The Rt Hon Andrea Leadsom contacted the Department of Health on your behalf about liothyronine.
Under the provisions of the Data Protection Act, during this pre-election period the Department is not able to share information or respond to enquiries on behalf of third parties without their express consent. We have therefore written to Ms Leadsom to explain that we would reply to you directly.
I was sorry to read of your health problems and appreciate your concerns about access to the most effective treatment.
Best practice on the identification and management of hypothyroidism has been provided in the Royal Collage 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 of Endocrinology, and is endorsed by the Royal College of General Practitioners.
The guidance states that the 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 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 int he 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-competitiative 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 was part of it's investigations into excessive drugs pricing.
There are systems in place to ensure that the NHS obtain 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 the 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 o 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.
I am sorry that I cannot be more helpful
Ministerial Correspondence and Public Enquiries
Interesting that my original email (1/4/17) to Andrea Leadsom was ignored. The resend (11/4/17) prompted a response on the 12/4/17, to say that due to the seriousness of the content of my email it has been passed to the DOH. I spoke with AL on 21/4/17 who passed me onto her 'aid' who assured me I should have had a response and would follow it up that following week. A week later I was chasing them again. Am I wrong to think that they have just 'passed the book' and stalled to avoid having to respond. This letter (not email) ending with the 'Department' not being able to comment further...cop out!!
I am going to respond -
To highlight that I am all too aware of the document The diagnosis and management of primary hypothyroidism that GP's and CCG's are using in the treatment of Hypothyroidism, I and too many others, have been a victim of this narrow minded practice for far too long!!!
I am also aware that the 'guidance states that overwhelming evidence supports the use of thyroxine T4 hormone replacement alone in the treatment of hypothyroidism.' I also know that this is usually prescribed as levothyroxine tablets. I took these tablets for 20 years and had nothing but increasing debilitating health problems!
Please supply the overwhelming evidence that is being referred to here.
May I also point out that T4/thyroxine is not a hormone, but a 'pro -hormone' it is effectively packaging. It is not used by the body in it's original form. It has to be converted to be usable.
'The guidance does not recommend prescribing additional T3 hormone (liothyronine) in any presently available form.' I am also well aware of this. Firstly you have this part right, in that T3 is a hormone. This particular part of the guidance is what I cannot fathom. Many endocrinologists have, and do, prescribe T3, usually when someone is not doing well on T4 alone. Or when someone does not convert the 'inactive' T4 to the active T3. This in itself would indicate a real need for T3 to continue to be available as an option.
Left on T4 alone, when unable to convert the T4 to T3, would leave a person building up T4 within the blood stream and becoming T4 toxic, causing a myriad of debilitating symptoms, such as Chronic Fatigue, fibromyalgia, migraine, to mention just a few from my own experience.
You mention that the guidance does not prevent clinicians from considering other forms of thyroid hormone replacement, if appropriate. I would like to know what other forms of thyroid replacement you are referring to?
I would also note here that your paragraph outlining that it is the decision of the Doctors or healthcare professional as to what medication they prescribe, is not necessarily true in practice. Many CCG's are stopping surgeries from issuing T3 even to existing T3 users. This is against the current guidelines. I am hearing of endocrinologists who are recommending T3 to patients referred to them, but when these patients go back to the local GP's the GP is refusing to issue prescriptions, forcing patients to go privately, or as most can't afford to do this, they have no choice but to try to source T3 from the internet. Really!! This is what is happening. To me this seems that GP's are effectively being bullied by CCG's. All based on costs.
I have contacted the CMA regarding the price hiking by Concordia. I know other have too. I understand this investigation continues to be postponed. I would be interested to know if either the NHS or the DOH actually contacted the CMA directly, regarding this particular price hike when it happened? When discussed on The One Show it was mentioned that Concordia had been contacted and refused to appear, but had said that the NHS had not contacted them to discuss the price. Why not? Why does it take The Times to uncover evidence regarding excessive drug pricing?
I realise the recent bill has opened the door to better investigation and control over price hiking of drugs and medicines but your comment, referring to a requirement for 'high-level and detailed knowledge of the company's business to be able to make a judgement', sounds like an excuse to avoid such investigations.
I am also well aware of the NHS's review of 'low-value' prescriptions. As T3 is NOT an 'over-the- counter' medicine, they must be referring to T3 as being 'low clinical value'?
This will only be of 'low clinical value' to those who are well and/or do not need it - on this would the mean that all drugs are 'low clinical value' as none of us need all drugs. To those of us using and benefiting from T3 it is anything but low clinical value. In fact it is life saving.
At this point I will remind you that hypothyroidism is a life long condition, which many surgeries do not even recognise as a 'long term condition' despite the fact that it warrants 'Free prescriptions' because it is a life long condition which untreated or mistreated can lead to other very serious conditions developing and premature death.
Regarding the review relating to the prescribing of T3, I would also ask as to how transparent will the discussions be? Will allowances be made to consider the numbers of people who are being forced to self diagnose and self medicate because of the poor hypothyroid medical processes. Or will these people continued to be ignored and neglected by the NHS and the DOH?
The review should not be just about T3 but about the overall reliance on ineffective and often poorly understood blood tests.
I did not appreciate your reluctance to comment further due to Parliament being dissolved. As this issue is ongoing and relevant to all parties. If nothing else I would ask that my original email to Andrea Leadsom, your response, and this response, be passed onto the incoming Health Minister for further consideration and response.
I've not sent this yet - thinking I will, and will try to get it to all local MP's from all parties too. thought I'd see if anyone has any other ideas about responding? I'm not going to accept the standard fob them off response.
My apologies for such a long post - hope you managed to wade through it!