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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:
Communication and Information Officer
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
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
The Thyroid Secret goes LIVE tomorrow
You may have seen the Thyroid Secret mini trailers recently. The documentary series goes LIVE tomorrow.
There are a huge number of experts speaking and the quality of the information and the TRUTH that’s contained in this incredible 9-part documentary is amazing.
It’s an absolutely priceless gift to anyone suffering from a thyroid condition and the World Premiere event starts tomorrow, FREE for anyone who wants to watch.
Even if you feel great today, discover how to stay feeling great forever. Give this “gift of health” to you and the rest of your family today!
Here’s just a taste of what’s waiting for you during The Thyroid Secret:
It’s an amazing line up of interviews and survivor stories and from the trailer I’ve seen you’re going to be in for an incredible information packed series.
If you haven’t already registered I urge you to do so now by clicking this link: http://tinyurl.com/zm76b5z
American Thyroid Association Hypothyroid Patients Survey
The American Thyroid Association have created a survey for hypothyroid patients in order to enhance understanding and treatment of hypothyroidism.
It’s not been brilliantly designed as there are some sections that some people may not need to complete but they have designed it so that all the questions have to be answered. However, on these sections there is an “other” section so you could put comments in there (as I have done).
Do complete the survey, though, as it will show exactly how many patients are on either combination or NDT and who feel well.
To go to the survey click here: www.surveymonkey.com/r/hypothyroidpatientsurvey
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 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
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
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/
Big Life Fix
Thyroid UK has been approached by Studio Lambert, the BAFTA-winning TV production company behind Gogglebox, Doctor in the House and Tattoo Fixers.
They aired their first series of the show in December last year and now they are making the second series. If you haven’t seen it, “Big Life Fix” is an exciting and innovative science series that sees a skilled team of scientists, engineers and designers create bespoke technology for individuals and groups to transform their lives for the better.
In the first series, the team came up with solutions for a range of issues affecting individuals and communities, including creating a device to counter the effects of Parkinson’s disease for a young graphic designer, building a bicycle for a boy born with no hands or feet and designing a system to help a visually impaired mother take her children out to the park.
They told us, “We’re now planning a second series and looking for more people who feel they could benefit from a tailor-made invention. Perhaps it’s a daily task, a hobby or a lifelong dream that’s proving to be a challenge. Or maybe you have a disability you need help managing, or a problem that you and your family, or even your whole community face. We’d love to chat to anyone who would like to apply. If selected, our team will work with them to tackle their problem or challenge using ingenious design and technology.”
If you are interested, do give them a call.
Hull's Proposed Public Consultation on Adding Fluoride to Drinking Water
During 2017, we believe that Hull City Council will go out to a 3-month public consultation regarding its proposal to add fluoride to your drinking water supply as a Public Health measure to prevent dental decay in tiny children. It is vital that you, your friends, relatives and neighbours take part in, and oppose this proposal because the fluoride in your tap water would be anti-thyroid. In particular, the fluoridating acid (hexafluorosilicic acid) contains a compound (hydrofluoric acid) which, when absorbed whilst taking a hot bath, damages the thyroid and produces a low thyroid condition.
There is very little research on this and we have to go back almost a Century to pre-war Austria where a young physician called Viktor Gorlitzer von Mundy experimented on himself and then on patients who had hyperthyroidism (thyrotoxicosis as it was called then). The results of his treatment was that he had an almost 100% success rate in dampening down their thyroid glands. Unfortunately, in the early days, he continued the treatment for a tad too long with the result that a few of his patients developed hypothyroidism.
What was the treatment? Gorlitzer carefully measured the volume of hot water at a certain temperature to fill a bath and very carefully measured the amount of hydrofluoric acid to be used before adding it to the hot water. The patient was then asked to stay in the bath for a carefully defined length of time. The hydrofluoric acid (which doesn't dissociate in water) was absorbed through the skin and reduced the over-activity of the thyroid gland.
The treatment fell out of favour in the 1960s when more standardised drugs came on the market making it easier for the physician to tailor the dose and concentration for individual patients.
Whereas most compounds dissociate in water, hydrofluoric acid is one of the exceptions to the rule. We know that this is so because hexafluorosilicic acid (H2SiF6) is a fuming acid which contains 20% fluoride, 28 contaminants, silica, factory floor water and 2% hydrofluoric acid (HF). Because the fluoridating acid is fuming, that implies that the HF gasses off to form Hydrogen Fluoride gas - also HF. HF is a classified poison under UK Law but it would be difficult to accuse your local government of poisoning you because you would have to prove intent to poison.
Fluoridated tap water contains HF as a non-dissociated acid so taking habitual hot baths will damage the thyroid gland. As time passes, more and more women would experience symptoms indicating that their thyroid glands have been compromised. A recent piece of research from Kent University found that there was 30% more women over the age of 40 with hypothyroidism if they lived in a fluoridated area compared with a non-fluoridated area. The statistics for the West Midlands were worse: almost double the number of cases of hypothyroidism in the West Midlands compared to non-fluoridated Greater Manchester. The difference can be explained by the soft water drunk by people to the west of Birmingham. Their low calcium tap water implies that the fluoride in their tap water is more likely to bioaccumulate in their bodies. Calcium (and magnesium) are antidotes to fluoride.
Prior to the consultation it would be important for you to become knowledgeable about the harm caused by fluoride and you will be expected to quote sources to back up your opposition. It will not be enough tosimply state that you are against the proposal.
Once we know for certain the date on which the Consultation will be opened for comment, I will write again in order to give you the arguments against fluoridation and the relevant references. I cannot write the letters for you since that would look stage-managed. I will also upload this information to my website: www.wmaf.org.uk
In the meantime, can I suggest that learning about the issue before the consultation starts would be time wisely spent. There is much that can be done now to prevent this issue getting as far as Public Consultation and I strongly advise that you contact or visit your City Councillors to tell them about your opposition. If enough letters are written this might (just might) give Cllr Colin Inglis and his Health and Well-Being Board pause for thought. If any of you are Cllr Colin Inglis's Constituents, I advise sending him a letter by recorded delivery. There are three Councillors in each ward. Even if they do not belong to a political party with which you sympathise, they are there to help you and must be approached now in order to let them know that there is no public support for this quirky ill-health Public Health measure.
In 1970, Hull was faced with a fluoridation proposal. At the time, it went no further than initial exploration. The proposal failed because it was perceived that there was no public support for the measure. This could happen again. In 2002-4, the East Riding County Council considered fluoridation but after investigation, decided to pursue other more targetted dental health programmes. Because we have better ways in which to communicate, these days, it's easier to voice disapproval. In fact, it's vital that you do so because pro-fluoridation individuals who are also medical and dental professionals will try to persuade your Councillors that there is public support. These professionals ought not to be regarded as being members of the 'public' but it would be difficult to deny them having their say.
It's not just those individuals with low thyroid who are likely to be in peril but the unborn child whose intelligence will be reduced due to the fluoride crossing the placenta and entering the fetal brain. Fluoride is an endcrine disrupter, it alters the composition of bones and teeth and causes very many different health conditions depending on an individual's susceptabilities.
We urge you not to take this lying down. Resistance is do-able and win-able and already, there people in Hull and the East Riding gathering forces to prevent the adulteration of your water supply. We hope that you will consider joining them.
Joy Warren, BSc. (Hons) Env. Sci; Cert. Nutrition & Health
Co-ordinator, West Midlands Against Fluoridation and For Pure Clean Water
Co-ordinator, UK Alliance Opposed to Water Fluoridation
Refs: Gorlitzer von Mundy, V. "Ein neuer Weg zur Behandlung der Thyreotoxikose mit Fluorwasserstoffsäure" Med Klin 21:&17-719 (1932).
Peckham, S., D. Lowery and S. Spencer (2015). “Are fluoride levels in drinking water associated with hypothyroidism prevalence in England? A large observational study of GP practice data and fluoride levels in drinking water.” J. Epedemiol Community Health 2015; 0: 1-6
Work and health plan to help disabled people into employment
The Government have new plans to “help more people with long term conditions reap the benefits of work and improve their health.”
If it’s done correctly, then people with long term conditions may be able to gain employment that is suitable for them or be supported to remain in their current job.
To see the proposed plans, go to: https://www.gov.uk/government/news/work-and-health-plan-to-help-disabled-people-into-employment
11th Love Your Bones Conference
A patient and public and healthcare professionals conference organized by Portsmouth Hospitals NHS Trust Department of Rheumatology, Portsmouth and South East Hampshire Group and the National Osteoporosis Society is being held on 21st June 2017 at the Mountbatten Centre, Portsmouth.
The Love Your Bones Conference is one of their most successful and well attended conferences and aims to provide a forum for patients and public to hear about osteoporosis.
Love your Bones offers patients and the public:
• Expert Speakers - by using local and national expert’s speakers who are able to impart knowledge related to bone health and osteoporosis information.
• Life Style Advice - keeping you up to date with life style changes that can really improve the quality of life for someone living with osteoporosis.
• Exhibition Stands - with over 40 local and national and local charities and organisation, each offering you advice and support about their services
• Networking - Each conference offers you the opportunity to network with other people living with osteoporosis
It is free to attend and you can apply here: Download Form
Teva levothyroxine tablets back on the market
You may remember that Teva levothyroxine was withdrawn some time ago due to strength and manufacturing problems.
Teva has just informed Thyroid UK that their levothyroxine is now back on the market (as from 17th October). We are extremely pleased to see that not only have they also introduced new dosages – 12.5mcg and 75mcg – but all their tablets are now lactose free. Thyroid UK is constantly being asked about lactose free levothyroxine and these are very expensive on the NHS. Teva levothyroxine tablets may well be the answer.
Teva tell us that they have changed the formulation of their tablets so do check the ingredients if you decide to move from your current brand. Although their clinical trials show that their tablet is stable in terms of patients being able to swap from one product to another, they also explain that prescribers of their levothyroxine tablets should continue to monitor their patients for any clinical signs and symptoms of adequate thyroid hormone replacement because some patients may require adjustments for reasons not related to the pharmaceutical properties of their tablet.
For more information about this go to: http://tinyurl.com/z4a4u8h
Thyroid Awareness Week 2016 Press Release
Download the press release here:
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
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
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: http://www.thyroiduk.org.uk/tuk/TUK_PDFs/CNMStudentClinicLeaflet2016.pdf
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
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: http://www.thyroiduk.org.uk/tuk/response.doc
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!
Medicine Side Effects Tool
The National Association for Patient Participation (N.A.P.P.) has been asked by researchers at the Medway School of Pharmacy to obtain information on medicine side effects.
As patients we all need to balance the benefits of taking medicines against the risks of possible side effects from these medicines. Life expectancy has increased in the UK - we are living longer and as we age it is likely that we will experience more than one medical problem which will require medication.
Medway School of Pharmacy and the School of Pharmacy, University of Birmingham have developed an assessment tool to help people who suspect they may have experienced side effects. It is an anonymous online assessment tool called the Side Effects - Patient Assessment Tool (SE - PAST).
The tool is available online by clicking on this link: https://msp.eu.qualtrics.com/SE/?SID=SV_8Jq61lhD9OoUPT7 where you can read more about how you can provide feedback.
To take part, please scroll down the page and click on the "Submit" button which will open the questionnaire.
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:
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.
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.
Thanks for all your help and patience, it is really appreciated.
Communications & Information Officer
Telephone: 0300 999 0303
Text number: 07480615478
Health from the Bottom UP: A great detox programme that can help to regenerate your life and cure your toilet woes
Dr Alyssa Burns-Hill has published a new book about gut health.
Health from the Bottom Up is a short, practical book that will explain why your gut health is so important and how regular enemas (rather than expensive colonic irrigation) should be part of your life. Good housekeeping should apply to your body as well as your home.
It’s a Kindle version and it’s free for the next few days so take advantage of this offer quickly!
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:
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
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.
NHS England wants patient members in Clinical Reference Groups - Apply Now!
The National Institute of Health in the USA which is the body that grants funds for public research into ME/CFS has put out a "Request for Information: Soliciting Input for New Research Strategies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)"
They are asking for ideas from individuals as well as bigger groups. The response date is by 24th June. If you have any experience of LDN for ME/CFS as a user or prescriber please send an email to [email protected]
Your input would be invaluable.
The request can be found at https://grants.nih.gov/grants/guide/notice-files/NOT-NS-16-024.html
NHS England wants patient members in Clinical Reference Groups - Apply Now!
NHS England is looking for applications for patient members in their CRGs
Deadline: Tuesday 21 June 2016
They will be appointing three patient/public members to each of the 42 Clinical Reference Groups (CRGs) in Specialised Commissioning – 126 posts in all. Many of you will have been involved in these previously, but need to reapply to be on groups by the 21st June.
If you have not been involved in a CRG before, we would highly recommend that you apply to the appropriate group and give patients the voice they need at NHS England.
CRGs are groups combining the experience of clinicians, commissioners, patients and public health experts to advise NHS England on the provision of specialised services. CRGs provide advice on the development of service specifications, commissioning policies and opportunities for innovation and service improvement.
The deadline to apply for all positions is Tuesday 21 June 2016
Clothes for Charity
Thyroid UK has been informed that Clothes for Charity has gone into liquidation. If you are collecting any clothing for this company in aid of Thyroid UK, I am afraid the bag will not now be collected.
If you have another worthy cause for your clothing please organise for your clothing to be collected by them. For example, the British Heart Foundation collect clothing -
We are sorry for any inconvenience this has caused you.
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/
Thyroid UK Discount with Revital Ltd
Since 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.
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.
That's Solent TV
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:
Thyroid UK Submission to Scottish Parliament Petitions Committee
Thyroid 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 see the video of the meeting go to:
To read other submissions and the transcript of the meeting go to: www.scottish.parliament.uk/GettingInvolved/Petitions/PE01463
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.
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:
LDN 2016 Conference (Live Stream)
The LDN 2016 conference is taking place in Florida on 19th - 21st February.
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 [email protected]
By purchasing the live stream option you can:
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.
BMJ Looking for Patients to Review Articles
The BMJ has committed to improving the relevance and patient centredness of its research, education, analysis, and editorial articles.
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:
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.
Patients Needed to Review NICE Content
Clarity 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:
Thyroid UK is putting together a team of people who are looking for
Mucky 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.
To register and join Team Thyroid go to: http://www.muckyraces.co.uk/mucky-510
You can invite friends to join you in the race too!
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!
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).
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.
An Article in The Lancet from Thyroid UK Advisors
Of rats and men:
Johannes W Dietriche, John E M Midgley, Rolf Larisch, Rudolf Hoermann
The full text is available to read here:
A New Article on TSH by Thyroid UK Advisors is Published
Homeostatic 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
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.
EasyFundraising App Now Available
Easyfundraising 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!
If you work in a company, please think about asking them if they will use easyfunding when they purchase their stationery etc.
T-Shirt Campaign for
To kick things off, we have launched
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.
The quite simply lovely Alan Gardner is running a new
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!
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.
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! :)
Craft Day Fundraising Event
Sunday 18th October at
Join 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: [email protected] for payment details
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!
On 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: [email protected]
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:
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.
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!...........
Invitation to take part in a
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.
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:
Patients’ Experiences Survey (Clinical Trials)
The National Institute of Health Research, the European Patients‘ Academy on Therapeutic Innovation (EUPATI-UK) and the International Society for Pharmaceutical Engineering (ISPE) are conducting a survey about participants’ experiences in clinical trials. If you have participated in a clinical trial your opinions are very important and will help improve clinical trial participants’ experiences.
Your responses are confidential. The questionnaire may be completed on your behalf by your carer/representative.
Taking part in this survey is voluntary and any information you submit will be anonymous. Published reports will NOT contain any information that identifies an individual and results will be anonymous
Here is the survey link https://ispe.co1.qualtrics.com/SE/?SID=SV_e8TmdgJy5kXXJNH
If you want to know more about the work of the partners institutions supporting this survey, ISPE, NIHR, NHS and EUPATI follow these links:-
Living with Medicines Survey
A revised version of the Living with Medicines Questionnaire©, which asks people about what it is like to use regular long-term medicines is now being conducted at Medway School of Pharmacy, in Kent by a PhD student.
It is thought that the findings will support the Medicines Optimisation agenda developed by the Royal Pharmaceutical Society, whose objective is to enhance patients’ experiences of care (and medicine use).
If you are taking prescribed medicines regularly, please think about completing the survey. The survey is anonymous.
To take the survey please go to:
Are You Tired of Being Tired? Join the Abundant Energy Summit
Register for the free summit and receive four free gifts which includes a video entitled, “Is Gluten Stealing Your Energy?” and an e-book, “Gluten Sensitivity, Chronic Fatigue and Autoimmune Disease” both by Tom O'Bryan, DC.
The summits are free during the period 24th – 30th August and there will be an option later to buy a digital download of all 30 hours.
For more information and to register go to: https://fn235.isrefer.com/go/summitreg/lynmynott/
AllTrials Campaign Launches in US
You may have heard about the AllTrials campaign in the UK, one of the campaigns run by Sense About Science UK, which is calling for all health research trials to be registered and reported.
The campaign has been running in Europe for a while but now, excitingly, it has now been launched in the US too.
50 patient support groups, medical societies, universities and consumer groups came together to launch the AllTrials campaign in the US and to say:
“We are calling on everyone in our sector to join us in supporting the AllTrials campaign. Hundreds of thousands of patients have taken part in clinical trials which have never reported results. For every day that passes, more information is at risk of being lost forever. We have to make every clinical trial count. Join us today.”
Campaign co-founder Dr Ben Goldacre explains: “Patients want the treatments that are best for them. This needs good quality evidence on what works. Unfortunately, we now know that around half of all clinical trials, on the treatments we use today, are withheld from doctors, researchers, and patients. This makes a mockery of our efforts to make truly informed decisions. It also puts the reputation of the entire medical profession—and pharma—on the line.”
“We provided our bodies, our tissue samples, our data,” says patient activist AnnaMarie Ciccarella. “I’ve heard the same sentiment expressed many times from patients in clinical trials, ‘This may not help me, but it may help another person.’ It’s time to honor that sentiment.”
“Imagine there was an election,” says Steven Woloshin MD, a professor at the Dartmouth Institute for health policy and clinical practice. “Would you trust the results if only half of the votes were reported? Imagine if the winner of the election was the one who decided which half of the voting was reported? That would be crazy, but that’s what the situation is when trials are not reported.”
Since 2013, AllTrials has won support from almost 600 patient groups, professional societies, and academic institutions, and 85 thousand members of the public. The global campaign now represents 500 million patients, and it has helped change the law in Europe so that, starting in 2016, all drug clinical trials will be publicly registered and their results reported.
Last week AllTrials announced that pharmaceutical investors representing more than $3.8 trillion in assets are supporting the campaign.
For more information about the US launch go to: http://www.alltrials.net/news/usa-launch/
For more information about Sense About Science USA go to: http://www.senseaboutscienceusa.org/alltrials/
If you would like to sign the petition on behalf of an organisation, email your organisation’s logo and a short statement to [email protected].
TABLET (Thyroid AntiBodies and LEvoThyroxine) trial
Thyroid antibodies are associated with miscarriage and pre-term births. TABLET is a large double blind placebo controlled trial to be run across approximately 20 UK sites.
This trial is testing the hypothesis that the taking of a small (50µg) dose of thyroxine by euthyroid women aged between 16 and 40, with thyroidperoxidase (TPO) antibodies, before and during pregnancy, will increase their chance of delivery beyond 34 weeks of their pregnancy.
Recruitment will be taking place in miscarriage clinics and infertility clinics in hospitals in England and Scotland.
They will be asking women who have miscarried, and plan to be actively trying to conceive within the next year to have a screening blood test for thyroid antibodies. Women who are being treated for infertility will also be asked to be screened. Women who have positive TPO antibodies with normal thyroid test results will be asked to consent to be randomised into the trial.
If you, or anyone you know, would like to take part in the trial, contact the TABLET team on 0121 4159111 or email [email protected]
For more information go to: www.birmingham.ac.uk/TABLET
Yellow Card Scheme App
A Yellow Card smartphone app has been launched for people to report problems with medicines.
The Yellow Card Scheme monitors the safety of UK medicines and act as an early warning system to identify potential side-effects and adverse reactions of both prescription and over the counter drugs.
Hypothyroid Patient Experiences Survey
Closing date 9th August 2015
Thyroid UK has been working on an important new project over the past couple of months and we are now ready to let everyone know about it.
We were invited by the Scottish Government to work with them on a listening exercise to learn more about patients' experiences in respect of the diagnosis and treatment of hypothyroidism.
The Scottish Government were asked to look into how patients were diagnosed and treated by the Scottish Parliament Petition Committee under the petition lodged by three Scottish petitioners.
Two of the petitioners stood down leaving Lorraine Cleaver as the only petitioner still involved - PE01463: Effective thyroid and adrenal testing, diagnosis and treatment.
The listening exercise is taking place via a survey that will be placed onto the Thyroid UK website, our HealthUnlocked forum and our Facebook and Twitter pages.
It will also be sent to all Health Boards in Scotland and Wales, the Northern Ireland Health and Social Care Trusts and all Clinical Commissioning Groups in England via their twitter pages so that more patients can access the link.
It is well known that 5-10% of patients (possibly more) do not recover fully on the standard medication given for hypothyroidism and we hope that the results of this survey will give some clues as to why this is and subsequently lead to a change in the way thyroid disease is diagnosed and treated in the UK.
We are asking questions such as how long patients had symptoms for before being diagnosed; how many times did they visit their GP before diagnosis; how much are patients spending on private consultations and were patients refused certain thyroid hormone medications even though they made them better.
The survey is open to anyone who has hypothyroid symptoms residing in the UK (excluding the Channel Islands due to not using the NHS system) and is completely anonymous.
The survey takes approximately 15 - 20 minutes to complete and participation will contribute to improving care and support for people with thyroid disease across the whole of the UK.
Thyroid UK is grateful to Wicked Minds Healthcare Consultancy and Healthbox360 for their strategic advice on the content and flow of this survey.
Please participate in this survey and help us spread the word by placing the link on any thyroid forums, facebook and twitter pages you go to.
You can also help by downloading the Poster to place in your doctor’s surgery or endocrinologists clinic.
You can download the poster here
For more information about this petition please go to: www.scottish.parliament.uk/GettingInvolved/Petitions/PE01463
To participate in the survey please go to: www.surveymonkey.com/r/JBD52TV
Let’s make this survey a successful one!
TV Programme - Mystery Illness / Medical Condition
Tigress Productions (www.tigressproductions.co.uk) are producing a new eight part series for a terrestrial broadcaster and are looking for people to take part.
They are looking for people who have a mystery illness or condition that's proving impossible to diagnose.
If we could get thyroid disease mentioned in this programme it may well move the campaign for better diagnosis and treatment forward!
Do you have a mystery illness or medical condition that's proving impossible to diagnose?
Have you tried a long series of medical treatments and finally been cured?
Tigress Productions would like to speak to people with medical mystery experiences for a new TV documentary series.
Please call 0117 933 5654 / 0117 933 5609 or email [email protected] for more information.
Please Vote for The Vaccine Research Trust
The Vaccine Research Trust (founded by the late Dr Gordon R B Skinner MD, DSc, FRCPATH, FRCOG), is raising funds to carry out thyroid research, which will help many of us to get properly diagnosed and treated.
Diagnosis and Treatment of Chronic Fatigue Syndrome
As part of Biocare's Summer 2015 Advanced Education programme, Dr Myhill is to deliver a seminar detailing her views on the causes of CFS, the assessment techniques she uses, and her unique 'sustainable medicine' approach to treatment.
For more information, click here to download the PDF flyer
The Health eHeart Study
The Health eHeart Study is run by a team of physicians and researchers who want to investigate questions about heart health such as “Can heart disease be predicted based on measurements, behaviour patterns (sleep, diet, activity) and family and medical history?” and “Can we determine what causes episodes of atrial fibrillation?” amongst many others.
They want to see if new and more accurate ways can be developed to predict heart disease, understand the causes of heart disease (including heart attack, stroke, heart failure, atrial fibrillation, and diabetes) and find new ways to prevent it. They also want to create personalized tools you can use yourself to forecast when you might develop heart disease or, if you have it already, when you might be getting worse.
They need help to do this and they have therefore devised an innovative study which will enable them to answer these questions.
Other things you may be asked to do is to collect data at home such as weight, blood pressure etc., use technology (they may send you a sensor to wear or ask you to add a gadget to your smartphone), download apps and especially inform them if you go into hospital. The study will be a long-term one, possibly years so you need to be committed.
The first survey is expected to take 30-60 minutes but you don’t have to do it all at once. You can pop out and pop in again.
We think this survey is very important and urge you to participate, which you can do by clicking here: www.health-eheartstudy.org
Healthwatch Trafford ME/CFS Survey
Healthwatch Trafford have launched a major survey of ME/CFS services.
It's a 45 question survey asking patients to give brief illness histories and then answer questions about how well they have been dealt with by their local health services - particularly at GP and hospital levels.
The survey can be done online or printed off and returned by post. Although the survey is primarily for people living in the Trafford area of Greater Manchester any questionnaires completed by people living outside the area may be shared with other Healthwatches. The project is supported by the Patients Association.
Thyroid UK suggests that everyone fills it in so that word can spread about how patients with ME/CFS are dealt with by the medical profession.
It can be filled in online here:
Dr Louise Marry, a practising osteopath for 15 years, has set up a survey for thyroid patients. Dr Marry was 26 when she started to feel like death warmed up so to speak. From that day forward she had such a big struggle and battle with the doctors try and figure out what was wrong with her. No one wanted to listen to how she was feeling as her TSH results were coming back normal.
Dr Marry wants to eventually publish a book with her findings and her knowledge which has come from both her own experience in having Hashimotos and the patients she has treated as a Doctor in Osteopathy. With this survey she wants to see how people around the world with the disease are feeling and what is being considered by doctors and/or specialists.
Dr Marry practises in Australia.
If you have hypothyroidism and want to complete the survey, please go to: www.surveymonkey.com/s/7B7RP7Q
Thyroid UK's E-petition closed on 30th March with over 12,000 signatures.
A HUGE THANK YOU to everyone who signed the petition and helped to promote it far and wide.
Scottish Thyroid Petition Update
Scottish Parliament Petition - PE01463
Lorraine Cleaver, Scottish Parliament Petitioner, wrote again to the Scottish Parliament on 19th November. In her letter she quotes the Royal College of Physicians in their response to her "Ask For Evidence" request:
"The RCP's guidance is based on the opinion of an expert panel which was temporarily formed for this purpose. The evidence they used to form their individual opinions has not been collated and therefore the RCP cannot provide an evidence list."
You can see her letter here:
On 25 November 2014 there was a further meeting where the Committee agreed to invite the Scottish Intercollegiate Guidelines Network to consider developing a guideline and to consider a paper by the clerk at its next meeting. You can watch a video of this meeting for approximately two more weeks. The discussion about this petition starts at approximately 33 minutes:
Thyroid Federation International - Statement
The standard treatment for hypothyroidism is levothyroxine (T4). In the majority of people with hypothyroidism levothyroxine reverses their symptoms. Levothyroxine has a long track record of safety and treatment can be monitored reliably by blood tests. Because of the long duration of action, levothyroxine can be taken once daily. Levothyroxine is a "pro-hormone" and is converted in the body to T3, the really active thyroid hormone, which tissues and cells respond to.
Thyroid Federation International is concerned that many people with thyroid disease feel that their symptoms are not well controlled. The information available in the media on this topic may be confusing for patients. It includes suggestions of using large doses of levothyroxine, T3, combinations of levothyroxine and T3 or desiccated pig thyroid.
Thyroid Federation International believes that patients should be empowered by being well informed about their condition and the various treatment options and should take an active part in decision making about their treatment. Patients must also be well informed about potential adverse effects of treatment options.
People who remain symptomatic on thyroid hormone replacement are an important and medically challenging group who deserve to be taken seriously and managed holistically. Within this group there are individuals with other medical diagnoses or who have never achieved optimal thyroid hormone replacement with levothyroxine; alternative means of thyroid hormone replacement may provide temporary subjective improvement in symptoms, at the expense of long-term harm to their health and may delay the diagnoses of other conditions. Many symptomatic patients who have tried different thyroid hormone replacements fail to improve, which is indicative of the fact that this approach is not a panacea for people who are in that unfortunate category. For some people a trial of combination of T4 and T3 may prove to be beneficial. Thyroid Federation International endorses the European Thyroid Association guidelines on this topic (www.karger.com/Article/Pdf/339444) which provides a sound, responsible, safe and holistic framework (see Appendix 1).
May 25th, 2014
Dr Petros Perros, Newcastle
Click here to download the full document (which includes the appendix and reference).
An important new paper published in Clinical Endocrinology Journal!
Thyroid UK advisors Rudolf Hoermann, John E.M. Midgley and Johannes W. Dietrich have just had a new research paper published in the Clinical Endocrinology Journal.
Dr John Midgley tells us:
Homeostatic equilibria between free thyroid hormones and pituitary thyrotropin are modulated by various influences including age, body mass index and treatment
Article first published online: 7 JUL 2014
Design and methods
To view the above summary online, go to: onlinelibrary.wiley.com/doi/10.1111/cen.12527/abstract
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