Increasing price of liothyronine

[HypoHim]

I just came across the current cost of a box of 28 tabs of 20 µg liothyronine for the NHS - £152.18 (screen grabbed from the British National Formulary). Very interesting that the price is increasing so much... According to an old post on the forum, the price in 2013 was £68.20. And the price in 2010 was £34.65.

healthunlocked.com/thyroidu...

[helvella Administrator]

Thanks for noticing and posting the bad news.

[galathea]

So, the price will just keep increasing until such time as either no one takes it, or another firm applies for a license. If another licence was granted then there would be price competition. As it stands there is nothing at all to regulate the price.

How much does it cost to apply for a licence? IsnT this the sort of thing that charities can help with?

Why the NHS doesn't look into manufacturing its own generics is beyond me. Maybe they just haven't thought of it, but they would save a fortune.

Meanwhile, I think I will look at keeping pigs. :-). Wonder how much NDT you could make from one piggy?

Xx g

[Gismo333]

T3 from Mexico is the best as far as I'm concerned. The problem is there is a problem with labelling but hopefully it will be available soon at £15 a bottle. Called Cynomel.

It's extortionate what they are charging. It's so cheap to make apparently. Total rip off and the T3 they use isn't very potent at all.

[Jayne22 in reply to Gismo333]

Interesting! Is the Cynomel 25s coming back in stock? I'm about to buy on script in Oz not sure of cost yet

[Gismo333 in reply to Jayne22]

All I know is that someone told me that it will be available again in November but I'm not sure if it's true. The sooner it comes back the better

[Jayne22 in reply to Gismo333]

Hear hear! Thanks will look out x

[Pixielula in reply to Gismo333]

Hi gismo333 where do you get your t3 from as I have just learned that my go will not prescribe it anymore and I have to get it on private script which I can't afford on a long term basis

[alrk]

There is a shortage of T3 around the world at the moment, Mexican Cynomel has disappeared for a while and noone knows if/when it will reappear. There is concern in the ranks of T3 takers!!!

[Amandajl]

My friend brought me some back from Greece last week it was €1 a pack of 28,

[bobsmydog]

So how does this work?

The NHS sit back and wait for a company to apply for a license to supply a certain medication - they don't go out and actively seek out a good deal on the marketplace and grant a license to that company? Is that right, is that how it works?

[HypoHim in reply to bobsmydog]

I think it's more complicated than that. I'm not sure that the NHS itself grants a licence - that is part of a bigger regulatory process.

[bobsmydog in reply to HypoHim]

Right OK.

Whatever... it's obviously a bad process which results in them flushing our taxes down the lav!

[HypoHim in reply to bobsmydog]

I agree, it's ridiculous that the price of a generic is allowed to escalate like this.

[dizzy864]

I now understand why my GP is really pushing me to come off liothyronine.

It's extortionate!! Not just because of it's price, but the fact that it's quality varies with each batch it makes. I'm sure I can't be alone in finding that I feel differently with each different batch I take.

I've just been given batch number 82156 by my pharmacist. Inspite of the fact that I asked them three months ago not to give me this batch as I was really ill with it over the beginning of the year. It's now three months older and will be less potent than then as we all know liothyronine loses potency with age.

Has there been another production problem at the factory?

The blue card system doesn't work from my experience - as one fills in a card and never hears anything back. ( Yes, I do request feedback .)

We desperately need an alternative supplier here in the UK. No system can work when there is only one either from a cost point of view or a quality point of view.

[bobsmydog in reply to dizzy864]

So the 'regulation' is doing a thoroughly bad job all round, failing on both cost and quality. Great!

If Greece can do it, despite the trouble they are in, why on earth can't we? 1 euro for a pack of 28, flippin heck This is a scandal.

[nightingale-56 in reply to bobsmydog]

As Dr P's book is called!

[Hidden in reply to dizzy864]

I have just checked my latest supply of T3 ( haven't started it yet) and yes.....it is batch 82156.I have recently reported that my last three T3 prescriptions have been issued in plain brown bottles with no batch number or patient leaflet.This last one I took back to the counter and asked for a batch number because if I had any problems with it I wouldn't know what batch it came from.

I had to stand aside for some considerable time whilst the pharmacist searched the shelves for a number which was finally put on a fresh label,but he never said a word.

You have me wondering if my previous prescription was the same number as I haven't been feeling as well lately ! It's all worrying.I thought I was going to be alright once I was prescribed T3.I don't see my Endo until August and my GP said when I mentioned T3 to him last year.........." Don't go down that avenue......You'll lose me." and passed me over to my Endo.

It doesn't give you any confidence does it? Where's it all heading ?

We certainly need more competition here in UK for T3 supply.

[Spareribs in reply to Hidden]

With all the NHS kerfuffle about visiting your pharmacist & not troubling your GP - I do wonder if I'd get more conversation out of a librarian... or a fish for that matter...

[saloplass in reply to Spareribs]

I would try a fish!

[saloplass in reply to dizzy864]

In somerset we are now told that this drug must be prescribed by a hospital - so that is consultant level. This means the hospital are standing the cost of the drug rather than the GP surgery. Are GPs not able to prescribe this due to lack of expertise??? Or can they now ignore the advice of a consultant?? This all sounds totaly insane to me.

[dizzy864 in reply to saloplass]

I think it has always been the case that a consultant has to ask the GP to prescribe liothyronine. It was what happened in my case. I saw a consultant at Lincoln hospital in about 2004 and he asked my GP to prescribe 1 x 20mg tab a day.

In 2007 my GP referred me to a consultant at Nottingham hospital and he asked my GP to up my prescription to 3 tabs a day. I felt better than I'd felt for years on the increased dose.

My problem was that I was sent back to Nottingham 4 months later for a, "follow up", just to see how I got on the increased dose.

I saw a different and more senior consultant than previously. He did not agree with prescribing liothyronine at all for any reason. He ordered me to come off liothyronine all together. He wrote to my GP telling him to take me off liothyronine preferably completely but at least back to the one a day.

I refused and have had frequent arguments with various GPs in my village surgery ever since. I would have thought that if the hospital paid the cost of liothyronine for me then my GPS wouldn't push for me to come off it. But that is only my opinion.

[helvella Administrator in reply to dizzy864]

Not at all - GPs are perfectly able to prescribe liothyronine. Local rules may restrict them - e.g. CCG refuses to fund.

[saloplass in reply to dizzy864]

Initially my consultant prescribed it, then asked my GP to prescribe it on his advice. My GP refused, I then had to fight and finally my CCG agreed and told my GP to prescribe it. Now Somerset is refusing to allow GPs to prescribe this drug at all. Any prescribing has to come through a hospital. This drug is expensive yes, but most patients would be on small amounts - my T3 was life saving. CCGs need to talk to patients. Of course large amounts can do damage, but normally this is monitored.

More and more people will be purchasing from abroad - which we are told not to do. This is a ridiculous situation it is putting the treatment for some back hundreds of years.

[glamrocks4girls]

As someone who depends on their T3 (20mcg daily) and can't tolerate even a teeny bit of T4, I have been following the rise in price of NHS T3 on this site with alarm. There has been no mention from my doctor's surgery (in north Surrey) about withdrawing it but every time I submit my two-monthly prescription I'm dreading it being rejected. Thanks so much for all the info on this site. I shall start investigating the Mexican Cynomel after this post today.

[saloplass in reply to glamrocks4girls]

Contact your local CCG and ask them directly, they have to answer you.

Perhaps your CCG are in a better financial status than other areas.

None of this makes any sense to a sufferer.

[helvella Administrator]

In case it is of use to anyone, the BNF (including this entry) is available on-line via NICE:

Liothyronine sodium (Non-proprietary) Prescription only medicine

Tablets, scored, liothyronine sodium 20 micrograms, net price 28-tab pack = £152.18

evidence.nhs.uk/formulary/b...

(It is possible this is restricted to UK residents - which could be done by IP address.)

[flatfeet1 in reply to helvella]

I have just logged on to my ccg (south and west Devon formulary and referral) and this is what it says;

...........................................................................................................................

Liothyronine

Tablets 20micrograms (£306.90)

Injection 20 micrograms

Indications

Hypothyroidism

Dose

Oral, initially 10–20 micrograms daily gradually increased to 60 micrograms daily in 2–3 divided doses. Elderly- smaller initial doses

Notes

Liothyronine may be suitable for a small number of patients who are unable to tolerate levothyroxine. It may also be useful for replacement for patients undergoing a blocking-replacement regimen. Liothyronine is restricted to initiation by a consultant, not appropriate for initiation by GPs.

..............................................................................................................................

Would it really have gone up this much in two months or is every ccg so very different ?

If this really is the price I stand absolutely no chance

[PaulB]

Makes you wonder if this is cross subsidy, in which case it makes no overall difference, or volume based discount driven, in which case presciribe it more and the price falls...

More info needed. Anyone up for a freedom of information request or two?

[Girlpower]

I've just ordered another two bottles of Mexican T3, just waiting for them to arrive - completely gutting about the £152 though

[Flowerpower_nafas]

I bought the Greek T3 in India OTC and got 7 boxes for £40 as a back up in case of prescription problems. My GP is ok with it at moment but I hear there is to be an Endis conference to discuss whether certain mess should be prescribed T3 being one of them. Also certain health authorities are withdrawing it. My GP Practice is in financial difficulties at the moment so I am very concerned as I don't convert T4 to t3 well & have absorption issues too.

[saloplass]

All patients should contact their local CCG - it is thought that this drug may be of little use, but I have been advised the decrease in it being prescribed is due to cost, and that GPs who know little about the thyroid have been prescribing it too freely. I have no idea if this is true. I can only say that when I was given this drug I got my life back. I have been in touch with my local CCG and given them information from a patient - it seems that patients have not been consulted at all which I find alarming! Yes I am from Somerset.

[dizzy864]

I have heard that once a patient has been prescribed a medication, they can not be compelled to stop taking it. Doctors have to continue to issue prescriptions.

Does any one know if this is actually true?

I take 3 tabs a day.

I am extremely concerned about whether my GP will withdraw my liothyronine prescriptions. I agreed reluctantly in February to gradually reduce it - I was told my TSH had been suppressed for many years and this would begin to cause me serious problems. I was very ill - I later learnt that my reduction of one tab every 9 co-insided with a bad batch of liothyronine. Even with this reduction and being really ill, my TSH was unchanged.

My GP agreed very reluctantly, to me going back on my regular dose until June. But said he would write to me again and help me reduce it again.

I am going to refuse to reduce it. I am not going to willingly make myself that ill again.

I've also read that once TSH has been suppressed, even if liothyronine is stopped completely, the TSH remains suppressed. This was certainly supported by my experience. Is this always true?

I wanted to know what happens when I refuse to reduce liothyronine. Will my doctor only issue me with prescriptions for the reduced amount? Will he refuse to issue me a prescription at all for liothyronine? Or does he have to follow my wishes and continue with my present dose?

I've been on my current dose of liothironine since 2007. I've had several arguments over the years with several of the doctors at my practice about reducing my dose. I have always refused.