T3 Directive in September from CCG will stop GP's from prescribing T3

T3 Directive in September from CCG will stop GP's from prescribing T3

Hi I am new to here and have just been refused T3 by my GP I spoke to someone from the CCG in my area and they said there will be a Directive in September 2016 blacklisting T3 so that GP's will not be able to prescribe it any more. I have been taking it for 11 years and am feeling the healthiest I have been for a long time but am scared of what will happen once I have to stop taking it also scared about buying on the net in case I end up with something toxic Does anyone know where T3 can reliably bought also If I go back to my original Private consultant what's the chances he can get the NHS to prescribe it for me? thanks in advance

29 Replies

  • If the directive comes I doubt your Endo will be able to prescribe on the NHS. You may have to get a private prescription.

    Others who have had the same happen to them will respond by Private Message of info of where to source.

    It's scandalous that they have to withdraw T3 particularly if it makes us well and symptom-free and they now have a wonderful, wonderful reason for not prescribing and it is the cost of T3 from Amdipharm also known as Mercury Pharma has shot up to an enormous monthly sum. It is the only one licenced to prescribed in the UK.

  • Do you know how much do Amdipharm charge?

  • Somewhere over £250 for 28 tablets of 20 micrograms each.

  • Perhaps we should picket Amdipharm what's the chances of shaming them into submission ?!! Why are they the only suppliers? presumable this is why can charge the earth

  • Amdipharm/Mercury Pharma/Concordia International are absolutely and completely incapable of experiencing shame. They don't understand the meaning of the word. They/their shareholders only understand profit.

    They are the only suppliers because no other company has applied for a product licence. (Rather, none has applied for and been granted - we would not know of failed applications.) Our system works, or rather fails to work, on the basis of individual companies deciding they wish to sell their products here.

  • Big Pharma, in general, is incapable of shame. Our government has given them a pass to steal and often kill.

  • Maybe today or maybe yesterday someone wrote here that T3 pills cost £0.08 each in Greece. Some two pounds a 30-pack?

    Here in Finland some £0,17 each (Norwegian Liothyronin)

    (Well. In US the marketing hype surrounded Levo Synthroid costs almost one US dollar each. Nature Throid NDT only one third of that.)

  • My consultant said that they are encouraged not to prescribe it but if she has a good reason she can. I was swapped over to thyroxine as there is a massive issue getting it but now my hair is falling out and I am experiencing more symptoms I hadn't had for a while so I will ask to get it again if I can. Although I do have a stock of it if I need it.

  • It's essential for me as I'm allergic to thyroxine. I'm going to have to approach my CCG. 'M'

  • good luck I hope you get it I know some thyroid cancer Patients re prescribed at the moment but I'm not sure when in September the Directive will be made or if there will be any exceptions

  • Got my repeat script yesterday so just hope it continues. If I hear any news I'll let you all know. X

  • May I suggest you ask the following question in a new thread - Please PM me with details where to buy Uni-Pharma Liothyronine - T3.

    You will then receive the information. I live in Crete and can buy it over the counter without a prescription for just over a euro. Hence I do not know the website used by so many on this forum to buy T3. Also the Uni-Pharma tablets are 25 mcg - so even more of a bargain !

    My Guest House is free in October if you need to come over and stock up :-)

  • What a fabulous idea! I think you might get quite a few takers and best warn the pharmacies to stock up with T3 lol I quite fancy a visit to Crete. :-)

    I actually bought some T3 (6 packs x 100 tablets) from another UK site someone told me about. Its Tiromel the Turkish one. I'm not actually taking it yet as I had an appointment coming up with an Endo (privately) and wanted to check out all options first and get some support too. But yesterday out of curiosity I looked at the website where I got it from and its no longer listed there, so not sure if they've had a run on it and taken it off or just decided not to stock it.

  • Yes Tiromel is the Turkish one I believe. Ask for the website supplying T3 in a new post - answers by PM.

  • Sorry I wasn't asking for the website, I already have the website details where I got mine from and I at the doses I would take (if and when I start it) I probably have enough for at least 6 months. Was just commenting on the bit about the guest house really. :-)

  • Send me a PM and I can send you the details of the Guest House and the Studio :-) ..... you never know !

  • Ministers have said that anyone who has been determined to need a prescription of T3 should not be denied it on cost grounds alone.Appeal to the CCG and involve your MP. Highlight that cheap T3 is available elsewhere in the EU.

  • I am sorry that you have been put in this awful position by your CCG. They are a heartless bunch.

    My T3 was stopped after 7 years of T4/T3 therapy in Sept 2014. I have since bought my meds online. NDT (WP Thyroid) from Florida and T3 Uni Pharma from Greece. I've cut out the GP's completely as I just don't trust them any more. My CCG didn't want to know and my MP was useless too so I was left with no other choice than to go it alone and buy my own. Just for information, I didn't do well on Tiromel from Turkey, Uni Pharma T3 and NDT work best for me.

  • I wish I had legal expertise and pots of money - the NHS needs to be taken to the highest court in the land for medical negligence on a grand scale, due to the way they deny thyroid patients proper hormone replacement, and the way they have allowed one company to steal NHS funds via T3 prescriptions.

    They also should be made to account for the fact that medical practitioners are unaware of how thyroid hormones work, and yet they treat us on the basis of incorrect information, damaging our health.

    Perhaps the NHS intends to starve Amdipharm/Mercury Pharma/Concordia International of T3 business so that they cease production. Then they could set up contracts with other companies at a sensible price?????

  • Yeah, we desperately need a pi***d off thyroid patient with lots of money. The only language big pharma and CCGs understand is the "money language". If we started suing them right left and centre they would start singing a different tune....

  • Dolphin5,

    Any company wanting to supply medication to the UK has to apply for a licence to do so from MHRA. I've no idea how onerous or expensive it is to obtain a licence but it's clear that European suppliers are not queuing up to supply the UK.

  • No, they don't seem to be, do they. The whole thing is amazingly depressing!!! I find it really unsatisfactory to have to buy an essential drug without a prescription from foreign countries, on the internet. It's truly shameful for a country that believes it has a really good health service!!!

  • The way the NHS is so poorly run is mind-boggling. I'm certain it's heading for a crisis in the near future and we'll all be the ones to suffer. :/

  • There seems to be a line opening up between the need for t3 and the price prepared to pay.

    If the costs of a court case are out of the question and starting a minor war is beyond our means (im right out of horses, armour 😉 And pikestaffs) then either we start producing our own or start an argument crescendo with the aim of Getting the CCG's to acknowledge its on the black list for price reasons only and openly allowing imports of t3.

    There must be 000's of us in the UK on t3 and there are studies showing its efficacy, not least the studies from the pioneering efforts of the 19th century Drs who first isolated thyroid hormones. Perhaps 000's of letters written in support of t3 to include copies of those studies is out of the question? All posted on the same day?

    I'm finding it truly awful that in a first world nation we seem to have acquired fifth world thinking medical bureaucrats. With apologies to the fifth world.

    I have other medical issues being dealt with separately, but I'm finding that each issue is connected in some small way. The implication is that none of the other medical problems can be treated properly.

  • I will die because of this freaking disease. Not of it; but because of it. When I'm (hopefully) old and (regrettably and unknowingly) enfeebled and parked in a home because my hubby's gone before me ( please, no) there'll be no trips to Greece for sunshine and T3. I'll be left on levo, my supplements won't be bought anymore and even if they were, they'd be confiscated as a 'choking risk' . I'll be left to rot on a 'medicine' which doesn't work at all for me. Just left me getting heavier and in more joint pain than I care to remember - and miserable as sin to boot.

    Had anyone told me, prior to my diagnosis that in this first world country, if I didn't respond to T4 monotherapy this is what I would be staring in the face, I would have laughed myself sick with incredulity.

    Laugh today, today is brief. I'm not a religious person and don't believe in heaven. But the attitude of almost every so called expert involved in this debacle fuels my desire for a seventh circle of hell into which these inhuman miscreants will be cast for eternity. Not that I' m bitter. :X

  • So if you are about to get your first prescription of t3 via endo is it likely GP will refuse it? If I get a private prescription how much would it cost??

  • I think we need to look at this with some clarity. First of all T3 liothyronine is a licensed medicine and as far as Im aware it can be prescribed under NICE guidelines for the treatment of thyroid conditions?

    That being the case, NICE write guidelines not directives. Each CCG can start to dictate what drugs each will allow their individual GP's can prescribe due to cost, but given that cancer drugs are FAR more expensive then T3, then I doubt a wholesale ban across the country can be established.

    eghjm100 you need to go back to your CCG if it is they who are directing this and if not your GP and say if the directive is not yet in force I want my prescription for a NICE approved and licensed medication and if you don't give it to me I want you to write on my notes why you are stopping it and that you personally are taking full responsibility for anything that happens to me as a result of stopping this medication. Then you ask for a meeting with your CCG and you say the same.

    if everyone does this then the CCG's will be flooded. The CCG's were set up to give patients MORE choice over their health choices not less and they need to be remind of that. GP's are being bribed by their CCG's because of the budgets that are being reduced but if you put enough pressure on them, (because at the end of the day they are responsible for your health not the CCG's) they will cave in. Remind GP's of their oath to do no harm and also remind them that they are putting money before your health.

    Those of you that have been to your MP's, you need to go back if your GP and CCG absolutely refuse to budge and sit in their surgery and tell them all of the above. Ask them point blank, ARE YOU GOING TO FIGHT FOR ME? Try and find out if the CCG are still funding medications that are more expensive then T3 and ask why they are prepared to do that. They have to be able to justify stopping medications to patients especially if they are still funding more expensive drugs and tell them by stopping your cheaper drug its a false economy because you will end up becoming more ill and needing more care and more medications.

  • Thanks so much for your advise am in the process of doing it and have met with a rep from my CCG who has sent me this reply I have taken out any identifying names as there is a warning on the bottom of the letter stating it is unlawful to sent it to any other party :

    Thank-you for meeting me last Friday and explaining your past medical history which led up to you being prescribed liothyronine tablets.

    I have had a conversation with my manager and I have been informed that the Individual Funding Request route applies to drugs that are Payment By Results excluded (outside of normal payment for services which NHS Providers receive) and for ********* ********* Priority Committee statements. Unfortuately liothyronine tablets don't fall under either category.

    The Effective Prescribing Performance Committee liothyronine statement is due to go to the CCG Quality Committee end September.

    I appeciate this is not the outcome you were seeking. If you would like to discuss this further, please speak to Dr ****** and I have already given you the address of PALS, should you wish to make a compliant to the CCG.

    So if you can make head or tail of this I would appreciate a translation.

    As for being persistent I was in floods of tears in my doctors pleading with him I had photos of me before and after with blood test results trying to reason with him apart from staging a sit in in which case I feel sure he would say I was causing a nuisance and have perfect grounds to take me off his register

    I will pursue all the above and am going to pay to see the original endro who put me on T3 10 years ago not sure what he can do but am exploring everything. Thanks everyone.

  • This sounds so familiar. I am sorry to sound negative, but I just kept coming up against a brick wall with CCG, Endo and GP. I tried numerous times throughout 2015, but to no avail, they were not budging.

    For me self medicating with internet bought NDT and T3 took away all the anxiety I had felt trying to persuade these people to give me the T3 that I need to function and lead a full life.

    Since accepting that this is the situation I have to live with, I now feel very liberated. I answer to no one and am no longer held hostage to their blood tests/ upping and downing my dosage. I am in control of my own health.

    I do wish you luck, but don't dispair, many people on this forum including me take T3 bought from the internet. It is a disgraceful situation, but at least we have another option.

    Best wishes

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