#T3 #liothyronine on blacklist

[levelslass]

Just had letter from GP to tell me I can no longer have T3 as well as T4 but I can buy it privately from surgery. I'm on benefits and can't afford it at £100 a bottle. Has anyone else come across this problem. I need T3 liothyronine. T4 levothyroxine doesn't work for me by itself. I've seen articles in the press about the millionaire manufacturers of generic T3 who are ripping off the NHS. Any suggestions on way forward with this appreciated

[lynmynott Partner Thyroid UK]

Hi Levelslass,

Do you mean paying £100 for Concordia T3 from outside your surgery or do you mean that your surgery's pharmacy can access it for £100. Concordia T3 is about £258 for 28 tablets now so I'm wondering if your surgery can access it from Europe.

[levelslass in reply to lynmynott]

Hi Lyn

Wrote to GP and attached British Thyroid Association Executive Committee Dec '16 advice to members on prescribing T3. Then we had phone consultation where I told him I had made complaint to Competition and Markets Authority using philip.mccormick's email address I found on your site. Had general reply from him saying will be passed to pipeline team.

GP has spoken to endocrinologist at Musgrove Park Hospital, Taunton and have appointment with her. Will try to get Independent Patient Funding. Was advised to apply for it by PAL advisor based at CCG.

Also was given name by GP when I asked of Medicines Manager at local Clinical Commissioning Group (CCG). Spoke to her. She emailed me document which allegedly showed why the Royal College of Physicians are recommending cut back to T4 only, despite the clinical trials cited at the end which clearly show a conflict. ie some trials show T3/T4 combination therapy does work and some don't but RCP have chosen to ignore this. Also British Thyroid Association paper is very clear that cutting back on T3 for some patients can be dangerous and such a decision should be based on clinical need not finance. Do you think we should be lobbying BTA to do more?

We all know it's a scam. Just come back from Crete with Uni-Pharma 25 mcg x 30 tabs for 1 Euro 15 cents a pack as back-up in case I don't get IPFunding. But as I have seen elsewhere on this site Uni-Pharma have been inundated and there is a supply shortage in Greece.

[levelslass in reply to lynmynott]

Sorry in case anyone doesn't know. If you are taking Uni-Pharma 25 mcg x 1 daily and splitting the dose the pharmacist in Greece said dissolve under tongue.

[jimh111]

The GMC doesn't have a role in this, although they might if a doctor is refusing but offering to sell. This is controlled by the local Clinical Commisioning Group (CCG).

You can make a complaint about the refusal to prescribe based on cost rather than medical grounds. The BTA has issued a supporting document british-thyroid-association... which you can take along. Make a nuisance of yourself and insist. If that doesn't work try to get your MP involved, although you will need to see them rather than write a letter.

[UrsaP in reply to jimh111]

Hi jimh111 would the reply I had from the CMO giving the guidelines that existing patients should continue to be issued if beneficial, hold any clout here?

Will MP respond now parliament is dissolved? I'm still waiting for a proper response from mine since April 1st - had a referred to health ministers office 12th, after resending email on 11th, and even after chasing and speaking directly to MP on 21st , and yet another email sent Mon, (BH) got a response - sorry you have not heard back, as parliament now dissolved....blah...blah... Avoidance tactic methinks!

[jimh111 in reply to UrsaP]

CMO? Chief Medical Officer? This should carry clout, although ultimately the local CCG decides on priority regarding spending. The CCGs are under the illusion that stopping liothyronine saves money.

[UrsaP in reply to jimh111]

jimh111 Yes to CMO and thanks. That is what I had hoped. Worth a try for levelslass and other people who are being refused? I posted a copy of my response on here, a few days ago, for people to refer to. Might need it myself this coming week - when I get blood results !!

[Clutter in reply to UrsaP]

UrsaP,

Parliament isn't dissolved until 20th July.

*Edited - just noticed your post was 2 months old.

[Clutter]

Levelslass,

Has your GP practice said why they are withdrawing your Liothyronine prescription? If they are prepared to sell it to you privately it sounds as though it is being withdrawn on a cost basis in which case you should be able to appeal the decision and ask for Liothyronine to be reinstated. Copy your MP on any correspondence with your GP practice and CCG.

The BTA has issued guidelines to GPs, patients and endocrinologists about switching T3 british-thyroid-association...

You can buy 180 x 25mcg Greek T3 for around £35 and 100 x 25mcg Turkish T3 for £21 which is substantially cheaper than the £100 per month your GP will charge you privately.

[ITYFIALMCTT in reply to Clutter]

Thank you for the price information - I had a nagging feeling that my MIL, BILs, and OH were paying a bit over the odds and was dreading the day more family members ('next generation') might need it..

[levelslass in reply to Clutter]

No what he said was he could write me a private prescription then it would be up to pharmacy at surgery to source I presume or me to find at Boots etc. But GP also said what I was on T3 - 5 mcg x 4 daily (plus usual T4 50 mcg x 1/25 mcg x 1 daily) made by Sigma Pharma was even more expensive than £258 Mercury Pharma 20 mcg x 28 tabs which I split with tablet splitter. So daughter took me to Crete and picked up some Uni-Pharma as back up in case I don't get Independent Patient Funding (recommended by PAL advisor).

[Clutter in reply to levelslass]

Levelslass,

Good luck with getting independent patient funding. If you need more t3 in the meantime write a post asking for online sources to be sent via PM.

[greygoose]

If he is buying T3 from Greece or somewhere, and reselling it at £100 a bottle, then he is profiteering, and I don't think that's legal!

[greygoose]

Well, in Greek pharmacies, yes, but it's still being manufactured, I think. But, that was just an example. Turkey, if you prefer.

[UrsaP in reply to greygoose]

My pharmacy get me TH from Germany? I don't know how this compares price wise, other than A N Other gets it on private prescription and I think it is costing her c£200 think for 28 tabs... Forgot to ask pharmacist yesterday when I picked mine up!!! Will try and catch him during week.

[greygoose in reply to UrsaP]

I really can't imagine that Thybon T3 costs £200 for 28 tablets. It would be about €3 in France.

[Clutter in reply to greygoose]

GG,

100 x 20mcg Thybon is €30.15.

[UrsaP in reply to greygoose]

greygoose I'm not 100% sure it was 28 tabs - chemist just held up box said the other lady was paying about £200 for it. Could have put more tabs in box I suppose. Think he was trying to make me feel guilty about still getting t3 when others aren't...as if I don't already!! That said, if I had been offered treatment at the age of 19 as I should have been, I might not need T3 now at 55!

[greygoose in reply to UrsaP]

No need to feel guilty. None of it is your fault!

[UrsaP in reply to greygoose]

greygoose Clutter suspect then that the £200 may be for more than 28 tabs. And it may be private prescription costs...still not seen main pharmacist to ask him...

[greygoose]

Canada? You can't buy T3 in Canada without a prescription, I don't think. I don't even know if they have T3 in Canada. They don't in all countries.

[greygoose]

Yes, they do have Cytomel on there, but it's prescription only.