T3 removal saga continues

[cazza1001]

In my previous post I talked about the sudden removal of my T3 private script. And thank you for the great advice I got back especially the NHS guidelines which were breached by the sudden removal.

My GP referred me to Sussex Endocrinology and she received am email back telling her to adjust my medication.

Brace yourselves for this ...

I am on 150 levo and 40mcg liothyronine ( I believe the T3 is equivalent to 120 so a total of 270 of levo but Sussex endo say its equivalent to 160 so 310 levo ) - I should add I am very well and bloods all in range.

The advice to GP is to bring down my levo to 120 and remove all T3 overnight. So a reduction of half my current meds. They have not seen me in person.

I have the NHS guidelines in front of me and it clearly states T3 should not be abruptly stopped and there should be a slow transition to monotherapy - it states 5mcg should be replaced with 15mcg of levo .

So based on NHS guidelines I should gradually transition from 150 mcg up to 270mcg of levo.

Ideally I want to stay on what I'm on but I realise that I will probably have to transition over to monotherapy.

Can they really reduce my medication that much ? Am I on a stupidly high level of medication ( note bloods are in range but at top of range).

I don't want to deal with Sussex Endo now ... am I allowed to ask to see a consultant in a different County ? My original private endo works out of an NHS hospital in surrey but says they are not taking out of county referrals.

I am beyond frustrated and stressed - any help would be gratefully received.

[arTistapple]

I would think the first thing they will want to argue is your calculation of how much you are being reduced by in Levo terms.

Stick to the guidelines only re: taking you off T3 suddenly.

I hope someone can help you with this outrageous situation.

[crystalcat10]

yes you can ask to be referred to a different trust / area / county . but beware

i did and ended up with an even worse one .

[serenfach]

Two things - I would write to the Endo and ask why they are halving your prescription when you are well and bloods in range. Have they taken your Quality of Life into consideration? (they dont like that phrase!).

Then, if no logical answer, go your own way like many of us do here, and buy what you need privately. They seem to want to fiddle with your health just to be seen to be doing something, and to hell with how you feel. Good luck!