Keeping T3

[marigold22]

I’m trying to find a link to the statement or paper stating that once a person has had a T3 prescription they cannot be taken off it. I’m asking for a friend who is currently going round the Fight for T3 loop. A private endo asked her GP to prescribe T3, they did that for a while but her GP has now told her she doesn't need it. Grateful for any help

[SeasideSusie Remembering]

marigold22

As far as I am aware an NHS prescription for T3 is initiated by an NHS endo after a trial. If the NHS endo agrees the patient should continue with T3 then he asks the GP to take over prescribing. The prescription should not be stopped unless the patient is re-referred to the endo and the endo decides if the patient comes off T3 or continues with it. I'm surprised your friend's GP prescribed T3 on the NHS on request from a private endo, maybe the GP didn't know the protocol. As it was a private endo then your friend was fortunate that her GP actually prescribed on the NHS.

I can think of only two things here:

1) The private endo writes to the GP and states the case for why your friend should continue with T3 (but she should be prepared that she may have to pay privately for her T3 in future)

or

2) Your friend is referred to an NHS endo to see if they will agree to prescribe on the NHS.

[marigold22 in reply to SeasideSusie]

Thank you SeasideSusie . She is in a horrible merry-go-round of a private endo plus various GP's. She was verbally abused by an NHS endo and is scared to find another NHS one. I guess her next step is to find an NHS endo who is kind and understanding of her situation, which is that her T3 blood results show that she is in dire need of T3.

[SeasideSusie Remembering in reply to marigold22]

She was verbally abused by an NHS endo and is scared to find another NHS one.

I fully understand, I had a similar experience 20 years ago amd would never see an NHS endo now. It might be worth your friend considering asking fhe private endo for a private prescription, if Thybon Henning brand is stipulated it can be obtained for 50-60p per tablet of that is within her budget. Alternatively she could self source without prescription, Tiromel is possibly the cheapest.

[marigold22]

Thank you. Sadly she's got to the stage of no job now due to her symptoms and doesn't have much money spare, to buy privately. I've been trying to help her to move forward with her health but it's become clear that the system is truly rotten

[Hay2016 in reply to marigold22]

Not sure if you’ve been onto ITT (improve thyroid treatment) on Facebook. They have template letters to send to relevant people. But seaside Susie is correct in nhs endo can only initiate t3 and the RMOC guidelines basically say those prescribed privately can jog on. Saying that gp has prescribed so hopefully they’ll take that into account.