Liothyronine T3 Campaign – a powerful patient-led initiative

In 2017 NHS England was asked by Clinical Commissioning Groups (CCGs) to undertake consultation for their guidance on “Items which should not routinely be prescribed in primary care.” Liothyronine (T3) was listed due to it being an item under the category, “Items which are clinically effective but where more cost-effective products are available, including products that have been subject to excessive price inflation.”

Thyroid UK was a stakeholder of this consultation and attended meetings and participated in the consultation.

However, previous to the consultation, CCGs across the UK had already decided that T3 should not be prescribed and informed all surgeries and hospitals in their area to stop prescribing and withdraw Liothyronine T3 from patients who are already on it (which we consider unethical).

CCGs do not have the legal right to order clinicians to stop prescribing or withdraw T3 from patients.  The final say on whether a doctor should prescribe lies with the doctor him or herself.  However, many doctors are worried that they could get into trouble for prescribing liothyronine (T3) and are therefore doing as they are told by the CCGs.

Thyroid UK is aware that some patients have appealed to their local CCG and have been re-prescribed their Liothyronine T3 so it is definitely worth fighting the decision.

Starting the Liothyronine T3 Campaign

Thyroid UK decided to run a campaign to stop the NHS cost-cutting exercise and to fight for patients’ rights in regard to receiving an effective diagnosis and appropriate treatment for people with thyroid disorders in the UK, and we need your help to do this.

Our campaign started by asking you to contact your MP using our template documents whilst we targeted the Secretary of State for Health and the Minister of State for Health.

We suggested that if you had had your liothyronine (T3) withdrawn, you should collect any evidence you can gather about why you need T3 (including any test results that show you either have the DIO2 polymorphism and/or low T3 levels as well as a list of symptoms that improved when you started taking T3) and make an appointment to see your GP to discuss this.

Thyroid UK has communicated with various organisations regarding our campaign and we have sent out a number of Press Releases.

Campaign updates

• The 2022 T3 Prescribing ReportJune 14, 2022
  We want to ensure that Integrated Care Boards follow the guidance rather than continue to refuse Liothyronine (T3) to patients who need it. Levothyroxine is the standard medication for hypothyroidism but not all patients have their symptoms resolved with this… The 2022 T3 Prescribing Report
• T3 Prescribing SurveyFebruary 17, 2020
  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 2019.  Our survey clearly shows that… T3 Prescribing Survey
• Our #T3CampaignFebruary 17, 2020
  We are working hard to ensure that patients can access the thyroid medication they need such as liothyronine, hence our #T3Campaign.  If you want to find out more about our #T3Campaign, you can find all the information you need on… Our #T3Campaign
• We are working with RMOC to clarify the guidance they published in November 2018July 16, 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 working with RMOC to clarify the guidance they published in November 2018
• Article in RMOC newsletterMarch 26, 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… Article in RMOC newsletter
• Lord O’Shaugnessy DossierNovember 27, 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… Lord O’Shaugnessy Dossier
• The dossier has been sent to Lord O’ShaugnessyOctober 19, 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… The dossier has been sent to Lord O’Shaugnessy
• Loose coalition forms to gather evidence for Lord O’ShaugnessyJuly 20, 2018
  A very good meeting was held 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… Loose coalition forms to gather evidence for Lord O’Shaugnessy
• The Regret debate in The House of LordsJune 20, 2018
  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… The Regret debate in The House of Lords
• Lord Hunt secures debate in The House of LordsJune 13, 2018
  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… Lord Hunt secures debate in The House of Lords
• Meeting with NHS England and NHS Clinical CommissioningMay 22, 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… Meeting with NHS England and NHS Clinical Commissioning
• Parliamentary debate on hypothyroidismMay 15, 2018
  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.… Parliamentary debate on hypothyroidism
• Improving T3 Prescription in the UK – a Joint Campaign on behalf of Thyroid PatientsApril 16, 2018
  We need your help! Please contact your MP We are pleased to announce that Thyroid UK has been working with ITT (Improve Thyroid Health) and TPA (Thyroid Patient Advocacy) on a joint report entitledImproving T3 Prescription in the UK –… Improving T3 Prescription in the UK – a Joint Campaign on behalf of Thyroid Patients
• NHS Board decides on the question of deprescribing T3November 30, 2017
  NHS England gave its decision at a board meeting this morning about whether liothyronine will be deprescribed by the NHS. Read a transcript of the meeting  Liothyronine  Of those respondents who either agreed or disagreed with the recommendations, only 16% agree… NHS Board decides on the question of deprescribing T3