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Recent News

12/12/2017

Thyroid UK Holiday Closing

Thyroid UK Office will close on Wednesday 20th December 2017

We'll be back on Wednesday 3rd January 2018

Season's Greetings

 

12/12/2017

Holiday Closing – Genova Diagnostics

Christmas and New Year's Hours and Shipping Schedule

Hours

  • Monday, 25 December – Monday, 1 January - closed
  • Tuesday, 2 January - Reopen

Shipping

  • Please plan ahead so that all samples arrive at the laboratory on Wednesday, 20 December by 1pm
  • Please note that any samples received on 21 or 22 of December cannot be shipped. Genova will naturally do their best to stabilise any samples that are received on these days but cannot guarantee that all samples received will be tested due to varying stabilities on individual tests. 

We recommend that you call their customer service team on (0)20 8336 7750 to discuss the best time to collect samples and send to them during the Christmas period.

 

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