21 October 2017
Over the last few months the availability of liothyronine (T3) has been in the spotlight and for some BTF members this has caused considerable concern. In August 2017 the British Medical Journal (BMJ) invited the BTF to contribute to an article which has now been submitted for publication. Below is the article which was submitted to the BMJ and which is also the front page story in BTF News 96.
For many years a small but significant number of patients have told us that despite having ‘normal’ TFTs they do not feel well on levothyroxine (L-T4) alone. Whilst the evidence for its use has always been disputed, some patients, usually under the guidance of their endocrinologist, have had the opportunity to try liothyronine (L-T3). Although not a solution for all patients there are undoubtedly significant numbers who feel that L-T3 has given them their life back again and that life without it is unthinkable.
An online petition calling for improved treatment protocols for hypothyroid patients currently has almost 20,000 signatures.
The current situation – triggered by what would appear to be an unjustifiable cost increase – has left patients, and many of their doctors, in a very difficult position. We are hearing from patients who have been treated with L-T3 for many years who feel they have now been abandoned without care, and whose doctors, no longer able to prescribe it, are leaving them to their own devices and in some cases even advising them to buy L-T3 on the internet (where it is available from other countries, and at much lower prices than in the UK). Sadly the relationship of trust between doctor and patient has been seriously compromised. Patients are confused as to the reason why their doctor’s decision to prescribe L-T3, based on clinical judgement, is now being blocked. Is the real reason for the restriction due to recent price increases or to sudden doubts about the strength of evidence for its use? Should clinical need not come before financial considerations? Who should have the final say about whether there has been an improvement in patient well-being?
The proliferation of online health information and forums has added to the confusion. Access to peer support is often beneficial but unfortunately patients sometimes find misleading and false information about their condition and the treatment options, and the consequence of this can lead to faith in their own doctors being undermined, and they are left concerned and confused.
We would welcome:
- market controls that prevent suppliers being in a position to dominate the market and cause such upset in the future
- a greater consensus of medical viewpoints with the aim of providing a clear message to patients, and reducing the current ‘postcode’ lottery of care and the need that some patients feel to have to ‘shop around’
- more research to clarify the effectiveness and long-term safety data of L-T3 and combination therapy and to help determine which patients may benefit from such treatments
- greater empathy for the thyroid patients who do not feel well, including helping them to understand their diagnosis and treatment, and signposting to quality patient information which may avoid the confusion that can arise when patients research the available treatments on the internet
20 December 2016
Liothyronine (L-T3) and Levothyroxine (L-T4)
Answering patients’ questions
The management of primary hypothyroidism with Levothyroxine is usually simple, effective and safe, and most patients report improved well-being once they have started treatment. However medical professionals recognise that a proportion of individuals continue to suffer with symptoms despite apparently having thyroid function tests falling within the normal range.
For patients who have clearly not derived benefit from L-T4, endocrinologists (thyroid specialists) sometimes decide to begin a trial of L-T4/L-T3 combination therapy. Such patients should be supervised by accredited endocrinologists after a fully informed and understood discussion of the risks and potential adverse consequences.
We are aware that a number of patients have been advised by their GPs that L-T3 is no longer available for the treatment of hypothyroidism and that they use L-T4 as an alternative treatment. We understand that this is as a direct result of the sharp increase in price of L-T3, which the NHS does not believe is sustainable. The sudden non-availability of L-T3 has caused considerable concern and we therefore feel that some clear advice would be helpful. The BTA has produced a similar FAQ sheet for GPs which you can print off and take with you to an appointment if you believe it would be useful.
What is the BTA and the BTF’s position as regards the withdrawal of L-T3 therapy?
The BTA and BTF believe that clinical need should come before financial considerations and they therefore do not support the practice of sudden withdrawal of L-T3 therapy. Patients established on L-T3 who continue to derive benefit from its use should continue to use it. However, patients with uncertain benefits should be considered for a switch to L-T4 and advice should be sought on how this can be safely done.
I have been on Liothyronine (L-T3) a long time. Is there any problem with switching me to Levothyroxine (L-T4)?
Your doctor should have made you aware of the risk to your thyroid stability. A change in treatment can unfortunately result in a significant instability in thyroid status, which can take some time to address.
Is there a resource to which I can refer with regard to the use of Liothyronine (L-T3)?
Yes there is a 2015 BTA Statement on the Management of Primary Hypothyroidism. This summarises the evidence for the use of Liothyronine and states that we have yet to see conclusive evidence regarding its efficacy for this condition. Therefore combination treatments of Liothyronine and Levothyroxine should be started and supervised by an accredited endocrinologist rather than a GP.
Is there any problem in switching me to just Levothyroxine from combined Liothyronine (L-T3) /Levothyroxine (L-T4) or from Liothyronine?
This has to be made gradually with the aim of avoiding under- or over- replacement. The final L-T4 requirement is likely to be around 1.6mcg/kg. If there is any information about a previous L-T4 dosage that achieved a normal TSH this will be a useful guide. Gradual reduction of L-T3 starting at the same time as introducing L-T4 may be a preferable alternative. Careful monitoring of the patient during the transition period is essential.
Can I be switched from Liothyronine (L-T3) to Levothyroxine (L-T4) if I have been diagnosed with thyroid cancer?
Switching from L-T4 to L-T3 is part of a standard protocol used in patients with a history of thyroid cancer in preparation for radioiodine ablation, radioiodine therapy, iodine scanning or stimulated thyroglobulin test, so access to L-T3 is imperative.
Are there any particular patients who merit extra caution?
If you are over the age of 60, or have known heart disease, additional care is required to avoid over-replacement and L-T4/L-T3 combination therapy or L-T3 only therapy. L-T4/L-T3 combination therapy or L-T3 only therapy are not recommended if you are pregnant.
What is your advice concerning the use of desiccated animal thyroid extracts?
This issue is addressed in the 2015 BTA Statement on the Management of Primary Hypothyroidism. These thyroid hormone preparations are not currently recommended in the management of hypothyroidism.
2 November 2016
The UK Government has lifted restrictions on Teva levothyroxine tablets following the introduction of new strengths. They are also lactose free. For more information visit the Medicines and Healthcare products Regulatory Agency news release.
10 October 2016
The BTF welcomes the decision of the Scottish Medicines Consortium (SMC) to recommend the use of lenvatinib for people with progressive, advanced thyroid cancer which is not responsive to radioactive iodine treatment. The trial results with lenvatinib in this situation were very promising and came on the back of positive trial data with another anti-cancer drug called sorafenib.
Although these drugs are not suitable for all patients with advanced thyroid cancer, it is extremely encouraging that after decades of limited progress in the treatment of thyroid cancer, we now have two drugs which can be offered to patients with progressive disease.
For further information about this decision please go to the SMC website.
Have you had any adverse side effects to your medications? If so you can report them to the Yellow Card Scheme. The scheme, run by the MHRA and the Commission on Human Medicines, is used to collect information from both health professionals and the general public on suspected side effects. Find more information on their website.