I've been very lucky and found a new doctor who prescribed some T3 for me, for the past ~2 years. I've now had the letter saying he won't any more because of the cost. I've written a letter to him and copied it to my local MP and Jeremy Hunt. I'm sure it won't make any difference but I know others on here have wondered about doing so - if a lot of people write around the same time, would it raise any interest do you think...?? I'm not expecting to still get T3 but thought it would be another way of raising the whole issue...?
Dear Dr. .....,
Re: Liothyronine Sodium Tablets
Further to your letter dated 19th April informing me that you will no longer be willing to prescribe liothyronine (T3) for me.
I really do appreciate you prescribing the drug for me and, as you know, I have greatly benefitted from it and always failed to get well/worsened whenever I took thyroxine (T4), either on its own, in combination with T3 or as part of an NDT. As I assume you intend to prescribe T4 for me in the future, I am, as you suggest, “disappointed” and do not look forward to the return of the unremitting bone pains, headaches and crushing fatigue (amongst many other things) which will ensue.
Whilst I’m sure T4 is a beneficial drug for many hypothyroid patients, for those of us - and there are many - who have been a long time undiagnosed and/or have Hashimoto’s disease, the auto-immune consequences and knock-on physiological stress to our adrenal glands creates problems with converting T4 to T3; the T4 builds-up in our bodies, we remain hypothyroid and yet look overmedicated in our TFTs. Although you have been my GP for only a short while, I think you know my history: a thyroid specialist was certain that, from my medical history and photographs, I had been hypothyroid at least since the 1970s but probably from childhood; I was actually diagnosed in 2009 and started on T4 in 2010. Hence, the NHS failed for decades to diagnose my condition and that of comorbid coeliac disease, precipitating the conversion and adrenal problems I now have, which necessitates my use of T3. In 2007, my mother actually died from undiagnosed hypothyroidism, having suffered appalling myxoedma madness and horrendous ascites before falling into a coma, from which she never recovered.
I do understand that the NHS has many calls on its money and that hypothyroidism is certainly not a ‘sexy’ condition which attracts money-spend. However, frankly, it is galling that I am to be prevented from having a drug which helps me greatly when the NHS/NICE system wastes so much by failing to stand up to the pharmaceutical industry. I do appreciate drug companies must recoup their considerable costs and make a profit, and few would deny them a handsome profit, but the profits that they earn, at the patients’ and taxpayers expense, is scandalous: you state that the NHS pays £10,000p.a. for my 1456 tablets from a (monopolistic) supplier, anywhere else in the European Union the most these would cost today is £228.85; from other countries, even less. You will know far better than I the scale of such abuse and it is a disgrace which the NHS and governments fail/refuse to tackle. Furthermore, the scandal is greater for the fact that, as I write this, Mercury Pharma is being investigated, once again, under the yellow card scheme for faulty batches of T3 (from which I am still recovering).
I am copying this letter to my local MP and to the Secretary of State for Health, in a bid to add yet another voice to this issue.
cc Local MP
Mr. J. Hunt, Secretary of State for Health