The number of NHS prescriptions for a life-changing thyroid drug has fallen by about 40 per cent after a pharmaceutical company put the price of a tablet up from 16p to £9.22 — a rise of 5,663 per cent.
Thousands of patients have been denied liothyronine because healthcare commissioners will not pay for it.
Peter Taylor, a Cardiff University endocrinologist, called for urgent measures to tackle its cost. The research, published in The Lancet, analysed prescribing data in England over five years and found that a 40 per cent fall in doctors prescribing the drug was “largely driven by cost” as there was no new medical evidence or change in guidelines.
The research found differences in the rate of prescriptions in different areas and a link to deprivation. “It’s people from poorer parts who are getting it least,” Dr Taylor said, adding that they “describe their lives as being ruined. They’re not able to function properly. They’re not able to go to work, they’re not able to live their lives properly.”
The NHS has not imposed any national restrictions on prescribing the drug, which is used by about 13,000 people with an underactive thyroid who have not responded to the primary treatment, levothyroxine. However, many health commissioners have told doctors to reduce or stop prescriptions because of the cost.
Krishna Chatterjee, president of the British Thyroid Association, was concerned “individual GPs are making an independent off-the-cuff decision” to deprive patients of the drug. “One might be tempted to conclude that this hits the most deprived area hardest because they have the least resources to meet this excessive cost and are therefore rationing it most severely,” Professor Chatterjee said.
Until recently the sole UK supplier of liothyronine was Concordia International, now called Advanz Pharma. There are now two others but the price has fallen only slightly and costs the NHS £8.55 a tablet.
The Competition and Markets Authority is investigating the pricing of the drug, and last year accused Concordia of breaching competition law by charging excessive prices. However, it has not given a final ruling. The Department of Health has the power to impose lower prices for medicines if it believes taxpayers are being overcharged but has not yet used it.
The powers were granted by legislation passed last year in response to a Timesinvestigation that showed that drug companies were exploiting a loophole that enabled them to impose big increases in the price of old medicines.
Lorraine Williams, director of the Thyroid Trust, said that local clinical commissioning groups were “taking patients who are well and stable and receiving benefit from liothyronine and in some cases making them very unwell” by making them switch to cheaper drugs. She said that patients who had been taking liothyronine “had got their lives back”.
She said that some patients were buying the drug online or in Europe where it is much cheaper.
The Department for Health and NHS England declined to comment.
Advanz Pharma, said that earlier price increases were made in agreement with the Department of Health.
Jan Walker, a mother of three from Devon, says that doctors would effectively be giving her a death sentence if they stopped her prescription of 50 micrograms of liothyronine a day. Ms Walker, 57, takes it because her thyroid has stopped working.
A large increase in the price of the drug means it costs the NHS more than £600 a month, and health commissioners in Devon have set a new limit of 10 micrograms a day. But she says that this would be “nowhere near enough”.
She said that the alternative, levothyroxine, left her bedridden, struggling to breathe, depressed and “within seven months I put on about 3½ stone”. She then tried liothyronine and has been on it ever since. “My skin, my hair, everything started to improve,” she said, but then her doctor said that because of the rising cost it would have to stop. The consequences could be fatal as she cannot afford to buy it privately.
Ms Walker, a part-time artist, was first diagnosed with thyroid problems over seven years ago. This summer she was contacted by her doctor and told that new guidelines from the local Clinical Commissioning Group meant that she had to move back to T3. She described the meeting as “distressing”.
“We discussed it as a family. The family’s main concern is if we can sustain it for a while, what if we get to a month where we can’t afford to get it,” she said.
“If it’s all down to money and you’re having to source your own drugs to keep yourself alive, this is the most ridiculous situation I’ve ever been in.”
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What I don't understand is why?? Because they have a monopoly on T3??
Only 13,000 use it apparently in the UK so is it a cost production thing? If more of us were on it which I think we should be! And other manufacturers were then more motivated to make it surely it would drive cost down to same as t4?
Or are they just gambling that the small quantity they are selling can command a higher price
Absolutely disgusting that the NHS has not changed its guidelines and the fair competition and dept of health rulings could stop this mess immediately but they decide to continue this farce!
If a type 2 diabetic became insulin dependent because their pancreas had broken down to such a level it could not sustain Metformin or tablets would they force a patient to go back onto tablets ??
My holiday next year is to Turkey. I believe it is one of the few places where t3 can be bought over the counter, I.e. without a prescription. Personally, I will be stocking up.
However we are going through IVF and if I am pregnant I am a little worried to self medicate just yet. Would love to have support of a doctor ! But I heard on here no one would give T3 to a pregnant woman.
So I'll talknto my GP and see what he thinks later.
Thanks for the heads up - I actually feel really well being overmedicated on t4- because it manages to drag up my T3 just enough (!)
That's terrible to ask a patient to settle for that kind of care. It's like saying don't worry about all the side effects you'e suffering from; you're getting relief for your original problem.
I know, they're closing all of the avenues available... likely a bunch of endos still persisting with their sick 'Pet Theories' - 'they' are as likely behind this as any other factor. Careful what you say without it being a PM... and no, I'm not paranoid Nasty forces at work... look what has and is happening to ANY supportive doctor.
Best of, they're a little weaker but STILL T3. Take care and be well xox
Personally, I am convinced the problem is 80% sexist and 20% cost. Many doctors have a dreadful opinion of women in general. They think we lie, seek attention, drug seek, exaggerate how ill we feel and how much pain we are in, worry about our weight and want a quick fix for gaining weight. Anyone who gets fat - and let's face it, fat is still a sexist issue and men get far less grief for being fat than women do - is assumed to be a lazy glutton who could fix themselves if they wanted to. And don't forget that doctors also think that levo helps everyone to lose weight, so if you get fat on it then it must be greed and laziness if you don't.
If hypothyroidism had been an issue which affected men as much as women then the cost issue would have been fixed years ago or would never have arisen in the first place. And doctors would believe patients on the subject of Levo not making them feel better and T3 being required.
I was just laughing at how the stereotypes against women above mentioned apply to myself despite being a man. It occurred to me that my complaining is probably seen as effeminate, where I should instead be a man and tough it up! 😂
Heck, when I had slipped out to my GP that my current Endo’s second opinion is the opposite of the first one’s, that I should be taken off of thyroid medication, he said the two Endos simply had a difference of opinion. Yes, and sometimes that is the difference between life and death!
All that said, I think the problem in the U.K. really comes down to politics, the utter incompetence of the government in regulating big business. After all, it’s not exactly the only sexist country in the world.
Here in Canada my Cytomel is 100% covered as I qualify for a low-income drug coverage plan. Otherwise, it would simply fall under extended coverage plan. Recently I had to pay $45 for two months of 40mcg compounded liothyronine due to shortage of Cytomel. But even that is a joke compared to the costs of T3 in the U.K.
Any who, I apologize for what’s going on there. It turns out the guy responsible for hiking up prices of T3 in the U.K. is a frickin Canadian scumbag.
“They’re just Martin Shkreli dipped in maple syrup and wearing moose antlers,” Attaran says. “It’s a scam, and that’s all it is. Except now, it’s a Canadian scam.”
Yes, there was a terrible anecdote on the forum a while ago from a woman who'd worked in admin for an ME department. The doctors said loads of terrible things behind patient's backs, and one thing she mentioned was deriding male patients for having a women's disease!
Was recently listening to a podcast about the statistics on how white men get dished out painkillers while women and black ppl's pain is ignored and disbelieved
There are just under 2 million people in UK on Levothyroxine. It's estimated that significantly more than that should be on treatment for hypothyroidism (4 million was mentioned in recent debate in Scottish parliament)
By NHS admission, 10% of patients don't do well on just Levothyroxine. (Personally I suspect it's at least 20%, perhaps more)
10% is 200,000, predominantly female patients. It's not a small number.
If it was 200,000 predominantly male patients, far more likely something would be done
It's a small number who are prescribed. Only 13,000 have fought hard enough to get diagnosed. Very often been forced to self fund futher blood testing and often private consultations, in order to actually get prescribed T3. So hardly surprising that areas of deprivation have fewest patients on T3. NHS refuses to test FT3 levels in most cases
Completely agree with humanbean this is a predominantly sexist issue, made worse by recent cost issues
At least two senior endocrinologists are finally suggesting many/most patients may be better with small dose of T3 added
thanks for posting these figures, it's shocking but it doesn't surprise me to read them... part of the depressing picture lies in the assessment of 'being a woman of a certain age' - how can 44 qualify, as referred to in today's Times. As if that's not bad enough, women who present evidence, taking time amassing research, are treated like hormonal infants. The worst catch 22 is using one's initiative, saving hard for private tests - unavailable on the NHS - yet challenged and disbelieved by the NHS, because they were sourced outside the NHS. Current prescribing guidelines demand a spell check. Their system does not support the dignity or integrity of the patient.
I do understand we are woefully under treated and under prescribed but the manufacturer wouldn't see or care about that .... To them they're selling 13,000 in the UK.
Just wondering why they have singled that one medication out. Too small an order? Profit Vs cost of small amount?
I also wonder if the drug company might make more of a profit by lowering the price, making it affordable and more commonly prescribed. I suspect some deep manevolence at work re a lot of thyroid treatment neglect. Do they want us tobe ill so they can make a big profit from the other drugs we can be prescribed for symptoms or worse do they just want us to be ill.
I think we need mulder and scully back to investiagate.
But, vast majority can not be withdrawn from patients without risk of death - for example steroids or epilepsy drugs
Taking liothyronine away just gives a living death... not quite the same as actual death.....but near enough that patients refuse to stop and most give up fight and self medicate
Far higher % on here self medicate or self fund, compared to the few of us that still get NHS prescription
I think the exact details of how that happened is opportunistic.
Emerged out of the NHS's negligence in challenging high prices, and an opportunity in how the drug was defined in the budget sheet. Its a 'lucky' coincidence for them that all this business with doctors being perfectly happy to cut patient's T3 is also ongoing!
I'm in the US and I believe that as liothyronine prescriptions are increasing (maybe due to more patient demand when they learn how necessary T3 is from forums like this) they see the money rolling in by selling more pills at higher prices. My pewscription cost has steadily increased each month since I started taking them.
Interesting.... But I wonder why they wouldn't put t4 prices up in the same way....
Possibly with licensing and generic drug use (no patents etc) they are less able to. More competition with t4 too.
Think we need to lobby a pharmaceutical in the UK to produce it and sell to NHS! Why are they depending on one manufacturer ..... Although getting the NHS to do anything quickly is nigh on impossible. I'm sure there are contractual restrictions on them too.
Good question. Maybe because T4 has been the only game in town for so long and it's too late to turn it into a high profit-margin med. But who knows? Never too late to figure out where the money is.
In the US if the drug companies could find another disease that T4 might help they could remarket it under another name, have Brand only privileges for 17 years and make a killing. It's happened before. Think Prozac (fluoxetine) rebranded after going generic as Sarafen and marketed for women and their special problems with depression.
In the UK, the prime reason for this dire situation is the bumbling incompetence of the Department of Health and their basic functional inability to act in a prompt and efficient manner. There are layers upon layers of management whose only role is to talk, talk and talk without actually achieving anything useful. The fallback attitude of the NHS is "let's not". The status quo is the comfortable default for mediocrities, which is a polite way of describing them. If you can get away with doing nothing, then idle talk is free.
I find it heartening that Dr kattergee has spoken up about this, more than we have previously had from the head of BTA. Gives me some hope.
Thanks D for posting. If there were someway to protest this trend I would. Here in the US liothyronine has been rising for me every month when I refill.
Just saw my endo and T3dose was raised (appropriately). I was undermedicated with T4 only for years after having my thyroid function knocked out with radiation to my neck and felt awful the last few years. Finally in April my cardiologist got me to a good endo. T3 was started and is slowly being raised. For the first time my mental sx are improving so much (brain fog, depression, anxiety,inability to cope,etc) I would buy my liothyronine on the black market if I had to.
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Nasty forces at work... look what has and is happening to ANY supportive doctor.
Recent Pulse article for GPS. 😡
T3 debate House of Lords
