After I had my Liothyronine prescription stopped abruptly in May 2019, with my formal complaint only responded to a few days ago with a snotty, lying, patronising letter sent to the wrong address, lots and lots of research, evidence gathering via FOI and SARS requests and trawling though minutes of meetings, help and support from members of ITT Improve Thyroid Treatment , DEVON UK Thyroid Support and on my Somerset Thyroid Support UK, I am very happy to report that the Hospital have caved in to the pressure and agreed to allow my endocrinologist to prescribe me Liothyronine again! Whoop whoop! 😊😊😊
Sadly it’s only me at the moment, obviously to shut me up as I was getting ready to take them to court! I was making it quite obvious that’s where we were going next.
Will probably not believe it until those tablets are actually in my hand!
Will also not stop fighting until everyone has the medication they need xx
Written by
CaroleM-A
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I, too heard yesterday that, after 4 years and two NHS Endocrinologist Consultants stating my need to be prescribed Liothyronine, the CCG has finally agreed that my GP can prescribe it!
Well done you! I know Cambridge CCG has been anti-T3 for years, even though some doctors were keen to prescribe it. Do you know if they've changed their policy? Or was it just your personal battle?
I’m guessing that it’s just me but that is purely a guess. The GP is partly to blame I suspect because he won’t do anything to put himself out. I’ve had issues with him before when he has blatantly lied about not being able to prescribe certain medication. But I kept pushing and when he told me before Christmas that the CCG refused, I asked what would happen to me without the T3 because I can’t tolerate Levothyroxine. So he said that he would contact them again. I thought that I would have to get difficult. But I haven’t got the prescription yet, so we shall see!
In Norfolk we had a tough 3 year long campaign nd now it's allowed for any patient who needs it. But fighting like this is so hard - and unacceptable when we're not always well anyway.
And for goodness sake, it's a long-since licensed drug, and all national guidance says it can be prescribed if you need it!
I think the next challenge will be to have to prove you have a medical need, as without a properly managed trial by an endocrinologist confident in prescribing T3 - how would one know ?
I was refused a trial by endocrinology - a diabetes specialist, because my TSH was at 0.01.
I'm am post RAI thyroid ablation in 2005 for Graves Disease.
I then self medicated and that " light bulb " turning on in my brain very evident.
I've now moved to NDT as it feels softer on my body and coming up to 4 years down the self medication road, much improved and haven't seen a doctor in 4 years.
In fact the whole situation trying to get help through the NHS simply exacerbated my symptoms - it seems I had to stay away to get better - ironic really, isn't it :
I had to treat myself to have the strength to fight and find the evidence myself to back up my case. It also helped that I have a legal background so my letters to them weren’t emotional, just facts with legal arguments
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