Thyroid UK
84,148 members99,126 posts

All Hypothyroid and Hashimoto's patients everywhere - RE Liothyronine/T3: Has the question been answered?

theyworkforyou.com/wrans/?i...

John Woodcock, Labour/Co-operative Barrow in Furness asked this question -

To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the (a) affordability and (b) NHS procurement options for Liothyronine T3.

Please follow the link to see the response and see if you think it answers the question John asked. Respond at the end please.

28 Replies
oldestnewest

Hmmm I’d go with no!! Arrived to this party late. Can’t get my head round why nhs is tied in to buying from the companies when it’s so much cheaper on the continent.

7 likes
Reply

P Poor management!! Or possibly corrupt?

2 likes
Reply

With due respect ..... What a load of B.....ks Why can't they just simply comprehend that there is a percentage of the population whose body cannot convert the dreaded T4 into the usable thyroid hormone T3. I lost my house and am now destitute whilst GPs and endocrinologists were unable to get it into their thick skulls. Dr P learnt about non-conversion of T3 from very old medical papers and books & put it into practice. He didn't even need to do a blood test; he checked reflexes, blood pressure sitting down then standing up. Simples. Rant over

16 likes
Reply

What's more it is a 'large' proportion of people that need more than T4 not least because people have had appalling treatment all along and most left untreated and unrecognised for years before they are given useless T4.

4 likes
Reply

Agree - I wonder how much further irreparable damaged was done when I was left for 10 years without any treatment - when antibodies were positive and there were many signs. Like so many other people. Maybe I wouldn't need T3 now?

4 likes
Reply

You are right. The long term neglect leads to most of us being so poorly that we need much more than t4. It was fourteen years worth of out of range thyroid tests for me, two diagnosis of Hypothyroidism and three bad Endo appts. The last one advised I stop my adrenal support and thyroid support as he didn't like my TSH! But he offered nothing except to be referred back to the care of GP which means no care!

1 like
Reply

As usual the response is more to do with keeping his job than the health of the nation.

9 likes
Reply

Agree with Marz, now we have the scandal of how a cohort of hundreds of thousands of women have been missed for breast scans.What were all the staff doing who to not notice an age cohort was absent!

8 likes
Reply

My cynical mind is asking was it a cost cutting exercise, in which they have now been caught out? How...by people dying! Oh yeh ... that reminds me of something.

7 likes
Reply

What makes me laugh is the fact that they're all blaming a computer hitch... well, doh!!! A computer is only as good as the human who programmed it in the first place!

7 likes
Reply

Doesn't matter what excuse, it was incompetence from the top!

5 likes
Reply

I fail to understand why there seems to be such a poor understanding of Thyroid illness in UK medical profession. The NHS has got a lot better at treating some serious medical conditions (heart/cancer), probably because of set government targets, but comes up short in treatment of other conditions. In the case of the thyroid it seems keep it simple and cheap, basic blood test and cheapest medication, unfortunately this doesn’t work for all sufferers and fails to address the major impact that inadequate treatment can have on ones wellbeing and quality of life. I wouldn’t be surprised if inadequate treatment ended up costing the NHS more in the long term because other medical conditions developing due to ineffective thyroid treatment. As for why NHS is ripped off for liothyrine, it just doesn’t make any sense, surely it could be sourced from a cheaper cost effective supply if the will was there to do it, begs the question why !!

9 likes
Reply

There is no logical explanation. The cost has to be down to poor decision making -poor management or the only other explanation is corruption, surely? The current excuse for not implementing the cost bill amendment from last year, is, from my understanding, to do with the fact that Concordia is still under investigation? Why how this stops the bill being acted on is beyond me - again - some fool making a decision without seeing the bigger picture!

Also questionable is why have Concordia built new plant in the last few years, which they have confirmed in writing, will produce T4 and T3 whilst pricing T3 off the market. My mind can only come up with the new plant being for something other than T4 and T3 as we know it - perhaps a new 'combi pill'? They are perhaps doing to L-T3 what they did to NDT back in teh 1960's - demonising it to push it completely off the market in push to saturate market with the, then, new synthetic L-T4. They did not want the benefits of T3 known then and they do not want them known now - hence no records have been kept. Bear in mind that it was about the time of the introduction of L-T4 that Gross and Pitt Rivers discovered T3? Ooops! That must have put a spanner in the works of the L-T4 developers and investors!

As for understanding. The question has to be asked why training in this area is so poor. For the reasons above - they don't want the benefits of T3 known. They know it is vital, that is why they have to keep it in Secondary care at least. But why do they no longer test T3 levels when they know that it the T3 levels are the vital ones? If they don't test, they can't know, therefore can justify not treating.

The easiest way of denying it is to deny it in training of the so called 'specialist' GP's etc. And it protects them too - if it not in the training how can they be expected to know about it and treat it. It also serves to make Gp's and the so called specialist, who tend to be diabetes trained, nervous and unwilling to issue. Job done!

Patient left ill.

But who cares, all the boxes were ticked so no one to blame!

They already know that low T3 is linked to heart disease, diabetes and mental health and I'm pretty sure I've read it leads to strokes too. Yet does the thyroid link get mentioned anywhere, rarely if at all.

As T3 is vital to every cell it makes sense that if not sufficient it will lead to any number of conditions and health problems.

Perhaps they are worried that if they treat low T3 they might put big pharma out of business...and would we need all these 'specialist'??

13 likes
Reply

Which is precisely why we come here to educate ourselves and end up going down the road of self-management of our thyroid condition🤔 I visit the utterly useless 'endo' that replaced my much older, sadly now retired, endo (who was farsighted enough to prescribe T3 to me in the first place after 7 years of pointlessly increasing doses of T4) just to get his rubber stamp on my continuing T3 prescription (he's in England and my GP practice which pays for it is in Wales). He hasn't a clue about my bloodtests, asks me if I'm doing ok and then dismisses me with my T3 prescription intact for another year.👍 This year, however, Stoopy McStoopid has actually ordered me a diabetic treatment monitoring bloodtest🙄 (I'm not, nor have I ever been diabetic and given the amount of sweet stuff I have I should be in a hyperglycemic coma most of the time!) I shall go along with it and make sure that I also have a Medichecks test at the same time, for my own benefit, obviously 😇 but I may just show him!🤣

6 likes
Reply

Ive had the diabetic tests along the way...bet most of us have must really annoy them when they come back clear!

4 likes
Reply

I feel that it is deliberate ploy to supply only T4 because thousands of patients will be made very ill, put on further drugs. For example when the thyroid is struggling, the cholesterol level goes up. When it reaches a certain number, patients are automatically advised to take statins. Show me the genuine trials that were done that prove that high cholesterol is bad. There are none. We have all been conned. Please read The Dark Side of Statins. It is all in there . . . . Then we have the bonuses that are given for getting patients on anti depressants. These damage the thyroid further. They block iodine and some essential vitamins. As the body deteriorates, it is prone to persistent infections. Anti biotics are then given. These then kill off the friendly bacteria in the gut. The patient then cannot absorb vitamins because of gut problems (which are denied by Drs), they become deficient in essential vitamins, (Drs do not know much about vitamins and are very reluctant to test preferring to say the patient obsesses about their health) blood sugars drop, adrenals are affected and the patient will fall into a hypoglycaemic coma. Some of us go this way. Yes, I am angry, they let it happen to me.

2 likes
Reply

Only a major change in treatment approach by NHS /government is going to sort this mess out, but I can’t see it happening in my lifetime, in fact if anything things have got worse since I was first diagnosed with hypothyroid around 38 years ago, even GP referral request to see endocrinologist in our region gets rejected for hypothyroidism and as endo is the only one that can prescribe T3 I have zero chance of getting it, we can’t even get a blood test for T3 so it’s obvious the NHS/government has pretty much phased out prescribing T3. As I have posted before I went 2 years undiagnosed in early 30’s, just about on my last legs when finally got diagnosed and I feel it played a role in subsequent coronary artery disease, torn tendons in both shoulders and tendon problems in both hands, all requiring multiple surgeries. I was not overweight, no family history, no high blood pressure, no high cholesterol, in fact doctors had no explanation of what had caused it.

1 like
Reply

Low t3 is known to cause heart problems amongst others - and I only realise this last 15 months, or so that the problems in shoulders - torn tendons etc are all part of the symptoms. I've had problems with shoulders -spent a fortune on osteo's and acupuncture etc trying to sort it. Luckily nothing 'torn' that I know about.

I do have things still going on with me- maybe I need higher does of t3 - they keep dropping it down, but I think because it goes haywire, as do other levels, when have a flare of something that no one seems to know what it is.

But T3 is massively more beneficial. Mind you as T4 had no benefit ever - not a hard marker to beat!

1 like
Reply

You will get not argument from me on this! There is £ in illness.

Reply

You are much better informed than I am, I am fairly new to this forum and learning a lot. I used to blindly believe what doctors told me but never understood why some treatments made me worse not better. As for liothyrine one has to be suspicious of possible corruption, nothing else makes any sense.

5 likes
Reply

I was new to to this forum just over a year ago....I think we have all put too much faith in our GP's but that is because back in the day many GP's actually had better training and to be fair, they probably had more time to keep up.

There is a lot to learn, but worth having some knowledge and having some ammunition when you go to appointments so as to not be fobbed off.

1 like
Reply

No worry's about hijacking but see what advice you get, if not getting much might be worth copying it to a separate post. Just so it gets seen. good luck. Mu husband constantly says legal the only way to go!

3 likes
Reply

And bear in mind finding a decent civilised judge who knows about thyroid health may be somewhat difficult! His/her hands will be tired by the same old grot that the BTA/RCP spout. It is getting someone to realise that there is too much inconclusive material out there - so no one can say this is better than that. And then override the so called 'evidence' and call for new trials or at least to keep the medication as an option and allow patients to try.

2 likes
Reply

Also we have to bear in mind that many of those in power will have vested interest in certain drugs, they will not be objective!

2 likes
Reply

Undoubtedly. Probably what is driving the whole situation - my personal theory - copy catting the destruction of the reputation of NDT from 1960's to encourage the prescribing of T4 only. Bearing in mind this was not long after the discovery of T3 so God forbid people find out they need T3!! So promote the idea that T4 is all that is needed because it converts. And push any T3 containing product off the market. Today - same thing - Demonising T3, determination to have it removed from prescription - which they just about have. Maybe there is a new medication due out - say a combi pill - developed by the main players who have been deciding our treatment for the last decade or two???

A few years ago there was a combi pill which was pitched but rejected. What happened to this development? I'm pretty sure it did not get dropped - too much money already invested. The guy behind this was Weetman's sidekick in Sheffield.

And someone did mention a few months ago that BTF were involved with sitting on a review panel for a new combi pill - not hearing anything since - maybe a slip?

Also bearing in mind that Concordia, whilst pricing L-T3 off the market, have been building new plant that they themselves say T4 and T3 will come off, why would they do that? Maybe T4 and T3 are coming off this plant maybe not separately? What else makes sense?

Why has the investigation into Concordia not been completed? Why is it still being dragged out? I suspect it is about timing. Stalling.

Time will tell.

1 like
Reply

Marigold has deleted her reply to UrsaP in this post. Marigold has written a new Post entitled Suing the NHS

healthunlocked.com/thyroidu...

Reply

You could have left it marigold22 might have picked up a few responses for you. But hopefully people will check your link above.

Reply

Thanks, but responses were 'overlapping'.

1 like
Reply

You may also like...