Why is the cost of T3 so high for UK ? - Thyroid UK

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Why is the cost of T3 so high for UK ?

hobbycat profile image
34 Replies

Hi. I've just read Kate Potter's post on the ITT (Improve Thyroid Treatment) Facebook page that has the article from The Mail (03 Jul) and it says in Germany 100 tablets cost £25 but in the UK it’s an astonishing £854.

Why the cost of T3 for the UK is so high - can anyone explain it ? Do all countries buy from different sources ? Is there a monopoly in the UK ? Why isn't the NHS buying from the same source as Germany for example ?

And is there anything our community is doing or can do to help change it ?

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hobbycat
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34 Replies
Justiina profile image
Justiina

I am not a fan of conspiracy theories but I have suggested two scenarios. Either they knew T3 is getting banned and increased the price to milk money (which sounds not so smart) or the price was purposely increased to speed up banning T3. I know sounds like Robin Cook book but hey it has happened IRL.

Over here in Finland endos purposely started to attack against T3/NDT to get more jobs. As long as GP's were treating thyroid issues successfully with combination therapy bad endos didn't have patients. Now they have as endos have stated that only they are allowed to treat thyroid. They also got more funding for their clinics as more patients coming in being poorly on T4.

So anything can be possible.

greygoose profile image
greygoose in reply to Justiina

Does nobody have diabetes in Finland? I thought diabetics were an endos main source of income.

Justiina profile image
Justiina in reply to greygoose

Oh dear diabetes is very popular over here :D And numbers are increasing especially now that they had brilliant idea to cut the coverage of metformin. So those with type 2 who had their diabetes under control on metformin cannot afford it and are forced to use insulin. More patients for endos!!!

Apparently just diabetes didn't get them proper funding and positions in university hospitals. Most GP's are told that they will lose their licence if they prescribe even T4. Which is a lie, can't lose your license for prescribing T4 only , but endos go whining and crying over it so GP's are not sure what they should do.

There are some people who have evidence of this and they are just waiting to get permission to publish it.

It includes

A) pregnant women denied treatment if on T3 or NDT. They have been threatened not to get any treatment unless they go on T4 only.

B) several misdiagnosis of Basedow and unnecessary surgeries. Basedow diagnosed without proper testing.

I have talked with these people who say they have the evidence and I have no reason to doubt it.

greygoose profile image
greygoose in reply to Justiina

Sounds like endos are bullies, everywhere! What is it about endocrinology that attracts such unattractive people!

greygoose profile image
greygoose

Hobbycat, British T3 is made in Britain, German T3 is made in Germany, French in France, Greek in Greece, etc. And T3 from everywhere else in the world is cheaper than the T3 in Britain.

The company that makes T3 in Britain is the only one that has a licence (or whatever) from the NHS. It therefore has a monopoly, and can charge what it likes! No competition.

We're all agreed that it's a scandalous situation, and the result is that T3 is being prescribed less and less. I don't believe there's any conspiracy, it's just greed, pure and simple. A company found a way to make big money, and took advantage of it. They've shoot themselves in the foot, of course, but - hey ho - I'm sure they have other strings to their bow, and it was good while it lasted.

If you want to protest about it, why don't you join ITT on Facebook, sign the petition, and swell the numbers; join in the writing to MPs and all the other activities? :)

jimh111 profile image
jimh111 in reply to greygoose

I think (not sure) UK liothyronine is manufactured in Europe and simply formed into tablets in the UK. There was an interruption in supply a few years ago and the manufacturers stated they had problems obtaining the active ingredient and that it was manufactured 'somewhere in Europe'. You're right in that there's no conspiracy, this company rips off the NHS on a number of other drugs too. The problem is that the endocrinologists couldn't care less, the NHS management couldn't care less and the politicians couldn't care less.

greygoose profile image
greygoose in reply to jimh111

No-one cares, really, unless there's something in it for them! (I do not include you and me in that statement! :D lol)

Probably, the raw ingredient for all the different national brands comes from the same place, but it's the person in the UK that adds fillers and turns it into pills that I was talking about. They're the ones raking in the profits at the expense of sick people! Evil b******s! 😠

helvella profile image
helvellaAdministratorThyroid UK in reply to jimh111

I don't think we have any real evidence as to where the liothyronine ingredient comes from. When the UK shortages were at their worst, I looked around for any indication of a shortage from any other tablet manufacturer. I could not find any other reports.

I ended up wondering whether the sourcing problem was more along the lines of Mercury Pharma failing to place an order, having to pay up front because they had not paid a bill, or something of that type. Even considered they might have left their big pot in garage and then the rain got in. Or used their last stock making a batch which did not pass tests. Not being involved in pharmaceuticals, I have no idea if they can get next day delivery or have to place an order months in advance.

Lintably profile image
Lintably in reply to greygoose

The UK T3 product is a Canadian product. Mercury Pharma is a division of Concordia. The CMA investigation is ongoing. 2 other companies are applying for a UK Licence. You can access other generic products via a Named Patient prescription if your endo will do this.

pharmaphorum.com/news/conco...

marigold22 profile image
marigold22 in reply to Lintably

Two other companies applying for a UK Licence for Liothyronine? I know about Morningside Pharma but not another one. Do you know their name? thanks

JudithW profile image
JudithW in reply to marigold22

Hi Marigold, a little late but it is Teva Limited

Ridings Point, Whistler Dr, Castleford WF10 5HX

in reply to greygoose

I agree with you pure greed it's just one of the deadly sins, my old father used to mention.

hobbycat profile image
hobbycat

Thank you so much for your educating comments. It is my thinking that if the cost was as cheap as it is in other countries then T3 might not be on the NHS consultation list i.e. its a cost issue. Or am I being too simple ?! Is it then actually about the NHS buyers ? And regardless of the item that is being bought - the buyers should care if their counterparts in other countries are buying at a much better price - it's a business transaction isn't it ?!

Then is it about raising this business issue with the NHS buyers ?

Clutter profile image
Clutter in reply to hobbycat

Hobbycat,

The problem lies with the loophole which allowed AmdiPharm and other drug manufacturers to 'debrand' their price controlled medicines and redesignate them as generic medicines where the market was expected to control the price. Where there is no competition the companies have been able to raise their prices by 1,000s percent in some cases. This was such a rich source of revenue that a venture capital firm called Concordia bought over AmdiPharm and several others.

One would have though that NHS as such a large procurer would have been able to prevent this but DoH and NHS apparently sucked it up. In the case of Liothyronine which has risen from £19 for 28 x 20mcg tablets 4 years ago to £258+ today NHS England prefers to withdraw the drug rather than tackle the price gouging.

Please complete the NHS consultation bmj.com/content/358/bmj.j36...

hobbycat profile image
hobbycat

More great info, Clutter, thank you. I get what you say that it's easier for NHS to withdraw T3 rather than tackle the price issue. What I don't get is that there is an alternative i.e. to buy the same product from another country. Do you know what might stop the NHS from buying from abroad?

(ps NHS consultation in progress)

Clutter profile image
Clutter in reply to hobbycat

Hobbycat,

Some GPs do prescribe cheaper European T3 on a named patient basis. All GPs can do this if they want to but they can't be obliged to prescribe unlicensed medications.

Manufacturers of European Liothyronine can apply to MHRA for a licence to distribute in UK but don't. Whether it is onerous to comply with MHRA requirements or expensive to apply for a licence I don't know but the European manufacturers haven't done so.

Airmed profile image
Airmed in reply to Clutter

I wrote to Aventis to ask if they were planning to sell T3 in the UK after giving them a general outline of the current T3 situation here. They said no they weren't.

The cost of a license to sell a drug already on the market in another European country is peanuts. So I ask myself whether there is some market protection or worse going on here. Who knows as it makes absolutely no business sense to me at all that the UK NHS drug buyers are still paying extortionate amounts for Mercury pharma T3. Especially after huge exposé and the fallout from the Billy Kenber Times report.

Clutter profile image
Clutter in reply to Airmed

Airmed,

I've wondered whether there is some sort of cartel preventing them competing against each other. It's disgraceful that NHS England's way of dealing with the price gouging is to withdraw Liothyronine from prescription. I don't understand why they simply didn't advise CCGs and GPs that European brands could be prescribed on a named patient basis.

Airmed profile image
Airmed in reply to Clutter

Clutter, It will all come out in the wash eventually.

hobbycat profile image
hobbycat

Thanks Clutter, that's interesting. And frustrating!

Pamela0106 profile image
Pamela0106

On Levothyroxine? T4 only treatment? Still feel rotten? Told it's all in your head? SIGN IT! 👇🏼

change.org/p/itt-campaign-g...

It needs 100k signatures before it will get any level of consideration! This community can get it there!

THYROID PATIENTS BE HEARD!!!

vm133 profile image
vm133

Thanks - this is a really informative (if very depressing) thread.

silverfox7 profile image
silverfox7

Good question! I wish the NHS and the Government were asking the same question instead of wanting to stop it! When there was a problem with T3 a few years ago doctors were told that they could source it from other counties and I thought that was brilliant as it was cheaper there. Since then it had really rocketed in price and no one seems concerned as the problem will be sorted by stopping it!!! I whole new meaning to preventable medicine! A few months ago it was mentioned anothe company had applied for a licence to sell T3. Can't remember the firm now but they are based in Leicestershire I understand. Let's hope they complete with a very much lower price and aren't hoping to fleece us as well!

marigold22 profile image
marigold22 in reply to silverfox7

Silverfox7 - the pharma company applying for a licence to sell T3 is Morningside in Leicester. I've considered writing to them to make sure they are fully aware of the mayhem surrounding Liothyronine. But my brain is a tad foggy at the mo after major surgery. Would you be willing to contact them? They have to price much much lower to get any sales :-)

morningsidehealthcare.com/

Clutter profile image
Clutter in reply to marigold22

Marigold22,

Morningside Healthcare have been granted a licence. I'm told by a pharmacist that they will be cheaper than Mercury Pharma but still more than £9 per tablet.

silverfox7 profile image
silverfox7 in reply to marigold22

I think Clutter has looked into this. I knew the licence had been granted but no idea of price and I suspect they know of the problems around it and thought this was a good opportunity to u dercut it. It may be too little too late though as the NHS seems hell bent of stopping people buying it. I think the fact there have been given a license is, I think a positive point as the wording re being given T3 is that it can be given if the patient had a reason for taking it, i.e. other treatment not suitable same perhaps they accept some will. We'd to take it so potentially a lower price is acceptable. I would think it will take time though for this to be taken up by patients as often it's better the development you know! Time will tell.

Lintably profile image
Lintably

I have now been on the German Sandoz product for three months. It has been a real life changing thing. It may not help everyone as much as it has helped me. It has been only 3 months since switching from the UK Mercury Pharma product. It is £35 for 30 tablets of 25mcg. Mercury Pharma is £258 for 28 tablets of 20mcg strength.

The maker of Mercury Pharma T3 is exploiting an NHS loophole to price gouge. It is not unlike what other companies did with AIDs drugs, seizure medications and epi-pens. Over 30 different medications have been affected by this price gouging. There is an ongoing investigation. I'll post the link. Why the NHS doesn't stop trading with these crooked companies immediately when there are alternative sources for the drug is perplexing. Apparently 2 other companies are in the process of applying for a UK Licence. This seems to be an expensive and lengthy procedure. As a workaround the NHS should instruct doctors to prescribe the less expensive T3 via Named Patient prescription and halt buying any more of this extortionate Mercury Pharma product immediately. It isn't just a price issue, their product seems to have variable potency problems and it never made me feel as good as the Sandoz product in the 12 years I've been on it.

Sandoz is not one of the companies applying for a licence. I am not keen to changes since I haven't felt this good in over 17 years! Since changing to Sandoz T3 three months ago, I have more energy, I've lost a stone, my hair is thicker and I've lost bloating in my face among other things.

Notionally, if you ask an endocrinologist to use the Named Patient workaround to order the less expensive Sandoz product there is nothing stopping them from complying with your request.

Perhaps useful to take the info about the investigation and alternatives to your appointment.

Sandoz is the generic I receive via Boots. Other pharmacies my vary on which generic they offer. As long as your doctor writes the prescription for 25mcg dose you automatically avoid the 20mcg Mercury product. You need to explain to your pharmacist that you are wanting the Sandoz or other generic to save cost. Otherwise they might call the doctor to suggest changing the prescription to the authorised 20mcg product. My pharmacist had to write to the local health board for permission to dispense an alternate T3 via a Named Patient prescription. He had to help the GP with the Named Patient prescription given by my endocrinologist as my GP had never used a Named Patient prescription and could not see any alternative to the Mercury product in her computer. A bit of a faff, but we got there in the end!

pharmaphorum.com/news/conco...

theguardian.com/business/20...

telegraph.co.uk/business/20...

hobbycat profile image
hobbycat

Lintably, I'm so pleased you are feeling so much better on Sandoz. And thank you for sharing your knowledge.

It's all a madness ! and there's lots to take in here. I'm getting behind all the campaigns and writing to my MP, the structured approach. What other approaches are there I wonder that can make a difference to all this ?!

I have just started T3 myself and it has given me my life back - I have been such a drain on the NHS though the years because of my hypo symptoms - if only the NHS would see the far reaching impact of people not adequately medicated.

Unfortunately for us it seems we have two challenges ; the NHS diagnosis and the NHS procurement.

There is someone lurking and agreeing to sign the contract with whatever firm supplies T3 to the NHS at present at the highest cost imaginable I don't know when the contract runs out?

Why is the cost so high? Who agreed to the contract price?

This someone needs to be exposed.

What about all the other drugs bought through the NHS.

There are some extremely hard working people working in the NHS but the above person is not one of them

Clutter profile image
Clutter in reply to

Bunnyjean,

Which person are you talking about?

Mercury Pharma has been the sole licensee to sell T3 for years but Meadow Bank were recently granted a license so will presumably be in competition soon.

I did not make myself clear sorry. I am talking about the person in charge of the purchasing of the T3 working in the NHS i.e. the person who signed and agreed the exorbitant price.

Lintably profile image
Lintably in reply to

It's a licensing issue. The more companies that go through the licensing process, the more choice we will have. Apparently the process is expensive and takes time. Now that one other company has a licence and another is applying it is just a matter of time. Sadly, the Sandoz product that I am on and liking has not applied for a UK licence.

in reply to Lintably

OK thanks for that. Perhaps the licensing process should be fast tracked and less expensive, something is dreadfully wrong.

I am sorry that your Sandoz is not one.

silverfox7 profile image
silverfox7

I still think the greatest problem we have is GP's lack of understabding. Many GP's will say if asked that Levo is fine because they don't look outside the box or are frightened of something that may happen if .......... so we do t have a great deal of back up from the very people who should be helping us to get well.

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