The new NICE guideline for thyroid disease: assessment and management - and supporting evidence was published on 20th November 2019.  Separate guidelines on thyroid cancer (NICE) and thyroid disease in pregnancy (RCOG) are being prepared and so this guideline does not address either of these. 

The Thyroid Trust were stakeholders in the development of this NICE guideline and fed in at each stage, submitting detailed comments and challenging many aspects.  We were pleased that a number of our comments were taken on board, in particular some of the aspects of managing hypothyroidism:  

• the need for clinicians to pay attention to symptoms when treating thyroid patients, and not just to go by blood test results.
• the proposal to consider titrating levothyroxine dose until symptoms are resolved, which we believe may make make a significant difference for many patients.
• the suggestion to start treatment for hypothyroidism at a dose calculated by body weight, rather than starting everyone on a low dose of 25mcg or 50mcg and then spend a long time working up to adequate replacement - which should avoid many months of poor health for those patients commencing treatment who may have previously struggled on low doses.

However, the guidance is not intended to be comprehensive or to replace clinical judgement or patient centred care and unfortunately there were aspects of treatment for thyroid disease that NICE were unable to make strong recommendations on, due to a lack of evidence from large scale randomised clinical trials and this is disappointing.  

We were particularly hoping for greater clarity on the question of when liothyronine (L-T3) should be prescribed but this clarity is sadly largely missing, since NICE have stated they were unable to consider the body of evidence submitted by patient groups and clinicians demonstrating positive patient experiences and a lack of harm with liothyronine, including the liothyronine dossier - as the NICE process prioritises evidence from clinical trials and the trials conducted, to date, into L-T3, have been inconclusive, with unreliable results due to small sample sizes and other issues. 

As both liothyronine and levothyroxine have been around for decades neither has been subject to the kind of large scale randomised clinical trials that would provide the level of evidence required for NICE to make strong recommendations and hence the onus for making treatment decisions, on when and how to use liothyronine in cases of hypothyroidism that have unequivocally not benefited from levothyroxine alone, will continue to lie with experienced specialist clinicians whose patients give their informed consent.

NICE state unequivocally "Decisions about treatment and care are best when they are made together. Your doctor should give you clear information about the benefits and risks of treatments, talk with you about your options and listen carefully to your views and concerns."  Learn more about what NICE have to say about making decisions about your care. 

​We suggest that any patients who are experiencing difficulties accessing treatment with liothyronine remind their physicians and local health authorities of the above and also refer them to the latest NHS England prescribing guidance, issued July 2019, as well as to the British Thyroid Association liothyronine guidance, which applies to patients established on this treatment, regardless of how it was initiated, published in 2016.  Essentially, if a patient is deriving benefit from liothyronine, having previously not benefited from levothyroxine alone, they should continue to be prescribed it on the NHS - and if a patient is not helped by levothyroxine, a trial of liothyronine can be considered. 

Come back to this section of our website and our blog in the days and weeks to come for further information about the new guideline.  ​

All stakeholder comments are published with the guideline, so you can read what we and others have said and what the responses were from NICE, to each point raised. 

We are grateful to all the patients and clinicians who kindly gave us comments to help shape the comments we sent to NICE. 

It is important to patients that the new Guideline will help improve standards of care and we made our responses with that clear intention.   

Along with other registered stakeholders, we had the opportunity to check the new guideline, for any substantive errors, two weeks prior to publication and we raised a number of issues at this late stage - but not all of the changes we proposed have been adopted.  

Here is the  link to the new NICE guideline and all related information about how it was developed, the evidence that was relied on and so on... 

​Dr Kristien Boelart MD, PhD, MRCP will give a talk and answer questions on the new guideline at our Information Event in London on 25th January 2020.  We will be glad if you can join us there.