Source of T3: I ordered T3 from that well known... - Thyroid UK

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Source of T3

leoopard profile image
75 Replies

I ordered T3 from that well known Greek Pharmacy, it landed at Heathrow 27 April and has since been lost by the post office. They are refusing to allow me to report the loss, saying it must be done it Greece where it's not possible for one month.

I am feeling downright awful due to lack of the T3 (there were other delays before this) and can't stand many more weeks without it. I wonder could somebody PM me with an alternative pharmacist where I can get it quickly and without prescription?

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leoopard
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75 Replies
YvonneLink profile image
YvonneLink

I'm new here but shouldn't your gp be issuing prescriptions for it? If you have a legitimate thyroid hormone deficiency why wouldn't your GP prescribe you the meds to treat it?

I've noticed a few posts like yours, do GPS ration or withhold thyroid hormone prescriptions or is very rigid criteria used to gauge the merits of prescribing them to those who'd benefit from them but don't meet the rigid requirements?

miglet54 profile image
miglet54 in reply to YvonneLink

Thyroxine is their hormone treatment of choice. T3 costs a bomb.

YvonneLink profile image
YvonneLink in reply to miglet54

Ah, gotcha. Is it a patented form of thyroid replacement therapy? If it's genuinely superior why isn't it more widely prescribed?

Is it generic but just costlier to produce?

miglet54 profile image
miglet54 in reply to YvonneLink

The pharmaceutical industry who sell to the NHS put up the price to about £300pm , so instead of sourcing it elsewhere for pennies they deny it to us.

YvonneLink profile image
YvonneLink in reply to miglet54

That's absolutely awful. Surely it would make more sense to produce it and sell it at a reasonable price that covers production costs and legitimate overheads only.. more uptake means more revenue I'd guess.

Heard of similar things happening with other generic medications that have a patented route of administration. Awful price gauging.

Good luck.

miglet54 profile image
miglet54 in reply to YvonneLink

Greed.

shaws profile image
shawsAdministrator in reply to YvonneLink

There are other forms of T3 available in the UK but they are unlicenced and they will not prescribe unlicenced neither can we get it without a licence. I am sure they withdrew T3 because too many patients were improving with the addition of T3 to T4 so others wanted to try it as well and Research Teams have also found many benefit from the combo :)

The UK state that levothyroxine is the only replacement to be prescribed and that it was superior to T3, not always true for many people who improved when t3 was added.

lola1956 profile image
lola1956 in reply to miglet54

£900 a month in some cases as once again nhs is being ripped off

in reply to YvonneLink

No I think not, it is a question of the NHS being ripped off yet again as with many products and services. T3 is made in France and only costs 6.96 euros for 2 packets of 30 tablets.

Sunnyday66 profile image
Sunnyday66 in reply to

Hi Bunnyjean I'd really appreciate knowing where that figure comes from for the French T3. My consultant has said I would likely benefit from T3 2 x 5 mcg a day. He wrote to my GP and the practice said no. Too expensive. They tried. So I am looking to get it online - preferably not from some underground lab in Asia designed for the anabolic steroid crowd. Any info would be very helpful :-)

in reply to Sunnyday66

The NHS only uses the drug that has been approved by them. It is very expensive for the drug companies to do get approval. ( I don't know why?)

so with only one to choose from they can name their price it's a rip off and only ordinary people suffer. The name of the game is profit! profit! profit! it's a scandal,

The T3 I was talking about is made here in France and I buy it every 4 four weeks. I don't think that it can be bought online.

Sunnyday66 profile image
Sunnyday66 in reply to

Oh :-(

But thanks for getting back to me xx

leoopard profile image
leoopard in reply to YvonneLink

No its not patented. The NHS did a deal with Mercury Pharma agreeing to supply exclusively from them. They would then bought by a big amercian company that whacked up the price to ridiculous levels. The NHS is just too inept to find another supplier - which in this circumstance it's legally premitted to do. Had they the slightest commercial accument though, they would have locked the price when they agreed exclusive supply.

helvella profile image
helvellaAdministratorThyroid UK in reply to leoopard

Do we have ANY evidence of an exclusive deal?

leoopard profile image
leoopard in reply to leoopard

T3 was not an issue for me at the time, hence I did not pay close attention other than thinking it was 'a bit much'.

The NHS though quite openly publicised it when the deal was first struck since they were favouring a british supplier in the national interest.

The massive price hikes when Mercury were bought out have also been both publicised and cited as reasons why it's no longer cost effective.

Right now, and until I can get some T3 I am not up to searching the press for he articles, but it would doubless be an interesting excericse and valuable ammunition for Thyroid UK once I, or another are up to doing the reseearch properly. An recording precise editions of newspapers, precise press statements etc.

helvella profile image
helvellaAdministratorThyroid UK in reply to YvonneLink

There is no patent on liothyronine itself. In the UK or the USA.

The generic product is absolutely 100% identical to the branded product Tertroxin that used to be supplied. The Patient Information Leaflet certainly even included the name Tertroxin for years (not sure if it still does). It continued to be sold as Tertroxin in other countries.

T4 (levothyroxine) and T3 (liothyronine) should not be viewed in terms of being superior or inferior - more a case of you need what you need.

Think of food - we consume (broadly and hypersimplistically) carbohydrate, fat and protein. We need all three. We each need our own balance. You cannot substitute one for another - but you might manage on less fat and more carbohydrate for a while.

Fruitandnutcase profile image
Fruitandnutcase

You might find it has been taken out for customs inspection and ended up at the bottom of a heap somewhere. Many years ago I used to work for a company who regularly got stuff that had to go through Mount Pleasant sorting office in London and that was always what happened. I imagine it is possibly still happening nowadays. Hope you can track it down soon.

leoopard profile image
leoopard in reply to Fruitandnutcase

I already spoke with customs. They said since the package oringiated in the EU, they would have nothing to do with it. They indicated that 'post office security' would handle it. The Royal mail as saying 'it's lost' the supplier is saying they can't even raise a claim of loss in Greece until a full month has past.

Fruitandnutcase profile image
Fruitandnutcase in reply to leoopard

Gosh that is annoying. The stuff we used to get at work came from Guernsey and the company who sent it was sort of British owned but that part was probably registered in Guernsey. It was the post office I think who took the stuff out - I think they checked it with a view to charging or something like that - and they obviously didn't always clear their pile before topping it up again.

What is so annoying I this case is that you really need your T3 plus that you've paid for it and don't want to lose out.

mostlyhappy profile image
mostlyhappy

Exactly the same has happened to me, right down to the same date arriving into heathrow.....sounds like a package has fallen out of the back of the van or has been taken out for further inspection :(

leoopard profile image
leoopard in reply to mostlyhappy

They told me that they do not track international post until it gets to your local sorting offfice (depsite this being 'signed for'. So nothing would suprise me. I did some causal work for the post officed as a student, and multiple posties told me they threw away anything that prove hard to deliver because they could not return with anything in their postbag (e.g. we had some businesses under a railway bridge that hod not street numbers marked).

LAHs profile image
LAHs

I know this sounds a bit drastic but could you not go over to France and buy it. Get a friend to go with you since you are not in the best of health, you might find that is a good plan B if this happens again. I travel 400 miles round trip to get my NDT and I do it a couple of times a year in a 27year old car, more times if the doc wants a blood test. From my memory that's further than France and back - and we don't have public transportation to speak of here (in California). We have the same problem here that many docs are scared to death to prescribe NDT so when you get one who will you travel to the ends of the earth to see him.

catrich profile image
catrich in reply to LAHs

Not sure France would help. You can't buy T3 over the counter in France unfortunately otherwise we'd all be at it! It would be like those booze cruises back in the days. :-)

in reply to catrich

I live in France and now buy T3 over the counter at my local pharmacy every month without prescription. I order it in the morning and pick it up in the afternoon. I live in Vienne 86 department. I have asked to order it in other towns they all offer to order it without prescription for that afternoon. None of them appear to carry any stock.

catrich profile image
catrich in reply to

Wow! There seems to be some differences between departements? Or is this something new and relevant to the whole country? My understanding -from this Forum - was that t3 was prescription free only in Greece and Turkey.

May I ask if you ARE prescribed t3 and just don't bother showing the prescription? Is there a central database that pharmacists can consult that shows anything pertinent (about you? ) Just thinking that if news got out that this is genuinely over-the-counter T3 many people from neighbouring countries would benefit from knowing about it.

in reply to catrich

I am not prescribed T3 they do not ask me for my carte vitale which you have to show in France every time you buy something on prescription. I only started looking into this subject because so many people were unable to access T3 from UK. I take thyroid s myself so have no axe to grind so to speak. I am only trying to help others. I just walked into my local pharmacy and asked for it I just wrote the name and T3 on a piece of paper. I was not asked for any prescription either just how many boxes. This Friday I am going to ask for 4 boxes instead of two just to see. I don't know if there is a database here in France everything is years behind especially the internet.

catrich profile image
catrich in reply to

Intriguing. And let us know what happens viz your request this week!

in reply to catrich

I will

miglet54 profile image
miglet54 in reply to

I live in 86 and have been refused without s prescription. I'd be grateful if you couldPM me please.

leoopard profile image
leoopard in reply to LAHs

I am wheelchair bound and due to the poperty I live in largely housebound, so sadly that's not practical. I had ordered 300 tablets this time to avoid exactly this scenario (loads of time to re-order next time). I suspect thyroid underlies what put me in the wheelchair as things were improving, that makes this doubly frustrating but c'est la vie I guess.

Thyroidie profile image
Thyroidie in reply to leoopard

I have taken Greek T3 because I am half Greek on and off a few years but it doesn't help as much as the T3 I get from College Pharmacy in USA. You can get a prescription for T3 from an environmental practitioner. I live in Bristol Uk and I get it from Dr Nicola Hembry. I am sorry to hear about the wheel chair and housebound situation. I am also feeling unwell a lot and I am housebound some of the time too. Best regards

Vasiliki

lola1956 profile image
lola1956 in reply to LAHs

Cannot buy without prescription in France

LAHs profile image
LAHs in reply to lola1956

OK, that's unfortunate. How about Belgium, Netherlands or Denmark? Anyone had experience with those countries. It would be good to get a catalogue of who will supply what and under what circumstances (i.e. 'script or no 'script)

Kitten1978 profile image
Kitten1978 in reply to lola1956

Somebody else posted saying that they managed to buy T3 OTC in France: they went to a pharmacy and asked for it. I think they had an old packaging - it seems to be helpful in explaining what medication you ask for and in convincing the pharmacists that you genuinely use it. It's worth trying if you visit France on holiday.

lola1956 profile image
lola1956 in reply to Kitten1978

Don't think you can buy without prescription in France now ..they stopped it a few years ago

Singoutloud profile image
Singoutloud

Same happened to me last month arrived Heathrow 3rd April but never received. Tracking number was the same one that was given to everyone awaiting delivery (a glitch in their system apparently)

Make sure the supplier is aware so they can send replacements and initiate whatever procedure necessary for lost parcels.

Half of my replacements arrived finally last week after arriving at Heathrow on 12th May still waiting for the the remainder to be despatched.

leoopard profile image
leoopard in reply to Singoutloud

I have done.. They first said they would do nothing until the greek postal service regarded it as 'lost'.

I contacted them again just over a month after it went missing and they said it was considered lost and they would resend.

Over a week later still nothing.. so I sent a quick email asking for the tracking number - a polite way of asking what the hell was happening now.

They said it was due to ship the folliwing day - at which point I sent a polite email pointing out that it had been over seven weeks since I ordered and over 5 weeks since it went missing and this was not acceptable.

Still no T3 over eight weeks since ordering.

Singoutloud profile image
Singoutloud in reply to leoopard

I contacted them the other day to chase up the other half of my order. They basically said that t3 in non-existent in Greek pharmacies at the moment. They are lucky as they are still getting deliveries but in only small quantities. They are aware that they have orders outstanding but asked for patience.

I don't actually believe all these all these orders are going missing in the post but I think they are issuing these tracking numbers (the same one for everybody probably) to buy themselves more time as they can't keep up with demand. There is definitely a shortage of T3 and that's not their fault but they could handle it better by advising customers that delivery could take some time. It's such a shame as their delivery times used to be so fast.

leoopard profile image
leoopard in reply to Singoutloud

You can check the pprogress of the tracking numbers both on the Greek Mail website and on the Royal Mail one. I know the number they gave me at least got here.

The story they gave me was that they were the only company in Greece getting Unipharma and that they were shipping two hundred packages per day and I was rude for saying the standard weas sharmeful.

I think that was an entirely reasonable comment following eight weeks without meds!

If they didn't know they had a problem when they took my order, they certainly must have done when they took yours - they should not be taking orders if they can't fullfill them. Were our cash not tied up, and had we not both sat tight waiting form them, we could have ordered elsewhere.

Right now I am looking at an american pharmacy that produces sustained release T3. It will be more expensive and there will be tax to pay, but that may be preferable to this mes..

Kitten1978 profile image
Kitten1978 in reply to leoopard

I absolutely agree with you: this particular supplier has been unable to deliver T3 on time for several months now. The majority of people have been eventually receiving their T3 after rather long waiting time. At least two HU memmers (moi and another person) did NOT receive their order (precisely: I received hydrocortisone instead of T3). I ordered somewhere else but it's a different brand of T3 and a supplier I haven't deal with before so I'm waiting anxiously to see whether it arrives and whether it works as well as uni-pharma...

leoopard profile image
leoopard in reply to Kitten1978

Eight weeks here since this order and still received nothing at all.

Kitten1978 profile image
Kitten1978 in reply to leoopard

I think we should start warning people to stop ordering from this supplier until the issue is resolved. I lost 35 EU (I can use HC, which they sent me as I'm on a low dose of it) but people might be losing more...

leoopard profile image
leoopard in reply to Kitten1978

I agree kitten, in my case it was 80EU since i had ordred af full years supply of T3.

Kitten1978 profile image
Kitten1978 in reply to leoopard

Fingers crossed it will still arrive. If they are accepting orders and money although they are unable to meet the demand it is actually called STEALING. Maybe they are trying to "earn" as much as they can before they have to close their business down, which is going to happen if T3 and other thyroid and adrenal hormones they sell become prescription-only in Greece. This would explain why they no longer care to be polite when we dare to complain.

leoopard profile image
leoopard in reply to leoopard

I would love to know if Greek law is the same as English, if they arrange carriage, they are fully responsile if it does not arrive and how many of our members have been ripped off in this way?

Kitten1978 profile image
Kitten1978 in reply to leoopard

At least two: another HU member and I. I received HC worth 35EU less than I paid, another person didn't receive anything apart from rude reply because they dared to complain. There might be others: I don't check HU often enough to screen all messages that appear. Time will tell whether people who are currently waiting for their parcels will receive them eventually.

Marz might be able to answer your question about legal responsibility of the seller. I don't think there is another thing we can do apart from refraining form using this seller for the time being and waiting to see what happens.

Marz profile image
Marz in reply to Kitten1978

Sorry I am not up to speed with the law :-(

Kitten1978 profile image
Kitten1978 in reply to Marz

No worries. I'm sorry: we sometimes treat you like our "HU secret agent" in Greece ;)

leoopard profile image
leoopard in reply to Kitten1978

I really did not have a good feeling when I could not make payment by credit card. I had convinced myself it was because of the Greek finanical situation, clealry I should have trusted my instints on this.

I really resent the way the NHS forces into what are eseentially 'back room deals' with this issue.

Kitten1978 profile image
Kitten1978 in reply to leoopard

Payment through money gram was a pain in the a** but they were reliable until T3 shortage happened.

NHS treatment of thyroid patients is barbaric.

Kitten1978 profile image
Kitten1978 in reply to Kitten1978

That's three members ripped off by the same company so far:

healthunlocked.com/thyroidu...

miglet54 profile image
miglet54 in reply to leoopard

I thoroughly agree, why take our money, and cause £9 bank charge when they can't forsee filling the order?

in reply to leoopard

Can you please share the details of the US pharmacy doing the sustained release please?

Kitti1 profile image
Kitti1

Hi leoopard Sorry to hear your feeling so rotten. My order was recently at Heathrow for just over 3 weeks, according to the tracking system. But did arrive in the end. I hope yours turns up soon.

Unfortunately LAHs you can't buy it over the counter in France or Belgium.

YvonneLink welcome to the forum. Its a great place with lots of extremely interesting information and some very knowledgeable and generous people who can help you out with your questions

YvonneLink as miglet54 says it partly about price. But its also because NICE and RCOP who decide what testing methods and treatment are appropriate for all health conditions don't believe there is any merit in the use of t3 - liothyronine. Although there is significant evidence that says t3 is needed by many patients. That one 'size' doesn't fit all as NICE and RCOP seem to believe.

T4 - levothyroxine is a storage hormone and needs the body to convert it to t3 - liothyronine which is the active hormone which your body needs in virtually every cell of your body. If you don't convert t4 to t3 well your stuffed on just levo treatment. Many people are fine on just levo but many aren't so need to take t3 also to feel well. There's also other people that can't tolerate levo at all and actually makes them more ill.

The standard testing of hypothyroidism only tests TSH snd t4 levels and doesn't look at your available t3 . So the doctors don't even know ( or care in most instances ) whether your converting well. Some endocrinologist do still prescribe t3 but pressure is being put on them to stop this practice. Again because of cost and because it goes against clinical guidelines.

Just testing TSH and t4 is like saying you can't be thirsty you've got a full glass of water in front of you. Patient - but I can't swallow ! Your fine you've got a full glass of water.

I'm on my tablet and can't do links. So I'll end here and start again and do you some links

Kitti1 profile image
Kitti1 in reply to Kitti1

YvonneLink

Here are some links you might find helpful

nice.org.uk/Media/Default/S...

cks.nice.org.uk/hypothyroid...

tpauk.com/main/article/crea...

web.archive.org/web/2010103...

This is just scratching the surface of a very complicated issue.

Ive spent 30 years of my life ( diagnosed at 18, now 48 ) believing doctors I was fine, because they said my test results, for what they were worth, were fine. But I wasn't fine and have become increasingly symptomatic over the years. coping by taking pro plus everyday to be able to cope with going to work. Seriously struggling with my weight. Bad insomnia all my adult life. And have spent the best part of my adult life on antidepressants. I didn't need antidepressants I needed my thyroid treating properly.

Sorry leoopard if Ive hijacked your thread

leoopard profile image
leoopard in reply to Kitti1

I agree Kittie. It used to 'patchy' getting T3 on the NHS, but due to the price issue more and more CCGs are withdrawing support and blaming 'lack of clinical need'. The consultant at my local hospital actually will prescribe it, but my TSH is suppressed so I never get high enough to actually prove what I know - it takes a fair bit of pure T3 to get me feeling well. We'd do a whole lot better if doctors went back to using symptoms to diangose.

miglet54 profile image
miglet54 in reply to Kitti1

One size certainly doesn't fit all when it comes to diabetes, there are quite a few alternatives when it comes to meds for that illness.

Michymo profile image
Michymo

Same thing happened to me and still not arrived

Same day as well I think

Awaiting a replacement and also running low so hope I get soon

leoopard profile image
leoopard in reply to Michymo

It woudl not surprise me if they have lost the whole consignment. The Royal Mail so needs to be renationalised. They used to be the envy of the world.

leoopard profile image
leoopard in reply to Michymo

Have you got them yet Mich? Still waiting for mine..!

Michymo profile image
Michymo in reply to leoopard

No! 😟

leoopard profile image
leoopard in reply to Michymo

I start to get the feeling the International orders are being given the bums rush with Greeks getting priority. Frankly I am wondering if one of our members in Greece has anything to say.

Singoutloud profile image
Singoutloud in reply to leoopard

Do you both have the same tracking number? @leoopard @michymo

When mine and several others were given a tracking number late March / early April it turns some of our numbers are the same. Therefore we are all checking the same parcel that arrived at Heathrow 3rd April. It probably hadnt even been sent until I reported it as a missing delivery with the supplier. I also got the wait a week reply so did and reported again.

Marz profile image
Marz in reply to leoopard

leoopard - I live in Greece and for those of us using T3 it is proving hard to find - even with a prescription.

Something somewhere does not feel right. T3 is not the only medication affected here in Greece. There are many that are very cheap and are being sold on via the internet.

As usual Greece is missing the point and shooting itself in the foot ......

leoopard profile image
leoopard in reply to Marz

No it does not feel right at all does it? Quite what could be causing this is a puzzle, unless it has something to do with the unrest in Turkey.

Marz profile image
Marz in reply to leoopard

I don't think so. Click onto my name then click Posts and you can scroll down to read relevant posts about T3.

Dee188 profile image
Dee188

Who issues the licence to supply in UK I wonder?

helvella profile image
helvellaAdministratorThyroid UK in reply to Dee188

In the UK licences are issued by the MHRA.

leoopard profile image
leoopard in reply to helvella

It seems unlikely that licensing is the issue. I have notived posts from memebers saying they manage to get other brands on private prescription.

Dee188 profile image
Dee188

What is stopping other companies from applying for a licence to supply in UK?

leoopard profile image
leoopard

There is a fair bit of talk about 'licensing' here and GPs often misuse this term, or use it as an excuse. There are two seperate types of legal status for a presecription drug. The first is that it is 'licensed' meaning that it has gone through a process of testing and it is legal to prescribe it, however it may also have 'grandfather status'. Thyroid UK discuss this on their website. Some treatments that had very widespread use and a reputation of safety did not require a licence to be presecribed (e..g NDT, and quite a few old fashioned pain killers) and have this 'grandfather status'.

I am told by my former GP that doctors can be struck off the medical register for prescribing drugs that are lack one of these two forms of legal status.

A second issue is whether NHS doctors are permitted to write prescriptions for it. This can include brands as well as well as drugs but I know far less about this. Perhaps this whole issue might be a good article for one of the admins or Thyroid UK? These retrictions sometimes revolve around commercial deals between bulk purchasing within the NHS and particular companies, or NICE guidelines, seperate restrictions can be applied by local CCGs.

leoopard profile image
leoopard

I thought they were american, (Condcordia) but they are headquartered in Canada..

mercurypharma.org/about

Either way your point is the same, and pretty fair in my view.

Ccuser99 profile image
Ccuser99

Please can you PM me the well known Greek pharmacy? Lol I don't know it and need a new t3 supplier as <online source> have shut down x

helvella profile image
helvellaAdministratorThyroid UK in reply to Ccuser99

If you read the thread I doubt very much that you would wish to deal with the company being discussed.

Ccuser99 profile image
Ccuser99 in reply to helvella

I was hoping the issue had been resolved 😕 It's so hard being in the uk having a conversion problem. My GP won't prescribe t3 and t4 makes me very I'll *sigh*

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