T3

[Odbod]

please help I have been taking T3 liothyronine and levothyroxine for 20 years.My GP is saying she can no longer prescribe T3 for me.I did try once before to come off this many years ago I was so poorly I could hardly function.I am terrified of going back to this state,

[MichelleHarris]

This is disgusting!

Can you get a referral to an Endo? x

[pennyannie]

Hello Odbod

Well first and foremost - you are not an Odbod -

We are hearing of many patients in a similar position and it is an absolute disgrace that the NHS CCG's continue to put this pressure on the prescribing of Liothyronine.

I don't believe you doctor can ' just ' stop this prescribing as I believe the next step is to refer you to an Endocrinologist who will ' assess ' your suitability for T3.

Be aware you may ' fail ' whatever ' tests ' the endocrinologist deems acceptable but this gives you time to get your ducks in a row, read up on here of the other patients in a similar position, and obtain the appropriate papers and articles to support your prescription.

I'm with Graves Disease and had thyroid RAI ablation in 2005 and became very unwell some years later. I was refused a trial of T3 a couple of years ago and am now self medicating.

Since you have had T3 prescribed for some 20 odds years and been well on this hormone replacement, surely this medical stupidity can't be allowed to continue.

[RedApple Administrator]

Welcome to the forum Odbod.

What doses of T4 and T3 are you currently prescribed and what reason does your GP give for not continuing to prescribe? Do you have your most recent thyroid blood test results to share with us?

[Odbod in reply to RedApple]

I do not know my readings just that they are good.hen without by your leave I was told they were no longer allowed to prescribe T3.I take 50 micrograms of Levothyroxine and 10mcg of liothyronine a day.I live in Northampton is there a private Endocrinologist I could go to who might be more sympathetic.

[SeasideSusie Remembering in reply to Odbod]

Pennyannie is correct. You have to be referred back to your endo who will make the decision, it's not up to your GP. SlowDragon knows more than me about this.

[Odbod]

what happens if he/she decides no.Is there a sub,or can I get a private prescription and pay for T3

[EbonyEvans in reply to Odbod]

You can ask for a private prescription which you would be responsible for filling. Quite expensive here but if prescribed 20mcg you can get it filed on Germany via post. I believe they are still shipping post Brexit.

[1967jojo]

Same happening to me. Ive been on it over 10 years. The costs of this have spiralled & nhs say its not sustainable. However when we all end up in hospital it will cost them a damn sight more. The BTA & BTF advise that patients established on long term T3 & are stable who change to T4 only meds may result in significant instability of the thyroid status and induce undesirable clinical outcomes!

[Odbod in reply to 1967jojo]

hi there what is the next step you intend to make.Its so awful I feel the powers that be have no idea what they are putting us though yet alone the stress.

[1967jojo]

Couldnt agree more. Im waiting for my consultant to ring for a telephone appointment then I can see where I stand. Im wondering if we put up a fight it might help. A lot might go quietly but im not one of those. Will keep you posted.

[Odbod]

I have already with my husband had a very heated appointment with my GP.She has said I will have o see a consultant and see if he will help?? I live in Northampton and can find no consultant that deals with Thyroid.I would like to see one on a private basis's as I feel they might be more sympathetic to our plight,We are all poorly enough without this added trauma.After all we did nothing to ourselves to get thyroid problems.

[TaraJR]

Some links to national guidance, which drs and CCGs should be following. Can you quote some of these?

2016 - British Thyroid Association BTA recommended “We recognise that a proportion of patients on L-T4 continue to suffer with symptoms despite adequate biochemical correction and that a carefully audited trial of L-T3 under the supervision of an accredited endocrinologist might be warranted in exceptional cases. Patients established on L-T3 who continue to derive benefit from its use should continue on L-T3. We emphasise that the decision to continue or stop L-T3 should be based on clinical need above other considerations and that the BTA position statement should in no way be used as an endorsement for discontinuing L-T3.”

british-thyroid-association...

November 2017 - NHSE Consultation (updated June 2019) advised CCGs that prescribers in primary care should not initiate liothyronine for any new patient. The joint clinical working group considered the consultation feedback and therefore decided that liothyronine should still be prescribed for a small cohort of patients. They changed the recommendations so that prescribing of liothyronine should be initiated in appropriate patients by a consultant endocrinologist in the NHS.

england.nhs.uk/wp-content/u...

Crucially in June 2019 - the Regional Medicines Optimisation Committee RMOC published its liothyronine prescribing guidance with comprehensive information for clinicians and CCGs.

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

November 2019 - NICE produced its new guideline which also recommends that liothyronine should not be routinely prescribed. However, NICE does reference the RMOC guidance and the understanding is that, if NICE makes reference to something, then NICE supports it. The NICE links to RMOC guidance are not easy to find, but they are included nice.org.uk/guidance/ng145

Does this help?

[fayray in reply to TaraJR]

Who should I write too to get t3 reinstated I’ve tried the minister for health I’ve tried my local authority 😩

[TaraJR in reply to fayray]

Which CCG are you in - that is which area do you live in?

[fayray in reply to TaraJR]

Nottinghamshire x

[TaraJR in reply to fayray]

Nottinghamshire is not a good CCG for T3 - it currently does not allow it. An awful decision for patients.

The joint thyroid patient groups are working very hard to get things changed across the UK and we have made some good progress. Of course the Coronavirus situation has put things rather on hold, but we're ready to fight again when it eases a little.

You've contacted your CCG already? Have you quoted the guidance in my earlier reply on this thread?

[fayray in reply to TaraJR]

Hello yes not getting anywhere

[TaraJR in reply to fayray]

Did you quote relevant sections from each of those guidance documents?

[TaraJR in reply to fayray]

Also, use this written answer to the parliamentary question asked by Lord Hunt of Kings Heath.

He refers to the T3 Prescribing Survey written by the joint thyroid patient groups ... thyroiduk.org/wp-content/up...

The written answer is here and is significant ...

members.parliament.uk/membe...

[fayray in reply to TaraJR]

Thank you

[fayray]

I have the same issue