Tell us about your experience of getting a T3 prescription.
Form Submitted
Thank you for sending us your report to let us know about issues with liothyronine (T3) prescribing in your local area. Your information has been submitted and will be used to help advocate for improved access to liothyronine for those patients who require it in the UK.
We recognise that there may be many more patients affected who have not contacted us directly, for one reason or another, some of whom may be in touch with other patient organisations, but many who may be entirely unsupported with their condition. Sadly, The Thyroid Trust is still very small and new and it has proven impossible, thus far, for us to provide the support to individual patients that we would like to be able to. Please be assured that we have been working flat out on this issue at the highest level. Here is a recent update and some resources we hope you may find useful.
The NHS, which is a large organisation with many more resources than patient groups, should be caring for thyroid patients. It should not be down to patient charities like us to try and resolve issues which the NHS itself should be sorting out. Hence we have been pushing the NHS and Department of Health and Social Care, as well as NICE, to take action to resolve the issues that you and other patients have been experiencing.
When levothyroxine has not resolved symptoms of hypothyroidism it should be a straightforward matter for any GP to refer patients to a specialist for further investigations and that specialist should be able to prescribe T3, if it is deemed appropriate to meet individual patient needs. We have worked hard to help clarify the national guidance over recent years and as a result, restrictions are being removed in many areas.
However, we have found the current situation in more than half of the healthcare authorities in England, is that clinicians are still being told they cannot prescribe T3 and are telling patients that it is not available. NHS England have been telling us since we raised this issue with them back in 2018 that their guidance allows for T3 to be prescribed when a specialist clinician deems it is appropriate. NICE have confirmed this is also their expectation, as have the Department of Health.
The difficulty as you doubtless know, goes back to price increases between 2006 and 2016, but the price has come down by more than 75% since then and is expected to continue to fall. Unclear guidance has been deeply unhelpful throughout this time and made a bad situation worse as it has been open to misinterpretation.
Most recently we published a new report with our partners and provided further information of the harm being done to patients to parliamentarians in the House of Lords, who are committed to helping resolve things. We have secured some useful written statements from the Minister, Lord Kamall and also from the CEO of NICE, Dr Sam Roberts, which you may find helpful to share with your healthcare provider, if you are being told that T3 cannot be prescribed to you on the NHS.
You can find links to our latest report, the letters from Lord Kamall and NICE CEO, Dr Sam Roberts and other useful resources on the T3 News and Resources page.
You are welcome to share any of the information from our website with your healthcare provider. We hope it will help.
In turn we will be sharing your report, anonymised, with NHS England, in yet another review of the existing written guidance which we are embarking on with them, along with our partners. We believe that your powerful testimony, along with that of other patients, will prove to be influential and help bring about further change. We are grateful to you for sharing it.
We cannot tell you how important it is to us that patients who require T3 are helped when they are experiencing difficulties accessing a prescription.
Sending you every good wishes.
The Thyroid Trust
We recognise that there may be many more patients affected who have not contacted us directly, for one reason or another, some of whom may be in touch with other patient organisations, but many who may be entirely unsupported with their condition. Sadly, The Thyroid Trust is still very small and new and it has proven impossible, thus far, for us to provide the support to individual patients that we would like to be able to. Please be assured that we have been working flat out on this issue at the highest level. Here is a recent update and some resources we hope you may find useful.
The NHS, which is a large organisation with many more resources than patient groups, should be caring for thyroid patients. It should not be down to patient charities like us to try and resolve issues which the NHS itself should be sorting out. Hence we have been pushing the NHS and Department of Health and Social Care, as well as NICE, to take action to resolve the issues that you and other patients have been experiencing.
When levothyroxine has not resolved symptoms of hypothyroidism it should be a straightforward matter for any GP to refer patients to a specialist for further investigations and that specialist should be able to prescribe T3, if it is deemed appropriate to meet individual patient needs. We have worked hard to help clarify the national guidance over recent years and as a result, restrictions are being removed in many areas.
However, we have found the current situation in more than half of the healthcare authorities in England, is that clinicians are still being told they cannot prescribe T3 and are telling patients that it is not available. NHS England have been telling us since we raised this issue with them back in 2018 that their guidance allows for T3 to be prescribed when a specialist clinician deems it is appropriate. NICE have confirmed this is also their expectation, as have the Department of Health.
The difficulty as you doubtless know, goes back to price increases between 2006 and 2016, but the price has come down by more than 75% since then and is expected to continue to fall. Unclear guidance has been deeply unhelpful throughout this time and made a bad situation worse as it has been open to misinterpretation.
Most recently we published a new report with our partners and provided further information of the harm being done to patients to parliamentarians in the House of Lords, who are committed to helping resolve things. We have secured some useful written statements from the Minister, Lord Kamall and also from the CEO of NICE, Dr Sam Roberts, which you may find helpful to share with your healthcare provider, if you are being told that T3 cannot be prescribed to you on the NHS.
You can find links to our latest report, the letters from Lord Kamall and NICE CEO, Dr Sam Roberts and other useful resources on the T3 News and Resources page.
You are welcome to share any of the information from our website with your healthcare provider. We hope it will help.
In turn we will be sharing your report, anonymised, with NHS England, in yet another review of the existing written guidance which we are embarking on with them, along with our partners. We believe that your powerful testimony, along with that of other patients, will prove to be influential and help bring about further change. We are grateful to you for sharing it.
We cannot tell you how important it is to us that patients who require T3 are helped when they are experiencing difficulties accessing a prescription.
Sending you every good wishes.
The Thyroid Trust
Your privacy is important to us. Read our privacy policy.
Please note, if you have not spoken to your doctor recently about the situation, NHS England published updated prescribing guidance in July 2019 which it is worth taking to your doctor and/or talking to your local health authority about, to check if their policy has changed since you were last in touch. NICE have also published a new guideline on the assessment and management of thyroid disease, but this is not intended to be comprehensive and does not say a great deal about liothyronine.
NHS England and the Department of Health have confirmed that if a patient requires liothyronine to manage the symptoms of hypothyroidism, it should be prescribed on the NHS. Treatment with liothyronine should be initiated or reviewed by a specialist. You must be in the UK to participate in this research.
NHS England and the Department of Health have confirmed that if a patient requires liothyronine to manage the symptoms of hypothyroidism, it should be prescribed on the NHS. Treatment with liothyronine should be initiated or reviewed by a specialist. You must be in the UK to participate in this research.
