.
Contact us for more information on how they can do this – enquiries@thyroiduk.org

Every pound you raise will help us send out information, speak to people on the phone, run surveys etc. so do think about registering and it will support us in helping people with thyroid disease and related disorders.

 

13/10/2015

T-Shirt Campaign for
Thyroid Awareness Week 17th - 23rd Oct 2015

TAW Limited Edition T ShirtTo kick things off, we have launched
a t-shirt campaign!

www.tboom.co.uk/thyroid-awareness-week-2015

These t-shirts are LIMITED EDITION as they are only available until the 31st October.

The t-shirts are £10 each (£9.00 for kids sizes and £11.00 for long-sleeved t-shirts) and come in a range of sizes.

P&P is charged at £2.95 for the first item, plus £1 per additional item ordered. All of the T-Shirts are tightly packaged in protective bags and sent via Royal Mail.

Thyroid UK will receive £3 for every t-shirt sold.

PLEASE support Thyroid UK by not only purchasing a t-shirt, but also posting a picture of yourself wearing it on facebook/twitter.

THANK YOU!

Office girls in T Shirts

 

 

23/09/2015

The quite simply lovely Alan Gardner is running a new
Aluminium Can Competition for 2015!

Click here to go to the Competition Entry Form

This time, instead of guessing the weight of the cans, you have to guess the AMOUNT of cans that Alan will be able to collect in his garden over the next year!

He has already started collecting cans and will continue to do so until 4th September 2016.  At this time, the amount of cans will be announced and the person who guesses the closest, without going over, will be the lucky winner!ali cans

The prize will depend on how many people have entered the competition as Alan will match or double the amount raised from guesses and this will form the prize fund.

Prize
If the winner guesses within 50 cans, Alan will double the amount raised from guesses, if they don’t manage to get within 50 cans, Alan will match the amount raised from guesses.
For example:
Alan collects 100 cans and 50 people have entered the competition.
The winner guesses between 50 and 100 cans. This will mean that they will get £100 prize money!
The winner guesses between 1 and 49 cans. This will mean that they will get £50 prize money!
Entry costs £1 per guess.

Surprizes
As an added bonus this year, each entry will also qualify you to be entered into quarterly draws to win surprise prizes worth around £30 - £40 each!

These winners will be drawn from all of the guesses and will be drawn on the following dates:

Fri 4 December 2015
Fri 4 March 2016
Fri 3 June 2016
Fri 2 Sept 2016

If you would like to enter, you just need to fill in this form and make your payment - easy!

Alan is supplying the cans and all the prizes and deserves a HUGE THANK YOU for his amazing fundraising efforts! :)

Rules:
Anyone can enter as many times as they like.
The competition is open to everyone, including staff and volunteers of Thyroid UK, as the only person who will know the total is Alan.
Each guess can only win once on the quarterly draws. Each guess will be given a number and the winner will be picked using an online randomiser. Once that number has won, it will be removed from the list for the next draw.

 

23/09/2015

Craft Day Fundraising Event

Sunday 18th October at
Shelly Farm Community Centre, Farmhouse Way,
Monkspath, Shirley, Solihull B90 4EH

 

Craft Day Fundraising EventJoin us for a full day of crafting in aid of two very worthy charities; Thyroid UK and Shelly Farm Community centre who both serve their very varied communities in different ways and need funds to help continue with their work.

Julie Taylor and Jackie Ashton will be teaching two classes on the day. These very talented scrappers (Hey Little Magpie design team) will be using an amazing kit from Simple Stories.

The kit has 12 double-sided papers, 2 12x12 sticker sheets, transparencies and wood veneer shapes worth £26.

There is also an optional lunch as well as a raffle with generous prizes from Funky Farm Scrapbook Barn and Hey Little Magpie up for grabs.

The crop costs just £6. Optional kit and 2 classes are just £22 and optional lunch £6. Refreshments will be available throughout the day. ALL PROCEEDS to the selected charities.

To book your kit and lunch please email Morag: cropkat@gmail.com for payment details

 

 

21/09/2015

Tandem SkyDive World Record Attempt

Thyroid UK are considering booking places for this charity challenge and we are looking for people who might be interested in taking part!

tandemOn 11th June 2016 Skyline will be attempting to smash their current record for the 'most tandem jumps completed in 24 hours'. They are aiming to have 350 skydivers across 8 airfields.

We would probably be looking at using the airfield at Cambridgeshire as that is the one nearest to the Thyroid UK head office, however if there are enough people interested in another area that would be fine.

We have to book a minimum of 10 places at one airfield and this will cost Thyroid UK £100, which is why we have decided to try and gauge interest before booking the places. For people taking part there would be a minimum sponsorship target of £395.

If you think you might be interested, or know someone who would, please contact me as soon as possible by email: louise.warvill@thyroiduk.org

 

7/09/2015

Give A Car Bake-Off!

The lovely people at Give A Car (www.giveacar.co.uk) are running a cake competition!

All you need to do is bake a 'showstopper' cake. Take a pic or two and send the pics to Giveacar:

on their Facebook page (https://www.facebook.com/pages/Giveacar/145950545421445?fref=ts) ,

by tweeting @Giveacar

or to their email at charity@giveacar.co.uk. Add your name, chosen charity (Thyroid UK!) and a description of the cake.

There will be weekly uploads, in conjunction with the airing of The Great British Bake Off [every Wednesday] of the recent entries that they have received. The photos will be uploaded to a Facebook album 'Giveacar Bake Off'.

The competition will close on Wednesday 14th October, which coincides with the final of The Great British Bake Off. They will choose their top 3 photographs (totally impartially) and announce the winners within a week of the competition closing, by social media and also contacting them directly.

Give A Car Bake Off There will be three prizes, 1st, 2nd 3rd, for both the charity and the contestant as explained below:

1st Prize: 1 year 'Tastecard' membership for the entrant and a £100 donation to their charity

2nd Prize: A £50 John Lewis voucher and a £50 charity donation.

3rd Prize: Bake Off cookbooks and a £25 donation.

Please help to support Thyroid UK!

On your marks, get set, bake!...........
‪#‎bakeoff ‪#‎charity

 

 

2/09/2015

Invitation to take part in a
Chronic Illness Study

Sabine Topf is carrying out a study as part of her PhD in psychology, at the University College London.  The study is called "Understanding Thoughts about Chronic Illnesses" and aims to find out more about how you think about your illness along with your experience of health related topics. 

You need to have been diagnosed with a chronic illness, have been prescribed daily medication for this illness and be over 18 to participate. 

If you complete the study, you will have the chance to win one of four £25 gift vouchers (for example from Boots, M&S, Amazon, Etsy etc) after you have completed Session 1.

At the end of Session 2 you will receive a £3.75 Amazon voucher to say thank you for your time.

Participation in the study requires you to take part in two separate sessions where you will need to complete tasks on a computer and fill in some questionnaires. You can do this from your own computer at home.  All information about you will be kept strictly confidential.

The results of the study will be published as part of Sabine’s PhD thesis and also in academic publications and at conferences.

For more information about the study and to take part, please go to:

https://uclpharmacy.eu.qualtrics.com/SE/?SID=SV_br5aufUbzLRPCaV

chronic illness study

 

10/08/2015

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:-
ISPE www.ISPE.org
NIHR www.nihr.ac.uk
EUPATI www.patientsacademy.eu
NHS www.nhsggc.org.uk/about-us/professional-support-sites/research-development

 

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

 

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

 

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

 

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

 

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

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."

-------------------

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.

------------------

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

 

 


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