Struggling with red tape-liothyronine

[Humphre]

Well I thought I'd found a lab with reasonable costs for liothyronine only to find when I've sent private prescription only to find it didn't match the quote so requested my prescription back and now still waiting and looking for another source meanwhile I'm struggling to understand a letter(came as email) from East Lancashire NHS Trust to whom I'd complained as to why I wasn't able to get funding for said trail (grr)I've read it through and still not sure what its saying.

I'm unable to speak with my endo(copy was sent to him)& only works 3 days, he is in the neighbouring Trust but has excellent forward thinking views on Thyroid issues.

My dilemma while waiting to speak to my Endo, is I need to acknowledge said email + it has suggested that I move over to that trust, see their endo for treatment but I'm concerned he'll have a different view and not like my suppressed TSH etc I'm back to square one. Please read through and see what you think as my mind is argh!!!!!

[I am writing in response to your email correspondence dated 11 October 2024

relating to your experiences at East Lancashire Hospitals NHS Trust.

I am very sorry you have had cause to complain. Your feedback is extremely

valuable to East Lancashire Hospitals NHS Trust. I have been gathering information

on the issues you have raised, relating to the supply of liothyronine.

Thank you for the information provided by yourself and your West Yorkshire Consultant

Endocrinologist, Dr ****, to our Medicines Information and Formulary Pharmacist,

Miss ******, which helped us better understand your current situation.

We understand that Dr **** is planning to add liothyronine to your existing

levothyroxine as a trial in order to help with your symptoms. Should this combination

be successful, you have been informed that you will not be able to obtain further

supplies from your GP as liothyronine is "blacklisted" in our formulary. This has been

communicated to you by your own local GP.(my endo has never physically prescribed any as no funding across trusts always from my GP)

In East Lancashire, liothyronine is listed as a drug that is only prescribed and

dispensed in hospital, which is aligned with the NHSE document:

NHS England » Liothyronine – advice for prescribers

According to this document:

"Neither NICE nor the joint NHS England and NHS Confederation guidance

recommends routine prescribing of liothyronine as monotherapy or in combination

2

with levothyroxine; however, both recognise that a small proportion of patients may

benefit from liothyronine. "

“If a patient is initiated on liothyronine, prescribing responsibility should remain with

the NHS consultant endocrinologist for at least 3 months. After this 3-month period, if

the decision is to continue liothyronine, then repeat prescribing in primary care may

be reasonable in line with any local shared care arrangements”.

There is no agreement in East Lancashire to transfer prescribing from hospital to GPs; however, following your email, Miss ******* requested a review of the current of liothyronine. The matter was discussed locally at our East Lancashire Medicines Management Board (which includes primary and secondary care healthcare professionals) and consulted with the East Lancashire Hospitals NHS Trust Endocrinology Directorate to consider the implications of changing our current position to allow prescribing by GPs following initiation by a hospital Consultant. The board concluded that it was not appropriate to change the status of liothyronine and that the addition of liothyronine to levothyroxine should remain under the care of a consultant NHS endocrinologist.

Our current position allows the small number of patients who truly benefit from liothyronine to continue to obtain treatment via the hospital ensuring adequate monitoring and follow up.

In conclusion, treatment with liothyronine is available locally but it needs to be obtained from the hospital directly.

We understand that you wish to remain under the care of Dr *** at a West Yorkshire hospital, which means that Dr **** will have to continue to prescribe these for you should the trial be successful, and the supply will have to be obtained from this hospital pharmacy as these pharmacies are only able to dispense outpatient prescription of the hospital where they are located at.

Should at any point in the future you consider relocating your care to East Lancashire Hospitals NHS Trust, you would be put under the care of an Endocrinologist who would be able to prescribe these for you if the liothyronine was helping with your symptoms. Supply would still have to be obtained locally from our hospital outpatient pharmacies.

We will notify Dr *** with the outcome of the review. We hope this information is helpful to you; if you require anything further, please do not hesitate to contact us. After considering my response if you remain dissatisfied and wish to discuss the matter further, please do not hesitate to phone.]

I keep reading it and I think a point has been missed that there is no cross over between trusts for funding? Am I right that what is being said I have to see their Endo to receive liothyronine but there's no guarantee I would get it argh!!!!

TIA

[SlowDragon Ambassador]

They are being especially obtuse

Presumably you are seeing the endo on NHS?

Yes then guidelines say initial 3 month trial should be dispensed via hospital pharmacy

BUT

Then …..assuming you do well on trial then endo normally writes to your GP to formally request GP take over prescription, care and cost. With annual review back with endo

Looking at data on open prescribing here

east Lancashire are one of the worse

openprescribing.net/analyse...

[Humphre in reply to SlowDragon]

Well I'm confused, I was referred at my request to see an Endo requested local one over border(west Yorkshire/East Lancashire) as is my right send info re results/conclusion from Endo to GP who initially said yes then no it'll have to be private🥺 I suppose I should/could go to East Lancashire Endo🤞hopefully a trail there but no guarantees that would happen feel I'm going in circles, thank you for replying.

[SlowDragon Ambassador in reply to Humphre]

Suggest you get started on T3 privately then while you wait for NHS referral

Typically takes 12-18 months for NHS referral and it’s often refused if TSH and Ft4 are “normal “

Cheapest option for T3 on private prescription is Thybon Henning 20mcg tablets

Most/many members on T3 privately get this

Cutting into 1/4’s using sharp scalpel to get 5mcg

Recommended on here to start T3 very slowly

What has endo suggested and what size tablets prescribed

[Humphre in reply to SlowDragon]

Thank you Endo has suggested 10mcg x 2 daily with 50mcg x 1 no levo for 3 days I'm think too fast would have preferred 5mcg x2 daily whilst reducing my levo by 25mcg per week?? then building liothyronine up whilst reducing🤦 I can see me getting confused. Anyway I hope to get my prescription back from Pharmacy 2U & get an updated price from Roseway 🤞I get to trail it Endo has said he would monitor still waiting for copy of bloods.

[SlowDragon Ambassador in reply to Humphre]

still waiting for copy of bloods.

was test done a s recommended....early morning ideally before 9am, only drinking water between waking and test....and last dose level 24 hours before test

looking at previous posts

you are currently on 125mcg levo per day?

How long on this dose

Do you always get same brand levo at each prescription ....and which brand?

what were most recent vitamin D, folate, ferritin and B12 results

exactly what vitamin supplements are you taking

Endo has suggested 10mcg x 2 daily with 50mcg x 1 no levo for 3 days I'm think too fast

That seems HUGE reduction in levo - obviously need to see what most recent FT4 and FT3 results are

we would usually say

1) if FT4 right at top, or slightly over range, lower levo by 25mcg 4 days before starting on 5mcg per day waking (or 2 x 2.5mcg waking and mid afternoon) and after 3-5 days...increase to 2 x 5mcg per day - waking and mid afternoon

2) if FT4 mid range probably don't need to reduce dose levo

3) if FT4 low in range ....get increase in levo as new step BEFORE considering adding T3

Always get all 4 vitamins to GOOD levels before start

[Humphre in reply to SlowDragon]

Yes since joining this group I adhere to the procedure been on 125mcg for a good few years I'd have to check back, GP has tried in past to reduce but my symptoms worsen so defo last three years I do have slumps up & down, tired most of time tinnitus getting worse overweight but steady since taking vitamins, low moods plus whole host of niggly things.GF free minimal dairy not every day do see improvement👍 I don't have pepsin in my stomach so I take betaine HCl 1 with every meal helps alot

I take B complex (ingennus), VitD with K2, magnesium triple, selenium, milk thistle, B12(last had 6 months ago but had bad cold/flu so topping up) Adcal (prescribed) trying collagen last month nearly finished not sure made any difference. These are from British Supplements & have no fillers.

Brand Vencamil 100mcg & Wockhart 25mcg suits me well

Looks like I'll have to do s private blood test to do full range not done that for a while🤔

The info on how to include T3 is great to know & will compare it when I get my blood results.

Phew my brain now hurts🤣 thank you so much

[SlowDragon Ambassador in reply to Humphre]

Suggest you get all your Levo as Vencamil now 25mcg, 50mcg and 75mcg tablets are available

[Humphre in reply to SlowDragon]

I was hoping to at next collection 🤞I'll get sorted one way or t'other

[tattybogle]

So just to clarify , the west yorks NHs endo who wrote the prescription is doing it privately , ie , you payed to see him ?

some one influential in east lancs endocrinology dept is very strongly against the use of T3. we know this from the minutes i found healthunlocked.com/thyroidu....

east lancs position in the LSCMMG minutes looks like "ok , we don't want it to be prescribed at all outside of intensive care ,but we will agree to it (on paper) cos we have no choice , but only with the caveat that our east lancs endo's opinions are paramount and they don't have to prescribe it to anyone they don't think needs it... (which they are unlikely to do, since we pay their wages , and we don't want them to) ".

email says they have discussed it again re. your case... they clearly have no intention whatsoever of changing their stance at present , so i would be extremely wary of them to be honest.

they say if you move to them "you would be put under the care of an Endocrinologist who would be able to prescribe these for you if the liothyronine was helping with your symptoms." .. this wording is vague ... 'if it was helping your symptoms' in whose opinion ?.. yours , your current endo , or theirs .... and with what restrictions on TSH in range / dose etc etc ... and what symptoms do they mean to include ..... is east lancs endo going to turn round and say 'in my opinion these symptoms are not thyroid related , i'll refer you to round the houses' etc .

and if it was eventually prescribed by east lancs , as there is no shared care agreement in place in your area, (and no intention to change that at present ) you would need to continually go and collect it from the hospital.

if you can afford it , i'd stick with the endo who you know does genuinely have reasonable views on T3 use... not risk going somewhere where they are clearly just paying lip service to the concept .

but then , if you really need the NHS to fund it you have to play their game , which means letting them mess about with you and your health while they decide. ... or move house ... or pretend to move house ( that gets really messy though)

email doesn't say anything about east lancs funding a trial of it through west yorks endo if you saw him as an NHS patient .. presumably that means they wont/ can't ?

[Humphre in reply to tattybogle]

Hi thanks for that I too am very wary of moving over. My Endo is via NHS as I'm allowed to choose where I'm in-between two hospitals Airedale(preferred) & Burnley the Endo at Airedale 👍he didn't prescribed but suggested it which I relayed to my GP(in East Lancashire) so hence the stand off. Think this is why I'm confused as no mention of funding I can't afford long term but willing to do a trail see if it suits. Yes moving house maybe an option(not in hubby's eyes though) another address gets messy as involves drs surgery etc🤦 the one bit of research I should have done prior to moving here in 1st place. I need my response to mirror my fears.Cheers helpful

[SlowDragon Ambassador in reply to Humphre]

he didn't prescribed but suggested it which I relayed to my GP

He should have given you an NHS prescription

Guidelines are clear - to get T3 prescribed on NHS then you need NHS endo to prescribe for first initial 3-6 month trial. Assuming trial is successful endo then writes to your GP and requests that they take over prescribing, testing and cost.

[Humphre in reply to SlowDragon]

Well that didn't happen as my Endo knew he wouldn't get funding as he's in West Yorkshire grr this is going round in circles my GP gave me a private prescription & that's where I am at moment still trying to source a reasonable priced one........

[SlowDragon Ambassador in reply to Humphre]

Can you get endo to write prescription privately for 100 x 20mcg Thybon Henning liothyronine