#T3 Campaign Updates
16th July 2019
Thyroid UK and other thyroid groups have been working with RMOC to clarify the guidance they published last November.
We all felt that their guidance was not clear enough for CCGs and clinicians in respect of some patients needing T3.
We are pleased to say that this updated guidance has been published today. Although the guidance is not exactly what we wanted, there has been compromise throughout and we think it will help not only patients who are currently on T3 but those new patients who wish to have a trial.
Here is the summary:
“NHS England guidance states that prescribers in primary care should not initiate liothyronine (L-T3) for any new patient, and that individuals currently prescribed liothyronine should be reviewed by a consultant NHS endocrinologist with consideration given to switching to levothyroxine (L-T4) where clinically appropriate. Prescriptions for individuals receiving liothyronine should continue until that review has taken place.
The majority of patients suffering from hypothyroidism can be treated effectively with levothyroxine alone, but liothyronine is perceived to be an important medicine for a small proportion of patients in order to maintain health and wellbeing. The prescribing of liothyronine is only supported if initiated by, or considered appropriate following a review by, an NHS consultant endocrinologist. The withdrawal or adjustment of liothyronine treatment should al only be undertaken by, or with the oversight of, an NHS consultant endocrinologist. Where General Practitioners (GPs) are involved in such treatment changes this should be with NHS consultant endocrinologist support. This advice applies to both liothyronine monotherapy and combination therapy with levothyroxine.
As noted by the British Thyroid Association (BTA) Executive Committee (1), ‘clinicians have an ethical responsibility to adhere to the highest professional standards of good medical practice rooted in sound evidence. This includes not prescribing potentially harmful therapies without proven advantages over existing treatments’. Also ‘If a decision is made to embark on a trial of L-T4/L-T3 combination therapy in patients who have unambiguously not benefited from L-T4 then this should be reached following an open and balanced discussion of the uncertain benefits, likely risks of over-replacement and lack of long-term safety data. Such patients should be supervised by accredited endocrinologists with documentation of agreement after fully informed and understood discussion of the risks and potential adverse consequences. Many clinicians may not agree that a trial of L-T4/L-T3 combination therapy is warranted in these circumstances and their clinical judgement must be recognised as being valid given the current understanding of the science and evidence of the treatments’.
The RMOC therefore recommends that strict criteria are applied to ensure that liothyronine is only prescribed in the situations where alternative treatments have been found to be inadequate. In such circumstances, an ongoing shared care arrangement may be appropriate if agreed by local commissioners. If a patient is initiated on treatment, prescribing responsibility should remain with the hospital consultant for at least 3 months.
Clinical and biochemical monitoring of treatment and for potential side-effects is to be undertaken by the clinician supervising the treatment. TSH levels should be monitored, and free L-T4 / free L-T3 levels measured where clinically appropriate. The risks of over-treatment with thyroid hormones include atrial fibrillation, osteoporosis and bone fractures, and the risks of under treatment are also significant.”
We would like to thank all the thyroid groups that had an input into this work, especially the Thyroid Trust.
If you have had your T3 withdrawn without a referral to an endocrinologist you could try going back to your GP with this guidance and ask for it to be reinstated whilst you wait for a referral.
Ensure that the endocrinologist you go to isn’t completely anti T3 though. We think endo appointments will take a long time so use this to encourage your GP to put you back onto T3.
You can find the full guidance here:
26th March 2019
You may be aware that a coalition of thyroid organisations, including the British Thyroid Association (BTA), worked together on a Dossier for the Lord O’Shaughnessy in respect of the harm being done to patients in respect of the NHS England guidance on liothyronine.
After the publication of the Dossier, the Regional Medicines Optimisation Committee (South) (RMOC) published their own guidance which was felt by all the thyroid patient organisations to not be in line with the NHS England guidance. This guidance was then available for all CCGs in their area to use.
Since then the patient organisations and the BTA have been talking with NHS England, the outcome of which was that they agreed to clarify the RMOC guidance.
We know that many patients are still having their liothyronine withdrawn or not being referred to endocrinologists for a trial and this is not acceptable.
However, we are also hearing, at long last, that some CCGs are recognising the need for liothyronine by some patients.
Hopefully, the clarification of the RMOC guidance will enable patients to have their liothyronine reinstated and trials to be given to patients who do not resolve all of their symptoms with levothyroxine.
The RMOC have published a small article in their March 2019 Newsletter as follows and we look forward to giving feedback to the draft. We will keep you informed of progress.
The RMOC guidance concerning the prescribing of liothyronine was published in November 2018 in order to provide advice to CCGs regarding the application of the national NHS England and NHS Clinical Commissioners’ guidance: ‘Items which should not routinely be prescribed in primary care: Guidance for CCGs’ which had been published in November 2017 which you can find here.
Following the publication of the RMOC guidance, variation in practice was documented in the House of Lords dossier entitled ‘Case Details with Clear Evidence that NHS England Guidance on Prescription of Liothyronine is not Being Followed by CCGs; Evidence in Response to a request from The Lord O’Shaughnessy, Parliamentary Under-Secretary of State for Health and Social Care’. You can download this dossier here.
The RMOC guidance was discussed with key individuals including senior clinical and academic representation from the British Thyroid Association. The reduction in variation of practice as a result of implementing the RMOC guidance was welcomed, but clarification was requested concerning some of the statements in the RMOC document. The document is being considered in light of the House of Lords dossier, with the aim of providing clarification rather than a change in guidance A draft revision of the published RMOC guidance, with clarification of the wording, has been discussed at the South RMOC and is currently being circulated to the South RMOC for review. This will then be circulated to other RMOCs for comment.
27th November 2018
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.
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.
19th October 2018
The dossier of evidence requested in the Regret Debate led by Lord Hunt in respect of liothyronine has been worked on for many weeks by Thyroid UK, The Thyroid Trust, Improve Thyroid Treatment Campaign Group, Midlands Thyroid Support Group, British Thyroid Foundation, Thyroid Patient Advocacy and Thyroid Support Group Norfolk and the British Thyroid Association.
The dossier includes evidence that NHS England guidance is not being adhered to in the form of patient letters and other documents.
The BTA have said that, “…it looks like a powerful document.” so we are very hopeful that this will be the beginning of change in respect of options for treatment for hypothyroidism.
The dossier has now been sent to the Lord O’Shaughnessy, Parliamentary Under-Secretary (Department of Health and Social Care).
It is embargoed for the time being but will be disseminated as soon as the embargo is over. We will keep you informed of progress.
20th July 2018
Very good meeting at the House of Commons with Thyroid Trust, ITT, Midlands Thyroid Support, Norfolk Thyroid Group, TPA, BTF and BTA.
It was agreed that we would all work on a document with evidence for Lord O’Shaughnessy regarding CCGs not adhering to NHS England guidance on liothyronine.
It was very good to meet up with people we have been working with and to meet them all.
I had a chat with prof Krishna Chatterjee after the meeting. Now to get to work!
25th June 2018
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:
13th June 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.
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.
22th May 2018
Thyroid UK and ITT travelled to London yesterday to meet with NHS England and NHS Clinical Commissioning to voice our concerns about T3.
The meeting was attended by Julie Woods, CEO of Clinical Commissioning and Alex Williams, Deputy Director, Medicines Policy at NHS England.
We put forward concerns including the fact that the NHS England decision was not clear and that many CCGs are not following the NHS England consultation decision which has caused many patients to have their T3 withdrawn.
Alex Williams stated that this was not the intention of NHS England and that they thought the wording was clear but now realise that it needs clarification.
The clinical working group are holding a meeting on 6 June and it was agreed that Thyroid UK and ITT would provide some input to this meeting with the intention of giving clearer guidelines to CCGs.
We will keep you informed as to progress.
15th May 2018
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
16th April 2018
We need your help!
Please contact your MP
We are pleased to tell you that Thyroid UK has been working with ITT (Improve Thyroid Health) and TPA (Thyroid Patient Advocacy) on a joint report entitled
“Improving T3 Prescription in the UK – a Joint Campaign on behalf of Thyroid Patients” which has been sent to Mr Simon Stevens, CEO of NHS England and Professor Sir Malcolm Grant CBE, Chair of NHS England Board.
Lyn Mynott met with the Rt Hon Lord Philip Hunt of Kings Heath PC OBE, Opposition Spokesperson on Health, Higher Education and Cabinet Office on 22nd March 2018 who has put down on the order paper a regret debate regarding the high cost of T3 and the fact that a growing number of CCGs are refusing to follow the latest guidance from NHS England.
If you know of any Lords, please do contact them and let them know about the regret debate which will hopefully happen sometime this month. Also let me have their details so that I can let Lord Hunt know.
More good news, ITT recently met with Vince Cable, party leader of the Liberal Democrats, and he has offered to try to get a members debate on the subject of T3.
Thyroid UK and ITT have worked together on compiling a list of MPs who have been supportive to their constituents in regard to their plight and this has been sent to Vince Cable.
We now need you to help by writing to your MP sending the joint report which you can download from here.
We have designed a template to make things easier which you can download from here
Delete the parts of the template that you don’t need and either send it to your MP by email or by post.
Alternatively, you can use this template which is more concise and may be easier to use.
You can find your MPs contact details (telephone and email) here:
Please help us with this as it is the perfect opportunity to stop the CCGs withdrawing T3 from us.
30th November 2017
NHS England gave its decision at a board meeting this morning about whether liothyronine will be deprescribed by the NHS:
- 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.
- 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.
- 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.
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 prescribed 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