Has your CCG said your doctor can't prescribe T3? - Thyroid UK

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Has your CCG said your doctor can't prescribe T3?

TaraJR
TaraJR

A simple question - Have you been told that your doctor wants to prescribe T3 but they 'are not allowed to', or the CCG won't let them? I'm part of the group who compiled the dossier for Lord Hunt and NHSE. We only need the name of CCGs, to list as many as we know. NHS England have said that local CCG formulary positions should be in line with national guidance, so a blanket ban is not acceptable.

43 Replies
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Yes, my GP keeps telling me she can’t prescribe T3, she’s not allowed neither would any NHS Endocrinologist from my hospital!

My CCG is North West Leicestershire.

Please let me know what will happen. Thank you.

Wyre Forest CCG (Worcestershire) refuse point blank to prescribe T3.

Hidden
Hidden in reply to marigold22

They will prescribe if you were being prescribed T3 prior to new regs. They will not do a T3 start up on new patients. NICE guidelines state this protocol

Howard39
Howard39 in reply to Hidden

Hi

Are you saying that if you’ve had it for 17 years and then it was stopped due to cost etc you should still receive it?

Thanks. Without it my t3 is nil.

Hidden
Hidden in reply to Howard39

That is exactly what I’m saying Howard. They cannot stop it. 17 years. Disgraceful. I’ll find you the NICE guidelines link. Write to your CCG (email is best), quoting the guidelines and briefly outlining your history, and copy in your MP and GP. Back in a mo

kissemiss
kissemiss in reply to Howard39

I have also been on t3 for over 18 years and would have 0 t3 if Liothyronine was removed from me. Can you accentually survive without t3 in the system??

Howard39
Howard39 in reply to kissemiss

Hi

No not at all.

Hidden
Hidden in reply to Hidden

Howard. I can’t find the ref I’m looking for and am in a rush to get out. Get in touch with one of the admins who will give you the link / info.

When I get back from 3 day break I’ll get back to you

marigold22
marigold22 in reply to Hidden

I was first prescribed T3 in 1995 but still got sent to endo to continue prescribing. Even getting T3 from endo at Queen Elizabeth Hospital Birmingham(teaching/research hospital) is a fight every 6 months.

North Derbyshire CCG. And now on a second opinion also Sheffield Royal Hallamshire Teaching Hospital Trust

Hidden
Hidden

In Scotland but my story was in the dossier. My health board is NHS Tayside.

My wife has been told (last week) by her endocrinologist consultant that they will not prescribe T3 as it is currently "banned" in this area. Musgrove Park Hospital, Taunton and Somerset NHS Trust, Somerset CCG.

My GP refused and endo (Cumbria). I contacted my mp who contacted the CCG who wrote a letter explainining protocol for me to give GP and endo which basically said After referral to nhs endo (not private) the endo can initiate prescription for 3 months n if successful the GP must continue the repeat prescription. This took 6 months to achieve. I sent copies of the letter to the hospital and my GP.

Somerset CCG have refused to prescribe me T3 even though I had letters from 2 consultant endocrinologists supporting my need to continue on T3 that I had been getting on NHS prescription for over 20 years.

I was told at my last meeting with the Endo at Shrewsbury (Shropshire) that they were withdrawing T3 from all patients regardless of clinical need. I have to say, this man appeared delighted at the feeling of power that this gave him, until I told him I lived over the border in Wales where he had no jurisdiction... he signed off on my prescription for another 12 months!

CCG for Airedale Hospital are currently reconsidering their previous ban. Consultant thought it would be sorted by now but taking longer than expected.

Surrey Heath Endo wrote in a referral letter (to a geneticist) that his department ‘do not offer t4/t3 combination therapy’

I have been referred to 2 NHS Endocrinologists Dorking and Guildford who have both said they are not allowed to prescribe T3 by the CCG. I am still fighting and hoping for yet another referral to someone who can.

My gp was happy to refer me to request continuation of T3 to RVI Newcastle firstly and after refusal to see me tried North Tyneside Hospital both denied request and wouldn’t see me . I had been prescribed from the first diagnosis in ‘93 London T3 only and used satisfactorily up until 2010 when Sunderland where l had moved to decided to put me on levo T4 only

I now self medicate with NDT after being refused

NHS Fife refused too.

Even more fundamental - endo that I was referred to by GP (falls under of NHS Horsham and Mid Sussex CCG) simply does not believe in prescribing anything other than T4, so I never found out if the CCG would pay for T3, combination T3/T4, or NDT. Also does not believe in testing cortisol, FT3, rT3, vitamins etc. Completely dismissed the idea of such tests and prescribing anything other than T4 out of hand. Re-training (or dismissal) required. After that, might be able to find out if CCG will pay for T3 etc. If my self-medication with NDT works, I'll be going back to the GP to see if they will pay for it without having to go back to the hopeless endo.

BumbleyM
BumbleyM in reply to JumpJiving

Had exactly the same reaction from my Endocrinologist- my GP has referred me to another one, as he ( GP) says that he can only do tsh and t4 tests once a year...

TaraJR Please put a link to the paper - "NHS England have said that local CCG formulary positions should be in line with national guidance, so a blanket ban is not acceptable."

TaraJR
TaraJR in reply to marigold22

I haven't got that in writing yet, but we have been told that is correct. I will update as soon as I have more.

I believe the Royal Liverpool Hospital - so presumably Pan-Mersey CCG - will allow patients on liothyrinine to continue but not allowed to prescribe to new patients.

Thank you so much for everything you're doing.

Chelmsford in Essex

Suffolk - same story - no new t3 prescriptions, NICE being given as the cause....

Hi, I've been told by my doctor that she is not allowed to? Plus she has asked the local CCG and they have refused? I am in Stourbridge, in the West Midlands - so I think this is Dudley CCG.

Dudley CCG - ' Liothyronine: There is no robust evidence on the use of liothyronine either alone or in combination with levothyroxine.'

This is taken from their prescribing policy document and what I was told at my endo appt last November when I asked about a trial of T3, as was not improving solely on Levo.

I have the DIO2 issue but she wasn't interested.

Have now privately sourced NDT (Thyroid S) and so far so good.

Endo did write a private script for Armour but after being quoted £500 for 3 months supply I didn't bother!

Is there any chance you could pm to let me know where you got Thyroid S please. I’m on T3 and Armour but alarmed at price increase in Armour and threatened with withdrawal of T3.

Sure. No probs.

South Worcestershire CCG has stopped my GP from prescribing T3

My gp can no longer prescribe t3 but the endo I was referred to at Gloucester Royal was happy to do so. I went to my appointment prepared for a fight but she looked at my medical records & said she could see I was much healthier on t3 only. Feeling very relieved!

Hi Yes my endocrinologist consultant in Airedale area said he would prescribe T3 but I would have to go to France to pick up the prescription as T 3 currently not allowed to be prescribed in England.

I said I would try and get all my vitamins/ minerals to optimum level by diet first and continue on Levo but if that failed I would then go back to ask for prescription.

I have had TT thirteen years ago and although TSH undetectable T4 is only 14 and T3 was only mid range.

Bournemouth hospital endo flatly refused to prescribe T3. Said there is little evidence it works and it’s just not prescribed on the NHS

Yes, my GP and endocrinologist wont prescribe T3 due to CCG regulations, they say they are unable to prescribe armour thyroid or T3. My doctors took away the armour thyroid in 2017, although I had been taking this since around 2010, GP said they were unable to prescribe and endo will need to put me on levothyroxine immediately. This was when I had been in hospital as GP had over medicated me for some years and the endo was reducing the dosage slowly. I was experiencing withdrawal symptoms but drs said it would be clinically beneficial to just stop the armour thyroid and put on correct dose of levothyroxine. Thankfully I had enough armour thyroid to reduce slowly.

North East Essex CCG

My NHS endocrinologist knows I am buying T3 as I put on 2 stone in weight on levothyroxine and felt very unwell. The endo was interested in how much my tablets cost as he said others are in the same situation.

Its just so disgraceful they won't acknowledge there are individuals who feel unwell on levothyroxine.

Many thanks to all who have responded so far. I have 'liked' responses, to indicate that I have seen them and saved the information, although obviously the national situation is obviously still very bad concerning CCG blanket bans.

Somerset CCG. My T3 was withdrawn without notice or discussion.

I'd had 14 years of ill health on, initially, Levothyroxine, then Armour. My enlightened endocrinologist at Musgrove Hospital in Taunton suggested a trial of T3. It gave me my life back. It was withdrawn in 2014 and I've been struggling ever since.

TaraJR
TaraJR in reply to gillykins2

Thanks for this, although I am sorry to read it. Many heart rending stories have come out the past few years. Somerset CCG was added to the list of those with blanket bans, and not followingnational guidance. The list will be reported back to NHSE, through the dossier combined groups, who continue to press hard for improved treatment.

Yes, mid-essex CCG. I was seen by an endo in the neighbouring CCG who said he would want to put me on combination therapy, I have remained unwell for 20 years despite mostly being 'optimum' and recently tested as having heterozygous faulty DIO2, but couldn't because I'm mid-essex.

Katticus our consortium of groups is regularly reporting to NHSE the CCGs who will not allow prescribing T3. Do you have the mid Essex CCG policy on writing or an online link? Or could you ask them for it?

google.com/url?sa=t&source=...

Katticus many thanks. This is going on our database which is regularly updated and sent to NHSE. Mid Essex is wrong. I can't get 2 of their links to work either! The RCP does not say that, it references the NICE November 2019 guideline. And NICE does include references to RMOC (the detailed T3 prescribing guidance). But Mid Essex does not reference RMOC itself. Mid Essex needs to be challenged on this.

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