T3 not available anymore from my gp or endo - Thyroid UK

Thyroid UK

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T3 not available anymore from my gp or endo

NICOLA74 profile image

Hi,

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.

31 Replies

Disgusting treatment -

Can you try NDT ? I take Nature Throid

NICOLA74 profile image
NICOLA74 in reply to Avidreader

I know it's so bad.. how would I go about getting NDT?

Avidreader profile image
Avidreader in reply to NICOLA74

I see a private Endo

I buy from a UK pharmacy it comes from RLC labs in USA ( Hilary Clinton takes NDT )

I also have seen it on <online>

There’s also a UK source I’m looking into pasture reared pigs -

But get advice from others as I really am only just 1 year new to this after 24 awful years on Levothyroxine ( told I had m.E ) 😖

NICOLA74 profile image
NICOLA74 in reply to Avidreader

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

Avidreader profile image
Avidreader in reply to NICOLA74

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 -

NICOLA74 profile image
NICOLA74 in reply to Avidreader

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.

NICOLA74 profile image
NICOLA74 in reply to NICOLA74

So you're feeling much better on the NDT then?

Avidreader profile image
Avidreader in reply to NICOLA74

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 ?

Avidreader profile image
Avidreader in reply to NICOLA74

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 !

If you want my Endos name DM me 🤗🍷

NICOLA74 profile image
NICOLA74 in reply to Avidreader

Crazy!

NICOLA74 profile image
NICOLA74 in reply to NICOLA74

I'll email you

Julie-W profile image
Julie-W in reply to NICOLA74

I know a supplier as my daughter used to take it. Please pm me

Hi

Pls inbox me too

SlowDragon profile image
SlowDragonAdministrator

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

sps.nhs.uk/wp-content/uploa...

BTA guidelines

british-thyroid-association...

Also look into getting DIO2 gene test

If you test positive then this is becoming increasingly recognised as reason for needing T3

bluehorizonmedicals.co.uk/t...

thyroiduk.org.uk/tuk/testin...

There's an endocrine NHS centre in Kent - Maidstone I think that offers DIO2 gene test on NHS and guarantees T3 prescription if you test positive

Find more about that on Improve Thyroid Treatment campaign on Facebook- post from a member about January this year

Professor Toft recent article saying, T3 may be necessary for many

rcpe.ac.uk/sites/default/fi...

DIO2 gene test article

thyroiduk.org.uk/tuk/testin...

Aurealis profile image
Aurealis in reply to SlowDragon

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 !

Those new guidelines made depressing reading.

SlowDragon profile image
SlowDragonAdministrator in reply to Highland49

I thought guidelines were actually quite helpful

Clearly states On Levothyroxine TSH should be between 0.4- 1.5

And to ensure test vitamin D, folate, ferritin and B12

Should be very useful in getting GP’s to test vitamins and increase Levo dose

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.

SlowDragon profile image
SlowDragonAdministrator in reply to Highland49

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!

SlowDragon profile image
SlowDragonAdministrator in reply to Highland49

This detailed report should cause a stir

drive.google.com/file/d/1c2...

Thanks SlowDragon, that made very interesting reading. We'll never know the true number of people affected by all this.

And we shouldn’t have to SELF MANAGE !

SlowDragon profile image
SlowDragonAdministrator

See paragraph 4 on this NHS Scotland letter

gov.scot/binaries/content/d...

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.

Hi NICOLA74,

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.

MaisieGray profile image
MaisieGray in reply to Aurealis

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.

SlowDragon profile image
SlowDragonAdministrator in reply to MaisieGray

Which CCG area?

These brand new guidelines clearly state that if your NHS endocrinologist says you have clinical need, in writing to GP you should be prescribed

New NHS England Liothyronine guidelines November 2018

sps.nhs.uk/wp-content/uploa...

Clear legal outline

healthunlocked.com/thyroidu...

Several members have successfully overturned this decision by bullying CCG's

Aurealis profile image
Aurealis in reply to MaisieGray

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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