Liothyronine under threat - an update

[scorp1o]

Just a brief follow up to my earlier post about this issue. You may recall that I attached a copy of the PresQuipp DROP list on which I felt the document I had seen was based. Today I spoke with the CCG pharmacist/advisor and she confirmed that it is indeed based upon that list.

We had a pleasant and helpful exchange in which she acknowledged that the DROP list is scary in that it acknowledges no circumstances in which T3 might be prescribed and suggests only levothyroxine, which is far from comforting to those of us who cannot tolerate it. She said the CCG advice/proposal (the one I saw) was an early draft which had to be substantially changed. She said that it was chiefly designed (in view of cost) to address patients who have no clinical need to be in T3 by checking their medication and needs and removing them from T3 if appropriate but (and here's the rub) those who had a clinical need could still be prescribed by their GP. Now this seems to me to hinge upon several points:  it depends on whether you have a GP willing to buck the clearly signposted thrust and assert independence; it depends upon an acknowledgement of clinical need defined how??; it depends upon the revised document actually saying what she says it will. She seemed pleasant, professional and helpful and I have no reason as yet to doubt her - but I have been bitten before.

She said she would give me sight of the revised document toward the end of June and as soon as she does, I shall share the outcome.

We had a brief discussion about how NHS England would be well advised to spend some time addressing the issue of patients and the NHS being held to ransom by monopoly providers. I quoted the prices in other EU countries and she was amazed (as indeed am I) but sadly there seems to be no movement to do anything at all about this daylight robbery.

So there we have it and there the matter rests for the moment. Meanwhile, a heartfelt thank you to all who have been so helpful in directing me to other sources of supply should push come to shove. The idea of buying drugs online does not sit easily with me but I am reassured by several members of the trustworthiness of various suppliers, which is more than helpful.  I'll be back with info as and when I get it.

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scorp1o - thank you for reporting back and well done for speaking up for us thyroid sufferers.

[Pookie50]

Thank you Scorp1o for the update.  It is indeed very worrying for anyone who needs T3 to feel well.  I will watch with interest. 

I clearly showed a clinical need for T3 having the DIO2 faulty gene, meaning conversion of T4 to T3 is impaired, plus 7 years of feeling ill on T4 only, then 7 years brilliant on T4/T3 combo. Plus my original Endo confirmed in writing to my GP that my health improved markedly from the addition of T3.  None of the above was of any interest and my GP and Somerset Endo were not prepared to stand up to the CCG.  I had a miserable year in 2015 both physically and mentally until I went down the NDT route.  I'm just glad I no longer have to rely on the medical profession, unfortunately I don't trust them any more.

Good luck, keep plugging away.

[marigold22 in reply to Pookie50]

All this is very frightening. Could you please tell me how and where you got the DI02 Test.   I can only take T3 and will need to try & prove it.  Many thanks. x

[Musicmonkey in reply to marigold22]

Just a word of warning marigold22. I had the DIO2 test last year confirming I do have a faulty gene, but it appears the NHS don't pay much heed to it. At least so far in my case anyway.

Recently there has been a bit of a U-turn by the Endo in my case who initially suggested a trial of T3, then wrote again not only suggesting I was over-medicated, but that I should never have been diagnosed with UAT in the first place (despite a T4 below range!).

[Pookie50 in reply to marigold22]

Please also see reply from Musicmonkey. Unfortunately they don't recognise the DIO2 test so it's probably a waste of money.  Information about the DIO2 test can be found on the Thyroid UK website. 

[loueldhen]

I approached my pharmacist who said - liothyronine is one of several drugs that the pharma companies milk. He said I could do nothing about it.  I hope he's proved wrong.

[scorp1o]

That's exactly what I mean! Why should we and the NHS pay so much here when it costs pence in Europe? Madness!