Hi, I live in Somerset and have been told that Somerset will no longer pay for my T3 prescription as there is a world shortage and the price has gone through the roof. My body cannot do the T4 to T3 conversion, so basically, I am stuffed! My GP does not know where to turn and my endo promises to write to the Prime Minister. I have written to my MP. I have a 10 day supply left, then it's nothing. Has anyone else had the same problem and if so, what did you do? Also any other suggestions of who to do? The future looks pretty bleak right now.
World shortage of T3: Hi, I live in Somerset and... - Thyroid UK
World shortage of T3
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Lizalex
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I live in Somerset and do not have any problem with my repeat GP prescription for Liothyronine from Boots.
From what I have read on this forum, Mercury Pharma Liothyronine is sometimes unavailable, but I have never had such a problem with 5mcg Paddock Labs Liothyronine.
Are you in North or South Somerset? I am in the Taunton area and this is what I have been told.
I live in Essex and I haven't had a problem so far. Have you been told this by a GP or pharmacist?
My GP told me this.
When I was put on t3 after having a bad reaction to t4 I specifically asked my doctor if there was in future the possibility of having the drug withdrawn on cost reasons. I wanted to know this before agreeing to a hemilobectomy. He told me no, if I had been prescribed it for good medical reasons and once on the drug it wouldn't be withdrawn on the grounds of cost alone.
Just make sure that your gp isn't giving you the spin of worldwide shortage as a justification for withdrawing the drug really on the grounds of cost. A couple of letters from local pharmacists confirming they can get supply should de bunk his/her theory. It may be that this is what the CCF is telling the gp.
There does seem to be something slightly odd going on, as it seems many of the Internet pharmacies are having trouble meeting demand. But I would have thought that if there really was a longer term problem that we'd have heard about it here on the forum before now.
Your usual pharmacist may not have any, but others almost certainly will. Have you tried ringing different pharmacies to see if you can get some?
It is not the pharmacy which is the problem - my GP has been told by the Somerset CCG that she must not prescribe liothyronine because of the cost.
Hi Lizalex
Contact your Patient Advisory, they will advise you in spite of CCG. Also if your endo can endorse this then it will be on your prescription saying"as per consultant"
Good luck
in reply to Lizalex
This cost nonsense is venal. You can (or used to be able to - dunno what's going on with this 'world shortage') get T3 from abroad, without scrip, for a tenth (yes, a tenth) what the NHS is apparently charged for it.
PM me if you want a stockist to try.
ging in reply to
I would appreciate this info please
Oh, hang on, didn't read your post properly - it's not that you can't get it, it's how expensive it is...
It's ridiculous. Liothyronine costs a couple of pounds a packet in Greece and you can buy it across the counter without a prescription. Only in the UK is it stupidly expensive.
I really don't buy that there's a worldwide shortage. And if there is, that isn't actually the reason it's expensive. Others will explain why, but it's something to do with one pharmaceutical company having the monopoly here in this country.
I got the same bullocks from my Endo and GP, in the end, I buy mine from Hong Kong, and it is hardly "expensive" even with international shipping!! Just a load of ol codswallop!
I live in Dorset and was told some time ago that the ccg would not pay for Liothyronine. My doctor rang them and told them I had been stable on it for 10 years, so they agreed to pay. Your ccg are the people to check with. The shortage, if there is one. Is irrelevant.
I live in the USA we have no problem here and I pay 5 dollars for a bottle , if I get 100 it's cheaper.
I live in the USA & depending on who's-who in America - it could happen - my blood pressure medication was taking 20 mg a day & then my regular pharmacy said they couldn't get 20 mg. anymore - checked around - no go - called the company that manufactures it & was told it had changed ownership & new company couldn't get an ingredient needed to make the 20mg - BUT can get 10mg & I take two of these - which my way of thinking - why wouldN't they be the same -10 & 20 mg - YES they would be - so if you have ingredients to make 10's & 20's would require same ingredients just different proportion - RIGHT - YEAH RIGHT - it's called harassment & so now - I take 2 - 10mg each day - Go Figure. Truth be known - it probably puts my health someway in danger - Only in America.
With levothyroxine I take Synthroid - not sure - I believe Synthroid is a little bit stronger - can you enlighten me on what the difference is? It's more expensive so no one in the medical community bulks on this one - I'm just thankful to finally feel 1/2 way human again. My goal - not theirs.
All USA levothyroxine must have a potency between 95 and 105% of that claimed throughout its life (up to expiry date). I suspect that the variation within the product is likely to be at least as great as the variation between products.
The only reason I can see for Synthroid having its market share and managing to keep its price so high is marketing - in all its numerous forms. The company makes everyone - doctors and patients - worry that anything else just might not be quite as good/strong/consistent - without providing any evidence. Might your patient be unhappy that you didn't prescribe Synthroid? Will they go elsewhere or sue you?
There have been issues with some other USA makes over the years.
Unithroid, from Jerome Stevens Pharmaceuticals, is also packaged as Lannett. Seems to be a quality product which some feel is better than Synthroid.
Rod
in reply to Katalina
Sadly, Katalina, not 'only in America'. Also in Britain. But maybe not in the rest of the EU. How can that even be? We live in an age of the Mushroom School of Doctoring ...
Lisalex please see my private reply in your inbox
It seems that most of on line suppliers are out of stock as well 
I have pm you!
What 'world shortage' would that be? Sounds like a get out to me!!
I've read on other threads how the supplier to the NHS is charging WAY over the odds for T3. I think it happens a lot, actually, that the NHS is positively fleeced by big pharma and in the end it's the patients who suffer. What we need is a canny administrator or two in the NHS (surely they do exist) keeping an eye on its drug suppliers and sourcing decent deals for us. In the meantime, it might be worth checking out whether you can source it yourself. Didn't someone else mention a brand and a relatively cheap cost? Worth it if it keeps you well.
People wake up! This Mercury Pharma and their very dodgey practice of driving the price up. They tripled the price overnight when they became the only supplyer of T3 to the NHS and they're doing it again. When will the Monopolies Commission or some one in government wake up to what's happening.....we're being ripped off by this very suspect company. Makes you wonder who in power is making money out of this.
There are no logical reasons why a medication in Greece cost £2 and in the UK over £120 for the same thing, other than profiteering.
Write to your MP and demand and explanation.
I am not aware of there ever having been another supplier of liothyronine tablets to the NHS except Marcury Pharma and their antecedents. It was always Tertroxin until they switched it to be a generic product so as to exploit a pricing loophole. But don't think any other product was ever available here (except special orders).
helvellaAdministratorThyroid UK
The medical establishment has been ranting on about evidence-based medicine for years. It seems entirely reasonable for you to ask them for their evidence of a worldwide T3 shortage.
Here is an advert for liothyronine in huge quantities (up to 100 kilograms a day, they claim):
alibaba.com/product-detail/...
Maybe the quality is not so high or something, but product is available.
Rod
Hi Lizalex,
I am not aware of a world shortage of T3. I get mine on an nhs prescription from my gp every month now since having a spat with my gp last March. My endo had written to her but she'd tried telling me that my local pct would not authorise it. I argued my case and told her my specialist said I needed it and that cost should not be an issue because I had thyroid cancer. She backed down but, now I have a different dilemma... my endo has put me on armour thyroid and my gp will not prescribe it because it is not licensed. Instead, my gp keeps prescribing T3 and levothyroxine every month regardless of cost, the T3 costs £130.00 when I last checked but armour is half the price, and I cannot use it. I keep giving them back to my pharmacist but they insist I take it because my gp keeps sending the prescription on the electronic system and they order it in special just for me. My armour will run out in 2 months and then I am stumped because I cannot afford to buy it because I lost my job due to my illness. The nhs system of prescribing drugs is ludicrous and keeps big pharma in big bucks at the suffering of the ill.
TT x
These pharma companies have unknown parentage!
But the big question is.....why are they continually allowed to gat away with it? With the NHS under so much financial pressure and there being obvious ways to save money on the drug bill alone....? Someone in government is making money out of this!
Hi I am shocked to read your post, I was only put on T3 in December and for the first time in years I actually feel well. I live in North Somerset, the endo who prescribed it for me was at the BRI. I agree the future does sound very bleak.
Please do not despair. Read the responses which I have had and enjoy the good feeling which T3 is giving you. I have been taking T3 for 15 years now and have been well supported by my GP and my Endocronologist. No-one has complained about it until now. I intend to keep fighting the NHS but am so pleased to find that there are other sources out there if I need them.
From what I understand from my endo at hospital, hospitals are still able to prescribe it for patients who they treat and know cannot make their own T3. So get hold of your consultant - email, write [registered delivery] so you get an answer. No answer then PALS maybe a source of information. This is all wrong! Years ago I had terrible trouble getting my GP to prescribe, and am I thankful I have an endo who understands his patients and the disease.
I could never get Liothyronine prescribed by my GP because of the ridiculous price. For example my partner managed to blag 3 or 400 T3 tabs I can't remember which, but at least 300 tabs and the cost equivalent was £18. I said it before and I'll say it again, rip off Britain!
I've been buying Liothyronine off the internet for nearly 3 years. There does seem a problem with processing credit card payments though at the moment.
I believe someone said that Henning(?) T3 was much cheaper.
It is much less expensive than Mercury Pharma liothyronine (at retail prices). Still more expensive than Mexican, Greek and Turkish sources.
I was just thinking of patients being prescribed it on the NHS, but I don't know if they would.
At least one person here was prescribed Sanofi Cynomel because they argued with their doctor/pharmacist/funding organisation that it would be cheaper. That was obtained by the pharmacist. I do not know if they continue to get it.
It is a very reasonable suggestion - whether Henning Thybon or Sanofi Cynomel or another EU-based make.
Rod
I have been told that there could be problems when changing brand [this is not from a person scare mongering] and that if a change of brand is brought in then the relevant function tests should be done 1 and 2 months after. Do you know of this? Mercury I am told charge £103 apprx for 28 day pack of 20mcg.
It is interesting that some people seem to swap makes and hardly notice, when others suffer.
It is also important to recognise that some liothyronine makes are in 20 microgram tablets and others in 25 microgram tablets. (Ignoring the very different ones such as 5 and 50 micrograms.)
I get mine from the pharmacy at the gp surgery. I used to get them from Boots, however, it took days to order them and I was told by Boots that they cost £2 per tablet. I live in the Brecon Beacons miles away from anywhere, however apart from the times I had to order them for boots, and treck around various boots stores in South Wales, as far as Cardiff (50 miles away) as that was like my 3rd nearest store (and they have 3 boots stores) as the 2 local stores (one of which was 20 miles away) never had them in, I always had to do a 2nd trip because they also never had enough in. How they cost £2 per tablet, I don't know, however, the ones I ordered myself online were dramatically cheaper and just as good.
Since I get them from the gp pharmacy, I have had no problems ordering them.
Costs more than £2 a tablet now - more like £4 a tablet. Around £130 for 28 tablets.
in reply to helvella
That's really expensive. I just hope they don't stop my prescription. Have also got 4 bottles left from ordering online, though much cheaper than the UK and I have about a years supply
Hi Lizalex
I too live near Taunton and have been told by my GP that she is no longer prepared to prescribe T3 because of the cost and that T3 has to be prescribed by an Endocrinologist. Plus that T4 only is the recommended medication for hypothyroid patients.
I have been on T4/T3 combination for about 6/7 years as T4 on its own didn't help with my symptoms and I had many years feeling very unwell. The transformation was amazing when T3 was added.
I have written to my GP explaining that I don't feel well on T4 only, but she is not interested in helping me and they seem to have dug their heels in. Her response was that our bodies change so I might not need it now! I can't help thinking this is all down to cost. I feel very let down by my GP, as I am sure you do by yours, but I am now buying my T3 (25mg) tablets online from Mexico at a very reasonable cost and have about a year's supply in stock! So no more worries.
Don't despair and good luck.
Oh that is just such utter nonsense coming from your GP. Its based upon no scientific fact. I would be tempted to write a letter stating that you have been stable on t3 and that if removing it, for cost reasons, causes you to revert to feeling unwell, you will have no hesitation in instructing your solicitor to sue the doctor. (Of course you have to be willing to follow this through).
In fact the first thing you could do is get a solicitor to write the initial letter for you. Also, ask your doctor to arrange tests for free t4 and free t3 so you have a base line. If they refuse, get them done privately and ask if your doc will do the blood draw.
I know it's going to cost you a couple of hundred pounds... But compared with the cost of your health if the meds stop, it has to be worth it.
G xx
Can you advise me where you buy yours in Mexico? Would you send your reply to ralph.dundas@yahoo.com. I ordered some T3 from a Mexican web site about 7 weeks ago, and they sent me an email telling me due to border issues between the U.S. and Mexico there would be a delay in my order. I don't know if I'm being scammed, or if I'll ever get my order.
Thanks!
Thank you!
This has happened before. Your pharmacist can get supplies from France but the tablets are 25 mcg not 20 mcg. Your GP will have to provide a private prescription as the tablets are not on the nhs approved list. It is possible to do but your GP and pharmacist need to be supportive. I tried a Boots pharmacist rather than my usual independent as they have more buying power. He got the pills in 24 hours! There is a Turkish company in London who are able to produce the tablets at a fraction of the cost but they are not NHS approved so the NHS continue to pay excessive prices and are held to ransom by the approved manufacturers. It's madness....meanwhile we get ill! The tablets are called Cynomel 0.025mg made by sanofi-aventis France, Paris, France.
The ones from Mexico are also called Cynomel. They come in 25mcg, unlike the Uk ones I have which come in 20mcg and 5mcg. I have a supply of those too and much cheaper than the UK. Although, in the UK prescriptions are free (some in England). I am in Wales where all are free.
UK ones ONLY come in 20 microgram tablets.
(A few people get USA 5 microgram tablets from Pfizer/King, Paddock or Mylan.)
That would be a great help to me. My script is for 10 mcg twice a day and I have to cut the 20 mcg ones in half, which is a real fiddle. Sometimes, I am sure that I don't even get my full dose because they rumble away half of the time.
Liz
If you think that Mercury Pharma liothyronine is expensive at around £130 for 28 tablets, think how much 5 microgram tablets would cost. For a start, four times as many tablets. And, being special imports, they would (I think) be even more expensive per tablet!
But it would be helpful to have dosages appropriate to what people need to take!
Years ago when I was first prescribed this drug, and fighting very hard with my GP and CCG before getting it I asked what the price was and was told it was just pennies more expensive than my levothyroxine, so if it has shot up in price and the NHS only uses Mercury then the blame may lie truly at their door. It is time that patients who really need this drug rally together and attempt to make NHS England get involved? Is this purely a CCG ruling related to Somerset CCG? How do we find out?
in reply to Lizalex
I used to have to do that. I know what you mean. When I was on 10 though I took 2 x 5mcg, but sometimes the chemist would give me 20s and how I got around it was by taking 20 every other day - that worked and on 2nd appt with endo, I got it upped to 20 daily at my request. I was not happy with this endo on something else, so am awaiting appt for 2nd endo, am hoping he wont take away my T3. If he does, I will just order them online. Money is a worry at the mo - struggling on ESA 72.50pw. Am lucky I have a years supply. In a years time who knows what will happen
If your CCG is Somerset CCG write to Shaun Green[e]? at Yeovil office, google the address, Wynford House I believe. Google him and get his job title. And send it recorded delivery [just my advice!]. Need to know if you are Somerset CCG though - I believe it could make a difference - not sure exactly yet.
Hi everyone. Here I am again. Still battling with GP, endocrinologist, MP and CCG, with no results so far, despite the fact that everyone is supporting me, Somerset CCG have told all GPs not to prescribe liothyronine - I now have a copy of the letter. My endo is furious and has written to my GP telling her that she must prescribe it, but the practice will not allow her to do so. THEREFORE, I HAVE JUST HAD TO ASK HER TO ISSUE A PRIVATE PRESCRIPTION AND HAVE TODAY PAID £105.00 FOR ONE MONTH'S SUPPLY.
NONE OF THE FOREIGN SUPPLIERS HAVE ANY AT PRESENT - THANK YOU FOR EVERYONE WHO SENT ME ADDRESSES - I TRIED THEM ALL. IT WOULD APPEAR THAT THERE IS INDEED A WORLD SHORTAGE.
PS. If anyone has any more foreign suppliers and have received T3 recently, I would be most grateful for the address.
Hi. I live in Taunton too and have been told the same thing.
It's disgusting.
I understand it's now a postcode lottery.
X
My endo is in London and sees people from all over the country. I saw him last week and he told me that more counties have begun to do this. Also, it seems that there are some people here in Somerset, who have been prescribed T3 without ever having tried thyroxine. Therefore, the NHS are paying for people who may well respond to that - a much cheaper drug. I know that my body does not convert T4 to T3 because of the type of hypothyroidism I have. I have tried it with no success. It is just a real mess. x
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