T3 update : Just had the dreaded call that the T... - Thyroid UK

Thyroid UK

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T3 update

reikimaster profile image
reikimaster

Just had the dreaded call that the T3 is to be stopped permanently.

NHS across uk are all doing the same.

I’d be very grateful if people on T3 are still obtaining their NHS prescriptions just send me a pm if you don’t mind .

This is such bad news for me

27 Replies
shaws profile image
shawsAdministrator

You're right - the letter was sent so that we're prepared for the bad news.

They've no idea that the letter, prepared or not, will definitely not soften the blow in any way when we're hopeful of keeping the prescription that has restored our health.

helvella profile image
helvellaAdministrator

I suggest writing to MPs, newspapers, anyone else you can think of.

Put in Freedom Of Information requests to GP surgeries, Regional Medicines Optimisation Committees, hospitals, anyone else relevant.

Contact consultants to find out if they know about this!

Ask for evidence that this is in the interests of patients.

Absolutely anything else you can think to do!

I didn’t see the letter from yesterday. Has a diktat gone out from NHS central to GPs to say prescription of these medicines are no more?

And can anyone from Thyroid U.K. or other organisations who follows these messages please advise on why this is being done and how this is being communicated to GPs as well as to patients?

From a campaigning point of view, and I would hope Thyroid Uk or another specialist organisation does this type of work, what’s needed if this is nationwide is a swift, damning response to say this is medically ill-advised and prejudices health outcomes for a very common illness so affects (hundreds of?) thousands or people. Speeches at doctors’ conferences and a letters to The Lancet or other medical pape, and one or two to national papers, signed by specialist doctors, professors, psychologists with a thyroid interest, GPs, people who know about medicine dispensing, health charities and anyone else in the medical establishment who knows about thyroid function!

I don’t have time to take this on. Hopefully others will. Someone must have the email addresses.

Can someone also please set up a National petition on the government’s website? There are so many of us, we should be able to get a lot of signatories.

helvella profile image
helvellaAdministrator in reply to Geogeor

The letter posted yesterday said:

From Wednesday 7 April 2021, prescriptions and monitoring of these drugs will no longer be provided by your GP practice, but by your hospital consultant.

• Atomoxetine

• Azathioprine

• Cyclosporin

• Denosumab

• Dexamphetamine

• Gold injections

• Leflunomide

• Lisdexamfetamine

• Lithium

• Liothyronine

• Methotrexate

• Methylphenidate

• Mycophenolate

• Mercaptopurine

• Sulfasalazine

• Tacrolimus

• Warfarin

Note: they use the now-deprecated old spelling Cyclosporin rather than Ciclosporin. bnf.nice.org.uk/drug/ciclos...

The original thread on which this letter was posted, as an image, is here:

healthunlocked.com/thyroidu...

hackman profile image
hackman in reply to helvella

Are you saying that everyone is getting this letter as a blanket rule from the NHS or is it just in one area?

helvella profile image
helvellaAdministrator in reply to hackman

So far, I have only heard of it in relation to one patient in one GP surgery.

We do not know if that GP surgery is acting out of line with most others - or that we will now get many more doing so. Or whether it has any geographical basis (country, region or whatever).

TaraJR profile image
TaraJR in reply to helvella

It's against national guidelines already in place eg RMOC. So I cannot imagine this will be nationwide. It's another CCG trying it on. Do we know which CCG this is?

helvella profile image
helvellaAdministrator in reply to TaraJR

No - just that the member is in England.

hackman profile image
hackman in reply to helvella

Have there been reports of any other patients receiving similar information from their GP or elsewhere? Surely if this was widespread we would be inundated with people advising that they are in this position? I haven't seen anything in the FB groups either - at least not so far.....

hackman profile image
hackman in reply to helvella

But things like Warfarin are on this list - this is a common medication - it makes no sense.

helvella profile image
helvellaAdministrator in reply to hackman

Another issue with Warfarin is that there are so many interactions with other things - especially other medicines.

Each and every time a Warfarin patient has one of these other medicines prescribed (or prescription adjusted, or deprescribed), the GP will have to send the patient to the consultant to be monitored and/or dose adjusted. Even a change of diet!

And who will become responsible for issuing Anticoagulant treatment booklets and alert cards? The British National Formulary still refers to GPs ordering the stationery.

I’m so sorry. I currently receive mine from abroad. Had you been receiving yours from the NHS up until now? Have you tried asking them to give you a few months’ extra supply to tide you over until you find another supply route?

helvella profile image
helvellaAdministrator

With the advent of powerful battery powered angle grinders, I don't think I'd choose that approach!

But the right spirit. :-)

Which post/letter are we talking about?

helvella profile image
helvellaAdministrator

Pasted in text lower on this thread (and as an attached image on the original thread).

RedApple profile image
RedAppleAdministrator

reikimaster, 'NHS across uk are all doing the same.'

Are you sure it's across the UK and not just NHS England?

helvella profile image
helvellaAdministrator in reply to RedApple

Entirely agree - we have no certainty. But, so far, it does appear to be England-only.

helvella profile image
helvellaAdministrator in reply to RedApple

Just adding:

What on earth would happen to a patient from England seeing a consultant in Wales or Scotland? Or a patient in Wales or Scotland seeing a consultant in England?

I can see consultants being both unhappy and confused - why should a patient from England have their prescriptions provided from consultants in Wales or Scotland? And against which budget?

reikimaster profile image
reikimaster in reply to RedApple

I really don’t know I’m reiterating what I’ve been told from the GP surgery

helvella profile image
helvellaAdministrator

One of the issues seems to be that the negotiators accept some sort of tit for tat/quid pro quo.

We all do something like this when we go shopping and choose Tesco/Sainsbury/Aldi/ Morrisons/etc. on the basis of total cost. Some items are likely more expensive in one than another but we don't actually go round every supermarket every time we go shopping.

But in the case of medicines, the price filters back to prescribing choices. As if we ended up choosing own-label baked beans instead of toilet roll because while the beans are cheap the toilet rolls are not. Whereas we actually need both and have to accept the apparent discrepancy in pricing.

helvella profile image
helvellaAdministrator

But why the change - with zero explanation in the letter.

It doesn't even hint at "In order better to manage you healthcare, we have decided that ..."!

Bearing in the the usual requirement for informed consent - this could well represent a significant change in treatment for some.

I notice it includes Warfarin and says 'monitoring' is to be discontinued at GP's . I don't know how usual this is, but when my dad was alive he had to have a INR blood tests every Friday at GP's surgery to titrate Warfarin....moving everyone on warfarin back to monitoring by Secondary care sounds like it might create a huge extra burden of Travel for those patients like my Dad.

Cariad123 profile image
Cariad123 in reply to tattybogle

I think this is because they want all

Warfarin patient’s to use Riveroxiban or similar which doesn’t need clinic spot bloods to check levels continually

Problem is there is still no antidote for major blood / internal bleed using Riveroxiban

It would be cheaper no clinic costs / paperwork for the areas Trusts

You may! I have a very considerate pharmacist who would at least try to help me out here.

She. And yes!

It was my endo who okayed me having T3, so I hope that means I’ll still get it.

OMG! This is not good. I'm really sorry it has been withdrawn again, and I'm not sure where you can get T3 now, perhaps a private prescription from an endo.

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