Liothyronine Prescriptions in BANES CCG

[Gingernut44]

Are there any forum members living in the BANES CCG area who have had their T3 prescription withdrawn? Please PM me

[shaws Administrator]

If your doctor or endo has been prescribing T3 for you, they shouldn't have withdrawn it without notifying you.

If that has happened you will be extremely worried and they're not supposed to withdraw if the patient has been prescribed.

I would see your local MP and see what he/she can do.

It could be that your doctor was told not to prescribe T3 any more due to cost. If you knew that was the reason (it's not our fault that the supplier of T3 to the UK charges an astronomical price). Those of us who take T3 would be/will be devastated if it is withdrawn, especially without notice.

The professionals fail to be aware that it gives us life, those who take it.

[SlowDragon Administrator]

Guidelines June 2020

swlmcg.nhs.uk/Policies/Posi...

SW London CCGs do not support the routine primary care prescribing of liothyronine in hypothyroidism, in line with NHS England’s national guidance on medicines which should not be routinely prescribed1:

• New patients – hospital only unless prescribed under a Shared Care Agreement (in development).

• Existing patients – to be reviewed by a NHS consultant endocrinologist. Prescriptions for individuals receiving liothyronine should continue until that review has taken place (do not start to refer in to secondary care, unless clinically necessary, until a pathway has been agreed with local Trusts)

Existing patients should be reviewed by a NHS consultant endocrinologist.

• The withdrawal or adjustment of liothyronine treatment should also only be undertaken by, or with the oversight of, an NHS consultant endocrinologist.

Where GPs are involved in such treatment changes, this should be with NHS consultant endocrinologist support.

• If a previous trial titration has proved unsuccessful, the NHS consultant endocrinologist should decide whether a further review is warranted and inform the GP accordingly.

• The NHS consultant endocrinologist must specifically define the reason if any patient currently taking liothyronine should not undergo a trial titration to levothyroxine monotherapy, and this must be communicated to the GP and recorded on the patients’ medical record.

[Gingernut44 in reply to SlowDragon]

Many thanks for your replies SD, shaws , london81 and TaraJR . The reason I posted my enquiry is because in May 2020 Open Prescribing shows Bath & North East Somerset CCG (BANES or as they like to write it B&NES, the latter is more realistic) shows quite a high line for Liothyronine prescriptions but the most recent report doesn’t show any for BANES at all so I was thinking that they had managed to withdraw it totally. I have recently been referred back to NHS Endo who tells me that I don’t “qualify” for T3 on NHS but he is happy to monitor me on my own self sourced T3, so, before writing to the CCG, my MP and the GMC, I was hoping to find anyone in the area who had had their prescription withdrawn so we could make a joint effort/complaint. I guess none of them are members 😟

Thanks anyway

[shaws Administrator in reply to Gingernut44]

How did the Endo assume that you didn't qualify for T3 on the NHS? So, if you paid for your own would he have prescribed? Of course the cost nowadays is so prohibitive few could afford a lifetime cost for T3.

[Gingernut44 in reply to shaws]

I think this Endo was in fear of his job and future career. He’s not been in the job very long and he’s obviously been told that he mustn’t prescribe T3 to any new patients. I think I’m going to have to stick with him for a while if I’m ever going to get T3 on the NHS. Other than that, it’s going back, cap in hand, to my GP for a referral to a private Endo (for the second time but one from TUKs list)

Onwards and upwards 😊

[shaws Administrator in reply to Gingernut44]

If they are newly qualified, it must be stressful for them due to having to follow the guidelines and also to build up a professional relationship with their patients.

We are asking them to prescribe what they've been told not to by their superiors. Hopefully attitudes will change and it would also be good that the BTA also reinstated T3 or NDT as another option.

They (BTA) have to be aware that many patients don't improve with levothyroxine but can do with a T4/T3 combination and I wish they'd also restore T3 and NDT too.

They may have chosen endocrinology but we don't expect them to have experienced problems with their thyroid glands but we do expect them to be trained as the past doctors or endocrinologists were trained (before blood tests took over from their expertise).

[Gingernut44 in reply to shaws]

Yes, it must be really stressful especially having me as a patient 😀I think he was surprised by my knowledge (all gained from this forum) poor soul

[shaws Administrator in reply to Gingernut44]

This is fromTUK who've been working hard with other groups:-

"In 2017 NHS England was asked by Clinical Commissioning Groups to undertake a consultation for their guidance on “Items which should not routinely be prescribed in primary care.”

Liothyronine (T3) was listed due to it being an item under the category, “Items which are clinically effective but where more cost-effective products are available, including products that have been subject to excessive price inflation.”

Thyroid UK was a stakeholder of this consultation and attended meetings and participated in the consultation.

However, previous to the consultation, CCGs across the UK had already decided that T3 should not be prescribed and informed all surgeries and hospitals in their area to stop prescribing and withdraw T3 from patients who are already on it (which we consider unethical).

CCGs do not have the legal right to order clinicians to stop prescribing or withdraw T3 from patients. The final say on whether a doctor should prescribe lies with the doctor himself. However, many doctors are worried that they could get into trouble for prescribing T3 and are therefore doing as they are told by the CCGs.

TaraJR

thyroiduk.org/who-we-are/wh...

[Gingernut44 in reply to shaws]

Thanks for the link

[TaraJR]

This sounds as though it's been done against all national guidance - if you have a clinical need for T3. You should be able to complain to your CCG, quoting all the guidance. Pm me if you want more information

[london81]

sign up to open prescribing they send you a report on how many prescriptions are issued for your chosen medication in your CCG

[london81 in reply to london81]

for example i can see my local CCG spent £20,000 on T3 in july 2020. it’s abhorrent they are being fleeced like this. we need to fight the prices as well as demanding our rights. thyroid patients who need t3 should be getting it and pharma should be forced to reduce their prices to an affordable level if they want to remain supplying the nhs.

[SlowDragon Administrator]

Sorry I read that as Barnes (ie Richmond SW London)

Here’s guidelines for Bath & NE Somerset

bswformulary.nhs.uk/chapter...

Bath CCG prescription numbers for last year

openprescribing.net/analyse...

[Gingernut44 in reply to SlowDragon]

Many thanks for the links. I’ll have a good read after dinner.

[Gingernut44 in reply to SlowDragon]

Hi SD, I’ve had a look at the Open Prescribing link you sent me which differs from the one I have for just BANES which states Aug ‘19 - Jul ‘20 as cost 0, items 0. This is really weird unless the items are prescriptions for Swindon & Wiltshire CCG alone. I do know that there was 1 prescription In May for my particular Drs Practice but that now shows 0.

I think I’ll have to delve a bit deeper into this in the morning, it’s getting a bit late now.

Thanks for your help

[SlowDragon Administrator in reply to Gingernut44]

There are quite a few options of different medications to pick as “liothyronine”

[Gingernut44 in reply to SlowDragon]

Thanks, why do things have to be so complicated ☹️

[pennyannie in reply to Gingernut44]

Hey there

Just to say, on open prescribing it seems, that at my surgery NDT and or T3 prescriptions seem to only show up on alternate months, so maybe the same applies where you are ?

[Gingernut44 in reply to pennyannie]

Hi pennyannie, nice to hear from you, hope you’re keeping well. I only seem to get updates from Open P every two months anyway and it’s always shown BANES on the graph, well, up until May it did. Now, SD has found it under a multiple CCG group. Why do they have to complicate things? How can I make a complaint if I can’t find the right info 😩

[pennyannie in reply to Gingernut44]

Hey there - I'm doing ok thank you :

I've no idea about an answer to your question -

I've given up trying the square the circles I've found myself in dealing with the NHS as I find it all to stressful - I'm much improved staying away !!!!

[Gingernut44 in reply to pennyannie]

I would prefer never to have to see a Doctor ever again, I'm sick to death with the lot of them but I was being nagged by my husband and daughter to go back to the Doctor. I told them that he wouldn't do anything for me, he never has but I made the mistake of contacting him regarding my saliva cortisol test which he folowed up with a 9 am cortisol blood test. He rang me with glee in his voice to say that I didn't have an adrenal problem and diagnosed me with CFS (over the phone) having not seen or spoken to me since April 2019. He has consistently ignored my hypo symptoms and the copies of my Medichecks blood tests I have sent him and has preferred to share the opinions of the so called professionals and accused me of ignoring their advice (my post Follow up to referral letter re Path Lab Doctor says it all). He has reluctantly referred me back to NHS Endo who has said I don't "qualify" for T3 on NHS (with a suppressed TSH, an over range T4 and T3 barely reaching mid range). NHS Endo has agreed that I have ongoing and worsening hypo sysmptoms but he can't prescribe T3 for me but will monitor me if I source my own !!! I'm going along with this at the moment but with all the problems I've had in the past with fillers, I'm not holding my breath. Its just another wait and see game.

[pennyannie in reply to Gingernut44]

I'm sorry and all this stress will not be helping you one little bit.

I can't say much different to what I've said before and personally have felt happier and more well doing it for myself, and staying away from all of these people who work to guidelines that don't necessarily work for all people, especially those after RAI thyroid ablation treatment.

[Gingernut44 in reply to pennyannie]

My problem is my over sensitivity to the fillers in most tablets, I think that was the reason I didn’t get on with Thyroid S and can only just tolerate Wockhardt Levo. I’m trying Uni Pharma T3 alongside at the moment and not doing too well, possibly the fillers. I’m between a rock and a hard place as choice is very limited when you’re DIY. Oh well, onwards and upwards 😊

[pennyannie in reply to Gingernut44]

Yes I was suprised when I saw the list of fillers in Thyroid S recently.

Understand very well how hard it can be :

[shaws Administrator in reply to Gingernut44]

Why is the Endocrinologist not prescribing as they seem to be the only professionals who can? If he doesn't it's his own decision not to. The following is from TUK:

"The recent UK guidance came about because of the exorbitant increase in the cost of liothyronine and the cost to the NHS.

Generally, the UK guidance, which includes the British Thyroid Association, NHS England, the Regional Medicines Optimising Committee and NICE, all state that levothyroxine should normally be prescribed and that liothyronine should not routinely be prescribed. Unfortunately, the wording “not routinely” has been taken to mean “should not” by some clinicians and some Clinical Commissioning Groups (CCGs) (who decide on which medications can be prescribed).

CCGs are supposed to have “due regard” for the NHS England guidance and so Thyroid UK is campaigning to try to change what is happening.

All the guidance does state that there is a cohort of patients who do not resolve all of their symptoms on levothyroxine and that they should be allowed to have a trial of liothyronine. Liothyronine can only be prescribed on a trial basis by an endocrinologist and not by GPs, as has happened for many years.

thyroiduk.org/treatment-opt...

[shaws Administrator in reply to pennyannie]

Did you know that NDT has also been withdrawn?

[Gingernut44 in reply to shaws]

Yes Shaws, since having RAI treatment and becoming hypo (and finding this amazing forum) I’ve read and read and I think, no, I know that I know more about my “condition “ than my GP, which isn’t difficult as he’s the one responsible for my current problems. Right from the start he said I didn’t need to have my FT4 and FT3 tested as I was now taking Levothyroxine!!! I was already on 100mcg with a TSH of 0.68 when I told him that I thought the tablets were causing me side effects and instead of looking at the other manufacturers, he just said “well stop taking them then and have a blood test in six weeks. That’s when all my problems started. Of course, I didn’t know any different then but I do now.

Thanks everyone for your help, this is a battle that’s going to go on ☹️

[pennyannie in reply to shaws]

No. I don't think so - I was refused both NDT in 2014 and a trial of T3 back in 2018 and have now just gone my own way. I think I saw NDT prescribed on the open prescribing analysis a couple of months ago ?

So NDT is now black listed and not available on a named person only NHS prescription - when did this happen ?

[shaws Administrator]

It will hard for you to believe when I give the explanation.

Suddenly those professionals who make the decisions that can return our good health decided to withdraw NDT by making False Statements in order to do so. Despite the fact that it saved lives from 1892 onwards and still does today.

One of Thyroiduk's scientists/doctor/researcher and expert in the use of T3 and Thyroid Hormone Resistance wrote to the BTA with a Rebuttal re NDT every year for three years.

They ignored his requests and never responded (did they feel they were superior?) Dr Lowe died through an accident.

drlowe.com/thyroidscience/C...

They did the same for T3 - both more expensive than levothyroxine. They ignored the fact that NDT's safety was proven beyond doubt (and that we are all different) since 1892 when it was first introduced and no-one else died of an awful death.

The fact that they aren't scientists they seem to be able 'pool the wool' over others' eyes that they know more than they do.

That is not the case. It just makes them robots as they appear to have no understanding at all of the needs of patients - thousands may do fine on levo but for others (mainly on this forum) are remaining symptomatic and unwell.

Rather than listening to patients as both doctors above did (without blood tests at all) they only seem to look at the TSH and if it is 'somewhere' in range don't increase in dose.

Disabling symptoms are unknown and ignorance that replacement hormones is supposed to relieve them. Of course, they will prescribe anything other than hormones if patient has symptoms but patients need the hormone replacements that suit them, not prescriptions that don't improve health.