I suspect that private purchase of prescribed liothyronine in the UK is tiny in volume - and even more expensive (though possibly by only a few pounds).
This level of pricing makes it ever less likely that people will be started on T3, or even those on it will be allowed to continue indefinitely.
This is why I have recently sourced mine in Turkey Rod, Tiromel 25mcgs tablets for next to nothing. My partner obtained 10 boxes for me. I have made a friendship with a pharmacist out there and she gets them in for me with no problems whatsoever. I think that it is disgusting the prices here.
Hi I've been having normal thyroid tablet for under active and feel no difference now it's been 2 years. Been reading about T3 I will buy some online. do u take them as well as the doctors tablets.
Just a few weeks ago I wrote to my MP about the difference in price paid by the NHS for hydrocortisone tablets and the price for which I can get them online. I have a long, rambling letter from Lord Howe by way of an answer. I can scan it if you are interested.
What is needed is for another company to apply for a license. If none do so, then Mercury Pharma (AMCO) can charge whatever they like. Only when the drop in sales volume is not compensated by the higher price do they have to think again.
For most generic medicines there are at least two suppliers - hence some semblance of competition. But not for this.
I do believe that someone on this site has written requesting the Turkey Tiromel, but she got a rambling answer too, just avoiding the issue, be good keep taking your T4 and stay ill, figures look good so you MUST feel good, right like I never for 18 years on Levothyroxine.......
Me again. I didn't have to look very hard to find 100 x 100mcg tablets on sale in the UK for £31. Maybe pharmacies and doctors should start using the internet to make their purchases.
Although this may be a technical point, most times I have seen real prescription-only medicines for sale in the UK, they have actually been foreign companies operating UK web sites. Not always easy to spot but a bit of ferreting around has shown that to be the case.
Anyone operating within the UK is definitely operating illegally is and likely to be closed down.
Rod
Blimey! I wish I could feel that the NHS has a switched-on purchasing department but reckon that's just blue sky thinking.
Much easier to refuse to prescribe in the first place as the NHS machinery rumbles on without giving a stuff about thyroid sufferers.
Long may we be able to purchase T3 from our own suppliers.
This appears to be a bit of a loophole. If I have understood correctly, then for branded medicines, there is some price-capping mechanism. But for generics, there is not. In many cases, a high price being charged by one company will make it likely that another company would apply for marketing authorisation and step in. I suspect that the total volume of sales does not make it look worth doing that.
I keep wondering if European licensing might open the door? Again, if I have got the right end of the stick, once a medicine has achieved a European license, it could be sold anywhere. So we need a decent liothyronine manufacturer to apply for one. And then offer for sale.
It appears that Goldshield knew exactly what they were doing when they replaced the branded (and hence price-capped) Tertroxin with generic liothyroxine. Despite them being absolutely the same thing in the pots. Gave them a way of increasing the price.
Here Here,Ihave been on T3 for 4 years but only on nhs one for the last 6 months.I had stocked up on my own supplies just prior to nhs prescribing it so had better hang on to it in case they stop it anytime soon.
I have just written to my GP and endo saying I respond much better to cynomel and that NHS lio makes me ill. I think it's the autoimmune factor and fillers , maybe as does the hospital Medicines info Team. I shall post replies when and if I get them . I have pointed out how very much cheaper my cynomel is. Perhaps we could hound Grossman to apply for a licence or any other company?
It would be very good to see something like that. Have a feeling that it might be more likely that Henning Thybon or Sanofi Cynomel would appear - simply because they are EU products.
One issue that might crop up is that any product that is 25 mcg (rather than Mercury's 20 mcg) would not be seen to be interchangeable. (No - not actually saying that any two liothyronine products actually are readily interchangeable!) Not sure if that is significant or not.
Perhaps interestingly, I've been prescribed a different brand of Liothyronine on the NHS, made by 'Paddock Laboratories'.
I was told to start on 10mcg daily as well as adjusting my Levo down to a mean 142.5mcg from 175mcg daily.
My GP set up a phone appointment with me following getting the letter about it from my Endo - he stated that it only came in 20mcg or 5mcg tabs (my Endo had thought it was only available in 20mcg tabs in the UK) - so I said 5mcg tabs please so I don't have to mess about splitting tabs and can take two doses ~12hrs apart to more accurately simulate natural Thyroid secretion.
I picked up the prescription, took it to the attached pharmacy who said it'd be a few hours wait - went away and then got a phonecall to say it'd be a few days as it was special order only, 20mcg was the only ones they stocked normally.
Got my tub of 100x 5mcg OK after the wait and have now had it set up on repeat / automatic order every 56x days from the pharmacy - had to get the quantity on repeat increased to 112x to achieve that.
I think you'd find that the cost of the USA Paddock 5mcg tablets makes Mercury Pharma Liothyronine look like a total bargain. I might have the number a bit wrong, but it was hundreds of pounds. (700 comes to mind, but memory is fallible.)
You might have thought that a pharmacy would have someone who knows something? Maybe not...
If you are getting 112 on prescription, that is utter madness. As it comes in 100 tablet pots, why break into a second pot to take 12 tablets out and put them into another pot? And then keep 88 tablets in an opened pot - possibly indefinitely. (There is no guarantee that you will come back for your next prescription.)
It is NOT a UK licensed product. If someone says it comes in 5 and 20, well they might have added that it also comes in 25, 50 and 100 if you are including "foreign" products!
I think you are very lucky to have received this prescription but I would not bank on continuing to get it.
When I went to get my 20mcg prescription filled the pharmacy only had 5mcg tabs. When I asked if I could have the same quantity but in 5 mcg I was told that they were much more expensive, in fact it would cost an extra £200! I got a couple of days supply to tide me over but had to have the rest in 20s. If anyone knows where to get 5mcg tabs I would be really interested. Cutting 20mcg into 4 is not good. Jx
I had to get a t3 script when I was stuck in the US for longer than planned and the whole thing (I can't remember if it was one month or three months supply of - I think - 10mcg tablets?) cost around £60. It's extraordinary how it becomes so expensive in different circumstances. And apparently no one has to justify the cost. My gp is currently trying to talk me out of it3 due to the cost of both the pills and the tests.
Would my GP not have cost information in front of him when he was looking up the different tablets? He did authorise the change in quantity for the repeat prescription.
Perhaps it bodes well for being prescribed NDT instead down the line as that seems to be a well regarded way of taking T4 and T3 together.
The only thing is the ratio of T4 to T3 in Pig Thyroid is ~4:1 but I noticed my Endo has effectively prescribed a ratio of ~14:1, in line with what is supposedly the naturally occuring ratio of T4 to T3 in humans.
I doubt very much that the prescriber would have had ready access to the price. The pharmacy will (more or less) pass on the bill from the specialist importer (e.g. a company like Idis). What that will be might depend on which pharmacy you went to and could vary day by day. I know you wrote about it being a linked pharmacy - but the lack of information is likely the same in any case.
I predict someone jumping up and down in the next few days/weeks when the bill comes in.
The idea that the ratio of T4 to T3 inside a pig's thyroid being around 4:1 as against 14:1 for humans is a misdirection.
In a healthy person a little bit of T3 comes from the thyroid, more from the liver, some from other organs. It might make sense to consider the T4:T3 ratio of total conversion - or at least that part of which ends up in the bloodstream and not simply the small proportion that is released as T3 from the thyroid.
It is also complicated by the fact that people with thyroid disorders usually have malfunctioning thyroids. Perhaps it is producing no thyroid hormone at all?
The optimum ratio for a combination pill may prove to be 14:1, or 4:1 or some other number (which may vary from person to person), but the actual amount of T3 released from (or stored in) the thyroid is only one element of the whole scenario. There is NO reason to suggest that the ratio in the pill should be the same as that from the thyroid.
I am wondering if one could have been the standard 28 tablets of 20 mcg with the other price being either a different package measure (56, 100 and 112 all being mentioned on the Summary of Product Characteristics) or the injectable vials?
Not sure I follow Rod. If the Thyroid produces ALL Thyroid hormone in the body (T4 and T3) at a ratio of ~14:1, to me that means if you produced NDT from a dead person's Thyroid gland then resultant tablets / grains would be in that ratio of roughly 14:1 T4 to T3.
That is the equivalent of measurement of Pig NDT which nets a ratio of ~4:1 T4 to T3.
How much of each is then found in a pig or a human body to me is irrelevant for comparison of ratios found in the respective Thyroid glands, as that is very much down to the ability of the other organs to convert T4 into T3 - that is to say that neither hormone is 'made' elsewhere in the body but one is converted into the other via the deiodinase process.
How much a Hypothyroid person needs of each is a different question - on the face of it, it would seem that Pigs have a lesser capability to convert T4 to T3 in their bodies thus their Thyroids produce the stronger ratio of T3 vs a human Thyroid gland.
Perhaps some Hypothyroid people have a reduced capability to convert also and to me that is where the controversy comes in when it comes to what the standard should be in terms of prescribed medication. Levothyroxine / T4 only (the 'standard' in the UK) assumes a better than normal ability to convert. At least combination therapy with T3 in a ratio of 14:1 mimics nature and doesn't stress that ability to convert any further than in a healthy human being - surely the better option logically, right? Pure speculation on my part, however!
But what matters, it seems to me, absolutely is how much you need to take of each, by mouth, in order to get the needed amounts of T4 and T3 into the cells. Whatever that ratio is, for the individual, is the critical factor. If it happened to be about 4:1, then porcine thyroid would likely be good. But I do not believe that the 14:1 ratio is of much use in guessing/estimating the ideal ratio for an individual. For one person 14:1 might work wonderfully; for another 4:1 or even lower T4 might be optimum. I'd hazard a guess that for many, somewhere around halfway would likely be appropriate. After all, the rate at which T4 and T3 are "used up" is what determines how much is left in the bloodstream.
Honestly not sure how much thyroid hormone pigs need! Nor the ratios they have in their blood.
Maybe, if we had proper assessment of things, and, maybe, desiccated thyroid with varying T4:T3 ratios, we would get a more sensible answer.
By the way, if you click on Reply to this your response will appear indented below mine, and I will get an alert email!
Hi Rod, I have been reading this and other posts on this forum and I'm trying to sort it all out in my head. I like to structure things into pots so here goes please let me know what you think.
I believe there are three groups of people covering two illnesses
Group 1 - Underactive thyroid either because of immune attack or otherwise. These people do fine on Lovo as even although they are only having T4 so not getting the 14:1 ratio they would get from their thyroid their body will convert effectively
Group 2 - no thyroid issue at all. They produce T4 and T3 at the 14:1 ratio, the issue is elsewhere either in the Adrenals or the liver or the gut and they do not convert some or any of the T4 they are producing. Their TSH is fine and the brain thinks they are ok. What is the point in giving these people who have loads of T4 more T4 they need T3 replacement.
Group 3 - Underactive thyroid and this is diagnosed so std Levo replacement however they also have a conversion issue so again either only convert some of the T4 they take or may not convert any of it so what is the point in Levo for this group?
I don't think Group 2 or 3 are recognised so T3 is expensive as not prescribed as it should?
I have Hashimoto's and at the last test, my body converts all of my t4 intob t3. I take natural thyroid replacement. I have thought about topping up t4 ratio but read a post (must revisit it)
My sister is a hospital pharmacist and she quoted me £102.80 for 28 tablets. She doesn't stock T3 so that is the cost to her to order them in should I want to try them, I don't.
The situation overall might not be bad. It is often claimed that our medicine costs are among the lowest in the developed world(or some such phrase). Our total bill might be much lower than elsewhere (suitably scaled). That alone could drive the companies to try to make an extra buck on the things that won't be so immediately obvious. After all, levothyroxine is far cheaper here than in many other countries.
On the other hand, the situation might indeed be as bad as this makes it look!
The same thing happened with NHS Hydrocortisone a couple of years ago. It used to be about £5 for a packet of 30x10mg tablets and then it shot up to £44.00 a packet!! The price has not come back down. It's definitely cheaper abroad.
There was an article on this in the DM a couple of years ago....
This is what a member (dwsmith) said a month ago so I really do think it's extortionate. Now there's none at all. I'm lucky I have some in reserve:-
The last Liothyronine script i paid for from LLyods cost me £450 at a dose of 60mcg daily. Absolutely disgusting! I was completely unaware i could buy it abroad. I had to come off it after that because the next quote i had 3 months later was £750 no word of a lie!! What is going on ?
I want to try and self-medicate with T3 since my GP knows next to nothing about thyroid issues and T4 alone isn't working. Could you message me with reliable sources of T3, either UK or in Europe. I would be very grateful for this info, Thanks!
Rod, does this mean that if you can get a prescription then you can use that to buy T3 from abroad?
The site that I have used before is no longer showing it, but I wonder if I uploaded a prescription (which I don't have, so this is hypothetical!) then I could buy it?
(I have nearly run out of T3 (I take 150mg a day) and will not be able to get any for about a fortnight, although I should then be able to get 6 months worth from Greece.)
Hello Rod could you please send me the link above please in PM. I want to have a copy to give to my Endo to show how much cheaper NDT costs. Working out around £55 per three months. You have to be a member on the above link and pay. Thank you.
Just found out from the suppliers mouth now price is £198.00 per 28 20mcg tablets. I have written to my MP about the rip off because only one supplier in UK.
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