A further letter from joint thyroid groups to NHSE regarding T3 guidance

[TaraJR]

The joint thyroid charities/groups Thyroid UK, The Thyroid Trust, ITT Improve Thyroid Treatment, British Thyroid Foundation and Thyroid Support Group Norfolk recently wrote again to NHSE about their August 2023 guidance to ICBs. Their response to our previous letter in June was not satisfactory as they did not acknowledge that their 2 pieces of guidance contradict each other:

Concerns Regarding NHSE Liothyronine Guidance – Request for Clarification and Action

To: Medicines Policy & Analysis Unit NHS England

Re: NHSE Liothyronine for Hypothyroidism – "Items which should not routinely be prescribed in primary care: policy guidance"

(Official Publication Reference: B1174) – August 2023

Thank you for your email dated 26th July 2024. However, we continue to have significant concerns regarding the NHSE guidance issued in August 2023.

The guidance provided in "Items which should not routinely be prescribed in primary care" remains contradictory and unclear, particularly its ‘Recommendation’ section, which still instructs to “deprescribe in patients currently prescribed this medicine”. This has not been amended despite stakeholder feedback from thyroid patient charities and groups, who specifically requested changes to this section.

The recommendation to deprescribe conflicts with the more detailed advice for prescribers provided in “Liothyronine - advice for prescribers” which states clearly “Patients who have already had a review by an NHS consultant endocrinologist should continue to be prescribed liothyronine under existing arrangements” and “Patients taking liothyronine for the treatment of hypothyroidism who have not already been reviewed, should be reviewed by an NHS consultant endocrinologist.”

The contradictory messages between these two documents are still causing confusion, regional variation in liothyronine prescribing practices, and adversely affecting patients.

Alarmingly, some ICB formularies reference the Recommendation ‘deprescribe all patients’ in "Items which should not routinely be prescribed in primary care" without considering the ‘Named exceptions and further recommendations’ section in that document itself, or the exception criteria outlined in “Liothyronine - advice for prescribers”.

Furthermore, it appears that many ICBs are ignoring the specific instruction in "Items which should not routinely be prescribed in primary care" (page 6) which states: "When monitoring, the clinical exceptions defined in this guidance should be taken into account and care taken to ensure that zero prescribing goals are not used inappropriately." This disregard is leading to widespread inequalities in patient access to liothyronine and, in many cases, poor health outcomes.

We are currently finalising a detailed report on ICB liothyronine prescribing policies, with a patient feedback survey, which we intend to share with you and other relevant parties. Our provisional findings have identified 30 out of 42 ICBs that have not adopted or implemented the August 2023 NHSE guidance correctly. The majority of ICBs are interpreting the guidance to deprescribe all patients, restrict doses, refuse new patients, or restrict liothyronine prescriptions to capsules only. Urgent action is needed to rectify this.

We have raised these issues before with NHSE and the NHS Medicines Policy & Analysis Unit who acknowledged the confusion and assured us that steps would be taken to address it. Despite this, the August 2023 guidance does not reflect the necessary changes, and the resulting regional inconsistencies continue to adversely affect patients.

In your email of 6th December 2022, you stated that you proposed changing the wording in “Items which should not routinely be prescribed in primary care” from:

“The policy guidance recommends that liothyronine should not be initiated in primary care and all patients should be deprescribed but recognises that a small number of patients may require liothyronine.”

to:

“The policy guidance recognises that a small number of patients may require liothyronine. The guidance also recommends that all patients taking liothyronine should be reviewed by an NHS Consultant Endocrinologist (if they have not already been reviewed) to determine future treatment plans and that liothyronine should not be initiated in primary care.”

It would have been so much clearer if this had been included in both documents.

Our recommendation is clear: the wording of the ‘Recommendation’ section in "Items which should not routinely be prescribed in primary care" needs to be revised to remove the directive "deprescribe in patients currently prescribed this medicine." We request that the recommendation instead states that “Patients taking liothyronine for the treatment of hypothyroidism who have not already been reviewed, should be reviewed by an NHS consultant endocrinologist.”

We set out below a comparison of the current wording in the document’s Recommendation section along with the wording we feel would be much clearer. This revision would then align with the detailed advice provided in “Liothyronine - advice for prescribers”, address the stakeholder feedback, and help mitigate the significant regional disparities in access to this medication.

NHSE Recommendation

• Do not initiate.

• Deprescribe in patients currently prescribed this medicine.

• Prescribe only if no other item or intervention is clinically appropriate.

• Prescribe only if no other item or intervention is available.

• Prescribe only if for a named indication in this guidance.

Our recommendation

• Do not initiate in primary care.

• Patients taking liothyronine for the treatment of hypothyroidism who have not already been reviewed, should be reviewed by an NHS consultant endocrinologist.

• Prescribe only if no other item or intervention is clinically appropriate.

• Prescribe only if no other item or intervention is available.

• Prescribe only if for a named indication in this guidance.

We trust NHSE will uphold its commitment to making these necessary revisions.

We look forward to your response and remain available for further discussions.

Signed on behalf of

Thyroid UK The Thyroid Trust British Thyroid Foundation

ITT Improve Thyroid Treatment Thyroid Support Group Norfolk

[amala57]

Thank uou so much for your hard work.

[RedApple Administrator]

Thanks for keeping us updated TaraJR. Your hard work is so appreciated.

[TaraJR in reply to RedApple]

It's all of us working together. But it often feels like pushing water uphill!

[ClareP5]

thank you for your hard work on this - I am sure it’s an uphill battle but you will help so many people by getting the wording corrected. Power to you💪

[Yostie]

Thank you for your hard work. I'm on T3 monotherapy and used to be checked every year by a consultant. 14 years on, this year, the GP surgery wrote to the consultant setting out all the reasons why it should be removed, etc, etc. I agreed with the consultant, to trial a dose reduction, which had been tried before; within 2 weeks my HR was 50, normally 65, plus other issue returned. The endo, with much discussion, accepted that after 14 years I was established on T3 and it continues to be be prescribed. But , I live with the stress that a letter may arrive at any time. So, anything that stops this hounding of T3 patients is very welcome.