A national scandal ?: I have noticed recently... - Thyroid UK

Thyroid UK

118,501 members137,408 posts

A national scandal ?

knitwitty profile image
knitwitty

I have noticed recently that many more people are posting and asking for reliable suppliers of T3.

I am beginning to think that this is becoming a national scandal that so many people are having to source and purchase essential medication for themselves.

My own Endo is very sympathetic but refuses to prescribe because he says it will bankrupt the CCG, he has written to my GP 4 times , soon to be 5 times to ask them to prescribe but to no avail.

Gp refuses because they don't know enough about T3 ( could they not find out then!!) and they don't have anyone taking it already.

I have shown doctors the ambiguous guidelines for my CCG stating that T3 cannot be prescribed in a primary care setting , but can be taken after a patient is stable ( which I am) but I am getting nowhere fast.

What on earth is happening ? :(

106 Replies
SlowDragon profile image
SlowDragonAdministrator

Does your endo have any idea how much price of T3 has dropped

20mcg tablets are now £118 for 28

Down from £268

Thybon Henning 20mcg MIGHT be available on NHS cheaper

Private prescription enables access to Thybon Henning via UK specialist pharmacies at £1 per 20mcg tablet.....not sure if also available at same price on NHS prescription

knitwitty profile image
knitwitty in reply to SlowDragon

Hi SD, Yes he does know how much the price has dropped ,it was even higher than the price you quoted above ( around £350 for 28 tabs ) when I first asked for a trial of it. I had an appointment with him and told him, he won't give me a private prescription either , I have asked before .He his writing to my GP again, we have recently joined up with a bigger a practice I am hoping they might be a bit more enlightened. :(

SlowDragon profile image
SlowDragonAdministrator in reply to knitwitty

Guidelines are clear endo must prescribe via hospital pharmacy for 3-6 months before formally requesting GP take over ongoing care and cost

Which CCG are you?

knitwitty profile image
knitwitty in reply to SlowDragon

I'm in Merseyside, I have shown the endo the prescribing data , but he still told me he couldn't prescribe it for me due to cost. I really don't know what I can say to persuade him otherwise as his mind is made up.My GP surgery won't prescribe because they have no one else on the medication and don't know enough about it.

They also said because I initiated it myself ( on the advice of the Endo ) they we not obliged to take over the prescribing, this is despite him saying to me that, that shouldn't make any difference because I have been stable on it for 2 years now.

He is about to write again to the GP, this will be the 5th time .

It's a very parlous situation.

SlowDragon profile image
SlowDragonAdministrator in reply to knitwitty

Liverpool CCG

openprescribing.net/analyse...

887 prescriptions for T3 last year

Typically 6 prescriptions per person per year

knitwitty profile image
knitwitty in reply to SlowDragon

I have already pointed this out to the GP and Endo, still no prescription at the moment.

shaws profile image
shawsAdministrator in reply to knitwitty

Is it the NHS that is being 'ripped off' as many countries provide a T3 which is very much cheaper than in the UK. Someone isn't "doing their best" to source the cheapest T3 available from within Europe.

knitwitty profile image
knitwitty in reply to shaws

The NHS is certainly being ripped off, but to be honest I don't think they have the will or inclination to sort it out, the "I can't be bothered " attitude seems to be alive and well unlike many of the people who frequent this forum !

BrynGlas profile image
BrynGlas in reply to shaws

I have always thought it would be some pratt who went for a very dodgy contract for at least T3 and possibly lots of other meds!!

Don't you think that there should have been some sort of clause in a contract dealing with rising prices? And it has been going on for some time, I can't help but think that someone booked ???? And how long before this contract becomes available for rethinking??? Sometime never it seems.

Sorry for the rant.

SlowDragon profile image
SlowDragonAdministrator in reply to BrynGlas

There’s no price regulation on any generic medications

The thinking was….that competition would self regulate prices…driving prices down

Instead certain companies actively searched out niche medications that had only one supplier license. They then snapped these up and vastly inflated the price ….with no competition or price regulation to stop it

ft.com/content/5ba9dafe-12f...

More recently there’s new legislation been passed in 2017 to force prices down, but there’s been no action by Government

pharmaphorum.com/views-and-...

gabionline.net/Generics/Gen...

pharmaceutical-journal.com/...

RedSonja profile image
RedSonja in reply to SlowDragon

I paid something like less than £20 for 100 tabs of T3 medication a couple years ago so that is still ridiculous. It's absurbed. I don't understand why the NHS feels tied to one supplier.

knitwitty profile image
knitwitty in reply to RedSonja

I don't understand it either !

SlowDragon profile image
SlowDragonAdministrator in reply to RedSonja

There's now 3 suppliers of 20mcg tablets.......this is very very slowly driving price down. Two new suppliers came in 3 years ago at virtually identical high price.

Only single license for 10mcg and 5mcg tablets ....so they remain even more expensive at £148 and £90 per 28 tablets

LindaC profile image
LindaC in reply to RedSonja

I've been saying for a long while, 'A' Level Business Studies students could do better at purchasing... this seems so sick, even corrupt? All I do know is that some sicko-little cabal decided that NDT and T3 had to go... to show that their little T4 theory is 'right' and those fearful doctors... seem to see themselves as having to go along with it. 👺👽

Alanna012 profile image
Alanna012 in reply to LindaC

Oh I agree. Although you're being overly nice to doctors: a few good ones fear for their careers, but would help you if they didn't have to carry the risk....a few rare birds carry the risk. The rest literally just don't care to go away, research and try and understand and they won't listen either.

THEY are the professional you see, and they deign to listen to you for your 6 minute slot at all. How could you possibly still be hypothyroid?! The Mighty TSH has spoken and it says your thyroid is just fine!! Everything is ticking along. Don't tell ME you're still hypothyroid, so what your hair is falling out. So what you can't get out of bed. Chronic fatigue is well established to be in the mind. You're a woman or a beta male and probably hysterical, the modern term is depressed! Women in Victorian times used to take to their beds with the malady you know, before we discovered antidepressants. Here. Take 2 a day and stop bothering me. My god, I don't get paid enough to deal with the 'worried well.'

We have a culture of encouraging God Complex in medical professionals. It's really outdated and rubbish.

LindaC profile image
LindaC in reply to Alanna012

Oh I know that so well, believe it :-)

See Pic below for 'caption' - I've used as my letterhead.

“At very least do no harm…” “In Memory of My Health” - LC

Doctoring in the 21st Century

What about the doctor-patient relationship; a need to work with, relate to, and assist the individual in front of you? Medicine now seems to be suffocating [some] doctors and, in any event, patients are largely blamed.

Wessely's MUS narrative, as Weetman’s ‘somatising’ drivel, both infecting endocrinology for some time, may well have been 20th Century darlings; not so much now. The percentage of people with such problems cannot account for huge numbers with physical issues, disingenuously ‘written off’ to spare doctors having to handle complex cases. Even if some patients have ‘psychological issues’ (in my case, rest assured this is not so), is this really how you medics respond to a patient in those circumstances!? There is a huge scam going on within endocrinology, which relies on dismissing individuals on the basis of flimsy population ‘evidence’ which cannot possibly stand up to scrutiny. Indeed many highly qualified, compassionate and smart doctors have fallen foul of this insidious movement à la the hideous ‘Wessely and Weetman School’.

Perhaps if doctors today could find it within themselves to:

1. Accept when it comes to efficacy and/or treatment side effects, the patient most likely knows best.

2. Accept that your job could be more interesting if you learned to co-ordinate the experience and the research efforts of your patients, rather than continue to dictate to or dismiss them.

3. Accept that patients continue to come to you not because you are necessarily good at your job but because society has largely made it impossible to get help or medicines except through you.

4. Accept that your actions are often dictated by ghost written articles and inaccessible data, mediated through guidelines that you haven’t the guts to stand up to even when you see discrepancies.

5. Recognize that far from being founts of wisdom and compassion, you and colleagues can get quite nasty if questioned and so can be seen an obstacle to work around instead of a source of support.

6. Acknowledge that Medically Unexplained Symptoms can simply point to limitations in current knowledge; even your knowledge. It is not some euphemism for that old ‘all in the head’ psych junk.

Doctors and patients are now in a unique position to mutually engage with health issues. Doctors can nudge patients toward healthier lifestyles; guide them to personalised and effective treatments; empower to ensure patients enjoy a maximum quality of life for as long as possible; they can yet more often than not don’t.

Fundamentally medicine has gone in a direction taking it away from personal care for depersonalised guidelines, notions of academic elitism and bureaucratic complexities which all simmer behind the scenes.

For the NHS to survive, doctors need to join the wider quest of keeping people healthier for longer, or maybe it is now too late for both patients and for the NHS?

This is not ‘Healthism’ à la Weetman – it is meant to be 21st Century Healthcare for Patients

Hypothyroidees - Ducking Stool
Alanna012 profile image
Alanna012 in reply to LindaC

That is brilliant!👏🏽I am going to save this post. I couldn't articulate a single word better. The picture is very apt.

It's called the patient-doctor RELATIONSHIP which describes a certain mutuality, a sharing, a reciprocation. But once you can no longer be fitted easily in a neat medical box (MUS) you see it is an autocracy.

LindaC profile image
LindaC in reply to Alanna012

Maybe % of it is mine - can't take all credit for it - BUT it's certainly my sentiment. I do regularly 'take a poke at them... in writing', not because I'm rude and disrespectful but because they are. Indeed, respect is mutual... when you say that as a child re your parents, then it follows... xox

shaws profile image
shawsAdministrator in reply to LindaC

Our older doctors knew how to diagnose and treat, and two of them i.e. Dr Gordon Skinner and Dr Barry Peatfield were well-trained and could diagnose and treat patients without blood tests. Imagine the amount of money the NHS would save if they didn't need to take blood tests to diagnose/treat hypo patients.

Patients travelled all over the UK, to consult with these two doctors (now deceased) and there are no up-and-coming doctors with their amount of experience.

For so doing, due to the strain Dr Barry Peatfield resigned his licence so that he could still 'advise' patients how to recover their health.

Dr Gordon Skinner appeared before the GMC several times as he refused to listen to the guidelines and also wrote a book. Also, since his demise, his staff have been collating all of their scientific evidence and they said every day with Dr S was enjoyable and they had lots of laughs. His staff have now collated their scientific evidence but need sufficient monies to publish the scientific evidence. They also said it would 'shake up the organisations'.

LindaC profile image
LindaC in reply to shaws

shaws, that is great to hear - any idea how long, how much to publish?

I saw both of them - Dr S a few times - last time was in Glasgow, I danced a jig with him... singing a song about the English - without him, I'd never have gotten onto the path I did; sadly, left too long, so never quite got where I could have been.

Saw Dr P only once, for me to try to cut out some of the supplements I'd added over years trying to 'fix myself' - he added two to the list 💚 - wonderful man who knew more about the thyroid/adrenals than many within this country combined. Another lovely man! x

BrynGlas profile image
BrynGlas in reply to shaws

Great, I'd buy it tomorrow!!! Can we donate?? If so how??

BrynGlas profile image
BrynGlas in reply to shaws

I saw Dr Peatfield once, he is a lovely person, he was totally straight jacketed. He didn't need being hounded out

shaws profile image
shawsAdministrator in reply to Alanna012

None have read a 'last testament' of a patient who could no longer carry on taking thyroid hormone replacements as she couldn't recover her health. She left a letter for the coroner to explain the reason why she took her life.

It's very sad altogether.

knitwitty profile image
knitwitty in reply to shaws

I agree, the fact that she was left to languish for years is a complete and utter scandal, I too read the letter that was presented as part of the coroners report. The fact that nothing much has changed speaks volumes.

BrynGlas profile image
BrynGlas in reply to shaws

And what did the Coroner say? They are just killing us slowly and if they aren't aware of it, I will turn Dutch overnight!!

shaws profile image
shawsAdministrator in reply to Alanna012

Considering that NDT was the very first replacement that saved lives from 1892 onwards. Without the need for blood tests but gradual increments until patient was symptom-free. If they could do that in 1892 why cannot they do it now - in the 2020's.

BrynGlas profile image
BrynGlas in reply to shaws

Because they can Shaws! How else?

BrynGlas profile image
BrynGlas in reply to Alanna012

You are a woman after my own heart. My GP doesn't like it that I know more than he does. And he won't discuss it with me in any way.

shaws profile image
shawsAdministrator in reply to LindaC

How could those 'at the top of the tree' decide that NDTs were 'outdated' despite their long-life from 1892 and the fact that it saved lives without blood tests being available and it only depended upon the patients' clinical symptoms. Another fact is that they contain all of the thyroid hormones that a healthy thyroid gland would do.

T3 was withdrawn due to the cost. T3 could be sourced elsewhere at a cheaper cost but the 'professionals' insist that levo is fine. Not for me it isn't as I was far more unwell on this product than before I diagnosed myself when TSH was 100. Not one professional diagnosed me despite our 'old-fashioned doctors' diagnosing upon clinical symptoms alone' and prescribing NDT (now withdrawn through lies).

LindaC profile image
LindaC in reply to shaws

Because there was an increasingly growing cabal... who'd decided that NDT and T3 had to go. I'm with you all of the way, shaws. I did well on NDT... wished I'd continued; but ended up needing to supplement with T3; both of these via Dr S then Dr P respectively + NHS funded Armour for 5+ yrs. 'They' have no clue BUT, as stated, this is about something else and patients simply don't figure. Yes, lies, cowardice, misogyny... you name it; little to do with hypothyroidism and patient care.

T3 had costs hyped up... deliberately!? Who can tell, I'd put nothing past them! I know, I've read your dreadful experiences before and still reel at a TSH of 100... :-( plus your huge admiration of Dr Lowe. TV Doctor Chris 'dx' me... stated the signs/ symptoms, with me sitting slumped on the chair = at that time life had become bed-chair-bed. Two local endos 2008/2009 said not hypothyroid. Worst of all, 2003 my TSH had been only 0.14 within range + in 2007 0.11 just within range, with heart and weight issues. I looked like a creature from the deep - so ill - it took Dr S in 2010 to 'do something'; properly trialed on Levo but in weeks I was HYPER... that didn't mean there was no thyroid issue, just that I didn't need MORE T4 - I did rather well on Armour - JUST ENOUGH T3 to help. Then Dr P said, "You'll need T3 for life". I've no idea where I'd be without both of them.

WHO is left for people to go to? So wish someone would...

shaws profile image
shawsAdministrator in reply to LindaC

Any up-and-coming young endocrinologist would soon be knocked off his feet if they dare not to follow the 'guide'lines laid down to the letter. The majority must be afraid of losing their livelihoods after all those years of study.

LindaC profile image
LindaC in reply to shaws

Patient Health, (thought that's what they signed up for), needs to be their priority! Who is going to impress that upon them in these times? 👽🖤

SlowDragon profile image
SlowDragonAdministrator in reply to shaws

That’s exactly what I said when raised this issue with several senior endocrinologists …..they are only prepared to go against guidelines once at end of their career

Very few up and coming younger medics will be willing to sacrifice promotion or their career progression

LindaC profile image
LindaC in reply to SlowDragon

Mafioso Medicine, for younger doctors and patients. Something very 'wrong' here.

BrynGlas profile image
BrynGlas in reply to LindaC

Drunk with their own power no doubt.

LindaC profile image
LindaC in reply to BrynGlas

It seems so. If this is how they view 'power',,, more to be pitied [well, you get the drift 👺] - abusing the ill is surely the lowest level of cowardice, eh? ☠️

BrynGlas profile image
BrynGlas in reply to LindaC

Oh, can't work out how to open it up! LoL I am hopeless at such things!!

LindaC profile image
LindaC in reply to BrynGlas

Just click on it, it opens... unless that's just for me?? Sorry if it is. :-(

BrynGlas profile image
BrynGlas in reply to LindaC

Oh yes. That is something that needs to be remembered indeed. Thanks LindaC

LindaC profile image
LindaC in reply to BrynGlas

I've found much of it elsewhere:

Anthropologist Margaret Mead was asked by a student what she considered to be the first sign of civilization in a culture.

Mead said that the first sign of civilization in an ancient culture was a femur (thighbone) that had been broken and then healed. Mead explained that in the animal kingdom, if you break your leg, you die. You cannot run from danger, get to the river for a drink or hunt for food. You are meat for prowling beasts. No animal survives a broken leg long enough for the bone to heal. broken femur that has healed is evidence that someone has taken time to stay with the one who fell, has bound up the wound, has carried the person to safety and has tended the person through recovery. Helping someone else through difficulty is where civilization starts. We are at our best when we serve others. Be civilized.

— Ira Byock, The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life (Avery, 2012)

Gingernut44 profile image
Gingernut44 in reply to RedSonja

If that was Greek Uni Pharma, the packet I have has a price marked on it - 28 tablets 25 mcg €2.30. I don’t know what the current exchange rate is but that’s pretty damn cheap

It certainly is ! Tiromel is available in turkey for a similar price.Heaven only know why the NHS don't get their act together and buy T3 from a source other than the rip off merchants they are currently using.

LindaC profile image
LindaC in reply to knitwitty

They simply don't want to... advised by the cabal that these are 'dangerous'... err, like being so ill isn't! The mulitiple costs re untreated hypothyroidism... still, that's jobs for the boys!

BrynGlas profile image
BrynGlas in reply to Gingernut44

PM please - could anyone tell me where to order/pay for them. I am due for more

BrynGlas profile image
BrynGlas in reply to SlowDragon

Wow, I missed that SlowDragon!!!

shaws profile image
shawsAdministrator

The answer is Money, Money, Money and it is scandalous how high the NHS is being charged - say T3 for instance or even NDTs (natural dessicated thyroid hormones prescribed since 1892 and it has a well-proven safety) but withdrawn due to the cost but without contemplating how unwell patients can become.

I have read of one person who could no longer continue the 'fight' and wrote a last 'testament' for the coroner to read as they could no longer carry on living as it was. I think that is terrible and we may know one or two people who've taken their own lives (not always due to being hypo) but feeling they've been unwell for too long, and being given anti-d's instead of offering 'options'.

Regarding NDTs -- saving lives of many and without the need for blood tests. NDTs were withdrawn due to False Statements made by those who do not take it (I assume) and uncaring about disabling symptoms which they are 'supposed to know' how to relieve and restore health' but who ignore symptoms and probably prescribe antidepressants instead.

Also withdrawn was T3 (has been reinstated but only if an Endocrinologist prescribes ) but many medical professionals still wont prescribe.

I doubt the coroner would publish such a tome as it could upset many people who may be going through a similar journey. In some countries T3 can be sourced for around a few £s and I think that's due to maybe not having an NHS and patients have to source their own, usually with a prescription. So instead of patients remaining very, very symptomatic why cannot they, at the very least, be offered a trial of 'options'.

knitwitty profile image
knitwitty in reply to shaws

I think you've hit the nail on the head when you refer to money, there must be some vested interests involved. We all know how powerful pharmaceutical companies are. I'm beginning to think that because the NHS is so big that many within it just can't be bothered to rock the boat and they prefer to go down the "deny the patients " , instead of taking on the powers that be, on their behalf.

SlowDragon profile image
SlowDragonAdministrator in reply to knitwitty

Competition and marketing authority trying to take them on ...but case seems stalled ...Covid not helped obviously

gov.uk/cma-cases/pharmaceut...

brickcourt.co.uk/news/detai...

Media coverage

thyroidtrust.org/media-cove...

mjauk.org/wp-content/upload...

medscape.com/viewarticle/90...

theyworkforyou.com/search/?...

BrynGlas profile image
BrynGlas in reply to knitwitty

Indeed and we have seen that with Covid and PPE among other stuff which are/were needed.

totally agree. we have spoken by email about this. i wrote to my mp when i lived in london ( rosena allin khan), now i’m back in liverpool i’ve written to kim johnson. happy to continue talking or even meet up to discuss, as i work in law and my mum is a retired judge, so maybe between a few of us we could start a campaign or join up one of the current campaigns?

LindaC profile image
LindaC in reply to london81

Oh yes!

knitwitty profile image
knitwitty in reply to london81

Hi London,I remember speaking with you , if there is anything we can do collectively , count me in.

I thought the CMA was supposed to be looking into this situation of ridiculous pricing of T3 but everything seems to have gone quiet.

BrynGlas profile image
BrynGlas in reply to knitwitty

I wonder why?

SlowDragon profile image
SlowDragonAdministrator in reply to knitwitty

Because cases keep getting over turned or taken to appeal

See Pfizer Flynn case

pharmatimes.com/news/pfizer...

ashurst.com/en/news-and-ins...

Wired123 profile image
Wired123 in reply to london81

Did you get anywhere with Khan? She’s a doctor as well as an MP so well placed to guide things.

I tried a little while ago to see if we can setup an APPG - a parliamentary group for thyroid sufferers. There was little appetite for this on this forum unfortunately.

I do feel we need such an APPG, I’ve attended the Diabetes one and it’s actually brilliant.

We need a Lord or MP to set it up, perhaps Khan may know who in parliament has a thyroid problem (or a close family member). With that vested interest that person can setup an APPG.

Happy to push this collectively.

london81 profile image
london81 in reply to Wired123

good idea. yes she was good. she wrote to CMA on my behalf flagging my situation as someone who is taking ndt/t3 privately with consent of nhs. i have four in my immediate family in this situation. I found her very understanding. at the time i didn’t need t3 on nhs, or at least i didn’t want to have that fight and had sufficient supply to keep me.

now it’s much harder to get ndt and much more expensive as we know.

i wrote to kim johnson pre brexit flagging up my situation as someone who has just got a prescription from uk doctor privately to obtain. from Germany, pre brexit, asking her to look into post brexit EU medication availability . she replied but never got back to me i’ll have to chase her ( she said she would talk to rosena allin khan)

i’m in the position now of being back on ndt paying around £100 a month or more. happy to pay it but would love to be able to sit back and not worry about sourcing, importing etc

so yes happy to be involved in anything to do with campaigning

will have a think myself

Wired123 profile image
Wired123 in reply to london81

Well the issue is two fold. One is being able to source it and then the second is being able to afford it.

I pay for my own T3, around £100 a month. My mum needs T3 but cannot afford to pay as she’s retired.

We shouldn’t have such disparities in the UK.

T3 can also pay back its cost if the patient needs less NHS investigations for multitude of symptoms and less reliance on benefits if they can get back to working.

If you can engage with Khan and see who else can join our cause, perhaps Gove as his wife is also Hypo, and get that APPG up and running.

Happy to help, so feel free to DM me

london81 profile image
london81 in reply to Wired123

i agree with you 100 percenti started my dad on ndt and he’s stabilised after years of suffering, and a lasting impact on his brain/mental state ( some of which was due to him being self neglectful but even when diagnosed not one person in his care team- psych, endo,gp etc, gave a thought to t3 or autoimmune, i had to write letters and make a fuss to get them to even get him to an endo)

I will need to have a think because although my legal skills are pretty good, and i’m a persistent little f’ker, i’m not so great at campaigning side of things. i will need to do a bit of reading and thinking!

Wired123 profile image
Wired123 in reply to london81

Don’t need you to campaign, just need to get some MPs and Lords on board as APPG can only be started by an MP or Lord and need a few from each side of the political spectrum.

It’s not going to happen overnight but I used to work for a very large pharmaceutical and I’ve seen the work that the company did with the APPGs, it’s very powerful.

It’s actually a shambles that we don’t have one for thyroid when most other diseases have an APPG.

Alanna012 profile image
Alanna012 in reply to Wired123

We absolutely should have one for thyroid. What can I do yo support,? Write to my MP? Mine is left of the political spectrum.

Wired123 profile image
Wired123 in reply to Alanna012

Let’s think about coordinated action.

We all know the history of what’s happened and how it’s all unfair.

Nothing will change unless we get together and use our resources wisely.

Individual and sporadic action we’ve seen in the past has achieved sweet FA sadly.

An APPG is part of the solution as it creates a forum at the Palace of Westminster with key decision makers from the main parties and an opportunity for the experts to attend and speak - ie, doctors who prescribe T3/NDT as well as patients to talk about their experiences.

These meetings are minuted and those minutes published, providing more weight to make things happen.

So first steps is to get together with whoever wants to join in this endeavour and come up with a coordinated plan.

Does anyone know the number of thyroid disease sufferers in the UK? 10,000 votes in a petition is enough to have the issues discussed in parliament which will really help in establishing an APPG.

london81 profile image
london81 in reply to Wired123

shall i send you my email address and maybe we can set up some type of email discussion? there is improving thyroid campaign on facebook who have template letters, maybe a good idea to liaise with them and lynn mynott? once we have an idea on action i’m happy to contact rosena A-K and kim johnson again to ask for support

knitwitty profile image
knitwitty in reply to london81

Hi LondonI would be more than happy to join any campaign to change things for the better, PM me your email address if there's anything I can do to aid the situation, my MP is Katherine Fletcher ( West Lancs ).

Wired123 profile image
Wired123 in reply to london81

london81 drop me a DM please with your email and let’s take it from there.

If anyone else wants to join in please also send me a DM with your email address knitwitty Alanna012

Happy to get as many of us involved in kicking this off. The more the merrier!

Hopefully we can get an APPG setup in the next year and invite all the forum members to the Houses of Parliament for the inauguration!

london81 profile image
london81 in reply to Wired123

will so now

knitwitty weve emailed previously my email starts with niamho

knitwitty profile image
knitwitty in reply to london81

Apologies , I remember now. Thanks for reminding me. :)

BrynGlas profile image
BrynGlas in reply to london81

If I can help I would be very happy too. I have wanted to make a big noise for years, it is terrible, this is beyond a joke, this is discrimination and nothing less.

shaws profile image
shawsAdministrator in reply to london81

Lyn Mynott who started Thyroiduk.org.uk has attempted many times to change attitudes. Even met The Lords. Also attended at the Scottish Parliament when they were dealing with complaints about the restriction of thyroid hormone replacements. The Parliament came to the conclusion that some people didn't recover on levothyroxine, and that they should get options in the future.

thyroidtrust.org/scottish-p...

thyroiduk.org/about-thyroid...

Wired123 profile image
Wired123 in reply to shaws

Thanks for the history Shaws, but we need to now crack on and perhaps try a different approach to make things happen. It’s a new world, new MPs and a very different PM in the hot seat.

I worked with Matt Hancock many years ago, so also will try that angle.

We have to try to change the status quo and like I said there’s a reason that the Big Pharma I previously worked for (I’m sorry, I was a sellout!) used to really engage with APPGs to make things happen for their benefit. No reason we can’t use the same tactic.

Even if we don’t get an APPG, we can still get a group of MPs on our side. Looks like london81 has already got this kicked off so let’s push on with this.

shaws profile image
shawsAdministrator in reply to Wired123

Lyn Mynott of Thyroiduk plus Sheila Turner (now deceased) of Thyroid Patient Advocacy UK both fought to change attitudes.

BrynGlas profile image
BrynGlas in reply to Wired123

I missed that, but you can put my name on the list. We have been left in no man's land for far too long and we don't seem to have any sort of 'muscle'. We just exist, that's all and not very happily. I have always wanted to scream about this Hypothyroid which is deemed too unimportant we don't often die quickly!!

Wired123 profile image
Wired123 in reply to BrynGlas

If you want to join in then DM me your email address.

shaws profile image
shawsAdministrator in reply to london81

That sounds wonderful and Lyn Mynott who began Thyroiduk.org.uk and who has attended a number of events, such as The Lords (about withdrawal of thyroid medications) and The Scottish Parliament to try to change attitudes of the medical professionals. She and some others from different 'help' groups are trying to change the medical mindset.

It is beyond belief that those who make decisions about what we can be prescribed can also withdraw thyroid hormone replacements that enabled patients to recover their health, i.e. T4/T3, T3, and NDTs without any notice. Particularly NDTs, first taken in 1892 and it saved lives from then on, without blood tests but the skill of the doctors.

I believe False Statements were made - in order to get it withdrawn - about NDTs despite it being the very first replacement that saved lives from 1892 onwards without blood tests but based upon the relief of clinical symptoms. The decisions to withdraw NDTs and T3 caused havoc amongst patients who took either.

They forced people to source their own ( from where ?) so what kind of 'Health Service is that' i.e. Self Service? Unfortunately some prices may be beyond what people can afford and it is extremely worrying that 'costs' may prevent a return to good health.

For instance - Mrs Clinton and Oprah Winfrey are hypo and well but both are millionaires and can afford whatever is necessary.

What if people live alone and at times are too unwell to look after themselves and fed up as they have had no improvements in their health? May even have lost their jobs or worry about losing them or their homes. Their families (if they have any) may be too far away to support them.

They may also not have access to the internet or mobiles - then what happens?

I have been having a bit of to-and-fro with the bods who run the labs here in Wales, as they decide what to test. The latest missive from them was that their testing strategy (only TSH) was on the recommendations of the Endos "as they are experts in the field". Oh how I laughed. I sent them some fairly recent papers about the importance of testing T4 and T3 and they rubbished them by saying they were "rodent trials". They were not.

They also said NDT was not fully tested, so 100 years of "trial" with no ill effects was dismissed at a stroke. I will fire something back...

My MP, when asked to help, has ignored me. He too is due a very polite verbal smack!

helvella profile image
helvellaAdministrator in reply to serenfach

As I see, there can be only one reason NOT to do the set - TSH, FT4 and FT3 - and that is money. Whether it is the direct cost of the tests or the "machine capacity". If they were absolutely free, would they still argue against doing them?

knitwitty profile image
knitwitty in reply to helvella

Actually another reason not to test everything might be because they then couldn't deny the problem in front of their very eyes. If they test TSH alone they can say" TSH is in range you must be ok, your problems are not your thyroid, let's put you on a variety of other medications to mask the symptoms of under treated hypothyroidism". And I can't believe that is COST effective for the NHS.

In my case my TSH was around 1 , my T4 around 21 and my T3 just 4, I was unable to convert, but had I not tested those things privately I would never have know why the Levo was not working.

As I mentioned in the original title it's a national b****y scandal !

I am completely well on a small amount of T3 alongside my levo.

helvella profile image
helvellaAdministrator in reply to knitwitty

I agree that some might wish that - but I don't see a lab being able to hold to that line.

If an analysis system manufacturer provided a full set for the same price as just TSH, it would put pressure on the lab. (Remember, Full Blood Count is incredibly cheap per item measured. No-one would now suggest that they divide them up and doctors have to choose a few of them for each patient. :-) )

Endos would look extremely perverse to demand that a lab stop testing FT4 and FT3 if there were no cost.

I think someone on the forum did a FOI on the cost of an FT3 test and it came back at 93p or thereabouts when done in combination with TSH and FT4. I think the reason is that, if the FT3 is found to be below range, they would have to accept the need to prescribe. If only the TSH is tested and is in range, then they’re home and dry. Am I being cynical 🤨

Wired123 profile image
Wired123 in reply to Gingernut44

Wow this is crazy, if this is actually true then we need to raise the facts in parliament and make things happen.

Is it possible to get more info on this?

Gingernut44 profile image
Gingernut44 in reply to Wired123

Let’s hope the person that did it sees this thread. I’m sorry, I can’t remember who it was but I think it was a gentleman. Maybe I’ll put a new post asking who it was, it was some time ago.

helvella profile image
helvellaAdministrator in reply to Gingernut44

jimh111 - I think.

Gingernut44 profile image
Gingernut44 in reply to helvella

Thanks helvella, after a certain amount of brain racking I remembered who it was - 2 years ago 😱 not bad for someone hypo

Gingernut44 profile image
Gingernut44 in reply to Wired123

I’ve been racking my brain trying to remember who posted it and with a bit of searching have found him. It was jimh111 posted it 2 years ago under the heading “the true cost of thyroid testing”. I’ve alerted him so perhaps he may appear. Let’s hope so. If not, if you look on members posts you’ll be able to find it.

Wired123 profile image
Wired123 in reply to Gingernut44

Thanks much obliged

The labs here are working to a document called Prudent Wales. (prudenthealthcare.wales). It states that "appropriate tests, treatment and medication" as a priority action, and then goes on to state "However, there is growing evidence that too many people undergo tests and receive treatments and medications, which have little clinical benefit and, by doing little good, can lead to physical or psychological harm." For this reason they can deny tests. Apparently they can decide what is an appropriate test, even if the GP asks for the test. This is across the board, not just thyroid. Nurses now know to write "smelly" on a swab test or it does not get tested, etc. Vit D tests are only done on those with a small range of illnesses....

I understand that the NHS has to save money, but this costs more in the long run with missed diagnosis, wrong diagnosis and damage to patients.

shaws profile image
shawsAdministrator

That's so stupid i.e. "but can be taken after a patient is stable ". We want to become stable but they wont provide the prescription of T3 or T4/T3 that will help to assist the patient to relieve their symptoms.

knitwitty profile image
knitwitty in reply to shaws

It's a bit "chicken and egg". :(

I have just sent a long, long email to my local Health Board, because I am insisting that they tell my GP that it is not illegal in the UK to be prescribed T3 on the NHS!!

I have told them that I was diagnosed at about 47/48 years and as my GP won't even discuss T3 because he insists that it is illegal and forbids me to mention it to him that I think he needs educating about T3 because he is letting his patients down, or at least this one

So I have demanded referral to an Endo because apparently my GP hasn't bothered as far as I know because I have heard nothing about it as yet.

I also said I was considering taking the Health Board to court because they have forced me into having to learn how a hypothyroid patient should be treated so that I can treat myself??? Ggggrrrrrr

Everyone who can't get a GP/Endo to treat them properly, I suggest we could all do the same maybe???

I am sick of more of the same, I want to shout from the rooftops that I am not standing for it anymore as well.

SlowDragon profile image
SlowDragonAdministrator in reply to BrynGlas

Print this out and give it to your GP

New NHS England Liothyronine guidelines July 2019

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Roughly where in the U.K. are you?

If in England

Here’s prescription numbers for whole of England

56k prescriptions in last year

openprescribing.net/analyse...

BrynGlas profile image
BrynGlas in reply to SlowDragon

I am in deepest darkest North Wales SlowDragon. My house is up for sale though, I can't cope with the mountain and the flipping GP anymore! LoL

And the NHS side of Practitioners and getting repeat prescriptions etc is archaic. I just need a Fred to pull me around by my hair!!!

SlowDragon profile image
SlowDragonAdministrator in reply to BrynGlas

Leading researcher and exponent of value of T3 for patients is at Cardiff. Professor Colin Dayan

thelancet.com/journals/land...

BrynGlas profile image
BrynGlas in reply to SlowDragon

I know where I would like to stick it!!!!

Looks interesting, they both do.

Thanks very much

I had a letter from my Gp few days ago like many other patients at the practice stating all the medications on the long list in the letter will now be stopped by the surgery any patients on the listed meds will have to now get from their consultants who prescribed them I noticed T3 meds were listed. They wont accept consultants asking them to provide

helvella profile image
helvellaAdministrator in reply to Gsd2011

That reads like improper practice. After all, the GPs receive funding to supply medicines. If they are going to be supplied via consultants, the GPs shouldn't continue to be paid as if they are supplying them.

(Even if the cost were a small part of the budget, the principle holds.)

Looks like something that requires some campaigning.

Would you be able to post the list? (Making sure your and surgery/doctor names are not legible.)

Gsd2011 profile image
Gsd2011 in reply to helvella

Hi There ,Yes I will try post it on here I take a shot of the list

Gsd2011 profile image
Gsd2011 in reply to helvella

Hope you can see it okay

Is it okay
helvella profile image
helvellaAdministrator in reply to Gsd2011

Absolutely fine, thank you.

Are you in England?

Gsd2011 profile image
Gsd2011 in reply to helvella

Yes iam

helvella profile image
helvellaAdministrator in reply to Gsd2011

Am adding the text of that letter as text so it is easier to read and to copy for use elsewhere (such as in letters or emails):

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...

No reason given? The cynic in me is shouting "make them go private"...

helvella profile image
helvellaAdministrator

Why would there need to be a specific list if it were simply medications prescribed by private practitioners?

In that case, wouldn't it apply to all medications not just this subset?

helvella profile image
helvellaAdministrator

I don't agree- though some are expensive others are very inexpensive:

Atomoxetine About £48 for 28 capsules

Azathioprine About £2.14 for 28 or £3.10 for 56

Cyclosporin About £18.25 for 60 capsules

Denosumab About £183 for one pre-filled 60 mg syringe – but only needed every four weeks to six months.

Dexamphetamine About £24.73 for 28 tablets.

Gold injections No pricing in BNF

Leflunomide About £4.79 for 30 tablets

Lisdexamfetamine About £54.62 for 28 capsules.

Lithium About £7.50 for 100 modified release tablets.

Methotrexate About £2.47 for 28 tablets.

Methylphenidate About £3.03 for 30 tablets.

Mycophenolate About £6.87 for 50 tablets.

Mercaptopurine About £49.25 for 25 tablets.

Sulfasalazine About £6.74 for 100 tablets.

Tacrolimus About £44.33 for 30 750 microgram tablets.

Warfarin About £1.56 for 28 tablets.

Exactly the same thing is happening / has happened in Dentistry, it is nigh on impossible to get an NHS dentist in many parts of the UK, my sister lives in Wales and she makes an 8 hour round trip back to her old dentist because there are no NHS dentists taking patients on anywhere close to where she lives.I have had a problem with a tooth that needs a root canal filling, my NHS dentist refuses point blank to look at it on the NHS , she would of course treat me if I went to see her privately .

I have sought out an alternative private dentist .What really bugs me is that I have regularly seen an NHS dentist for my entire life, and now when I need treatment I am being denied it, surely if it was because of covid they wouldn't be able to do private work either. I have never known the situation to be so parlous. It is virtually impossible to get an appointment and very often when you do get an appointment they cancel the day before you are due to go putting back any check up for another 6 months.

Another example of privatisation of NHS services , absolutely.

So if my NHS consultant at the hospital started prescribing my T3 meds back again my Gp isnt going to provide it or the monitoring like he used to.. well I rang that number on the list to enquire and they said it's been taken off their list with a few others but my surgery says it hasnt and wont prescribe anything on the list

7 year waiting list for a dentist here in West Wales....unless you pay of course. I have paid - 47 years of stamps!

knitwitty profile image
knitwitty in reply to serenfach

It's a complete scandal, yet another one to add to the list !! :(

You may also like...