Converting from T3

[helvella]

Anyone in the position of having their T3/liothyronine prescription stopped:

Ask for the doctor to provide an evidence-based protocol for switching from T3 to T4.

There is no reason whatsoever for accepting a straight swap. After all, with quite a number of medicines there are more or less strict tapering protocols to avoid or minimise problems. Why should anyone assume that a straight swap is optimum or without risks - without evidence?

If a doctor continues to insist, it is surely, at the very least, their personal responsibility?

[endomad]

my eno happy to prescribe my t3 as he knows i do not convert t4. It is the hospital and local CCG that are reusing to fund it. So he now does me a private prescription every 3 months which i pay for and fill it in france. My GP was happy to prescribe t3 on my endos instruction and again stopped by CCG.

My MP has been involved who has been brow beating local CCG on my behalf and got another email from them yesterday again refusing. Tbh CCG obviously carry more clout and have bigger baccking than my MP who is shadow health minister!

[helvella in reply to endomad]

I'd argue that the CCG should, in such cases, be the responsible body for providing a suitable evidence-based protocol.

[endomad in reply to helvella]

It has been argued this is their 3rd letter to me and MP, they refuse to budge, they will not fund T3 and everyone will be offered levo as they have evidence that supports t4. They couldnt care less.

For now i will wait to see what happens nationally as i would rather use the energy i have doing stuff i enjoy, i have been fighting the system for 2 years and all it has done is upset and exhaust me.

[Quasarlis in reply to helvella]

******* right on!!! Yes they should!! My endo is a lieing ****!! Even though my Blue Horizon blood test showed me to be a low converter he shpieled out an absolute load of crap about T3 actually being harmful/dangerous and therefore does not recommend its use in combination with Levo T4 .. In my opinion the bloke is s crook who is only interested in keeping his obscene NHS salary by quoting unfounded S**T straight out of a medical book or off a most likely flawed set of findings fabricated by Mercury .. Personally I wished I just punched his lieing nose across his face and accepted fully the conciquences of it!!

[Hidden in reply to Quasarlis]

Quasarlis is that language really necessary?

[Quasarlis in reply to Hidden]

No it isn't, and I apologise ... Just get so annoyed with these so called doctors, specialists ... I had a complaint logged about it too, to which I also apologised ..

[UrsaP in reply to endomad]

endomad ...The thing is you as many others should not have to go this route! The D of H say they help 'people to live better for longer'?? to 'get the treatment they need'??? Really??? If only!

I am encouraging people to contact DofH fill in form and tell them stories and ask them to open a consultation. There is one about the removal of GF foods from prescription, why not T3???

(If they come back and say GF -removal as opposed to T3 -'tightening restriction' tell I'll be telling them 'bull' T3 already banned for some!) If they come back at all that is! Worth a try. If enough of us do this...

doesn't bode well for me getting a response from SHM then - tried emailing him the other day as still waiting for a response from own MP, since 1st April! Despite follow up emails and actually asking here a week ago at a village meeting!!!

[endomad]

my arguement is WHY does it cost 258.00 a packet in UK and 3 euros in france. A recent discusssion with one of my customers who is in house of Lords told me that the EU decided that UK can afford to pay more for our medication which then subsidises other countries like france, greece etc so they pay less. It is an EU decision but obvs the NHS cant afford it and therefore blanket banning lots of meds.

However the prescribng of drugs which can be purchased over the counter cheaper than NHS can buy ie paracetamol, antiacids etc people are insisting on having these on prescription rather than pay 16p in asda! my friend who is a GP said people who dont pay for prescriptions like unemployed etc insist on having over the counter meds free. The flagrant misuse and wastage in NHS would be better investigated than just banning drugs we cant buy over the counter in UK.

[UrsaP in reply to endomad]

endomad there is a journalist looking to do a feature for us. I don't know for sure, but your recent 'discussion with one of (your) customers' H of Lords, may be of interest to him. An interesting point. Can I refer him to it?

I agree if items are cheaper they should be bought over the counter. I've often been told and been happy to buy over counter - only thing really get on Free Prescript has been thyroid meds, or if meds needed for conditions and symptoms caused by thyroid or thyroid meds (t4) Now on T3 rarely need to see Dr for anything but annual bloods.... So much waste - like sending people for blood test/stool samples/xrays/ endoscopies/liver scans.... like they are doing to my 22 yr old who has seen Dr P, who says he has an adrenal issue!!! Will Dr's look at that...despite my history, despite his gran (died last year TC) aunts etc having thyroid/adrenal problems...madness. Waste!

[endomad in reply to UrsaP]

i typed out a full response but it hasnt uploaded arrrgh you can mention it but obvs i cant name my customer as that is inappropriate but it is easily checked by a journalist. x

[Bijourain in reply to endomad]

If it's the EU that determine what price the nhs pays, then maybe when we're out of the EU this situation will be reversed and people who need t3 will get it.

[helvella in reply to Bijourain]

I do not believe this is anything to do with the EU.

It is the UK's government and the UK's NHS which failed to resolved the price paid to the UK's Mercury Pharma (Amdipharm) - even before Concordia (Canada) took over.

As I have said elsewhere, the possibility of pan-European licences would have opened the way for European (i.e. non-UK) liothyronine products to be made available in the UK. The seems very unlikely to happen as Hunt seems to want to withdraw from the European Medicines Agency (even though it is based in London).

[endomad in reply to helvella]

the EPR should have covered this it is suppose to provide a bench mark price across europe it is used in 29 countries which includes switzerland and turkey who also benefit from cheap t3.

There is more to this than we will ever find out as it defies all logic tbh Lord..is more likely to know than us about parallel distribution also covered by the EMA compliance, funny we have not been included in any of the bench marking procedures, which can only be by EU directive, not even a drug company can buck EU directives.

Obvs us minions are not involved in government machinations ours is to do what we are told not to make decisions.

[helvella in reply to endomad]

Could you explain what the EPR is?

[endomad in reply to helvella]

EPR

EPR, also known as external reference pricing or international price comparison/benchmarking, is defined by the European Commission “as the practice of using the price of a medicine in one or several countries in order to derive a benchmark or reference price for the purposes of setting or negotiating the price of a medicine in a given country.”

[helvella in reply to endomad]

You confused me! Isn't that ERP?

[Binkie in reply to helvella]

if you want to contradict the organisation itself, if you read my post it says 'also known as ....'

[UrsaP in reply to helvella]

helvella Did you notice the comment from Concordia on The One Show, that the NHS had not approached them re cost... I was not surprised.

The question should also be did they approach Mercury? If not why not? I feel they have wanted to wipe t3 from market for longer than we know....certainly c10 years ago I was told I was told there was nothing other than T4. Definitely something bigger underneath all this.

[helvella in reply to UrsaP]

Not sure what to make of that. Agreed - perhaps they did approach Mercury Pharma/Amdipharm before they were taken over? There are so many ways to wriggle out of honest and clear answers.

[SilverAvocado in reply to endomad]

I've had GPs insist on prescribing me things like paracetamol, too, both when I've had free prescriptions and had to pay. I got the impression they had no idea how the system worked, or who paid and didn't pay.

[RedApple in reply to endomad]

Endomad,

A recent discusssion with one of my customers who is in house of Lords told me that the EU decided that UK can afford to pay more for our medication which then subsidises other countries like france, greece etc so they pay less.

This makes no sense at all. T3 is manufactured by different pharma companies in different countries. I cannot see how Concordia ripping off the NHS at near £300 per 28 tabs helps Uni-Pharma to sell their T3 for a couple of Euros in Greece, or Sanofi to sell theirs cheaply in France, or Henning to sell theirs cheaper in Germany etc etc.

[endomad in reply to RedApple]

none of it makes sense, we are the only country in EU paying these prices, i certainly trust the advice of a man iv known for over 20 years than i do random politicians and manufacturers or what i read in the papers tbh.

It also seems unlikely to me that someone as lowly as Jeremy Hunt makes any decisions.

[Hillwoman in reply to endomad]

endomad Did your customer in the Lords provide any evidence for their statement about the EU? Frankly, it sounds a bit odd to me, and rather like standard pro-Brexit propaganda.

As for GPs complaining about people on low incomes 'insisting' on having OTC medicines on prescription, this does not, in my own opinion, amount to 'flagrant misuse and wastage in NHS'. People who live in very difficult financial circumstances have no option but to ask for the help to which they are, in fact, entitled. That is also the position of many members of this forum.

We're all trying to address the awful problems of T3 availability on the NHS (I have to source it privately), so please, let's not use a scatter gun approach and fire off in all directions.

[endomad in reply to Hillwoman]

no but i didnt ask for evidence it was just a conversation and i have no reason to disbelieve and he had no reason to make it up (he is not pro brexit lol for sure) it is just one of those things.

[helvella in reply to endomad]

The only "we will pay more" agreement that I know of is where, for example, European countries (including the UK), pay a higher price than poor African countries.

[endomad in reply to helvella]

The treaty of Rome is a cornerstone of EU, it says that any EU country can source any products within the EU, it is the law, prices are bench marked and fixed. So why has no other manufacturer beaten a hasty path to the NHS to supply and why are we not using treaty of Rome to get a better supplier? Why has the EU not enforced their own law, there will be reasons we are unaware of.

[helvella in reply to endomad]

The MHRA appears only to issue licences when a company has applied for a licence. So we are totally reliant on companies making such applications.

I doubt anyone here really knows why no other company has submitted applications (of not had them approved).

We can buy our liothyronine from any EU country (at present) but unless it has a licence it is not accepted as what a pharmacy is expected to dispense. Further, we need things like Patient Information Leaflets which have to be created somehow - not by the NHS.

[Justiina in reply to endomad]

Not true. T3 in Finland costs a lot as well. Not EU decision.

[Jacs]

Can you definitely buy it in France without prescription? I am travelling to Paris tomorrow ... I have heard anecdotally that you can buy in Greece but it seems to depend on where you are - it's not readily available around tourist resorts it would seem?

[endomad in reply to Jacs]

i use to buy it over the counter in france but now have prescription which i take to france. OTT you can only get one box at a time but i live partly in france and they know me. With prescription i can get 9 packets at a time/ 3 months worth, they do not take prescription off me either so i can reuse it!!!!!. I am in rural france, not sure city pharmacist will be so easy but worth a try.

[Jacs in reply to endomad]

thanks. can you tell me the name/brand in French pls? might make it easier

[helvella in reply to Jacs]

Sanofi Cynomel.

[Jacs in reply to helvella]

thank you

[ljk1 in reply to Jacs]

I was unable to purchase any in Calais a fortnight ago, I only had time to try one pharmacy,they were very sweet, looked it up on computer for me,and said sorry scrip only. I think it's a case of take a chance at every pharmacy you see!

[helvella in reply to Jacs]

We have seen very varied experiences reported here from people who have tried. Quite often, "Non".

[Musicmonkey in reply to Jacs]

Bought it myself no problem on Kos. Also know it is available in Crete.

[Gazebo in reply to Musicmonkey]

How does one go about getting it in Greece? Is it available over the counter or is a prescription required? Can it be set up in such a way that one would receive a supply automatically every month etc?

[Musicmonkey in reply to Gazebo]

Hi Gazebo

[Musicmonkey in reply to Musicmonkey]

Oh silly site. Wouldn't let me edit above message.

Gazebo I went to a pharmacy in Kos without a prescription. I did have a packet of T3 with me, purely because of any language difficultis, but there was no problem. I asked for 12 packets. They only had 2 in stock, so they ordered me 10 more which I collected 2 hrs later.

I don't imagine they would be up for posting them. I believe there are laws regulating posting of drugs.

[helvella]

There has only ever been ONE licensed liothyronine in the UK. Originally Tertroxin, then de-branded.

Who do you mean by Actavis? Actavis Generics has been sold off, first to Teva then on to another company. Or do you mean Actavis as in Allergan?

[helvella]

Is that Actavis as in Accord or as in the parent Intas or some other part of Actavis?

Have you ANY other information?

A few days ago I heard a pharmacist asking about levothyroxine dose in milligrams (e.g. 100 milligrams), not knowing what doses it is available in and generally not understanding fully. So I take anything any pharmacist says with a huge pinch of salt.

The Accord website certainly does NOT mention liothyronine in its list of products:

accord-healthcare.co.uk/cat...

And maybe there will be no benefit whatsoever to patients - if there is any truth in the Financial Times story UK competition watchdog alleges illegal drug deal between Concordia and Actavis ?

[Gazebo]

Thanks Musicmonkey and delicious 21. Had you previously been prescribed it so knew the dose? I am in the awkward situation where they did standard test and I was told my thyroid was fine but I knew that not to be the case so had tests done privately and was advised I have Hashimoto's. Took the results to GP who then checked with the hospital lab who advised that they would go with their tests and I should just keep taking T4 so I have no way of knowing what would be an appropriate dose of T3.

[LaurieRose]

How much does T3 cost?

[rosemarie]

i get mine from spain no prescription needed

[Gazebo in reply to rosemarie]

Sounds promising.

Unfortunately, I am housebound so cannot travel to Spain to get it. I have friends who go there fairly regularly on holiday and am thinking of asking them if they could pick up some for me.

Am wondering how you decided on what level to dose at / what dose to purchase. Am thinking of proceeding with caution and that it would probably be best to buy lowest level as can take more of it if it is too low.

Wondering also about the cost of T3 in Spain - what sort of T3 etc?

[ITYFIALMCTT in reply to rosemarie]

Just to say that there are such varying reports on this so it's intriguing. Several members have reported that they have difficulty obtaining T3 in Spain, even with a prescription, far less OTC. And yet your recent experience is that T3 was available OTC.

Whereabouts in Spain did you purchase the T3, rosemarie ?

[Musicmonkey]

Gazebo Just a hint for you. If you want someone to see your post specifically, use the @ sign and their username. A drop down list of names appears and you select the name. I might not have seen your post...

Anyway, I hadn't been prescribed T3 at that time, was in a similar situation to you in the sense that the GP thought I was fine on Levo only. I found out I had a faulty gene causing conversion problems and my free T3 was a bit on the low side, so I decided to self-medicate.

I started on 6.25mcg of T3 and built up slowly while measuring my blood pressure, pulse, early am temperature and weight daily to check for any adverse effects. At the same time I noted any changing symptoms.

I was very fortunate in being able to persuade my Endo to oversee me on my current dose of 50mcg of Levo and 25mcg of T3, although he has fallen short of prescribing T3, I have managed to get a private prescription from my GP in case I need it.

LaurieRose I am going to Crete in June so will replenish my stocks then. Last time I bought T3 in Kos it cost €1.13 per packet of 30!!

[Gazebo in reply to Musicmonkey]

Hi Musicmonkey.

Apologies for delay in reply. Have only just picked up on your post. Thanks for the tip.

Good that your endo is supervising things. Unfortunately, I am not currently under an endo - just the GP and a neurologist.

Glad that you have managed to find a source with such reasonable costs. Hope you continue to have good results.

[Musicmonkey in reply to Gazebo]

Thanks Gazebo

[ITYFIALMCTT in reply to Musicmonkey]

Hi Musicmonkey - I wonder if you'll be able to obtain T3 OTC in Crete or if you'll need to use your prescription? Marz has reported that she had to use a prescription because it's not available in Crete OTC at present (there seems to be a shortage).

[Musicmonkey in reply to ITYFIALMCTT]

ITYFIALMCTT I wonder too. Time will tell. I reckon I might be able to get one packet using my private prescription.