My GP says that the NHS can no longer prescribe... - Thyroid UK
My GP says that the NHS can no longer prescribe liothyronine. Has anyone else had this problem? I now have to pay for a private prescription
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No but I am waiting and dreading that it will happen. If it does, I really think we T3 people must start a campaign. It is disgraceful if medication that makes us well is refused, especially when the NHS is paying too much for it in the first place. I have had TT and will fight it with my practice on those grounds. T4 does not give back what I have lost. How do you feel about it?
I didn't do well on T4. For many years I have been fine with a combination of T3 and T4. My consultant has written to the GP to support my plea for a continued prescription but they still refuse. I agree we should start a campaign if this is widespread.
Tom,
We have heard several mutterings in this direction - but not many point-blank refusals.
I guess your GP didn't tell you who or what part of the NHS has deemed it not possible to prescribe it any longer? It couldn't possibly be the Clinical Commissioning Group - which is doctors running things - for your area? Could it?
The only reason I can see for this decision is cost - and the only reason the cost is so high is that Mercury Pharma have managed to get such a relatively high price for it. (Relative to similar products in other countries, or, indeed, the same product when it was branded Tertroxin.)
I would like to know your GP's response if challenged on this issue.
Rod
Hi Helvella, 1euro 16 cents for a pack of 30 x 25mg a pack from unipharma in Greece, so no excuses from the NHS are acceptable as to cost!!
I wrote to the Clinical Commissioning Group who said that there was only 'anecdotal evidence' that T3 worked and that they could not prescribe it as it is unlicensed. I know this is not true but I didn't have any other option than to pay £100 a month for a private prescription. Perhaps I should just change my surgery since this doesn't seem to be common practice.
The "it is unlicensed" seems to be fundamentally untrue.
Most assuredly Mercury Pharma Liothyronine 20mcg is a fully UK-licensed product. You only have to look at the Summary of Product Characteristics document here:
medicines.org.uk/emc/medici...
.. to see this:
8. Marketing authorisation number(s)
PL 10972/0033
That is the UK license number.
The only way they could argue otherwise (it seems to me) is to suggest that the therapeutic indications in that document are not exactly what you want it for. In their opinion.
There are plenty of people who have difficulty in getting it prescribed, but not so often on these apparently specious grounds.
Rod
Just a thought, I wonder if they are confusing it with Natural Desiccated thyroid, eg Armour Thyroid?!
If you were right...
A doctor who does not understand the difference between Liothyronine and desiccated thyroid, and then makes statements about them without at the very least checking, does not deserve to be called a doctor.
The idea that a whole Clinical Commissioning Group could make that mistake most certainly would mean they are not competent to do the job they have assumed.
I sincerely hope you are wrong... 
Rod
HI Tom, go to Greece, I get mine from Crete when I go on hols, 1 euro 16 cents for a pack of 30 x 25mg, cheaper than chips, and it does you good!! Holiday and health, why not!!
How about asking your endo if he would still manage your treatment if you bought yout T3 from elsewhere. Many others on this site get their T3 elsewhere (and I dont mean on a private script) at a fraction of the cost. Maybe your endo would be willing to continue with his support of your treatment if you did this.
Moggie x
Thanks; that sounds like a solution. Where is the best place to buy T3? I was worried about buying medication online.
Ask a seperate question on this and make sure you ask people to PM you with the information.
Moggie x
I bought some Cynomel yesterday from a chemist in France - 30 tablets of 0.025 at a cost of 3 euros - no prescription necessary. I will be buying some more this week as I am returning to UK soon and don't want to run out. Although I have only just started trying it, it does seem to help me.
Hi Loobs - when you say 0.025 ... Do you mean they're 25mcg? (Hopefully not 0.25mcg?!)
If so - that's really cheap! Did you need a prescription?
Jx
It is 0.025mg. There is no need for a prescription and that is the same for Levothyroxine as well - you just go to the pharmacy and ask. It does seem appalling that it costs the price it does in the UK when it is available so cheaply elsewhere.
L x
Nice little earners for UK pharma. So much for the EU bringing benefits. Ha!
Oh my! That is 25mcg - the same as I pay $61 for 300 x 25mcg from a Mexican pharmacy! I thought THAT was cheap! I'd heard you could get them for a couple of euros & over the counter in Crete - but not in any 'mainstream' type European country!
Ha! Can't wait to tell my husband - he's always banging on about 'taking risks' by taking drugs from a 'third world country that is known for drug problems'! Lol! He loves France! Haha! X
Loobs39, are you sure? I can walk into a pharmacy in france and get liothyronine with no prescription? I'm asking as I am on t3 and my GP has also stopped to prescribe it, the endo is so far prescribing it but 'threatening' to reduce my dosage from 200mcg daily to 20mcg (yeah right!), I might have to resort to frequent dover to calais crossings if he stops prescribing 
Yep I did it Friday at a chemist in Riberac (Dordogne) but haven't tried it elsewhere (although I intend to tomorrow, at a different chemist) at 3.01 euros which is roughly £2.75. The chemist asked if I took it in the UK and I said yes and she said OK, no problem. Whether I will be able to ask for 3 months supply I am not sure - I will let you know what happens.
yes please Loobs that'd be nice (an update) feel free to PM me if that's any easier too x
I went into a chemist today (different one) and purchased another pack of Cynomel (30 tablets of 0.025mg) for 3.01 euros. However, she would not let me purchase more than 1 packet! Both the chemists I went to are independent - I don't think there is a chain here (like Boots in the UK for example) so I would feel bad if anyone went all the way to Calais just for these and couldn't get them!!!! However, I will try again tomorrow in Bordeaux as I am spending the day there and I will let you know if I manage a third time as that will make it seem more likely to be commonplace.
thank you Loobs, very nice of you to try and find out for us x
Hi Moggie, I have been on T4 for 15 years, and I am still unwell I have now done lots of research and now know because my free t3 is below par then I am not converting my t4 to t3 so I would like someone to tell me the best place I can get t3 hope you can point me in the right direction Paula.
Jeeze ,what a murky world we live today..
Can't get essential medicines due to money grabbing Pharma and endless re-orgs in the NHS -mostly on full doze when it comes to anything 'off the straight and narrow'.
Very straight and narrow for the patients though, Downwards mostly ...Help!!
Hi, have had my T3 prescribed for years and received my latest NHS prescription from my gp just a few weeks ago.
Pleased to hear this, Muffy.
There seems to be too much variabilty in policy on so much in the Thyroid field!
I think people can be excused for feeling nervous!
Spot on Tegz.. I am nervous for one....
You are so right about being nervous. They are doing their utmost to make people take thyroxine when it isn't suitable for their needs...................and that's apart from batches of T3 that appear to be below standard. A constant battle for people who are ill.
Hi Yes, I have read this. However, I got my usual script from GP this week. There is no way she would give it me if told not to. Lives by the rules,, very rigid.So, frustratingly, I think we have to wait and see, what happens next. In the mean time, I am stock piling, as far as possible!
Best wishes,
Jackie
Im hyper ve been on carb since 2011 does carb works can someone explain pls
I haven't heard anything!
My doctor has only just started supplied me with 60mcg of liothyronnine per day three months ago and he has not mentioned any problem with supplies in fact he has just done a blood test in case i need more.
60mcg a day sounds like an awful lot to me.Beware you do not get palpitationsI was warned not to take more than 10mcg X2 daily.That adjusts my TSh 'quite' nicely and brings everything to a closer normality.Before I took Lio.I had a TSH of around 18+ and felt very unwell.Now feel pretty good. It took about a month for the adjust. to take place with a blood test to confirm it was 'working'.
No one has mentioned the British national formulary. This the book which the doctor refers to when he looks what medicines he can prescribe. Te book lists every medicine which is licensed for use in Britain. There is on on line version. Where you can sign up for free. t3 is clearly listed as Liothyronine and is available in the uk , as of August 2013....... Sd doctors who say itS not allowed, or not licensed or not no
available are all telling big lies.
Your GP should also have told you that you can appeal against the refusal to provide your medication. Recently I had a similar discussion with my GP regarding my request for liquid Eltroxin as Mercury Pharma are again having problems producing it in tablet form. My GP had to request permission from the Primary Care Trust (PCT) due to the cost involved (£160/month.) When I asked what I could do if the PCT refused she helpfully advised me there is a process so I could appeal against the decision. As it was I did not need to do this as the PCT approved the prescription. My amazing employer also said they would investigate providing it under my private medical scheme but this was not necessary either. My sister, who works in the medical profession, also told me some drug companies have a compassionate supply scheme where they fund the drugs for some patients, she uses this for some of her cancer patients. I think overall the message is that you have to fight for your needs and the approach of 'Patient Power' is something we are all going to have to adopt by doing our own research, supporting each other with communities like this & not taking 'No' for an answer.
I have to see my Endocrinologist tomorrow as my GP has told me that she is no longer "Licensed" to give me this drug. I have been on it for at least ten years and it was a Endocrinologist that prescribed it in the private sector. The GP said that I would have to have it reaffirmed by the hospital. I know it is classed as an expensive drug and I did question that, but she hid behind the "licensed" crap. At least if I have any problems, I can refer to what you have said and that it is a listed drug. I am really worried now! So thank you for the ammunition.
I'm not in the UK (in Ireland - but as before our system tends to mirror a lot of what happens in the UK), but despite our state run so called 'drug refund scheme' we pay very similar prices to pateints in the UK for T3. (and T4)
We truly are trapped in state created monopoly since we're not permitted to import presctiption drugs even for pesonal use, and the price seems to far exceed that on the open/Euro/world market.
I'm not 100% clear on the terminology, but T3 was recently removed from the local list of approved (?) drugs. It continues to be available, but the supply has been patchy and subject to dislocations and unreliability - presumably down to the vagaries of what pharmacies have been able to obtain from local importers.
The T3 testing service which was available to GPs from our local hospital has meanwhile been refused for the past several years, and is only available to endos.
It's hard to not to think that there is some common undercurrent/bureaucratic/industry perspective driving these attempts to kill off T3. Cost saving gets mentioned, but somebody somewhere in both our systems must be making enormous profits on T3 given the pricing. My inclination would be to suspect that it's possibly the cost of blood testing that is the bug bear.
It's maybe a double whammy - that the relatively low price of synthetic T3 on the open market means that big pharma (manufacturing and/or distribution) may not be very interested in it either.
The final dimension to all of this that makes the situation here intolerable is that it's impossible to get solid information on what's happening, or when there is a supply or a potency problem. The pharmacies seem to get handed whatever half credible explanation floats into the head of their suppliers and/or the authorities, and there's never any solid information on what's really going on.
Hard experience suggests that this doesn't bother them - those I've dealt with have seemed to have no problem simply saying they can't get supply when there's a problem, and to feel no responsibility for the fact that the patient is dependent on the stuff.
The straws on the wind are not encouraging. I'm another that needs T3 to function, and that feels that if we don't get some sort of serious campaign off the ground that we're at risk of being left high and dry, and in serious trouble.
That this is happening in a time when more and more research is hitting the table confirming the need for T3 to achieve well being/effective replacement in many cases seems incredible....
ian
Clearly an example of commissioning groups tightening things up to lower their spending, always knew this would happen, but up to now I have only seen very minor examples in my area, where the clinical justification was relatively easy for them to make (in this case Olmesartan, for high blood pressure which does have some degree of negative issues), but the thin end of the wedge seems as if it is going to get pushed in pretty hard once it gets going.
The whole arrangement is a case of putting the foxes in charge of the chickens, and how long will the temptation last before they get their teeth into a succulent prime fowl!
Worries me significantly, many of the drugs I take (and are not even close to being as expensive as some) are not at the cheapest end of the scale, and huge savings could be made if I were dumped onto cheap short acting opiates, instead of slow release patches (£100s per month alone!), beta blockers instead of ARBs for blood pressure, Ibuprofen instead of more expensive selective Cox2 NSAIDs etc... and I can just about feel the impact of the side effects biting as I have suffered them before!
With the potential saving of many £Hundreds per patient per year is easy to see, it adds up to £Hundreds of thousands in a large practice, it's a temptation that will be hard for them to resist. I don't even blame them, if I was staring at the sums of money involved, I would find it pretty easy pickings too.
For myself, despite pretty dramatic symptoms, I am already finding it VERY hard to get a Consultant referral and CT scan at the moment, whereas every other issue I have EVER had in the past (had two new referrals in the few months before April for example, plus Ultrasound and Cystoscopy without even having to ask a FIRST time!) in fact then I have barely had to blink to get one! Now, this time even after an emergency visit to A&E and being assured there that I needed a CT scan it has resulted in nothing! I get the feeling it's going to be a long job
This sort of situation happened on a small scale in the late Thatcher era with "fund-holding" GPs cutting out a variety of drugs, (I saw it with my Mother's GP) but the potential scale was nothing like now as there were only a relative few GPs with that status and it soon died a death.
I think clearly something has to be done here. We have GPs unwilling to prescribe T3 due to inconsistent studies or cost. Even when we obtain our own, the NHS won't test our FT3 levels. Then we have the equally useless Pharmacists who don't have a clue what T3 is when they are supposed to be 'experts in medicines'. What an appalling farce.
My GP finally prescribed Liothyronine last March with great reluctance. I didn't really get on with it, but wanted to keep filling my prescriptions to remain on the 'thyroid patient database' or whatever it is they call it. And also to make them aware I was taking T3 medication.( I ended up buying another brand) However, in January this year when I phoned my surgery to get a repeat prescription, the nonsense started again. I was told this would have to go through as a 'special request'. I explained I'd been getting it prescribed for 9 months. I then receive a phone call the following day to be told they couldn't put it through and to make an appointment with the doctor.
Now, I didn't bother making this appointment because I am 100% certain it was going to be the usual guff. You know the one? Computer says no... This is the usual way they conduct their practise, but I wanted to share my story because I do believe there is a move on to stop the prescribing of Liothyronine. I mean, at £52 for 28 tablets, how many GPs are comfortable with prescribing that on repeat until your demise?
I am in the same boat. I have been on it for ten years or more and I now have to go through the endocrinologist at the hospital because my GP is not "licensed" evidently. I know it is considered expensive but it is my lifeline - my kick start in the morning. I was told by one GP that "I was lucky" to have it! Could have floored him at the time. Wish me luck, I will let you know the outcome. I am really worried now!
OMG. I don't think that I'd be able to stand it if my T3 prescription was stopped; I take 120mcg per day (140mcg at the moment as the batch is weak). I certainly would not be able to afford it.
My GPs are all a bit wary of T3 and I've had to have a dexa scan and ecg to keep them happy. One GP said that 98% of his patients are well on T4 - I asked him how he treated the 2% who were not!
Yes, it's the 2% who need it. Since there are so few us I can't understand why they make such a fuss about prescribing it. It would be interesting to see a map of which Commissioning Groups allow T£ to be prescribed and which do not.
The trouble is GP's have a tendency to compare each patient, instead of treating them individually. The GP who told me she is no longer "Licensed" also said, "My other patients are ok on just thyroxine" - I did bite back and say, "I am not your other patients and everyone is different" No response to that other then to refer me to the hospital. I am going tomorrow and dreading it.
HI - there was a shortage of Liothyronine but that is sorted now I have to stay on it according to my surgeon, so I think your GP is mistaken, or trying it on as it is a bit more expensive than the alternative Levothyroxine, hope you get it sorted. ;/
HI Tom58, I wouldn't waste my breath on the NHS, just buy it for yourself, only 1euro 16 cents for a pack of 30 x 25mg from Greece, I go on hols to Crete, have a huge stash, will buy more again this year when I go, so the NHS really have no excuse on price to prescribe it, and it works brill.
They know that I am not converting T4 to T3, and the professor says that he will never prescribe it to anyone, they must make more profit on the T4, it's all about MONEY!! Not HEALTH, did you not know that.
I got via the NHS (Scotland) my Liothyronine, up until now. The pharmacy told me that the producer has problems to supply. And now I am stuck, I don't do well with T4, tried it, tested it, and it's a big miss. T3 is the only one working for me, I only can hope that I can get it again a.s.a.p.
(BTW I had thyroid cancer and got everything removed)
Hi I just received a letter from gp saying they reviewed and updated my medication. They have stopped my liothyronine. The reason is the local guidelines only recommend levothyroxine replacement. The specialist put me on liothyronine as I wasnt doing well on levothyroxine. It helps with my constant migraines. At the moment with changing blood pressure tablets reducing pain medication this will not help at all.
Sorry, but people often ignore posts made to old threads. (This thread was begun three years ago.) If you want some help with your T3 problem, then you need to write a new thread of your own. Use this link to start a new thread :
healthunlocked.com/write/th...
Sadly, lots of people are in the same boat as you.
But there are ways to get round the problem if you are prepared to pay.
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