I've just been informed that I won't be prescribed liothyronine anymore by my gp or endocrinologist as it's not permitted anymore I'm under gravesham and Dartford. I've been on this since 2011. I take 150mg levothyroxine 10mg liothyronine one day then the next 125mg levothyroxine 10mg liothyronine. My gp said to now start 150 daily of levothyroxine now there isn't any liothyronine. And they will monitor my well being!!!.. can anyone please give me some advise on how to source liothyronine please. I'm worried as I have been on 200mg levothyroxine in the past and still didnt feel right. Hence that's why my endo started me on the liothyronine. I also have Anaemia and take 210mg 3 times a day of ferrous fermate. And take desuin for the d3.
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NICOLA74
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Thankyou so much for the info.... wow 24 years suffering I know the feeling I've been struggling for 19 years .. it starts making you feel like a hypochondriac and a pain to the go. But they really don't understand it enough, I'm seeing my gp on Tuesday and asking to be re referred back to the end . I'll let you know how I get on
Yes do - hugs 🤗 they really do not have the full picture at all ! My GP said I must be bored - when I said my eyes were closing whilst driving at 60 mph in the morning after 8 hours sleep 😖
I much prefer the natural approach rather than at synthetic- I talked to many pharmacists about it -
So shocking I know. My Dr tired to give me anti depressants, when I told him I wasn't depressed!! Sending a 🤗back. It's nice to know that there are other people who know how I feel. Other wise I think I was going insane.
It made a HUGe difference going on AIP protocol ( and I already cooked from scratch most days & was Gluten free !) after 6 weeks of the AIP MY EYES OPENED & I went from 16.2 to 13.6 ( I’m 5’11 ) in just 3 months - a size 20 to now 16 - its strict I warn you
Then when I started NDT Alastair October a year ago also another big boost getting that T3 I suppose ?
I do still wax n wane a bit - but that may because I’m busy !
My muscle weakness in legs improved & my eyes again looked completely different !
I move differently!
I can hoover !
My friends all comment ( unprompted) how different I am -
I missed out on soooo much - family days where I had to rest at W/ends etc etc I’m sure you recognise this ?
The Book that started it off was Amy Myers MD
Isabell Wentz
My GP is now reading my Amy Myers !!! After seeing my change !
The AIP is boring , time consuming - you need to cook in batches so enough for a few days is my advice - but it has worked for me ! As I was already Gluten free - I can only assume it is avoiding dairy , soy , grains thaT has helped ?
Me too - ! Had a busy tech day which always exhausts me - now because I’m
On the AIP Regime I have to cook ! When really I just want to curl up with a glass of red wine & a gluten free lasagne like “ normal peeps “ ! But now I’m grain free too. I can’t just grab any thing !
First that's not correct. They are just trying to bully you off T3
If you were originally diagnosed as having clinical need for T3 by an NHS endocrinologist then you can, and should be able to continue getting on NHS
You may have to see your NHS endocrinologist to confirm that you have ongoing clinical need. They need to confirm this in writing to your GP and prescription can then continue
New NHS England Liothyronine guidelines November 2018
Hi Slowdragon, have the new NHS England Liothyronine guidelines November 2018, been discussed on this forum at all?
I haven’t seen them before and I’m a bit alarmed - for example the warning about interruptions to supply. I feel as though we are just cast to the wolves, NHS takes no responsibility for us if we dare to not be well on Levothyroxine, as if we can do anything about it !
Oh definitely an improvement regarding those aspects but it was the new NHS England Liothyronine that continued the limitation of prescribing T3 that was worrying.
But it does, at least state if still have symptoms when vitamins are tested and good and TSH under 1.5 then you SHOULD see an NHS endocrinologist
The trouble is many Junior or mid level endocrinologists don't want to upset their career prospects or their employers by going against CCG and prescribing T3.
Or as I found with my first endo, they're even against prescribing thyroxine. I thought he would have a vast experience of the subject and be very senior as he teaches as well but he said he wouldn't go against guidelines or against his peers.
But yes, we might be going into a new phase of a wider, more comprehensive and more holistic approach. Fingers crossed!
Please take note of SlowDragon 's reply. Advice to doctors from the BTA states that patients whose health is stable on NHS-prescribed T3 (having not recovered their health on T4) must NOT have their T3 prescription rescinded. This has been the subject of much discussion on the forum over the last couple of years. Also have a look at the ITT campaign page on Facebook, if you're on there.
I agree with Slowdragon that they are trying to bully you off T3. It’s untrue that ‘it’s not permitted anymore’. Your comments in your post show that you already know that this will make you poorly. Health is too precious to squander on some experiment so someone can tick a box. I feel you should refuse. Return immediately and say how poorly you feel. You could get a private prescription and order T3 online but this could be a different brand and might not suit you. A change to NDT would also take time to adjust to your needs so would be no quick fix. Your health and well-being, your life, is worth fighting for.
It may be untrue from the position of the NHS but it definitely isn't untrue from the position of many CCGs who are of course, empowered to make local commissioning and prescribing decisions, and it isn't a case of being bullied. I'm no push over, and can more than argue my case, yet here I am, still without my T3 which was withdrawn last year - despite the written support of 2 Endos, a positive DIO2 test showing me homozygous for the polymorphism, private blood tests showing my FT3 on the floor without exogenous T3, me explaining time after time how ill I'm feeling without it, an appeal by my MP ....... I'm not being bullied, rather it's plain and simple intransigence on the part of the CCG. It's one thing for people to be encouraged to appeal the decision if they wish to, but unless someone has been in the position of trying to overturn such a decision - whilst of course feeling unwell from the absence of their T3 and whatever other health conditions they have - they can't appreciate how being advised to simply refuse to accept it, is not necessarily going to be terribly helpful.
Hi MaisieGray, thank you for expla8n8n g, I haven’t been through that myself, yet. I do think 5hey are bullying, but that is not to make any criticism of you.
I have sent you a PM regarding the supplier of NDT
Thank you everyone for your advice, I don't feel so alone now! I went to see my GP( 2 weeks for an appointment) he told me that he couldn't carry on giving T3 to me as it wasn't being manufactured in the UK no more, that it's out of his hands really. He has written to my endo to ask for advice on what to do regarding my T4 medication. I've now taken my last T3 , I was taking 150mcgs thyroxine 1 day, 125mcgs the next plus 10mcgs of liothyronine every day, had been for 7 years!GP said to take 150mcgs thyroxine every day and they will monitor me every 6 weeks. I was taking 200mcgs thyroxine in the past which I felt awful on before before they endo started me on the T3. If I was to go to a private Endo, could they provide me with a prescription to get T3 privately?
The Facebook group ITT(improve thyroid treatment campain) is great, they have a letter and a 95 page evidence proof for us to use and send to our local MP to try and get them on our side and get it prescribed again.
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T3 prescription from GP
T3 - convincing my GP
Been told by docs to lower dose but scared as feeling ok ish!
