T3 Directive in September from CCG will stop GP... - Thyroid UK

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

eghjm100 profile image
31 Replies

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

31 Replies
shaws profile image
shawsAdministrator

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.

eghjm100 profile image
eghjm100 in reply to shaws

Do you know how much do Amdipharm charge?

helvella profile image
helvellaAdministrator in reply to eghjm100

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

eghjm100 profile image
eghjm100 in reply to helvella

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

helvella profile image
helvellaAdministrator in reply to eghjm100

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.

Patricia18 profile image
Patricia18 in reply to helvella

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

welliec profile image
welliec

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'

eghjm100 profile image
eghjm100 in reply to

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

in reply to eghjm100

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

Marz profile image
Marz

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 :-)

in reply to Marz

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.

Marz profile image
Marz in reply to

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

in reply to Marz

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. :-)

Marz profile image
Marz in reply to

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

Treepie profile image
Treepie

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.

Pookie50 profile image
Pookie50

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.

dolphin5 profile image
dolphin5

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?????

Kitten1978 profile image
Kitten1978 in reply to dolphin5

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....

Clutter profile image
Clutter in reply to dolphin5

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.

dolphin5 profile image
dolphin5 in reply to Clutter

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. :/

linda96 profile image
linda96

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.

Rapunzel profile image
Rapunzel

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

misslissa profile image
misslissa

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??

eghjm100 profile image
eghjm100

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.

Pookie50 profile image
Pookie50 in reply to eghjm100

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

thyroid555 profile image
thyroid555

Hello Everyone,

Happy day today, I got some T3!

My Pyschatrist prescribed it and Pharmacist managed to get it in. On the box it says the Manufacturer is Morningside Healthcare

Thankyou for all your help and advice on her. I have sent an appeal letter to the CCG with quite a bit of evidence eg, BTA guidance, NHS England Consultation re: primary care, General Medical Services Contract and NICE guidelines.

I sent this to my MP also.

I have also sent a letter to my Endo saying he needs to support me to apply for T3 and say I have a clinical need for it. T3 was given to be 16 years ago by an NHS Endo and I was on it for 16 years. That Consultant then retired. I have seen two new Endo's that were sympathetic and said they felt T3 could help some patient's, however one of them simply said the GP had to do the Individual Funding Request.

Basically my GP did it and my Pyschiatrist added information to it.

I really feel that Endo's should be playing a much larger role in this process as my Endo hasn't written anything to support my application and hasn't said that I have clinical need for it, he just says only GP's can do the application which I think is unfair as on the whole most Endo's should know more about the thyroid than most GP's.

What have your experiences been?

Have any Endos being writing a supporting statement to go with the IFR? I feel this is maybe a deliberate process by the CCG. Is there anyway we can campaign for it to be mandatory for Endo's to contribute to the IFR and explain how a person has improved etc on T3.

I asked him to be part of the process, he checked with the Head of the Department (a lady I have met that previously didn't like being on T3) and he came back to me saying they could have no involvement in the application! It just feels they are all washing their hands of it and don't want to know.

I have signed the petitions on here and done the NICE Survey, quite basic would be good for more space to write in depth, but will email my story as mentioned soon.

I am going to get the D102 test done and see what the result shows, as if positive it may help my case. I just wondered what people's experiences are of having this test done, is there anything particular you need to do or just do the saliva sample, you don't have to come off your medication to have it done? Is there anywhere else that does the test also, apart from the Lab in Surrey?

Wishing you all well on your journey. Best Wishes,

eghjm100 profile image
eghjm100

Well done yo, I know it feels like a marathon and your in a constant battle but giving up is not an option!! Hope this positive message gets through to the negative posters Keep trying I did look at the IFR but was told it would not apply to this sort of thing my endo is reluctant but still prepared to prescribe, my GP not happy because of the cost to his budget and since my CCG not yet advised GP's in this area to refuse prescribing they told him he has to carry on prescribing T3 for now so still on a knife edge! good news is that there are now others such as Morningside licensed in the Uk so this should bring down the price AGAIN WELL DONE

thyroid555 profile image
thyroid555 in reply to eghjm100

Thankyou bless you! It does like like such a marathon and a battle! Yes giving up is not an option! I am pleased your endo is still prescribing it, but it must be hard feeling on that knife edge and what will happen. Do you know of thyroid ok keeps any statistics on how many people in certain areas are on T3 or have been on it in the past? It would be interesting to know the numbers and there must be lots and lots of us affected. I wish you the very best and hoping for a good outcome with the consulation

eghjm100 profile image
eghjm100 in reply to thyroid555

I think it would be a really good idea to have a register of all T3 users

good luck

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