Welcome to our website. It's always a work in progress and your feedback is welcome
     

 

extra!

Recent News

3/08/2018

Two New Testing Companies - Thriva and Smartblood

Thriva offers a Comprehensive Thyroid Test which includes TSH, T4, TT4, T3, TPO and TgAb. It also analyses vitamin D, vitamin B9 (folate), vitamin B12 and ferritin.

Click here for more information

Smartblood Laboratories provide IgG Antibody Test Kits that can help discover food intolerances which may cause or exasperate symptoms such as IBS, bloating or brain fog.

Click here for more information

 

25/06/2018

House of Lords logo

Debate in House of Lords 20.6.18

As you may know, Lord Hunt of Kings Heath led a regret debate in the House of Lords on Wednesday 20th June, which went really well.

What you may not know is that the person who actually first brought the whole problem to the attention of Lord Hunt was a lady called Kath Bell who was a colleague of Lord Hunt and who had been in touch with me for a little while. Kath has hypothyroidism and has had problems with treatment, like so many of us.

Lord Hunt was very interested in the plight of thyroid patients and contacted Lyn about having a meeting and the rest, as they say, is history.

I travelled to London on 20th June and met up with Kath and we travelled together to meet with Lord Hunt prior to the debate.

We were taken into the House of Lords dining room where we had tea and went through the final draft of Lord Hunt’s speech.  One of the things that he was shocked about was the fact that the Brighton and Hove Hospital NHS Trust were telling patients in an information document that the only way they could access T3 was via a private endocrinologist which goes completely against the ethos if the NHS and I’m so glad that he used this in his speech.

We discussed a few more things and then he gave us a tour of the House of Commons, which was very interesting and very good of him to do.  He then took us to the debating chamber and went off to write the final document.

As we listened to the debate we were so pleased to see the number of other members joining the debate, two of whom had thyroid disease and could really relate to our plight.

After members had spoken, the Lord O’Shaughnessy then stood up and started to speak.  I was very pleased to hear him say, “I want to touch on one other area that my noble friend Lord Borwick described, and that is the poor understanding of that group of the population who are not able to turn T4 into T3. He mentioned that there might be a genetic factor and I would be interested in pursuing that further. Clearly, some very interesting work on rare diseases is going on in the NHS at the moment through the 100,000 Genomes Project. This might be a qualifying illness where the conversion does not take place naturally, and that might be something that we can pursue. I will take that up with him separately.”

At the moment the DIO2 genetic test is not done on the NHS and this may now mean that more research will take place into one of the reasons patients cannot convert very well as well as other reasons for non-conversion.

After the debate was over, he said a quick goodbye with promises for meeting up again once he had mulled over what the next step could be.  I am pleased to say that he contacted me the very next day informing me of his next steps and as soon as I know this has been confirmed, I will let you know.

After the debate we met up with Lorraine Williams from The Thyroid Trust and a patient called Patsy, both of whom I’d had contact with previously.

Photos were taken outside the House of Lords and we then went out for a meal to discuss everything.   We were so excited because the debate brought out all of our concerns and it seems that the Lord O’Shaugnessy took them very seriously.

Thyroid UK and ITT held a meeting with NHS England to discuss the ambiguity of their decision and it was agreed that Thyroid UK and ITT would send them a report of the problems thyroid patients are facing along with some recommendations.  they were going to discuss this with their clinical working group.  We are still awaiting a response but I will be sending the Hansard of the debate and mentioning something else the Lord O’Shaughnessy said, “Tonight, I will commit to pursuing further with NHS England ways in which they can clarify to CCGs the guidelines setting out the circumstances under which liothyronine should be prescribed, including looking at whether greater clarity on the criteria for appropriate patient usage is merited. I will also inform the House—through a letter to the noble Lord, Lord Hunt, a copy of which I will place in the Library—about the progress that we are making on the regional medicines optimisation committee.”

I actually feel more optimistic today than I have for a couple of years and I’ll keep you informed of progress.

Lyn Mynott, CEO, Thyroid UK

Hansard (Hansard is a substantially verbatim report of what is said in Parliament)
for this debate can be found here:
hansard.parliament.uk/lords/2018-06-20/debates/5A689F14-D2F8-4796-8732-CBD0E3B3E508/BrandedHealthServiceMedicines(Costs)Regulations2018

Lorrain, Kath and Lyn

Photo: Lorraine Williams, The Thyroid Trust; Kath Bell, Lyn Mynott, CEO, Thyroid UK

 

13/06/2018

Debate in House of Lords

Lord Hunt of Kings Heath has secured a Motion to regret - Branded Health Service Medicines (Costs) Regulations 2018 on Wednesday 20th June in the House of Lords at around 7pm.

calendar.parliament.uk/calendar/Lords/All/2018/6/20/Daily#topSpeakers21229

The actual Motion is:

Lord Hunt of Kings Heath to move that this House regrets that the Branded Health Service Medicines (Costs) Regulations 2018 do not propose any action to be taken in respect of the high cost charged by Concordia and other companies for the drug Liothyronine for the treatment of hypothyroidism thereby depriving patients of the use of that essential drug, and further do not put an end to the practice of a growing number of Clinical Commissioning Groups refusing to follow the latest guidance from NHS England on making that drug available to NHS patients via referral to thyroid specialists (SI 2018/345).

Lyn Mynott will be having a meeting with Lord Hunt prior to the debate and will also be attending the debate.

We will keep you informed of what happens.

 

8/06/2018

Updated List of Thyroid Hormone Replacements

Thyroid UK has compiled a new, comprehensive list of thyroid hormone replacements. The list includes all currently available UK prescription thyroid medications, and many of those available in other countries such as the USA and Germany.

You can download this document as a PDF from the medications page here

 

29/05/2018

Scottish Women's Convention Survey

The Scottish Women's Convention have designed a aurvey on women's health. They want to build a comprehensive overview of diagnosis, treatment and support for a range of health issues which are specific to women and their survey includes thyroid disease.

The SWC will also be undertaking roundtable discussions with groups of women throughout Scotland in order to hear first-hand their experiences of specific health issues including, but not limited to, breast and cervical screening; mesh implants; thyroid health and mental health. A conference will also be held in Glasgow on Saturday 21st July to further explore key topics.

To complete the survey go to: www.surveymonkey.co.uk/r/5T96D89

To see information about what the Scottish Women's Convention does and for more info about the conference go to their website: www.scottishwomensconvention.org/

 

 

25/05/2018

Thyroid UK and GDPR

The new European-wide data protection law applies from Friday 25th May 2018

Thyroid UK has updated it's Privacy Policy to reflect the changes required by the European General Data Protection Regulation (GDPR).

We recommend that you read the updated version of our Privacy Policy.

 

15/05/2018

UK Parliament logo

Debate in Parliament on Hypothyroidism

An adjournment debate has been tabled by Vince Cable MP, Leader of the Liberal Democrats for Monday 21st May at 2.30pm, so we have designed a template email that is shorter than the other one and includes the debate info.

Please click here for the template

 

15/05/2018

Patients needed for training film

Busy Doctors, who specialise in medical education videos for junior doctors, are making some films about hyperthyroidism (aka thyrotoxicosis). They are looking for patients to take part in the making of these films on 11th June.

They need patients who have recently been diagnosed with hyperthyroidism and who are willing to be filmed with a consultant NHS physician. The patient will be required to talk about the history of her/his symptoms and issues that she/he had and how it has affected her/his life.

You will be paid £200 for an hour of your time for the filming and your travel expenses (if you live in within 100-miles of London). To get an idea of what the filming will be like, you can see some of their videos here: www.clinicalskillspro.com (scroll down the page, click on "free trial" and press the play button underneath the wording, "Clinical Skills Pro"

If you are interested in helping to train future NHS consultants in hyperthyroidism so that they can better understand and treat patients and if you are available on 11th June, please contact Ingrid Gaza on ingridgaza@gmail.com

 

 

 

4/05/2018

NHS

New One-Stop Shops Offer Promise for Thyroid Cancer Diagnosis

Early this year, the NHS rolled out new one-stop shops in several different areas of England, meant to offer diagnostic testing in a single location.

The centres are specifically designed to improve the waiting times for patients who are suspected to have cancer, even if their symptoms are vague at first. With the trial of these diagnosis centres within specific NHS hospitals, GPs now have the ability to refer patients so that a definitive diagnosis can be made within as little as one day.

While some patients will need to have further testing completed, early diagnosis is on the horizon for many individuals throughout the UK.

The diagnostic centres are only in trial stage currently, but they follow the path of some successful shops in nearby countries.

To continue reading, click here

 

1/05/2018

Griffin Law logo

The Griffin Law Foundation Donation

Each month the Griffin Law Foundation - www.griffin.law - meet to discuss local charities and causes that would benefit from their funding.

Isobel Chamberlain, a staff member of Griffin Law, put Thyroid UK forward as a recipient because of the help she received from our Kent Support Network helpline and we were chosen!

We are extremely grateful to the Griffin Law Foundation for their very generous donation of £500.

This donation will really help us in the work that we do to help patients with thyroid disease and related disorders, such as helping patients who have had their vital T3 medication withdrawn due to NHS cuts.

It will also help us in the day to day help that our support groups give and the many queries that they receive

Thank you Isobel and Griffin Law Foundation!

 

1/05/2018

Thyroid UK E-News

April 2018 E-News

Thyroid UK publishes regular E-News that you can now access here.

If you want to make sure you don't miss one, sign up by sending an email to mailinglist@thyroiduk.org and putting in the body of the email, "Please add me to your mailing list."

 

20/04/2018

thyroid

Trial of New Graves' Disease Medication

The Medicines Evaluation Unit require patients with Graves' disease for an ongoing study.

This study will require approximately 13 visits to the unit and will be spread over 15 to 18 weeks.

Compensation will be paid on completion of the study for your time, travel expenses and to compensate for any inconvenience.

If you would like to find out more about this study please call the MEU Volunteer Services Team on 0800 655 6553 and quote study MEU 15/304, text MEU to 82727
or visit rewardingresearch.co.uk/OnlineRegistration.aspx

MEU

 

18/04/2018

CHANGE OF LEVOTHYROX (EUTHYROX / EUTIROX) FORMULA IN FRANCE

The Association Française des Malades de la Thyroïde (AFMT) have published information regarding the reformulation of the Merck levothyroxine product, Levothyrox.

Many thousands of patients have experienced side effects from the new formulation and are informing thyroid patients in other countries to be aware that Merck are going to change the formula in other European countries soon.

Patients had their TSH tested to check to see if it had changed on the new formula and in most cases, it hadn't changed. Typically, the FT4 and FT3 was not checked.

Although we don't have the Merck brand in the UK, this situation is worrying in case other pharmaceutical manufacturers decide to change the formula here.

For more information read the report by the AFMT who are fighting hard to rectify this situation.

 

16/04/2018

BBC Medical Quiz Show

BBC Two is screening a brand new medical quiz show this summer which pits teaching hospitals from far and wide against each other.

Hosted by Jo Brand the junior doctors will tackle an array of rigorous questions ranging from diagnosing a patient's symptoms, prioritising cases in a mock A+E department and getting stuck in with their chosen specialism.

The makers of the show, Shiver, are looking for patients to take part in the show. They will be required to walk onto the set and give a list of symptoms for the junior doctors to discuss. The doctors will then ask relevant questions to try to guess your condition

The show will celebrate the 70th anniversary of the NHS and it will also raise awareness of the conditions they are discussing. The conditions they are looking at for this show are hyperthyroidism, Crohn's disease, endometriosis, acute glaucoma, coeliac disease, gallstones, type II diabetes and angina.

Filming will be in the first week of May in central London and all travel expensies will be paid. Refreshments will also be provided.

This is the perfect opportunity to raise awareness of all these conditions so why not think about it. It will be a fun day out!

Applicants must be over 18. If you are interested contact Shiver via email at jrdocs@shiver.tv or call them: 0207 157 3807
To see more information go to:
bbc.co.uk/mediacentre/latestnews/2018/britains-best-junior-doctors



3/04/2018

Scottish Parliament logo

Report on petition PE1463:
Effective thyroid and adrenal testing, diagnosis and treatment,
1st Report 2018 (Session 5)

Campaigners Lorraine Cleaver, Sandra Whyte and Marian Dyer first brought their petition to the Scottish Parliament in 2013. There have been various meetings over the years to discuss the problem patients have informed them of their struggle to access effective thyroid and adrenal testing, diagnosis and treatment.

The stories of patients really made the Petitions Committee think about what we are going through. Committee convener Johann Lamont said: "The experiences brought to light by this petition are simply unimaginable."

The Public Petitions Committee of the Scottish Parliament have written a report where they have made various recommendations. The recommendations include:

  • The Committee considers it essential that professional bodies continue to work closely with patient support groups and individuals, such as the lead petitioner, so that greater awareness of guidance and patient experience is promoted. The Committee recommends that the Scottish Government ensures bodies within Healthcare Improvement Scotland also contribute to this work and that, in responding to this report, it provides an outline of how that contribution can be made.

  • The Committee recommends that the Scottish Government brings the evidence received on the variation in thyroid testing in Scotland to the attention of the Scottish Clinical Biochemistry Managed Diagnostic Network. In doing so, the Committee suggests that consideration should be given to moving towards the development of a single, national protocol for testing, along with an accompanying process for issuing consistent advice to primary care practitioners for use when considering and interpreting diagnostic tests for suspected hypothyroidism.

  • In the Committee's view, better means of capturing patient experience need to be developed so that clinicians can deliver the Scottish Government's aim to promote 'realistic medicine' that ensures the most appropriate treatment is given to patients. In this regard, the Committee recommends that the Scottish Government should develop guidance for listening exercises to ensure that they are designed in an impactful way and obtain best value for money.

  • This includes ensuring that the views of the relevant target group can be extrapolated from the results, for example, ensuring that Scottish patients' views can be clearly identified from the results where participants who are not Scottishdomiciled also take part. Listening exercises should also be designed to capture 'anecdotal' evidence in a way that can meaningfully inform the development of future clinical studies, clinical guidance or public policy (whichever is relevant to its aims). It is also recommended that the Scottish Government ensures that the participants receive feedback on the outcome of the listening exercise, including any specific action points that will be taken forward.

  • Thyroid conditions can have a significant impact on the lives of those who are diagnosed with having them. While the majority of patients with hypothyroidism will be diagnosed and treated successfully using the standard treatment and testing regimes, there is a proportion of patients for whom this is not the case. This petition has raised the profile of that cohort of patients who either do not respond to the standard treatment, or who do not respond to the extent that they feel sufficiently well. It is important that these patients are believed when they report ongoing symptoms to clinicians.

  • However, the Committee recognises that there are differing views as to the evidential basis of both the current system of diagnosis, testing and treatment and the changes that are called for in the petition. The Committee recognises that discussions about these differing views will, and should, continue. This report sets out the Committee's conclusions and, where appropriate, makes recommendations for consideration by the Scottish Government and other decision makers. The Committee looks forward to receiving responses from these bodies. Public Petitions Committee

Click here for the draft report

We really hope that clinicians and the British Thyroid Association sit up and listen!

 

7/03/2018

Participants Needed for Research - Childhood Trauma and Autoimmune disease

Debbie Akinfe, a Masters Student in Psychology at the University of East London is undertaking a research project that aims to explore the possibility of a link between childhood trauma to autoimmune and inflammatory long-term conditions in adults. 

Past and present research on the outcomes of adverse life events in childhood frequently focus on mental health and associated conditions in adulthood such as depression, ADHD, PSTD, OCDs, autism, schizophrenia and psychosis. 

However, the impact of childhood adverse life events on people’s physical health and particularly the existence of a potential connection to rheumatic/autoimmune disease in adulthood remains to be investigated. 

Information from this study could help develop appropriate support and tailored interventions for people with autoimmune/rheumatic diseases in coping with their conditions.

In addition, it could inform the design and implementation of potential preventative measures for people who have experienced childhood adverse events and have a family history of autoimmune/rheumatic disease but have not received a diagnosis yet.

The hope is to recruit a significant number of people (more than 100) who suffer from any autoimmune/rheumatic disease which could provide a framework of their childhood experience and how it may affect their experience of living with an autoimmune/rheumatic disease in adulthood.

The study involves completing online questionnaires and should take approximately 30 minutes. It is anonymous and all data will remain confidential.

If you are interested in participating, please click here:  https://uelpsych.eu.qualtrics.com/jfe/form/SV_9zOsqn4OreYvPBr

If you have any queries, please contact Deborah - u1409732@uel.ac.uk


 

4/01/2018

frontiers in endocrinology logo

Important New research article by Thyroid UK Advisers

Thyroid UK advisers have had another brilliant paper published which shows that the current way of treatment patients is wrong and should be discarded for a better way.

The article is entitled Recent Advances in Thyroid Hormone Regulation: Toward a New Paradigm for Optimal Diagnosis and Treatment and can be found here:

https://www.frontiersin.org/articles/10.3389/fendo.2017.00364/full

The terminology is a bit tricky but Dr John Midgley, one of the authors, has said that in layman's terms, the article says:

1) Everyone is an individual and unique in how their thyroid works, how that interacts with the body converting T4 to T3, how efficient T4-T3 body conversion is and how sensitive the body's cells are to T3. 

2) Because the thyroid is no longer working, its direct T3 production that helped you keep well is no longer available, so if you take T4 only the body conversion has to work harder to produce the T3 you require. This requires more T4, and this suppresses your TSH. Thus TSH levels in health are not appropriate to T4 therapy. With T3 only or combo this is not so true but TSH can still be misleading.

3) FT3 must be measured in whatever therapy to control your level of health and response.

4) When you become ill and go on to a particular therapy (T4 only, combo or T3 only) for a long time, your body adapts to the treatment.

Many patients are now being asked to come off T3/NDT and move back to levothyroxine and Dr Midgley feels this is wrong. He says
"However, changing the treatment then is dangerous, because your body won't respond quickly if at all. This is called allostatic epigenetic transformation, where your gene readouts have been permanently altered from normal health and can't easily be restored back again exactly to what they were. This often happens if you become critically ill close to death and partially recover. If your doctor simply thinks that you can change things early and quickly respond, then this is a dangerous, wrongheaded thing to suggest and has been scientifically condemned and could cause you permanent harm."

Please share this paper far and wide. Take it to your GP/endo/CCG etc. if you are being pressured to come off T3.

 

30/11/2017

NHS England logo

NHS England gave its decision at a board meeting this morning about whether liothyronine will be deprescribed by the NHS:

Liothyronine
15. Of those respondents who either agreed or disagreed with the recommendations, only 16% agree that CCGs should be advised that prescribers in primary care should not initiate Liothyronine for any new patients.

16. The main recurring theme – particularly from patients and organisational bodies - is that this is an effective treatment which can, in the appropriate circumstances contribute to patient wellbeing, quality of life and condition management. The impact on particular cohorts of patients was also highlighted - notably those who are unable to take Levothyroxine-T4, or whose metabolic pathway is impaired in some way.

17. The joint clinical working group therefore recommended the prescribing of liothyronine for any new patient should be initiated by a consultant endocrinologist in the NHS, and that de-prescribing in ‘all’ patients is not appropriate, as there are recognised exceptions. The recommendation would therefore be changed to advise prescribers to de-prescribe in all appropriate patients.

Thyroid UK is not happy with the word "appropriate".
They have not explained who would be "appropriate" to remain on T3. The definition of "Appropriate" is very subjective and NHS England should have gone further and explained that patients who do not do well on levothyroxine should be given a trial of T3.

The section of liothyronine (starting on page 40) is very interesting and shows that not just thyroid patient groups wanted to see liothyronine continued.

I would like to say a big THANK YOU and WELL DONE to everyone who supported our campaign and who took part in the consultation.

Now is the time for patients who have been de-prescribed to go back to their GP/Endocrinologist and show them the NHS England decision and push for having it represcribed again. 

Patients who are not well on levothyroxine now need to push for an endocrinologist appointment for a trial of T3!

This doesn't mean that Thyroid UK will stop campaigning as we really want T3 to be tested as routine in all patients and trials of T3 given more readily.  Then, of course, there's the fight to get the price of T3 reduced!
You can read a transcript of the meeting here: https://www.england.nhs.uk/wp-content/uploads/2017/11/05-pb-30-11-2017-items-which-should-not-be-routinely-prescribed-in-primary-care.pdf

 

9/10/2017

Dr Sarah Myhill's new book

With the official release date of Dr Myhill's new book, "The PK Cookbook - Go Paleo-ketogenic and get the best of both worlds", fast approaching, here are the first two videos in a series of YouTube videos describing key aspects of the PK diet.

These YouTube videos have been done in collaboration with "Life The Basic Manual" - you can see LTBM's YouTube channel here: https://www.youtube.com/channel/UCAjyGSt8ZTQlpMyW0VuABig?spfreload=5

Here are the links and titles of the first two YouTube videos:

1--The Paleo-ketogenic Diet And Cookbook : How To Eat Your Way To Health https://www.youtube.com/watch?v=ikQZzBfzz70&feature=youtu.be 

2--A Quick Method for Making Delicious Paleo-ketogenic Bread https://www.youtube.com/watch?v=bjwjUXxELb0&feature=youtu.be

Dr Myhill on YouTube

 

9/10/2017

Parliamentary and Health Service Ombudsman Open Meeting 2017

This year, to coincide with our 50th anniversary, PHSO is hosting its first ever Open Meeting on Thursday 30 November.  Ombudsman Rob Behrens will welcome complainants, complaint handlers, stakeholders and members of the public to take part in an open Q&A and panel discussion, attend breakout sessions and hear from guest speakers.

The meeting will take place at the Manchester Conference Centre, Sackville Street, Manchester M1 3BB and is free to attend.

For more information about the event go to: https://www.eventbrite.co.uk/e/parliamentary-and-health-service-ombudsman-open-meeting-2017-registration-37492832070

PHSO 50 years logo

 

9/10/2017

Genetic Testing Interviews

Interested in research and want to help with a study on views about genetic testing?

Live in the northwest of England?

Patients and their families choose to take genetic tests for a variety of reasons. If you or a family member has experienced hereditary cancer you may have taken, or considered taking, a genetic test.

To help geneticists improve the help they offer, it is useful to better understand what is important to patients and families when they weigh up whether to take a genetic test.

Could you take part in an interview between now and Christmas?

If you would like to take part, you would be interviewed either at St Mary’s Hospital in Manchester, or at your home or other place of your choosing. Interviews will last less than one hour.

You would be asked to think about whether you might have a genetic test in imaginary situations. The researcher is also interested in receiving feedback about how the interview itself might be improved (e.g. could the wording be improved?).

To find out more and to volunteer, please read the information sheet or contact Martin Eden
by email: martin.eden@manchester.ac.uk
or by telephone on 07748 966 951.

Martin is a health economist and PhD student at the University of Manchester.

 

Thyroid Awareness Week 2017

30th September - 6th October


Man in purple topThyroid Awareness Week is held to raise awareness of the problems patients are facing in diagnosis and treatment of thyroid disease.

This year we have decided to run "Purple Mufty Day" again (also known as non-uniform day or dress-down day). 

We are asking people to donate £1 to Thyroid UK and wear something purple on Friday 6th October 2017.

You can wear purple tops, trousers, dresses, socks or shoes etc.  To really stand out you could wear a purple hat or fascinator!

Purple nails will really finish the outfit off!!

If you would like to hold a Purple Mufty Day, please display our poster at your place of work, collect the £1’s and send us a cheque or pay it directly into our bank (see details below).

You can take selfies and post them onto your Facebook, Twitter and Instagram pages and then share them with all your friends and family to spread the word!
Make sure you mention Thyroid UK and we can then share them too!

Please do ask your bosses and workmates to join us in this event. You never know, they may need us one day!

purple shoes

 

To pay funds into our bank:
Name of Account: Thyroid UK
Sort Code: 20-21-73
Account Number: 53682137

 

 

 

If you have any queries, please email: enquiries@thyroiduk.org

 

23/08/2017

T3 Campaign Car Sticker

Thyroid UK Launches

#T3 Campaign

Please help us fight this injustice!

Tell Me More

 

30/08/2017

Dr Renee Hyperthyroidism Vlog

Dr Renee Vlog

Dr Renee has now made an excellent VLOG all about hyperthyroidism on her YouTube channel. To watch it please go here: https://youtu.be/MbI3uFZcxq

 

 

18/08/2017

News from SENSE about SCIENCE
(AllTrials)

(Sense about Science - senseaboutscience.org - is an independent campaigning charity that challenges the misrepresentation of science and evidence in public life.) 

Dear AllTrials friends and supporters

Our review of the world’s largest pharmaceutical companies’ trial registration and reporting policies has been published in the BMJ. [Pharmaceutical companies’ policies on access to trial data, results, and methods: audit study] It is the first time anyone has systematically examined and compared published company policies on trial transparency. And it was not straightforward to do - company policies are often vague, ambiguously worded, internally contradictory and difficult to interpret.

We found:

  • Most of the largest companies, though not all, have some sort of publicly stated policy about registering and reporting results from current trials.
  • However, only around half of all the companies we looked at had policies that applied to trials carried out in the past.
  • Policies commonly fail to refer to trials on unlicensed treatments or to phase 4 trials. This means there is a loophole that thousands of trials may be falling through.

You can hear Ben Goldacre and Carl Heneghan talk about the process of auditing companies and what it means for trial transparency in the BMJ podcast.

What now?

From policies to practice: AllTrials is now able to identify the mass of unreported trials and over the next two years we will be pursuing them. We're advising anyone who is sitting on an unpublished trial to move quickly to get the results reported, before we get to it.

Best wishes

Síle Lane

Head of international campaigns and policy

AllTrials relies on donations from people like you. Donate to the AllTrials campiagn.

Sense about Science Because evidence matters

AllTrials logo

 

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)

 

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

 

17/02/2017

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

 

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!

 

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/

21/10/2015

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.

 

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