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Recent News

Thyroid UK Statement regarding
Coronavirus (COVID-19)

Thyroid UK have received enquiries about whether people with thyroid disease are at an increased risk of coronavirus (COVID-19).

We have checked with our medical advisers and have the following statement to make:

COVID-19 is a new virus that can affect your lungs and airways and cause various symptoms, the most common of which are a cough, a high temperature (fever) and difficulty in breathing.

In people with  weakened immune systems, older people, and those with long-term conditions like asthma, diabetes, cancer, heart disease and chronic lung disease the symptoms can be much worse. However, these symptoms are similar to other viruses such as a cold and the flu so having these symptoms does not necessarily mean you have the illness.

Doctors are not completely sure how the virus is spread but it is probably spread by droplets produced when an infected person coughs or sneezes and may be caught by touching a surface, object or the hand of an infected person. How long any respiratory virus survives will depend on a number of factors such as what surface the virus is on; whether it is exposed to sunlight; differences in temperature and humidity and exposure to cleaning products.

COVID-19 can be spread by close contact (within 2 metres or less).  It is not definite whether people with the virus who don’t have symptoms can infect someone else.

The incubation period is between 2 to 14 days so if a person remains well 14 days after contact with someone who has the coronavirus, they have not been infected.

At the moment, there is not enough evidence regarding people with thyroid disorders.  There have been papers written about COVID-19 but they do not discuss people with thyroid disease.

Although there is no reason to believe that people with thyroid problems are at any more risk from COVID-19 than people who are healthy, it will pay to be vigilant.  Wash your hands regularly and, as the Government has now advised, work at home if you can, don’t travel on public transport unless it is necessary.

Thyroid medications do not weaken your immune system.  Only immunosuppressants do this and those that are on immunosuppressants need to be extra vigilant.

The British Thyroid Association have published some excellent information which we recommend you read:

“The COVID-19 pandemic presents significant challenges to us all. The following statements regarding management of thyroid disease have been formulated to provide clinical advice to medical colleagues during this time: 

We hope you find them useful."

Thyroid UK also recommends that everyone follows NHS and government advice about reducing the risk of infection:

You should only leave the house for one of four reasons.

● Shopping for basic necessities, for example food and medicine, which must be as infrequent as possible.
● One form of exercise a day, for example a run, walk, or cycle - alone or with members of your household.
● Any medical need, or to provide care or to help a vulnerable person.
● Travelling to and from work, but only where this absolutely cannot be done from home.

You can find more information of this here:
https://assets.publishing.service.gov.uk/government/uploads/
system/uploads/attachment_data/file/874742/
Full_guidance_on_staying_at_home_and_
away_from_others__1_.pdf

This will keep a lot more people safe from the virus. 

There is a list of people who are classed as vulnerable and family and friends should keep away from them if they can.  If friends and family do visit you, keep at least two metres away.  Get them to leave food on the doorstep.  This list is as follows:

This group includes those who are:

More information about this can be found here where we are sure the list will be updated:

https://www.gov.uk/government/publications/
covid-19-guidance-on-social-distancing-and-for-vulnerable-people/
guidance-on-social-distancing-for-everyone-in-the-uk-and-
protecting-older-people-and-vulnerable-adults

Our advisers will be keeping us up to date periodically and we will be updating this statement when necessary.

For more information go to:

Stay safe everyone!

Date updated: 7.4.20 (V1.2)

12/02/2020

T3 Prescribing Survey Results

Together with our thyroid partners, we ran a survey in November 2019 to look into the prescribing practices of CCGs across England since the NHS England guidance was published.

The T3 Prescribing Survey Report has now been published and is available to read.
Please click here to download it

5/12/2018

Scottish Parliament

Update on Scottish Petition

Report on petition PE1463: Effective thyroid and adrenal testing, diagnosis and treatment

There was a debate in the Scottish Parliament on 4th December which I think will be useful for Scottish patients and may be useful for patients in the rest of the UK to take to their doctors/CCGs.  We don’t yet know what the outcome of the debate will be – there were calls for an enquiry.

To watch the video go here:tinyurl.com/y7eep3p3

The transcript is available here: www.parliament.scot/parliamentarybusiness/report.aspx?r=11824

27/11/2018

#T3 Campaign Update

 

All groups

Thyroid UK, along with other thyroid groups including the British Thyroid Association, has worked on a dossier that was requested by the Lord O’Shaughnessy, the Parliamentary Under-Secretary of State for Health and Social Care. 

He wanted to see clear evidence that NHS England Guidance was not being followed by CCGs in respect of the prescribing of liothyronine and this is what we were able to give him.

A joint press release has been published to raise awareness of the dossier which you can read here

The dossier can be found here: www.bit.ly/LiothyronineDossier2018

If you are in contact with any journalists, do please send them the press release with a link to the dossier (the document is too large to send via email or to print).

If your MP was sympathetic or interested in this issue, please send them a link to the dossier and ask them to contact Lord O’Shaughnessy for an update.

A meeting is now being organised with NHS England so hopefully, the dossier has given enough evidence to make change.  We’ll keep you informed.

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.

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.

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."

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.

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!

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

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

 

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.