'heads up' for patients in Lancashire and South Cumbria wanting a T3 trail ~ "Liothyronine for NEW patients" now allowed by LSCMMG Review.

[tattybogle]

This MUST be NHS initiated prescription , if T3 trial was initiated privately , it is still coded as 'Black' ie Prescription not Recommended .

I've been keeping an eye on the LSCMMG Minutes for about a year while they review the codes for New Patients in this area... and finally despite a couple of the CCG's objecting and wanting it to be 'Black' for new patients.. it has been agreed that it will be coded 'Amber 0' (the same as it already is for Existing Patients), and their prescribing guidelines have (finally) been updated to show this clearly.

This means it's now allowed to be prescribed here for NEW patients ... previously Liothyronine was 'Amber' for Existing Patients only, with New Patients being coded as 'Grey' ~ meaning "under review, Prescription Not Recommended"

Lancashire and South Cumbria Medicines Management Group LSCMMG:

NHS Trust Members:

Blackpool Teaching Hospitals NHS Foundation Trust

East Lancashire Hospitals NHS Trust

Lancashire and South Cumbria NHS Foundation Trust

Lancashire Teaching Hospitals NHS Foundation Trust

University Hospitals of Morecambe Bay NHS Foundation Trust

CCG Members:

Blackpool CCG

Blackburn with Darwen CCG

Chorley and South Ribble CCG

East Lancashire CCG

Fylde and Wyre CCG

Greater Preston CCG

Morecambe Bay CCG

West Lancashire CCG

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"Amber medicines

Amber level 0

Suitable for prescribing in primary care following recommendation or initiation by a specialist.

Little or no specific monitoring required.

Patient may need a regular review, but this would not exceed that required for other medicines routinely prescribed in primary care.

Brief prescribing document or information sheet may be required.

Primary care prescribers must be familiar with the drug to take on prescribing responsibility or must get the required information.

When recommending or handing over care, specialists should ask primary care prescribers to take over prescribing responsibility, and should give enough information about the indication, dose, monitoring requirements, use outside product licence and any necessary dose adjustments to allow them to confidently prescribe."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

NEW PATIENTS updated 18 -Oct -2022

lancsmmg.nhs.uk/medicines-l...

"Indication:

Add-on treatment for refractory hypothyroidism despite adequate replacement with levothyroxine – new patients.

Background:

*Amber 0 – following successful 3 month trial (to be conducted in secondary care)*

Please note: all other potential causes of symptoms must be excluded. Patients are eligible for a three month trial initially with the option to continue if there is clinical benefit. Patients with a supressed TSH should be referred for a secondary care opinion before continuing liothyronine in primary care

Recommendation:

LSCMMG recommendation: Amber Level 0

Reason for decision: Suitable for GP prescribing following recommendation/initiation by specialist.

Last Updated: 18 - Oct - 2022 "

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

lancsmmg.nhs.uk/medicines-l... (Liothyronine commenced in private Sector ~Black~ Not Recommended)

lancsmmg.nhs.uk/medicines-l... (Liothyronine for resistant depression ~Black ~Not Recommended)

lancsmmg.nhs.uk/medicines-l... (Liothyronine Monotherapy ~Black ~ Not Recommended)

lancsmmg.nhs.uk/medicines-l... (Thyroid Extracts [unlicenced liothyronine and thyroid extract products] ~Black ~Not Recommended)

lancsmmg.nhs.uk/medicines-l... (Liothyronine for Existing patients ~Amber 0 ~ Suitable for GP prescribing following recommendation/initiation by specialist)

[tattybogle]

TaraJR ...just tagging you in to keep you up to date re. progress on T3 prescribing limitations around the country.

[SueHG in reply to tattybogle]

thank you, I’ve seen this one, unfortunately I live in N Cumbria!!!

[Lassithi in reply to tattybogle]

Thank you so much for posting this.., I was refused a trial several times via Chorley Endos and my GP made a referral to East Lancs and I was lucky to be added to a trial by a forward thinking Endo there although it did take 6 months and various tests it was worth the hoops.., unfortunately that Endo has gone to work in the Middle East and the new Endo (drafted in from Manchester) seems to be trying his best to take me off although I am sticking to my guns. The CCG’s in England ceased to exist in July of this year and the statutory body is now the ICB (Integrated Care Board) covering all of those previous CCG’s listed so a challenge on variations should now be easier to achieve. I still think the issue is with individual endos still having license to make up their own minds and make individual decisions based on their preference and not the patients needs and goes against all government (ICB) legislation unfortunately.

[TaraJR in reply to tattybogle]

Thanks for this. Well, one more step forward!

[jimh111]

Thank-you and well done.

[Tythrop]

Sorry to be slow, but does this mean that T3 is being prescribed by NHS in some cases ? I think I need to understand more

[tattybogle in reply to Tythrop]

T3 prescribing by NHS round the country is a bit of a postcode lottery .. some CCG's have imposed restrictions on prescribing it to any more (new) patients , only allowing it to be prescribed for patients who they had already agreed to prescribe it to ... All the Lancashire and South Cumbria CCG's have now voted to remove this restriction for their area..... very reluctantly in some cases ..... so even though that major hurdle barring prescribing of T3 to new patients is removed.. it doesn't necessarily mean it will be any easier than previously to get an NHS endo to agree to prescribe in some of these CCG's.

ie. Individual Endo's still don't have to offer T3 trials unless they want to, and they don't have to agree that it is beneficial and can be continued via the GP unless they want to ... but at least if there are any Endo's in these areas who are open to prescribing it , they are now allowed to do so for new patients.

[Tythrop in reply to tattybogle]

Thanks ..Still trickling of water is better than drought

[TSH110]

Thanks for posting.

What a palaver - I see NDT is still labelled black 🙄 if you self medicate to keep yourself well you’re effectively excluded from ever getting combination therapy. The whole situation is a fiasco.

It’s about time WE decided which thyroid hormone therapy we took, not them.

We are not naughty little children that need to be punished by withdrawing any chance of getting sweeties, we are intelligent people who have decided to manage our own health because the system has completely failed us.

I am so fed up with being patronised like this.

It’s good for those that can bear the strictures and suffering to get treated properly after all other possible causes are presumably ‘investigated’, but it’s shocking really that that they can persist in doing this to us, and that this counts as progress.

[tattybogle in reply to TSH110]

i agree , it's still not good enough .

But in terms of 'progress' ~ clearly there are some 'loud enough' voices in most of these CCG's who were prepared to argue for T3 to be 'allowed' for new patients .. and those voices are the ones that have prevailed in this review ... (over whoever it is in East Lancs CCG who clearly doesn't want to prescribe T3 ) ..... So i'll take that as a 'win' for now and a hopeful sign that the landscape is changing.

lancsmmg.nhs.uk/media/1667/...

Liothyronine RAG status review – second consultation

November 2021 ~ "Meeting to be arranged with Primary care, endocrinologist’s and medicines management to finalise RAG positions." (took them a really long time to arrange a meeting )

May 2022 ~"Feedback from Liothyronine Meeting ~ The meeting went well, it was good having AC as the chair. There were some good outputs from the meeting but the summary of them are: A framework for the RAG status for liothyronine was developed. The draft RAG statuses have gone out for comments and should be back by 3rd of June and then should be able to ratify at the June meeting. Action - Send comments to AGR by June 3rd. AGR to then bring back to LSCMMG for ratification at the next meeting."

June 2022 ~ "Liothyronine meeting – Update and finalising RAG positions AGR reviewed meeting from May and the list of recommendations from the group. The points have been put into a table and shared before the meeting. Most of the amendments from the feedback have been done, one comment from East Lancashire has not which was that they wanted Red and Black RAG status for point 3 and 4 where it has been listed as Amber Zero following discussions and feedback. There was a brief discussion within the group, and it was agreed to support the RAG status amending following consultation presented in the document. It was noted that the East Lancashire health economy preferred a Red or Black RAG status for add-on therapy. However, the group recognised that there is no obligation for specialists to commence liothyronine should they not wish to. The revised RAG positions were approved. "

October 2022 ~ RAG status finally changed from Grey to Amber on website. (no idea why it takes from June to October to do this )

[TSH110 in reply to tattybogle]

yes you’re so right - Stirling work tat!

[TaraJR in reply to tattybogle]

Good sleuthing! Are you in Lancashire tattybogle ?

[Scottii in reply to TSH110]

wonder why there has not been a focus group set up to challenge NHS guidelines where everyone could sign up to one petition - change.org - and take it to the Health Secretary - Obviously - Thousands of people in this country are suffering and not all online to see the help and support in these posts

[TSH110 in reply to Scottii]

is that how other groups do it?

[TaraJR in reply to Scottii]

There have been several petitions, but petitions don't often work. There isn't enough support for this, as they have to have a massive number of signatures to have an effect.

The consortium of thyroid charities and patient groups have been fighting this hard for several years, and have reached high level discussions, even backed by several of the House of Lords. We are getting there slowly, though I know progress seems painful

[Scottii in reply to TaraJR]

I’m glad to hear that things may be moving forward - but if GPs won’t listen where can we go - I read a book years ago when first had Thyroid issues with nodules - That Doctor Author wrote - He decided to treat the person not the numbers ! That is what’s wrong here our doctors are treating according to what numbers they have been given - The issue there is different countries or areas have different given numbers in their range - I will do the private thing again for a full picture - It’s all I can do and see if my doctor will Read my next results

[radd]

Well done tats for keeping people up to date. Great information that will hopefully give hope & help to some.

[knitwitty]

Maybe it will catch on in Merseyside, a neighbouring area, though I'm not holding my breath !

[TSH110 in reply to knitwitty]

There are some NHS NDT prescriptions on the Wirral and in the Pool so some are sympathetic there, it would seem. No idea if it extends to T3. Cambridge it’s a combination therapy desert I was thinking of going back to my roots….

[SueHG]

thanks for that , very interesting, unfortunately I live in N Cumbria, it wasn’t that one I saw.

[arTistapple]

Tattybogle thanks for keeping an eye on this on everyone’s behalf. Can’t help thinking so many things in response. People who can’t afford to go private will still have a mountain to climb. People who do manage to go private are clearly being discriminated against. Really I can’t believe we are living in the UK when I see (and experience) this tosh.

[tattybogle in reply to arTistapple]

on balance , i tend to agree with the private part... if NHS were automatically bound to continue privately initiated T3 prescription without a clause saying NHS Endo must first look at the evidence for themselves, how would they weed out prescriptions from any less than scrupulous private endo's who were just prescribing T3 to anyone and everyone with a big enough cheque book and an assertive enough manner ? ... and if it was widely known to be the case that a private prescription automatically meant an NHS prescription would follow.. then surely that would encourage a sharp increase of private endo's willing to prescribe once or twice at great expense just to line their pockets with consultation feels and blood test fees .

I can see why privately initiated T3 patients should at least be reviewed by NHS Endo , before transferring to NHS funded prescribing ... but,, and it's a big 'but'... they haven't got enough NHS Endo's with open minds and up-to-date knowledge to make this happen properly , which leads to a monumental waste of peoples lives with yrs going by while they remain unwell in order to get the hallowed NHS 'approval'.

[arTistapple in reply to tattybogle]

Right I had not thought of that particular issue. Yes an NHS endo would have to ‘vet’ the prescription and where are they going to come from? However most of the existing private endos (UK) are usually already in the system. They are ‘cleared’ by the powers that be, before they can even practice in this country. Many, if not most, work in the NHS, so I do not see that as a huge problem - at least it should not be. The bright idea of Nurse Practitioners comes to mind here. Another discussion for another day. Still, compared to the money recently handed over to an unscrupulous pharma (or very astute group of businessmen depending on your viewpoint) I am sure something could be arranged. AND patients could get back to helping support the economy. Can I just add here that the over 65s contribute to the economy too. It’s not always directly a financial contribution. Proper treatment will help stop other associated diseases over burdening the NHS. Free carers (tongue in cheek). Free babysitters (tongue in cheek). Self employed …….

[TSH110 in reply to arTistapple]

and all the years of contributions tax etc stumped up for the good of the nation plus actually buying things that help to run an economy it makes me mad when this idea of ‘uneconomic units’ is used to describe retired people to imply they are nothing more than costly layabouts. It really needs calling out.

You don’t get a state pension (the worst in Europe apparently) till 66 now and it’s even worse for people younger than me.

[TSH110 in reply to tattybogle]

is it really any big deal giving someone with thyroid disorder T3 as well as T4? Surely it’s plain common sense if we once had a thyroid that did just that for us . Who are all these people hooked on unneccesssary t3 busy conning poor gullible private endocrinologists out of private prescriptions for T3 so they can then go on to raid the NHS of T3 for free? Who is this army of scheeming druggies? It simply does not stand up to scrutiny it’s a complete nonsense invented to deny us choice.

[arTistapple in reply to TSH110]

Oh Goodness. No doubt there will be some people who will do this. However I agree with you. Where are this army of scheming druggies? Are they talking about us?It’s a real problem in our society that rules that (may) have unintended consequences, abound. In fact that’s almost exactly what happened with T3 production. That company took advantage (or showed astute business practice) enabling the huge price hike and making the owners multi millionaires. However why were the medics prescribing it before if it was ‘useless’? Why were they also being so dishonest? The whole thing stinks

[TSH110 in reply to arTistapple]

Indeed we are their scheming druggies - mostly older ladies wanting to feel as well as possible with thyroid disorder. Who’d have thought we were perceived as such a threat to the establishment, not sick people who have thyroid disease through no fault of their own and need lifelong medication to survive. Talk about picking on the vulnerable and demonising them.

The only nutters who want T3 and do not really need it as far as I can determine are obsessive body builders, mostly men I suspect, with no thyroid isssues. Not exactly our profile are they?

[arTistapple in reply to TSH110]

The female equivalent of “Dad’s Army” comes to mind. More than a touch of hysteria from the ‘powers that be’ dealing with a bunch of mostly harmless old ladies. No offence to younger ladies. Maybe we should organise a protest in front of the Houses of Parliament from our electric scooters and accompanied by our carers. Don’t know about you but our isolation is another reason we probably can’t present a united front and be properly acknowledged. Unfortunately we can’t fly from bridges or buildings.

[TSH110 in reply to arTistapple]

Thyroid Grannies Fly High on T3 - in our dreams….

[tattybogle in reply to TSH110]

bbc.co.uk/news/uk-england-6...

LOL .......See this news report re, Rachel 75 . being a nuisance up a gantry.

[arTistapple in reply to tattybogle]

I confess to being alarmed by the Home Secretary’s pompous statement “ disruption is a threat to our way of life”. It’s the first time I feel I have had an affinity as to why journalists are keen on printing the ages of those involved. I guffawed at that. The journalists were successfully able to take a pop at everyone involved. Much was made of the ‘inconvenience’. Can you see where I am going with this? I can’t possibly get my head around the irony of it all at the moment.

[Scottii in reply to tattybogle]

It’s all well and good to say you need to see -  ‘NHS Endo must first look at the evidence for themselves,’. - Persuading doctors to refer you is nigh on impossible - When they say your within Range  

[TSH110 in reply to Scottii]

It’s rigged to prevent almost every one of us from getting anywhere near it. We are still being treated like children not adults who can think for ourselves and should be given freedom of choice of what thyroid hormone therapy we take as a matter of course, not if we fit certain ‘criteria’. Let us decide what we prefer, after all, who else can determine this but us? It needs a completely different patient centered approach, endocrinologists and gps are there to serve us, not vice versa.

[TaraJR]

Ah, so you're no doubt forever on the trail there reading agendas and minutes?! Like we were in Norfolk.

[tattybogle in reply to TaraJR]

lol .

not intentionally ... i only followed it because i happened across this via a search for 'Loithyronine'

"....to contact Endocrinology / Primary care etc to arrange liothyronine update meeting ? sometime next month, date to be confirmed at next meeting after co-ordinating re. available dates"

... so i waited with baited breath for next months minutes to come out to see what they were up to......... wasn't expecting 'spying on their minutes' to to become a long term hobby , but it took em about 6 month to even arrange the meeting.. so it did .

very bored of them now though.., now gone back to sanding floorboards by hand and watching paint dry .. it's much more exiting .