Some of you might remember, that I wrote a post back in July about my referral to see a Endo for continuation of prescriptions for T3 Lithyronine. Needless to say, it did not go well and I ended up making a complaint to the PALS department. To be fair to them, they have followed it up, but it is a white wash. This is the answer I got about T3 and why it is not being prescribed in future. We all know it works, although they say it doesn't. The real reason, is funding and how expensive it is to the NHS at this present time.
I will type it as it is quoted word for word.
The paragraph is headed Thyroid UK (I had mentioned the medical evidence which supported the T3 Lithyronine, in my complaint)
"The subject of T3 administration was debated in the Annual British Endocrine Society Conference in November 2015. Clinical evidence was presented for and against T3 treatment by leading thyroid endocrinologists.
The vast majority of endocrinologists in the UK do not prescribe T3 (we already know that and why). Thyroid UK and other patient groups are lobbying the various bodies to prescribe T3 but until the Endocrine Societies endorse this medication, then it will remain a drug most endocrinologists do not prescribe within the NHS."
To me, it seems that until they take their heads out of the sand and stop this stubborn behaviour and mind set, the T3 drug will remain expensive because of only one pharmaceutical company supplying it to the NHS, but if they were to endorse it, then I am guessing it would be cheaper and more assessable via other pharmaceutical companies.
The end result is that the Consultant, denied everything I had complained about but no longer will see me as a T3 referral patient and any other new referrals seeking T3 medication/prescriptions. She does not believe it works, that it is dangerous and will therefore not prescribe it. I am therefore requested to see another consultant at my next appointment or be referred back to my GP to seek other means.
Her words, "To look at other options and explore these with me which she deems appropriate in my treatment. There isn't any other option, other than T4 only. I was born with congenital hypothyroidism, I have been on T4 since I was five weeks old. I was only prescribed T3 as the T4 was not adequate enough for my needs. It was a endo that prescribed it in the first place, over ten years ago due to the mismanagement of my dose by the GP. My problems only started when I was 32 because of the wonderful GP, before then, I had no problems.
Anyway, bottom line, I have managed to secure three months supply and then I will have to finance it myself. I refuse to come off it.
Just thought I would update you. I am looking forward to hearing my new results as she expected me to reduce my T3 to 10 mcg. I have not done so, but reduced my T4 as they were over prescribed in the ranges given. The T3 was in the middle of the range, so to me that was right.
Watch this space.
Take care and keep lobbying for our rights for this medication