CLKD you asked
Why has important treatment been withdrawn, - this must affect 1,000s of people across the UK - would they withdraw diabetic treatments
Thank you for your outrage & concern for the subset of thyroid patients who need this medication.
This is exactly the question many hypothyroid patients & their concerned Endocrinologists have been asking. It is a very sore point with me, so you have opened a can of worms here
!
It is apparently a matter of cost. Liothyronine (T3) has increased massively in price in the UK in the last few years. I believe changes in pharmaceutical regulations affected the manufacturing process & this incurred significant costs for the manufacturer, but I don't know the detail.
I was first prescribed T3 many years ago on the basis of unresolved symptoms on Thyroxine alone & bloods consistently showing I cannot convert Thyroxine efficiently. My T3 is always at or below bottom of ref range. QOL really suffers as a result. At that time it was still more expensive than Thyroxine but way, way cheaper than it is now. The hormone is much cheaper elsewhere in Europe, so that the NHS doesn't seem able to either arrange a contract for it to be imported or negotiate with the UK supplier to reduce the price, is something I don't understand. I believe the matter has been raised in the House of Lords, thyroid patient bodies have been lobbying for the reinstatement of T3 on NHS prescription & some senior Endocrinologists have also been working to raise the profile of the issue. I'm not aware of how much progress has been made recently - I did a search this morning & there was nothing that indicated the situation has been resolved.
So, in 2018 many CCGs across the country withdrew T3 from NHS prescription. I had been aware for some time of rumours there were plans to do this, but had not heard anything personally from my GP surgery or any other part of the healthcare system. Then last summer, I received a letter from my local CCG out of the blue - my first ever contact with them, telling me my case had been reviewed & it had been decided I was not eligible for T3 on the NHS.
I immediately wrote back asking who had reviewed it, as my GP surgery should have been well aware of my long-term need for T3, no-one had asked me about my history in relation to it, its beneficial effects on my health or severity & scope of symptoms without it. I apologised for needing the medication as I've long felt guilty that it costs the NHS so much but also stated that I felt compelled to contest the decision as I had previously been very unwell without T3 & feared for my future health without it. The hormone is very powerful & I currently only take a quarter tablet a day, though am likely to need to double this to my prescribed dose once blood levels of HRT build again & many patients need more than the relatively small amount I take. I received no reply to the letter.
My lovely Endo then wrote to the CCG on my behalf telling them I met the criteria for eligibility. They quickly reversed their decision, in my case, though I only heard about this as he kindly emailed me a copy of their response. My GP surgery has not contacted me about the situation, but I have repeatedly noticed on my repeat script request forms a statement to the effect that my thyroid situation is still under review. So there is the underlying worry this is only a temporary reprieve. As I had other major health issues to deal with for the whole of last year & the aftermath of those is still very much ongoing, I have not had the time or energy to pursue the T3 issue.
However, the national situation seems little short of scandalous & I worry about all those patients less able than me to advocate for themselves, not to mention those who can't afford a private Endo to support them.
A suggested "solution" has been for patients to import the cheaper T3 from Germany & many have had to do this if their CCG has proved intransigent & their quality of life without T3 is poor. There is still the issue of unfair cost to the patient, the inconvenience of having to source the hormone from outside the UK and a big question mark over what will happen post-Brexit. For these reasons I chose not to begin importing my T3 from Germany, reasoning if I did this it absolved the NHS of the responsibility for my future thyroid (& arguably systemic) health & should it all go pear-shaped after Brexit I would be left with no means of obtaining the T3 I need. I'm also not in a situation of being very comfortably off, so while I can scrape together the cost of the medication now, there is absolutely no guarantee I'll be able to continue to buy T3 for the indefinite future.
The decision to withdraw T3 from NHS provision is arguably also very short-sighted of the NHS on a long term cost basis, as patients who need the hormone - which has systemic effects, so many bodily functions depend on it - will inevitably get sick as their bodies struggle to cope & begin to malfunction in many ways. They will likely need (expensive) hospital treatment they would not have, had their T3 not been withdrawn. They may also become too unwell to continue working so their contribution to society will be lost. They may, sadly, even have a shorter lifespan as a result.
I can't see the sense or compassion in this, or how it fits with the ethos of the NHS as a provider of free healthcare for all (NI contributions notwithstanding). Here is a link from one of the patient bodies if you are interested. And still awake! Phew - another epic. Sorry!
Wx
http://www.btf-thyroid.org/information/liothyronine/397-liothyronine-dossier-2018