This is the response I have received today, in response to my letter, questioning the current methods of diagnosis and treatment of Thyroid patients. All authorities seem to be passing the buck to me. I explained that the current tsh & free t4 tests are insufficient, when the patient is telling you that they are still experiencing symptoms.
Dear Ms ,
Thank you for your correspondence of 28 April about your diagnosis and treatment . I have been asked to reply.
I was sorry to read of your ill health and I appreciate your concerns about access to the most effective treatments.
Best practice on the identification and management of hypothyroidism has been provided in the Royal College of Physicians’ guidance ‘The diagnosis and management of primary hypothyroidism’. This document was developed on behalf of organisations such as the British Thyroid Association, British Thyroid Foundation and Society for Endocrinology, and is endorsed by the Royal College of General Practitioners.
The guidance states that overwhelming evidence supports the use of thyroxine T4 hormone replacement alone in the treatment of hypothyroidism. This is usually prescribed as levothyroxine tablets. The guidance does not recommend prescribing additional T3 hormone (liothyronine) in any presently available form. However, this does not prevent clinicians considering other forms of thyroid hormone replacement if appropriate.
In addition, NHS England is leading a review of low-value prescription items and introducing new guidance for clinical commissioning groups, with a view to substantially saving NHS expenditure in this area. This will identify areas of prescribing that are of low clinical value or are available over-the-counter, often at a lower price for minor conditions such as indigestion, travel sickness, coughs and upset stomachs.
In developing the guidance, NHS England will seek the views of patient groups, clinicians, commissioners and providers across the NHS.
Further information is available on the NHS England website at:
More generally, decisions about what medicines to prescribe are made by the doctor or healthcare professional responsible for that part of the patient’s care. Prescribers are accountable for their prescribing decisions both professionally and to their service commissioners.
With regard to medicines prices, the Department is aware that there have been a number of increases in the prices of certain medicines, including thyroid medication. These include instances where a product previously marketed as a brand has been subsequently marketed as generic and an increase in price has been applied in view of the lack of a competitive market for that product.
Any concerns about possible anti-competitive behaviour by pharmaceutical companies should always be reported to the Competition and Markets Authority. The Authority was asked to look urgently at the evidence uncovered by The Times as part of its investigations into excessive drugs pricing.
There are systems in place to ensure that the NHS obtains the best value possible from the purchasing of medicines. There are voluntary and statutory schemes in place to consider the prices of branded and generic medicines rather than consider each product individually.
The Department also has legislative provisions to allow it to intervene with regard to the prices of medicines. However, any investigation would require a high-level and detailed knowledge of the company’s business to be able to make a judgement as to whether a particular price increase was justified.
Now that Parliament has been dissolved before the General Election, the Department cannot comment further on this matter. What happens on the issue of the NHS in the future will be a matter for the incoming Government.
Thanks for post. Well done for having written to the Dept. of Health, but this is a diabolical answer.... T4 being the only thyroid replacement therapy being the best for hypo patients and dismissing T3 outright without any real scientific evidence and ignoring patients's dire symptoms. Do hope you are slowly improving.
After finding this group I decided to try adding t3, something I have completely ignorant of until a few weeks ago. The t3 arrived last Saturday. Last Sunday I started adding 6.25mg (a quarter of a 25mg t3 tablet). Today is the first time in months that's my arms aren't aching as much. Too early too know if it's the t3, I've also started taking lots of supplements, I will get better, if it kills me 😂😂😂
Good luck with the T3 and added supplements. Let us know how things progress. Make notes in a diary so that it might help you manage a return to better health on time.
I would like to know what the 'overwhelming' evidence actually is. Who has done the research that provides overwhelming evidence for perfect health on T4? If there are a substantial number of patients unwell on T4 then who is doing the research to find out what the problem is?
Very similar but more wordy than one I got from Jeremy Hunt about 18 months ago. I had sent that video presentation to my MP about the different problems and the different ways of treatment that many are denied. I got a reply from my MP that he had passed it on but the reply I got was shocking. It went along the lines that having had the problem for so many years then I must be aware of the BTA recommendations! I had just come out of hospital when I received it and wasn't in a position to respond but my whole point was there are better alternatives out there but do there listen -NO!!!
Strangely enough, I got the exact same letter, so they're probably not looking at this at all... Certainly in my case, I live in Wales so I'm not even subject to the machinations of NHS England...
Dear...
Thank you for your correspondence of 27 April about liothyronine. I have been asked to reply.
I was sorry to read of your ill health and I appreciate your concerns about access to the most effective treatments.
Best practice on the identification and management of hypothyroidism has been provided in the Royal College of Physicians’ guidance ‘The diagnosis and management of primary hypothyroidism’. This document was developed on behalf of organisations such as the British Thyroid Association, British Thyroid Foundation and Society for Endocrinology, and is endorsed by the Royal College of General Practitioners.
The guidance states that overwhelming evidence supports the use of thyroxine T4 hormone replacement alone in the treatment of hypothyroidism. This is usually prescribed as levothyroxine tablets. The guidance does not recommend prescribing additional T3 hormone (liothyronine) in any presently available form. However, this does not prevent clinicians considering other forms of thyroid hormone replacement if appropriate.
In addition, NHS England is leading a review of low-value prescription items and introducing new guidance for clinical commissioning groups, with a view to substantially saving NHS expenditure in this area. This will identify areas of prescribing that are of low clinical value or are available over-the-counter, often at a lower price for minor conditions such as indigestion, travel sickness, coughs and upset stomachs.
In developing the guidance, NHS England will seek the views of patient groups, clinicians, commissioners and providers across the NHS.
Further information is available on the NHS England website at england.nhs.uk by searching for ‘guidance on low value prescription items’.
More generally, decisions about what medicines to prescribe are made by the doctor or healthcare professional responsible for that part of the patient’s care. Prescribers are accountable for their prescribing decisions both professionally and to their service commissioners.
With regard to medicines prices, the Department is aware that there have been a number of increases in the prices of certain medicines, including thyroid medication. These include instances where a product previously marketed as a brand has been subsequently marketed as generic and an increase in price has been applied in view of the lack of a competitive market for that product.
Any concerns about possible anti-competitive behaviour by pharmaceutical companies should always be reported to the Competition and Markets Authority. The Authority was asked to look urgently at the evidence uncovered by ‘The Times’ as part of its investigations into excessive drugs pricing.
There are systems in place to ensure that the NHS obtains the best value possible from the purchasing of medicines. There are voluntary and statutory schemes in place to consider the prices of branded and generic medicines rather than consider each product individually.
The Department also has legislative provisions to allow it to intervene with regard to the prices of medicines. However, any investigation would require a high-level and detailed knowledge of the company’s business to be able to make a judgement as to whether a particular price increase was justified.
Regrettably, due to the forthcoming election, the Department cannot comment further on this matter. The costs of medicines in the future will be a matter for the incoming Government.
I think this sentence is the most important to us: "However, this does not prevent clinicians considering other forms of thyroid hormone replacement if appropriate." It's at the end of the paragraph about T4 being the best and T3 useless.
It very quickly and subtly does a load of work, by undermining all of the previous argument. If T4 really is the best and only treatment, why will it ever be 'appropriate' to prescribe anything else? So if that circumstance ever can arise, then it must be that people like most on this forum exist, who do not do well on T4 alone.
But it seems like this is always admitted only in implication and innuendo in official documents and comments like this. You were specifically asking about the group of people who don't do well on T4, so it would have made sense to focus the whole reply on that. But instead the whole reply is about the overall policy, with one tiny sentence hinting that its not right for everybody.
They ALWAYS walk past the fact that the document is about PRIMARY hypothyroidism. It simply does not apply to secondary or tertiary hypothyroidism. Also, how can a document such as this claim to be about primary hypothyroidism but give zero help, guidance or information about how that differs from secondary or tertiary? Isn't the FIRST step to say "primary hypothyrodism can be identified by <unique features> if these do not apply you must consider secondary or tertiary hypothyroism"?
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