Why liothyronine treatment is opposed - it's th... - Thyroid UK

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Why liothyronine treatment is opposed - it's the money, folks

diogenes profile image

This paper lets the cat out of the bag by openly promoting lessening of liothyronine prescription purely on the basis of cost/patient - little said about patient reaction, rather a sneering attitude of those few doctors who will prescribe T3. Downloadable:

Trends in costs and prescribing for liothyronine and Levothyroxine in England and wales 2011‐2020

January 2021 Clinical Endocrinology 94(4)

DOI: 10.1111/cen.14414

LicenseCC BY-NC 4.0

Michael Stedman, Peter Taylor, Lakdasa, D K E Premawardhana, Adrian H Heald

110 Replies

Thank you diogenes

Web site link

onlinelibrary.wiley.com/doi...

It's the old adage...

They know the cost of everything and the value of nothing!

Without a supraphysiological dose of T3-only I may no longer be here!!

After thought

Also... "A month's supply in the United Kingdom costs the NHS about GB £247 (US$330) as of 2019."

Maybe a lesser point, but regarding " a month's supply", they can have no idea what constitutes an individual patient's monthly requirement. I hold no hope of ever having my monthly requirement of T3 prescribed yet without it my health declines...

What was that about, "First do no harm".

I despair for patients who are quietly suffering (dying even) in silence behind closed doors because medics just do not understand, or refuse to accept, the significance of T3.

I count myself immensely fortunate to have had the support of this forum as I set out on my own long T3 journey of discovery...I then knew I was not the only one struggling to research the reason why I felt so unwell.

Sorry, I'm ranting again but this whole T3 debacle is, I would contend, tantamount to medical neglect.

Now that the cat is out of the bag it needs to be put amongst the pigeons!!

And if the NHS paid the same 50p per 20 mcg tablet that an ordinary Joe can pay on a private prescription [and of course, with their purchasing power it should be rather less...] it wouldn't cost anything LIKE that much would it?

So basically a patient in need is being dumped on because the purchasing team at the NHS is utterly spectacularly useless. Not impressive

Worse than "not impressive"!

It beggars belief!

They are playing fast and loose with people's lives.

Not sure what the opposite of hyperbole is - massive understatement perhaps? - but that was what I was intending :)

I understand...it just really bugs me!

TSH110 profile image
TSH110 in reply to fuchsia-pink

Litotes, apparently

DippyDame profile image
DippyDame in reply to TSH110

There's nothing ironic about this understatement...

TSH110 profile image
TSH110 in reply to DippyDame

It is given as the opposite to hyperbole as understated in the dictionary there was no mention of irony, sorry to offend.

DippyDame profile image
DippyDame in reply to TSH110

Sorry TSH110 Absolutely no offence involved .... just me being a total pain in the neck!

Maybe I'm getting overly sensitive about this whole T3 debacle and should say less!!

Litotes and irony are related ...but it doesn't matter.

TSH110 profile image
TSH110 in reply to DippyDame

Always good to be given better knowledge of words ☺️ and you were right to point that out to me. The T3 situation is monstrous and it seems to be getting worse by the minute so I can understand where you’re coming from. It really is scandalous.

DippyDame profile image
DippyDame in reply to TSH110

Thanks for understanding.My inner grumpy old woman escapes sometimes and needs to be put back in her place!!

TSH110 profile image
TSH110 in reply to DippyDame

You’re not alone there 🤣🤣🤣🤬🤬🤬🤣🤣🤣

UrsaP profile image
UrsaP in reply to fuchsia-pink

€2.38 in Greece in 2019 for 30 tablets.

Mlinde profile image
Mlinde in reply to UrsaP

Tried buying them now?

UrsaP profile image
UrsaP in reply to Mlinde

Have they gone up.in Greece now too? I kjow they were struggling to getbthem, they were all being sent here to UK...cos they could mske a killing on them. I'd live to know where they were going and to whom in UK....as so few getting them??

Starting to wonder was our DOH buying them up just to get them off market???

Hi fuchsia-pinkOoft 50p per tablet?

I got 25mcg at £20 per 100 plus £3 postage

Have I bought duds?

Mlinde profile image
Mlinde in reply to DippyDame

Yeah, I commiserate! I had an extremely depressing phone call with 'my' GP yesterday about precisely this. Lots and lots of apologies but "my hands are tied". I like her, I've had the same GP (or tried to) for the past 7 years but my health is obviously at the very bottom of the (Corporate)NHS's list of essentials! My underactive thyroid's symptoms recently got much worse (brain fog, feeling like a block of ice, my nails breaking, etc awful). What gets me is how gps retreat behind a wall of NICE, 'Oh I'm really sorry but I'm not permitted to prescribe T3 or NDTs. When I point out that it's really down to your postcode as to whether I get the right treatment, she agrees. Damn, she's not a doctor, she is an extension of the State!

UrsaP profile image
UrsaP in reply to Mlinde

If she cant/eont prescribe she should refer you to an endo. See if you can find one that will prescribe. I thought I had, but from ehat Im.hearing he is as bad. My only saving grace been on t3 and left on it for over a decade now.

Mlinde profile image
Mlinde in reply to UrsaP

Hah! See an Endo? Have you tried getting an appointment recently? I first got an appointment for January 22. The letter opened with: "I can't prescribe T3 or NDT'. I cancelled (St. Georges Hospital, Tooting). The second appointment made about 2 months ago is for, wait for it: June 2022.

UrsaP profile image
UrsaP in reply to Mlinde

OMG! I was referred in Feb 20... (not thro choice as had been fine since 'sacking' prev endo 10 years earlier)

Just as Cov hit. Had a tel appointment...chap was lovely. Sent me for a whole barrage of tests, including a pituitary scan. All during lockdown. So could get for bloods and scans but not to see specislist. He actually sauntered past me in the empty waiting room whilst I waited for bloods. All smiles for the nurses and just stared at me when I said good morning.

I had another appointment with him...tel again in Sept. He was lije Jekyll and Hyde! Completwly diff attitude, rude, dismisdive. Told me I could try stopping my meds. 'see how I got on' as he didnt know how secure my diagnosis was, having just come to my case. Doh! I had been diagnosed in 1991/2, after a decade of trying to get a diagnosis.

So he was happy to.just stop.my meds....needless to say I declined that option.

I was suppose to.have another tel appointment with himna few months ago. I cancelled it as something cropped up. My phones were bombarded on the day.

I sent in up to date bloods a week or so later, Ive heard nothing and am happy to continue as I am. I have not found him helpful.

I was referred to rheumatology at the same time, blood indications of AI, Im convinced I have Sjogrens/Lupus. Again trying for years to find out.

I got a tel apptmt for that. Cant fiagnose over phone so pistponed till Sept 20.

Saw a very nice chap there. Very reassuring that things would be checked out properly. Bloods did not show the specifics, cant diagnose without, on symptoms only.

In Dec 20 was dismissed via phone, but questioned the decision re the obvious symptoms. So she referred me on to dental amd eye clinics. Eye clinic saw me in March and straight away diagnosed connective tissue. They referred me back to rheumatology.

Chased rheumy and dental in Sept as had heard nothing.

Dental I saw in Oct, have had ultra sound last month and another appointment for Jan. I was at the eye clinic for the 3rd time this week. Nothing from rheumy. The eye clinic are referring me elsewhere.

So why can dental, eye and phlebotomy go ahead, where staff are very close to oatients, but other f2f apptms where there will lijely be a desk between, not???

It makes no sense?

I have been in and out of many diff areas of hospitals during lockdown and this 'pandemic' They are generally practically deserted. Where are all the staff.

That said our local hospital pre covid...Dec19, A&e...about 6 in waiting room...constantly bombarded with announcements of 4 or 5 hr waiting.

Was about 4.5 hrs. But because only one person seen at a time. Hubby had to wait 2 hrs for blood results. No one other person was seen during that time, the next person went in just as we left. There was 1 dr and two nurses sitting at the desk.in the treatment area.. a ward of about 10 beds with 1 person in there.

The destruction.of the NHS imo has been orchestrated for many years.

Mlinde profile image
Mlinde in reply to UrsaP

I really don't understand it! Why are thyroid conditions treated in this way? If it was my heart or my kidney, the response would be entirely different, wouldn't it? Yet the thyroid condition (over or under) is one of the most prevalent conditions in the UK. If it was some really rare disease that one in a million get, it would be understandable but it ain't! Is it really finances? Hmmmm.... I tend to think it's under-educated doctors who know diddly-squat about the thyroid, if my GP is anything to go by, which is okay, we have 'specialists', except we don't! Or rather, they do exist, somewhere, we just don't get to see them! It's the perfect storm.

UrsaP profile image
UrsaP in reply to Mlinde

Ive often wondered too. Is it because it largely affects more women, tho I think there are problems for men as they tend not to be checked for it as it is 'mainly a female condition'. As Matt Handcocks condultation a few months ago said... treatments largely and historically designed by men for mens health. Women's health very poorly understood and trained for.

On top.of that you have a repeated regime of endos who's mentors have drilled into them that T4 is all that is needed. From the fact that gp didnt know what t3 was, hospital drs and nurses had not heard of t3, last year, when I was in for a minor procedure. Quite frightening, but clearly a lack.in training.

Bear in mind that back in the day many decisions would have been made over/after drinks in the boys clubs?

However, there is no excuse in this day and age. And certainly there is no excuse for the dreadful and downright unprofessional attitude and manner displayed by many endos these days when faced with a patient failling on T4 mono.

If they are frustrated by having hands tied /buget restrictions then that is their problem.to.sort out and they should not be dismissing and dissing patients.

They need to grow some and start standing up for the needs of their patients.

Didnt the authorities stop recording on thyroid. The only stats as far as I know is the no.of t4 prescriptions. This seems to me to be the only statistic used for the 'majority doung well on T4'. Never did understsnd that!

Just cos prescribing doesnt mean it is working.

tattybogle profile image
tattybogle in reply to UrsaP

well said .

Mlinde profile image
Mlinde in reply to UrsaP

UrsaP, you've spelt it all out! I too have made the observation that because it's largely a 'womans' disease (over 70% I'm told), as per usual, it gets the short end! But this is true of pretty much all facets of a patriarchal society, from history to economics. As for Endos? I better not say what I feel about the 'profession' here.

Purplebum profile image
Purplebum in reply to Mlinde

There is also the situation I'm in which is, as my results are normal range I am only on 75mcg of levo even though I have hypo symptoms. I was on 100mcg for over 2 years and ok, then we moved home and now have new GP!!! Please don't suggest I change Dr's as they're aren't any as I live in rural Wales.........

Mlinde profile image
Mlinde in reply to Purplebum

Purplebum,

I'm not suggesting you change your doctor, especially if it's the only one, but the issue of tests versus symptoms is well known largely because they use the TSH level to test if you're 'normal' and it doesn't work for everyone.

There appears to be no understanding that people do NOT react the same to T3 and T4. They write as if Levo and Lio are equivalent and can be swapped willy-nilly.

I'm baffled by this. Can they really be this stupid or callous? And I think the answer is yes.

DippyDame profile image
DippyDame in reply to humanbean

I concur!!

Localhero profile image
Localhero in reply to DippyDame

Me too!!

JGBH profile image
JGBH in reply to humanbean

Indeed they’re both deliberately stupid and callous. Patients’ wellbeing is the least of their worries. Money drives them,

Agree. This is disgraceful for so called experts

They KNOW it's not the same. But they fear T3 treatment as it implies more risks and eventually, if something happens to the patient, they are the ones to blame. They are the doctors.

Perhaps, if the medics listened to the scientists and better understood T3, rather than perpetuating scaremongering about ir then they would have the knowledge required to allow them to prescribe this vital hormone safely, both to the benefit of the patient and without fear of litigation or the termination of their registration.

They appear to confuse an essential (replacement) hormone with a dangerous drug, this, with potentially disastrous consequences for patients who need T3 in order to have a decent quality of life....and ultimately, to survive.

The eye watering price hikes are in many ways (it seems to me) a diversion from the reality...ignorance and consequently fear of losing face.

Has that ultimately been what has prevented the powers that be from taking Big Pharma to task over what has been an exponential rise in the cost of T3 here in the UK, compared to that elsewhere?

Just a thought from this cynical old woman who relies on T3...and is hugely grateful to this forum for helping her to discover why her body was beginning to shut down because medics could not answer the question, " Why?"

Like many others here I have had to self diagnose and self medicate to find relief.

I can only repeat, that when it comes to T3, the decision makers appear to know the cost of everything and the value of nothing.

diogenes and all at TUK ...thank you.

I think this is like HRT treatment for women. It obviously improves dramatically the quality of life, but it doesn't come with risks associated. That's why they try not to medicate with t3. They fear legal consequences if something happens to the patient. So they choose the safest option.

I meant without risks associated.

There are very few risks associated with modern transdermal HRT. The risk of breast cancer was never right in the first place. Conflated by misunderstanding in the press. The main risks are blood clots when taking HRT in tablet form. Transdermal is safe from that respect. All risks of HRT combined are way less than drinking a glass of wine a night.

HRT treatment may improve quality of life but it is not essential for life....T3 is.

Maintaining a stable and therapeutic serum T3 level is a biological priority.

Yet, testing FT3, the vital active thyroid hormone, is sidelined and with it the clues that could help solve the patient's ill health.

Sadly we live in a litigious society. But, if the decision makers in high places had a sound knowledge of T3 based on the science, rather than (it seems) on fear and scaremongering, then they might have the confidence to adopt a more open minded and knowledgeable approach to patient care, and the ability to argue that it be once more available at a non inflated cost ..... then T3 may not be priced (almost)out of reach.

And ...GPs may be able to use their professional judgement instead of having their hands tied behind their backs by unhelpful guidance (often viewed as rules!)

I'm not disagreeing with you, just frustrated that we ( patients) should need to discuss this area of health care at all. The NHS work miracles yet thyroid disease/T3 therapy is in this mess....it makes no sense!

Must stop ranting!!

I've read that almost all Thyroid patients (not just poor converters) treated with T4 only have lower serum FT3 and higher Ft3/ft4 than controls. Is that true? Do You know?

I've read that almost all Thyroid patients (not just poor converters) treated with T4 only have lower serum FT3 and higher Ft3/ft4 than controls. Is that true? Do You know?

No , i don't think that's true (edit* is there a typo , did you mean to write fT3 twice ?, did you mean fT3 to fT4 ratio , or fT4 to fT3 ratio, or fT3 and/or fT4 ?)

my understanding is that , people on levo then have relatively lower TSH / higher fT4 / and lower fT3 than ' 'healthy' people (without thyroid disease)

if i remember correctly, diogenes group of researchers have produced a paper showing this .. can't remember which paper it was. (Edit* Alejandrita17 links to 3 of diogenes' groups papers showing the shift in relationship between TSH/fT3 /fT4 on Levo are found half way down this post healthunlocked.com/thyroidu... )

Don't know what you mean by "controls"....sorry.

Do you mean a test done before a patient is medicated which provides a baseline for later comparison .....or tests done on people not diagnosed as hypothyroid and used to calculate reference ranges.

I see tattybogle has something to say on the matter though...that may help.

Controls= healthy people they use to compare results in trials.

Of course....silly me!!Thanks.

Now there I disagree @DippyDame. For some HRT is essential. The highest rate of suicide for women is in the 50-54 age range. Many women consider taking their own lives because of the horror of menopause for some of us. I came close. I just didn't have the energy to think it through. The ignorance amongst medics is about the same as for thyroid. In fact, it might be worse because they try to prescribe completely useless anti-depressants to suicidal oestrogen deficient women.

Apologies FancyPants54. I stand corrected!

Again, like with the need for T3, it only occurs to people when it happens to them.

legal consequences ? perhaps, but i suspect most are more concerned about career consequences. T3 in itself isn't inherently dangerous , if prescribed carefully to appropriate patients then surely they don't have anything to worry about from a legal perspective .. obviously what 'carefully ' and 'appropriate' means is still extremely controversial .. but they prescribe things every day that have far worse safety records than T3.

But ...... if an endo keeps asking for permission to prescribe it for his patients, in a CCG who don't want it prescribed, and works in a department with senior endo's who also don't want it prescribed.. i suspect that may have career consequences.

This! Perhaps they should learn about T3 and what it does for people who can't get well on Levo alone. Perhaps they should be less ignorant and less full of BS when it comes to what they tell their patients.

It looks very like I'm going to have to rely on T3 from now onward. I am afraid that one day I won't be able to afford it. Or that I won't be able to get it. It's a frightening prospect.

It is. I self medicate and need high dose T3-only , my GP has already scathingly asked me what I will do if I have to go into care.

"Die" was my response!

Oh god! And you are right. What on earth did he say then?

She went quiet, looked taken aback ...then changed the subject.

Zephyrbear profile image
Zephyrbear in reply to humanbean

Me three! Don’t know where I’d be if it weren’t for T3… up the Swanee without a paddle, I should think!

Mlinde profile image
Mlinde in reply to humanbean

Yes! My tests revealed that the T4 is NOT being converted to T3. The answer? Just take more T4 and then I get heart palpitations and none of the symptoms go away. I'm on 125mcg of Levo and want to increase it but I'm afraid to.

UrsaP profile image
UrsaP in reply to humanbean

Didnt the mhra respond to someone saying they are not the same, a few years ago. Gps if they even know aboutvt3 see it as just an expensive version of t4. Poor training!

UrsaP profile image
UrsaP in reply to humanbean

Yes to callous!

I can't bring myself to read more biased information ;

I do know me and that I'm much improved with the addition of T3 and now settled on NDT :

I do know that I am now able to drive my little car, and have my life back rather than stuck on the sofa where the NHS left me - wondering at times what the kettle was for.

I do know my cognitive functions and my dyslexia have massively improved since I included some form of T3 within my thyroid hormone replacement medication.

I'm post RAI ablation for Graves 2005 :

Thank you Diogenes!

Perhaps, now is the time for the NHS to consider negotiating with the liothyronine suppliers given the very low cost of this drug in other countries [...]

Now there's a thought.

Thanks, diogenes.

Mlinde profile image
Mlinde in reply to wellness1

But actually, it's not just cost that's the problem (though the NHS uses it as an excuse). I talked with my GP about this and she told that the yearly cap on medicines is, get this: £30,000!!!

SlowDragon profile image
SlowDragonAdministrator

Costs quoted are already way out of date

Article published in Jan 2021

The costs/patient/year for liothyronine rose from £550 to £3000 in 2015–16 and has since fallen to £2500.

The current price in 2020 of 28 tablets of 20 μg liothyronine is £165.18, compared with £26.15 in 2010

Liothyronine is available as a generic medication. A month's supply in the United Kingdom costs the NHS about GB £247 (US$330) as of 2019. In the United States, the wholesale cost of this amount is about US$22.40 (£16.80)

Costs today December 2021 to NHS of 20mcg liothyronine

20mcg tablets T3 per 28 days £92.51

If on 20mcg per day that’s £1202 per year

If on 15mcg per day (common dose) that’s £901 per year

Obviously still higher than just levothyroxine …..but is significantly lower than price quoted in this article of £2500 per patient

Cost of private prescription Thybon Henning 20mcg tablets 50p per tablet

20mcg per day £182.50 per year

15mcg per day £136 per year

"Judgements on the cost-effectiveness of liothyronine in the UK appear to be made implicitly in policy guidelines, driven in large part by the significant difference in the current unit acquisition cost between liothyronine and levothyroxine. Guidelines either consider liothyronine/levothyroxine combination therapy to be non-inferior to levothyroxine alone (based on the available weak clinical evidence), or to be inferior because of the shorter pharmacokinetic elimination half-life and safety concerns. Neither perspective is fully justifiable, as the current evidence base is not targeted to the specific population in question, and inferiority has not been demonstrated.

Pending further studies to clarify the role of combination therapy, patients who derive symptomatic benefit from it should not be deprived of treatment for economic reasons alone."

.

" Perhaps, now is the time for the NHS to consider negotiating with the liothyronine suppliers given the very low cost of this drug in other countries (eg, in Australia the cost for 100 tablets of 20 microgram strength is only AUD$69 or £38 pound.21"

no shit sherlock..

..... perhaps when it inexplicably went up by a squilion % might have been a good time, but better late than never.

"It is possible that the reduction in prescribing of liothyronine, captured in the data here, may be missing patients discontinuing NHS prescriptions but choosing to obtain ongoing private prescriptions or non-prescription sources of liothyronine and of NDT; this cannot be captured in this sort of analysis.

NHS data reflecting a reduction in non-conventional prescribing may therefore be missing a cohort of patients seeking private liothyronine and NDT who may not be being monitored for safety or harm. Whilst this hidden group may not be possible to quantify, it should be noted that they are likely to exist and current prescribing pattern changes may lead to an increase in this disenfranchised group of patients who may be inadequately treated and monitored and who may come to harm from this change in NHS prescribing patterns."

They say several times that " despite strenuous attempts" (to reduce prescriptions of Lio ) ..... what a shame nobody on the NHS is making similarly "strenuous attempts " to think about why it helps some people.

Mlinde profile image
Mlinde in reply to tattybogle

Yes, and it's also down to the fact that not only do GPs know nothing about the thyroid at my surgery, even the pharmacist admitted to knowing nothing about administering T3 or NDT!

Mlinde profile image
Mlinde in reply to tattybogle

Doncha know medicine is money! This is ALL about money, it's ALL about privatisation!

If this is the case -

Why oh why, are businesses still manufacturing and finding lucrative markets in which to sell their Liothyronine and Natural Desiccated Thyroid products :

Hi

And why more manufacturers don't make them in the UK, more availability, lower costs.

Many thanks, Diogenes! I always suspected that it was all about the “cost” to the NHS and never about the “value” to patients. If you underestimate the potential benefits of Liothyronine by assuming LT-4 and LT-3 are equally effective, interchangeable, similarly efficient treatments for all patients, then the “real” value of LT-3 as an incremental treatment option for some patients who don’t respond to LT-4 will never feature in their calculations. Just think about all the additional costs of all those additional and potentially superfluous appointments with GPS, Endocrinologists, and other specialists in an effort to find alternative treatments to LT-3 or combination treatments of LT-3 and LT-4! A penny for a pound anyone? Slainte!

shaws profile image
shawsAdministrator

Thanks for posting diogenes and it just goes to show that people who need T3 and who cannot recover on T4, are penalised mainly by 'experts who do not have a dysfunctional thyroid gland and neither are they scientists because we women usually have a number of health issues and are probably thought of as 'troublesome' or always complaining.

We appreciate you and your associates for doing your very best to open the eyes of those who really do not understand how unwell people can be as bodies are unable to function normally due to underdose or wrong replacement . They work on their own theories that T4 alone will restore health and of course it is cheaper.

They've also withdrawn NDTs - safety proven since 1892. Then withdrew T3 leaving levothyroxine as the only replacement.and ignoring the clinical symptoms that appear for patients. who are very unwell and may also lose their livleihoods.

If hypothyroidism isn't treated optimally by what restores their health, some may need options like NDTs or T3. to restore their health.

The professionals just do not get the message or believe females as levo works for many but not for everyone.

Those that cannot are on this forum because their health has not been restored so far.and we are fortunate to have an internet connecton these days.

I've read the Last Testament of a woman who could carry on no longer just because of the guidelines which caused her to commit suicide.

Those who make these statements have no heart at all as it is not just the loss of someone's life but how such a thing can affect all members of their family and the shock /guilt they also suffer from and it isn't their fault but the 'supposed to be' knowledgeable specialists.

Thank goodness we have researchers such as yourself who know the truth and how best to assist us to recover our health.

DippyDame profile image
DippyDame in reply to shaws

Hear hear shaws

It would be another huge step forward if they understood/ accepted the difference between glandular and cellular hypothyroidism.....T3 being essential for the latter!

Until the medics climb down from their pedestals and listen to the grounded scientists then I doubt much will change in the foreseeable future.

It is grim!

waveylines profile image
waveylines in reply to shaws

Shaws I keep saying this but they have not withdrawn prescribing NDT on the nhs as I have an ndt prescibed. They have made it increasingly harder toget it on the nhs but it is available........this maybe an area issue as I know some local CCGs state they wont prescribe. The consultant endo I saw in the nhs I had to travel a long way to see and he told me his area difnt prescribe. So its a mixed picture. I live in fear of my area going down the same road.

Mlinde profile image
Mlinde in reply to waveylines

This is the crux of it! CCGs were setup as part of the privatisation process but it's handy for a GP to simply pass the buck to the CCG, 'Sorry but it's out of my hands'. How convenient. That's why it's bloody lottery!

Mlinde profile image
Mlinde in reply to shaws

Anybody contemplated suing the NHS for dereliction of duty? Criminal negligence?

shaws profile image
shawsAdministrator in reply to Mlinde

I know of someone who committed suicide and left a note for the coroner as to the reason why.

Her decision didn't appear to make any change in diagnosis/treatment.

Mlinde profile image
Mlinde in reply to shaws

Of course not! Her/his death has not been linked to her lack of treatment I assume, in other words there's no direct connection proved.

humanbean profile image
humanbean in reply to Mlinde

The story of the person being referred to can be found here :

tpauk.com/main/article/jacq...

Mlinde profile image
Mlinde in reply to humanbean

Tragic. Like I said, the NHS/Govt (same thing) need to be sued for criminal negligence.

Great stuff - thank you Diogenes I’ll pop that with my Guardian article I found a few months back. My ‘hypo’ file is starting to take on the character of a dossier (a damning one!)😂👍

I’m sure you’ve seen it but just in case

amp.theguardian.com/busines...

Thankyou Diogenes.....so grateful for all the work you do and share with us. We are so lucky to have you. Didnt the NHS win a case agsinst the over pricing of Liothyronine not long ago and the company (ies?) got a very hefty fine? Cant remember how much. I thought they were going to have to lower their prices? Doesnt look like that has happened yet?

Link here to the fine imposed but I note it was in 2017 so how come its still so expensive!!!

gov.uk/government/news/cma-...

itv.com/news/2021-07-29/dru...

Lancashire appear to be prepared to prescribe liothyronine if NHS Endo recommends and feels there is a clear need. This from a meeting in Feb 2021 I wonder if other local areas are reconsidering? Dont think it will be easy but at least possible......?? Look at page 3

lancsmmg.nhs.uk/media/1515/...

TaraJR profile image
TaraJR in reply to waveylines

In early 2020, Thyroid Support Group Norfolk won their 3 year long campaign to get T3 reinstated in the Norfolk and Waveney CCG area.

There is now a clear, simple and workable patient pathway for T3 which we are pushing for other areas to use.

Patients in other areas could do what we did!

edp24.co.uk/news/health/t3-...

shaws profile image
shawsAdministrator in reply to TaraJR

Three years for a decision to be made is pathetic.

TaraJR profile image
TaraJR in reply to shaws

3 years was long time to keep fighting, but we stuck with it. Bear on mind that when we started there was no NHSE consultation decision, no BTA 2017 statement, no NICE guideline and no RMOC guidance. Now all those can be quoted it makes a much stronger case (along with a 2/3rd decrease in cost) Winning against the CCG is possible, and it's worth the fight!

Thanks for the link to the minutes from these meetings discussing Loithyronine RAG Status in :

Lancashire and South Cumbria Medicines Management Group (LSCMMG )

I live there, so i looked up the minutes of the later meetings to see what happened next .... it seems they are still discussing it ....... but some parties appear to be a) dragging their feet, or b) still arguing about TSH 'within' or 'near to' ref range , and what 'absolute, specific, intolerance to T4' means , and who would be deciding this.

lancsmmg.nhs.uk/downloads/m...

Progress this year (.... or lack of ) is discussed in Feb / April / May / Oct meetings....

In Oct the long awaited outcome was "it's really complicated, can we talk about it next month ?" .....

A further update was expected in Nov meeting but it wasn't discussed .

I'm eagerly awaiting publication of the minutes from Decembers meeting......

Charlie-Farley

Thanks tattybogleI’m going to read later 😊👍

And here is another authority who will prescribe liothyronine if specified as special need by an Endo (nov 21) So liothyronine is listed as Amber and Armour is Green

bswformulary.nhs.uk/chapter...

So hopefully the situation is changing?

Mlinde profile image
Mlinde in reply to waveylines

your link doesn't work

tattybogle profile image
tattybogle in reply to Mlinde

works for me ... but i can't help with why it doesn't for you ,sorry.

Mlinde profile image
Mlinde in reply to tattybogle

It works now

Mlinde profile image
Mlinde in reply to waveylines

Waveylines,

Well I've sent the link to my GP, but I'm not hopeful it will do the trick really, after all, I still have to negotiate to see one of these godlike creatures, the Endocrinologist and so far, it's not looking good.

waveylines profile image
waveylines in reply to Mlinde

Hope it works Melinda make sure you choose wisely which Endo. They don't have to be in your area.

Mlinde profile image
Mlinde in reply to waveylines

It's Mlinde not Melinda, nice name tho. Yeah, so far I've seen one Endo and that was a couple of years ago and a complete waste of time! The bugger didn't even ask me about symptoms and the effects of treatment. Maybe he was an imposter? I nixed the next one as I said here, and the next one is next June which is just too far in the future to even think about.

waveylines profile image
waveylines in reply to Mlinde

Apologies Mlinde- it was predictive taking over but didn't notice.

Mlinde profile image
Mlinde in reply to waveylines

Maybe it's all those wavy lines?

waveylines profile image
waveylines in reply to Mlinde

🤣😄for sure!

Thank you for sharing this. What is dispiriting is that there is a disconnect between clinical best practice and NHS procurement practice. News items are dominated by high profile breakthrough treatments that are purchased through negotiations by the NHS for patients with life threatening conditions - and that is indeed great news for all who benefit. But quite often we hear about these treatments being denied because of cost v benefit - and that is heartbreaking for those who lose out.

So NICE is often portrayed as either hero or villain.

What is seldom brought to light is how poor NHS Procurement are at negotiating for the thousands of medicines that benefit a high number of patients and the lack of clinician advocacy for those patients. It seems that procurement (lack of) negotiating skills override clinical best practice.

In my working life I was involved in negotiations of a high value contract with NHS Procurement - it was not anything to do with drugs or treatment - but a fairly critical ‘back office’ service. I spent very long hours in nitty-gritty contract detail for supply of services with two sets of very expensive NHS lawyers, plus contract Project Manager and various other NHS Staff. We went into minute detail on many, many points, taking about 9 months after contract award to contract signing - but I can tell you that for all the legal expertise, they were commercially very inefficient. The premise seemed to be that because we had been through a tendering exercise, cost was no longer important. Anyone with experience of such work understands that this exactly the ‘hot’ area where negotiating really starts and should continue for the life of a contract, with contract price review and cost saving mechanisms built in. This, to me, is the biggest scandal of NHS spending .

Mlinde profile image
Mlinde in reply to

It's all preparation for privatisation, after all, treating T3 like it's gold, means that eventually, we'll all be seen privately (those who've got the dosh that is). We're seeing this at work already, with many of us being driven to get private tests because the NHS one is hit-and-miss as to whether you get tested correctly or not.

SlowDragon profile image
SlowDragonAdministrator

This is exactly why endocrinologists organised manufacturing for the benefit of the NHS and U.K. tax payer

imperialendo.com/price-gouging

We have shown that an easy way to substantially bring down prices is to increase the supply of the drug. We did this by making hydrocortisone for a research study, and then asked the company that made it to launch it on the open market, and the price rapidly fell between 2017 and 2021

Hydrocortisone is an essential drug according to the World Health Organisation but this did not prevent ….increasing the price of this generic drug from £1.07 to £147.50 for 1 month’s supply between 2008 and 2017. The NHS was forced to pay an extra £60 million per year until 2017. Imperial College commissioned the synthesis of low strength hydrocortisone …… then launched the drug on the open market. Until then, there was no competition.

…..This demonstrates the effectiveness of non-profit motivation in competing with industry; an investment of £100,000 has saved the NHS over £50 million each year, without the need to invoke the CMA.

Hydrocortisone is just one example of the abuse of market position, but there are many more. Synacthen, Liothyronine and Lithium carbonate are examples of very cheap generics that have been “debranded” and then the price increased substantially.

An arms-length body or an ethical drug company that will make the drug for the NHS is needed.

We need similar development of a generic liothyronine

Government petition

petition.parliament.uk/peti...

I signed this petition months ago and also shared it on FB. What astounds me is the low response. If every member of this forum signed, the number would increase massively. The petition obviously needs to be “spread” further.

SlowDragon profile image
SlowDragonAdministrator in reply to Gingernut44

Astonishing isn’t it how few have signed it …..very disappointing

i just tried signing it again . sadly that didn't work

RedApple profile image
RedAppleAdministrator in reply to SlowDragon

I guess no-one really cares about this until it directly affects them or someone they're close to. The vast majority of people don't know anything, or give a moments thought about the cost of meds to the NHS. It's only when they are denied a vital medication, or have the cost pointed out to them by a doctor that they become aware of such things.

Despite Teva finally launching a 12.5mcg Levo tablet a few years back, in response to many patients saying we absolutely need to be able to fine tune our dose daily, I understand the uptake has been poor.

This will be down to intolerance issues for some, but also because GPs don't want to pay the extra cost of the 12.5mcg tabs. So they continue to prescribe 25mcg tabs instead, telling the patient to take them on alternate days or split the tabs.

helvella profile image
helvellaAdministrator in reply to RedApple

Teva only get away with the increased price of their 75 microgram tablet because it isn't much different to two tablets - a 50 and a 25 - together.

There is no intrinsic reason for 25, 50, 75 and 100 to vary in price one to another. It is clearly NOT the cost of the active pharmaceutical ingredient, as the 25 costs more than the 50, and the 50 costs more than the 100!

bnf.nice.org.uk/medicinal-f...

Teva might argue that the 12.5 needs something special to be able to achieve accurate dosing, I simply don't know, but I am very sceptical.

waveylines profile image
waveylines in reply to RedApple

Yes you are right re they don't want to pay the extra cost of the lower dose tablet. My GP did simular with my ndt when I asked for some 1/2 grain tablets included.....was refused due to cost. In all honesty its cost that rules most thing in the NHS..... years ago I argues for ndt on the basis of its cheaper.....which when they added all the extra meds they'd had to add in when on levothyroxine they agreed.....and so that was the reason I was allowed NDT medication. My health didn't really come into it.

SlowDragon profile image
SlowDragonAdministrator in reply to RedApple

But with 120,000 members on here, even if only 30%- 50% are on T3/NDT ……that ought to be way more than 10,000 signatures

If everyone in U.K. signed that had to get T3 or NDT prescribed private or self sourced that ought to be way more than 10,000

RedApple profile image
RedAppleAdministrator in reply to SlowDragon

'with 120,000 members on here'

That refers to the all-time membership (i.e. since the forum was started). The daily 'active' membership is but a fraction of that. Then there will only be a fraction of the active members who actually see these posts. And some of those will be from outside the UK.

Trisha15 profile image
Trisha15 in reply to SlowDragon

I live in N.Ireland - I wasn’t sure I could sign this. I think it asks fir a postcode. But I will check again

helvella profile image
helvellaAdministrator in reply to Trisha15

It does - but it simply has to be in the UK. Parliament does not disallow votes from outside England even on bills that only apply in England.

(Part of the whole West Lothian question which Tam Dalyell was famous for.)

Sorry wasn't aware of it. Have signed it now . Its a great idea.

I’ve said this before, but could you imagine the sudden volte face if the price of T4 soared and T3 became tuppence? Which one would be classified as ineffective or dangerous then? 🤸🏿‍♀️🥛

waveylines profile image
waveylines in reply to MissGrace

I can indeed.....it happened with me re ndt or lithyronine which at the time liothyronine was much cheaper but once the cost of that change ndt was the best thing since sliced bread. Hey ho...

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