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We suggested that if you had had your liothyronine (T3) withdrawn, you should collect any evidence you can gather about why you need T3 (including any test results that show you either have the DIO2 polymorphism and/or low T3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

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We rely on donations so that we can continue to support and campaign for people with thyroid and related conditions.  If you have found our information helpful, please make a donation or become a member.