Well that was very disappointing.
Has the cost of t3 gone up from £200 to £250? Is that all?
It smacked as being somewhat biased against our case? Or is that just me?
One Show: Well that was very disappointing. Has... - Thyroid UK
One Show
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UrsaP
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•
No, I agree. I think the reporter could have done a better job with it. I don't think it stressed quite how important t3 is to people and how debilitated people are without it.
What Concordia had to say was a bit of a joke also. Let's hope the government can get to the bottom of it after this bill.
I felt they mentioned other drugs more than T3 and seem to wash over it. No mention of the most debilitating symptoms and such.... Felt like that would almost work against us -
And this idea that the NHS or whoever can go to company and ask for breakdown, not sure how this will help with companied who are unscrupulous enough to hike prices in the first place, I'm sure they can find a way to justify it on paper!!
There are other two T3s which can be prescribed on a named-patient basis but doctors rarely prescribe as they have to take the consequences if we have a reaction. We are more likely having reactions with insufficient never mind too much.
Also, it would appear that it was only the woman who knew really how disabling the symptoms are when she's been denied T3.
I thought it was quite positive. The presenter got it wrong but the point about how important T3 is and the price hikes generally were all well made.
Thank you Lyn and everyone who contacted The One Show.
RedAppleAdministrator
I thought they said the rise from £200 to £250 was since Concordia took over. They did mention that the price was £11 something a few years back.
Ah Thanks RedApple . I must have missed that bit. Does the figure they gave sound right?
Sorry don't want to be negative about it, as Kitti1 says any airtime has to be good. I think I was just a bit disappointed it wasn't a bit more 'in depth' Was limited airtime....
I was actually impressed it got as much time as it did. I feared a passing mention amounting to a few seconds!
Yes, it really is an astounding price hike. If we could get hold of the BNF price list from about ten years ago, I think we'd see something like eleven pounds for 28 tabs.
I think you're right. Even then when T4 was around a £1 they would still not want to prescribe T3 being more 'expensive'.
I only saw the end. Did they say that it was the most important thyroid hormone replacement especially if people couldn't convert T4. or that they remained unwell on T4.
Shaws, I've forgotten most of the details already (brain fog day 
)
Am hoping it will be on iPlayer later so we can watch again.
They did mention that some people 15% or something couldn't take T4.
That's good. How long were these people unwell on levo and do they still get a prescription. Not the woman on the TV, they've stopped hers.
Don't think it was that in depth. In my case 20 years unwell on T4 - 7yrs now on T3, massive difference. NO side effects! If that is what you mean?
T3 still prescribed 50mcg per day - dropped from 60 last year, but think adrenals were affecting uptake, hence slightly high t3 reading...due bloods next week.
That was the bit I felt a bit let down by. I don't think they emphasised the devastating effect being without it can have on peoples lives
I think only people who have actually had/have first-hand experience (or a spouse or family) can know how it affects us. Levo works for many and also others remain unwell as that is all that is prescribed. Maybe don't have internet access either so they spend years and years very under par.
• in reply toshaws
I agree whole heartedly with you Shaws.When I was under medicated for years on T4 it ruined my life.I lost all confidence and my social life became non existent.
I have been prescribed T3 since 2014 and I would not be surviving without it at the moment,because life has become very demanding on my energy. My days are governed by medical appointments in order to support my sick husband .......one long round of hospital trips,blood tests,warfarin INR checks, dressings with nurses at leg club etc.......He is so grateful for all the help he gets bless him and I am so very thankful for my T3.
Kitti1• in reply to
Hidden sounds like your up against it. If you have anytime please message the one show and tell them how important this issue was for you and how you couldn't cope without t3. It would be great if lots & lots of people contacted them so they would realise what a big issue this is. And hopefully get further coverage from it 👍
• in reply toKitti1
Thanks so much for your reply Kitti1.Yes,life is a tough at the moment ,but all we can do is just keep going. I don't feel able to get further involved just yet as I am on " automatic pilot" at the moment.However,if anyone wishes to use my post to highlight the importance of T3 for hypothyroid sufferers who need it,they are welcome to use it.When watching the One Show report I must admit that I had a feeling that it might only mean something to the already converted members of our Thyroid UK who saw it.I find that when I mention the word thyroid to others,they look at me with a blank expression.I think it floats over most people unless they are fellow sufferers.
I updated our GP yesterday on how things currently are with my husband.Not once did he ask how I was coping!!!
UrsaP• in reply to
Hidden I think you have a point re the only meaning something to the converted. And maybe those who know us and know what we are.have had to go through. We need a more serious in depth report....
I hope your situation and health improves soon.
I am with you on T3 - and that they have no idea what it's like when your whole body is malfunctioning and it is indescribable. I wish your husban well and it is amazing how T3 gives you the strength/energy.
• in reply toshaws
Thank you Shaws ....you are most kind......just grabbing a bite to eat after doing the food shop for the weekend and then off to see him.As you say,we know how it feels but we just have to keep going. I will convey your good wishes to him x
I bet helvella has a spread sheet somewhere showing the full extent of the price gouging... 
He'll respond in a minute, I am sure.
Actually, I don't have the figures!
I know, from memory, that it went something like 12, 50, 100, 150, 200, 250, 280. But I don't have the accurate figures for each year.
If anyone does have accurate figures for the last twelve years - please let me know! Spreadsheet ready and waiting.
Year
2005
2006
2007
2008
2009
2010
2011
2012
2013
2014
2015
2016
2017
Excerpt for one charge
in the 2015/2016 year, there were 77,200 liothyronine sodium prescription items dispensed, comprising tablets, capsules and liquid specials (?), which prescriptions were written and dispensed in England (only). The net ingredient cost for these dispensed items, that is, the basic price of medicines, not taking account of discounts, dispensing costs, fees or prescription charge income, was £25,165,323."
By my calculation, this equates to £326 per prescription, which is scandalous in the extreme.:
Trouble is, those figures will include various oddities such as the USA 5 and 25 microgram tablets, Thybon, Sanofi, "specials" from UK companies, etc.
It certainly gives an indication but we could really do with the Goldshield/Mercury Pharma/Concordia figures to make the best case.
shaws helvella Just looking at the figures you posted Shaws, Am I right in thinking that the amount prescribed at one time would not affect the figure you posted?
I put the quote mark in the wrong place and now I cannot find the link: This is another and I was on holiday last year when this was published:
I know, from memory, that it went something like 12, 50, 100, 150, 200, 250, 280.
Dude you are the maaaan xx
No price but a link going back to 2016
According to british-thyroid-association...
2009 - £20.00
2010 - £26.15
2011 - £43.323
2012 - £52.46
2013 - £52.46
2014 - £102.30
2015 - £152.18
2016 - £258.20
I suppose that's the the nature of a magazine programme such as that. Perhaps if we all get messaging and saying how we feel about the whole issue and praising their coverage. We could get some further coverage, on a medically focused programme or possibly even a separate programme, a full half hour or so just covering ALL the issues regarding thyroid treatment or the lack of.
( Flipping cat move you bum I'm trying to type ! 🐈 )
I have dogs that do that! Decide to sit on me just as I'm typing...
ITV - Tonight, This Morning, Loose Women....who knows...
Is your cat hyperactive 
😂 Hyperthyroid perhaps ! Just a fuss pot that loves attention
UrsaP Rapunzel Kitti1 helvella RedApple This is an excerpt I've just read:
C. Since this initial study, there have been a further seven rigorously
conducted (“randomised, double blind, placebo controlled”) studies,
encompassing more than 900 hypothyroid patients (summarised in refs. 3 & 4). None of the subsequent studies showed a beneficial effect of combined T4/T3 therapy on measures of wellbeing, health and mental functioning.
Three of the seven studies show harmful or undesirable effects of the T4/T3 combination. D. In three of the subsequent studies of combination treatment, the patients were asked which treatment they preferred, and in two of these 3 studies more patients preferred the combination T4/T3 therapy. There is no obvious explanation for these observations, and it may or may not be a reproducible effect.
E. The BTA keeps an open mind about whether using an appropriate
formulation of T4/T3 combination tablet would, in the future, provide health and quality of life benefits in the treatment of hypothyroidism for a subgroup of patients. However, based on the current evidence from rigorous studies of large numbers of patients using the currently available formulations of synthetic thyroid hormones, combined T4/T3 cannot be recommended "
Diogenes and his team and others have not found this.
Words fail me. Harmful ? How can they say they were harmful. Unless they introduced a high dose too quickly or they've studied patients over many many years to prove osteoporosis or heart arrhythmia. Which I doubt. Heloise posted a link to a study yesterday that ( I won't say proved ) indicated that a patient is more likely to develope heart problems in later life because of inadequate levels of t3. I copied the link and posted it at the bottom of the grassroots campaign thread. Sorry I can't do links on my tablet. Well worth looking at.
Thanks Heloise
I don't know who their guinea pigs are when they do these trials. I wouldn't like to be one of them. The are truly ignorant.
You're welcome, Kitti. I hope it proves useful although I have doubts it will change anything in the status quo. Years ago I kept bringing up a class action suit for malpractice but I'm in the U.S. The NHS probably has lawyers, too. Medicare here is probably similar to the NHS there. They determine your choices.
Hey kitti1 I think as Heloise says a class action is the only way that our voices are heard ,Thyroid uk may be wants to looking into crowd funding a medical Lawers to represent all the patients,every body who is suffering and having their lives cut short as you say because of ignorance in the use of t4 and t3 and the huge effects it has on the body.everybody can write a personal testimonials ,I do belive that only leaning on the government with threats of personal payouts will make them sit up and listen. I know I am getting older and there is no way my body can cope with the havock that t4 alone does being constantly over medicated with t4 and under medicated with t3.
Big love. sweetart
It does annoy me how many studies say something along those lines: The patients all preferred x treatment/had improved quality of life indicators, but nobody knows why, it's a complete and total mystery in every way!
But those patients were in your bloody study! Just make it part of the research question to get to the bottom of why they preferred to be on a particular treatment!
shawsAdministrator
It used to be quite low I believe. Then it was increased to about £30 a months, suddenly shot up to £300+. It has been increased each time the company was bought over. People make profits from medication when the price is hiked and NHS has to pay. They, surely, must have an overseer on medications/prices.
Someone will confirm my figures.
Thanks shaws Interesting that company said no contact from NHS re price??
Yeah forgot that bit. Very strange.
I don't think it is that strange Kitti1 you probably already know my thoughts and 'conspiracy' theory on that!
I hope they are all shaking in their shoes particularly those that gave the command as it was a perfect excuse to ban it and have a nice little clause that stated 'if for clinical need' just to cover themselves.
I think it is about time that Pharma Companies stopped paying 'gratuities' in kind for doctors to promote their products.
Maybe we have to keep the momentum going at present and add NDT into the mix, particularly as False Statements have also been made about that and many women do well on it. Lyn Mynott and Lorraine Cleaver for instance..
Definitely we are going to try and get it featured on this morning or loose women. The more people that email them with their stories and their concerns the better. More chance of it getting aired
It is not only in the UK is it difficult to get but I think the whole of Europe maybe even in the world as the promotion of T4 is excellent probably though incentives to doctors.
shaws At least with this president of the ATA coming on board, might, just might, put a chink in the armour? And it does look like we are up against it....faint heart and all that....
mmm not sure as ATA has the same outlook.
Our BTA follows and copies ATA guidelines Levothyroxine alone. As far as I know, worldwide is levo.
Stopthethyroidmadness and Hypothyroidmum have been harping on for years about the options and Dr Lowe said that it was corruption which was the root cause of levo only being No.1.
shaws 'if for clinical need' A good get out clause - if they don't look....And lets face it they don't look. I think you are right about keeping the momentum going, and adding NDT - it is about getting the treatment we all need, what ever that is - see DofH webpage statement.
Yes, whatever we need. I think they believe it is 'fashionable' to want other than levo - some are immovable in their outlook but research by more than one Resarch Company has shown than T4/T3 is better than levo only.
NDT, being made from animals glands, are more compatible to many people than synthetic. So you are right whatever makes us well.
Yes Shaws, I remember seeing a video linked here possibly years ago. It was a professor lecturing medics about thyroid treatment. She described patients coming back after seeing Harley Street doctors, persuaded they need T3, suppressed TSHs, and all sorts of fancy things!
It was horrible to see how easily she could dismiss it.
Is there some rule which says that the NHS has to buy in the UK. If not why are they not doing what any wise customer does and shopping around.?
It suits the authorities down to the ground. They don't want us to take/add T3 to T4 or T3 only. So the crisis of price doesn't bother them one bit as it has given them the 'perfet' excuse to stop prescribing T3.
They did exactly the same with NDT which was regularly prescribed in this country as Big Pharma 'sweetened' the Organisations in order to make levo No.1 insted of NDT. Despite the fact that many patients were/are still are unwell.
NDT has been in use in different forms since 1892 up until the 80's. Dr Peatfield resigned his licence due to the stress of being persecuted by the authorities, other doctors lost their licences, so doctors had to 'toe the line' and they all now believe that levo only has to be prescribed. They tell the complaining patients that they are 'normal' because the TSH tells them whilst ignoring patients' remaining symptoms.
At least we got some airtime, every little helps. Also I noticed that amongst the list if other drugs that has a price hike was carbimazole and I've noticed in a couple of posts just lately that people have been taken off carbimazole rather quickly or had their dose decreased and I'm wondering is it because of the cost, just a thought!! Any one else noticed this?
A good thought. I wonder who is the supplier of carbizamole?
Yes that's a thought, wonder if it's the same pharma company that owns the t3.
Amdipharma according to MHRA - from the Patient Information Leaflet:
"6) Content of the pack and other information
What Carbimazole contains:
The active substance is carbimazole. Each tablet contains 5mg carbimazole.
The other ingredients are sucrose, lactose monohydrate, acacia, talc, maize starch, magnesium stearate, gelatin and red iron oxide (E172).
What Carbimazole looks like and content of the pack
Carbimazole 5mg tablets are pink, round, biconvex, uncoated tablets with Neo 5 stamped on one side and plain on the other.
Carbimazole 5mg is available in plastic bottles of 100 tablets.
PL 10383/2065 Carbimazole 5mg Tablets /
NeoMercazole 5mg Tablets
Who makes and repackages your medicine
Your medicine is manufactured by Amdipharma Plc., Regency House, Miles GrayRoad, Basildon, Essex, SS14 3AF, UK or Cenexi SAS, 52 rue Marcel et Jacques Gaucher, 94120 Fontenay-sous-Bois, France. Procured from within the EU and repackaged by Product Licence Holder: Primecrown Ltd, 4/5 Northolt Trading Estate, Belvue Road, Northolt, Middlesex, UB5 5QS.
Leaflet date: 08.05.2013
NeoMercazike® is a registered trademark of Amdipharm AG, Basle,
Thanks seaside Susie, so looks like more than one pharma companie is into price hiking. I never realised how many nastie filler's there are in. carbimazole, and I was on and off it for 12yrs, no wonder some people have problems taking it.
I just googled and discovered that Concordia acquired Amdipharma (AMCo) in October 2015, so it's the same people.
Surely something has to be done to stop this company from ripping the NHS off and us as ultimately it's our hard earned money that pays for the NHS.
By the same token, the NHS has to take some responsibility for accepting the horrendous price rises. Someone is in charge of sourcing medication and negotiating prices.
Very true, these people ought to be named and shamed, they shouldn't be allowed to get away with it. The whole system stinks of corruption.
"The whole system stinks of corruption."
I completely agree. Government, all political parties, NHS, the list is probably very long. I don't trust or believe any of them any more.
The Competition and Markets Authority is looking at it .Complain to them but don' t hold your breath.
That's about the fourth of fifth 'name'. I think it was goldshield, then mercury pharma, then amdipharm and now concordia? It's a case of 'a new broom sweeps up more cash'.
In two minds... Any airtime is good, but even if T3 is taken off the endangered species list - and we all hope it will be - it's unlikely to be any cheaper, new laws or not. And I can't help thinking that the blasted drug company shouldn't be allowed to get away with it.
Here Here steviecat
I've just put up a new thread re emailing to get more coverage ect. If you have a little time to pop out a couple of emails that would be great 👍
There's no watchdog and lies are told that only levo is the one and only, after all it's about £1.50 p.m. but it doesn't take into consideration people unable to work, money spent on 'extras' for the symptoms instead of giving them NDT or T3 added to T4. So these people may well have more than one prescription.
The doctors who make the guidelines aren't held to account and I bet none have every had undertreated/undiagnosed thyroid conditions and as it is a whole body experience no-one can ever understand particularly if patient keeps complaining. 'Why most must think, even people close to them, are they still moaning they've been diagnosed and are taking medication. Doctor says TSH is normal.
Dr Lowe sent an article to the BTA and RCoP about the False Statements made about NDT and he sent a Rebuttal to them (Dr. L was also a scientist/researcher) and despite three yearly reminders before his death they never, ever, responded.
These associations condemn many to a life of ill-health and developing more serious problems, the problems they state might happen if we take T3 or NDT.
Many people may not have access to internet either.
Just checked it is on I player for anyone who missed it.
Indeed I did feel disappointed too. Could hardly see the point... It will not achieve anything. People by now will have forgotten about this. Bye bye T3.... what next?
JGBH we fight to keep it in the media and have it properly publicised and reported on. But we all need to be strong and stand and work together on this. If we give up, we will most definitely have to live with the consequences...and I, personally don't want to go back there, 30years + was enough!
We have to keep badgering all and sundry till they get so fed up with us they stop and listen! Follow all groups and campaigns we can.
A few years ago there was a lady called Suze who was on this morning with Dr Steele and it was discussing thyroid meds. I can't really remember much about it though.
Jo xx
Just over a year ago when that shirt video was produced showing alternative treatments I sent it to my GP. didn't hear from him
For ages but then got a reply thanking me and saying he had passed it on to Jeremy Hunt reply received saying I should sure know the recommended treatment as from the British Thyroid Association! That was it! I was too tired and disgusted to even reply!
Not surprising at all.... we're fighting a concrete wall. "They" always think they know best.... even though most of them haven't got a clue of what misery patients live through. Sorry but it needs to be said.
I think t3 was 50 then went up to 250 !
Don't bother with Dr Sarah Jarvis heard her make a comment on Jeremy Vine show about underactive thyroid just keep on taking little white tablets you will be fine. Shows how little she knows !!
spoonking This is exactly the attitude we have to fight to eradicate. Some Dr!!! We need a Dr who suffers with HypoT who is willing to stand up and be counted. It is so easy for these people who have never suffered with it to make out we are just winging hypochondriacs. This is also why we need a register somewhere of people who are on t3 - officially or not, who are benefiting cross referenced with all those like myself who did not get on with T4. To show clearer figures rather than the false NHS figures that do not include the numbers who have/had adverse effects of T4 ignored, and those who are undiagnosed/diagnosed but un or substandard treated (self Medicating) The invisible figures that the NHS choose to ignore. To say nothing for the poor devils coming up - who are yet to even realise that they have a real condition and are less likely to have any hope of optimal treatment.
Talk about kicking people when they are down!
Might just - thanks Hidden
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