Article on T3 pricing and NHS abandoment

[Hypo101]

Article on ridiculous price of T3. Might as well die....Though lets face it that;s what they want.

[Pamboz]

Yes, I have had my prescription rescinded as well and told to go back on T4. Fortunately I can buy it online for 10€ per month.

[Holly10 in reply to Pamboz]

Hi, could you let us know where you get the T3 from.

Holly

[chorkie in reply to Pamboz]

Hello Pamboz Can you please tell me where you are buying your T3? It could be a lifesaver as I don't think I can go through all this again.

[Pamboz in reply to chorkie]

Uni-Pharma manufactures what I believe to be a good product 25ug tablets. Available via mail order or over the counter in Greece and some other countries.

If you do a Google search you will find plenty of suppliers, just go through until you find the cheapest price. They go down to 10Euro per pkt with 10 Euro postage for order.

[Hypo101 in reply to Pamboz]

I've ordered some. ATm I'm on 100 of thyroxine. last results showed TSH just above 1, free t4 23 (overrange by 1) and no T3. Should I drop my t4 to 75 and then cut one T3 pill into 4 and take one in morning and one in evening.

[health2015 in reply to Pamboz]

Hi Pamboz

can you please tell me where you order your T3 from for 10 euros a month?

[Hidden]

I guess I will be next very soon as on armour and t3 on the nhs, I dread going to doctors and hospital every time for this reason...

[Airmed]

I am sorry to hear that you have had your T3 NHS prescription removed and others are stressing including me about our future scripts. Have you contacted your MP and Sarah Wollaston (Chair of the Commons Health Select committee and retired GP, [e-mail]) If not I urge you to do so. We need to be very proactive at the moment since T3 and other obscenely priced medicines are in the media and try to secure our current and future need of T3. I will continue to fight and lobby anyone who will listen (my dog pulls his blanket over his ears now so need another audience😂) through the courts if necessary for my right for T3 on NHS script.

Don't forget minister views are that T3 cannot be withdrawn on cost alone ask them to contact your GP if nessesary.

[Musicmonkey in reply to Airmed]

Airmed I have written to my MP and Sarah Wollaston MP. I think you are right it is good to strike while the iron is hot!

[Pixielula in reply to Airmed]

Hi aimed...... The problem seems to be with the CCG's rather than GP's. My GP was happy to prescribe it my endo was happy to prescribe it but my CCG said no, my GP wrote to support my claim for funding my endo wrote to support my claim for funding but my funding was denied anyway. CCG's seem to know more about what's best for me than the medical profesionals who are actually looking after me. The whole situation is a complete joke, the problem is my CCG are not going to say they are refusing my application on the grounds of cost! They fudge around and say it's because liothyronine is not prescribed for long term use just hypothyroid episodes!! And my situation doesn't prove exceptionality!!! What chance do we really have when your own Dr states your need for the medication your own endo states your need for the medication, and the CCG ignores all that and declares, actually your not exceptional and you can get along fine on levothyroxine.

I still say we organise a protest and march on Downing Street!

[helvella Administrator in reply to Pixielula]

Sort-of, theoretically. But who are the members of the CCGs? For one randomly selected CCG:

Dr Steve Ollerton (Chair) – GP representative and Clinical Leader

Dr Jane Ford – GP representative and Deputy Clinical Leader

Dr Chris Beith – GP representative

Irving Cobden – Secondary Care Specialist Doctor

Dr Ramesh Edara – GP representative

Dr Anuj Handa – GP representative

Dr David Hughes – GP representative

Dr Matthew Kaye – GP representative

David Longstaff – Lay member leading on audit, remuneration and conflict of interests

Priscilla McGuire (Vice-Chair) – Lay member leading on Public and Patient inclusion

Carol McKenna – Chief Officer

Angela Monaghan – Registered nurse

Lesley Stokey – Acting Chief Finance Officer

Penny Woodhead – Head of Quality and Safety

greaterhuddersfieldccg.nhs....

Definitely overwhelmingly GPs and other medics.

[Pixielula in reply to helvella]

In that case I really don't understand how my own GP and endos recommendation can be ignored by other GP's, by my reckoning the endos endorsement should have been enough, basically the CCG are saying they are wiser than my own dr and my endocrinologist. Unless of course they admit that it has nothing to do with what is best for my health, and everything to do with what is best for the county's budget. It sucks.... I am so peed off with all of this

[Airmed in reply to helvella]

And how many of those need T3. None I suspect they should all be struck off in my view as they are in breach of their Hippocratic Oath.

[Airmed in reply to Pixielula]

Sorry to hear this pixielula. Have you written to your MP and to Sarah WollastonMP? The CCGs are hiding behind their own views rather than actual data, we all know it's about money. Which CCG do you come under. We have seen further avarice exposed in the press recently and I'm sure if the tree keeps being shaken there will be much more to come. It seem everyone has their snout in the trough. I am currently awaiting response from Sarah Wollaston who happens to be my MP as well. If this is not satisfactory I have been given the name of a law firm who may be interested in a class action or on I will do it on my own. Count me in for the March though.

Pixielula when were you given this news. CarolineAnne posted that she went to her GP last Thursday and was refused T3, went back to GP Friday the next day as running out of meds GP checked her screen and said it was now ok and prescribed it. Will check post

[Pixielula in reply to Airmed]

Yes Somerset, I got a phone call from a receptionist two weeks ago to say my GP can no longer perscribe it for me, my appeal against the original decision failed. But I have been fighting this battle for a year. Ever since moving to Somerset. I have a fair size stash so am using that whilst considering my options....... But I really just want to do something or scream at someone as it is totally unfair. I have been on T3 treatment only for about 10 years now. It is completely shite to be in this situation, if I went back on to levo the first thing I would have to do is give up work, the next probably make my funeral arrangements.

[Airmed in reply to Pixielula]

I have been taking it for two years and feel the same way as you do. Not only with the dreaded symptoms returning but the injustice too. It may be worth another call to your GP to see if any changes at your surgery. I don't know where CarolineAnne is based but it was Thursday she was refused T3 and Friday a script was given. I was rather hoping the powers that be had done something.

[Pixielula in reply to Airmed]

Do you know how I find that post? I have been on hol for the last week with no internet, a weeks worth of post to look through is a lot!!!!

[helvella Administrator in reply to Pixielula]

Pixielula,

You go to the list of members. You type "CarolineAnne" in, you select the member and view her profile. Latest new post by her is this:

healthunlocked.com/thyroidu...

[Pixielula in reply to helvella]

Omg this is so embarrassing..... Where do I find the list of members?

[helvella Administrator in reply to Pixielula]

Click on My Communities and choose Thyroid UK.

Click on Followers:

Posts Polls Followers

Scroll down to and click on View all members.

Or follow this link:

healthunlocked.com/thyroidu...

[Pixielula in reply to helvella]

Thank you..... You wonderful person I did it.............

[Airmed in reply to Pixielula]

Pixielula have you considered talking to the Daily Mail. Email your story over to them. They might be interested as they have been sympathetic to thyroid sufferers in the past. With all the Pharma exposure stories flying about they may well do. If you have been on hols you may have missed all the commotion (have a look at my profile I reported on as much as I could) Now really is a good time to contact your MP and Sarah.wollaston.mp.@parliament who Chairs the Health Select Committee.

[Hidden]

I only started on T3 a few months ago. I did notice a big difference for a while but things have reverted when the private endo and I decided to drop my Levo by 25mcg every other day. As the lab refuse to check my FT3 and my TSH is supressed the GP practice are saying they aren't prepared to prescribe it for me anymore as they can't monitor me on it. I got all this guff about their concern being for my welfare but my GP made it clear that she agreed with me that it's really all about money. She isn't a partner and doesn't make the decisions but said that a locally based NHS endo would decide

I told her that I had a choice which was to either source it myself online or not take it anymore. Probably I will plump for the latter and see if it makes any difference before sourcing stuff online myself. She was a bit shocked at this because I think she was hoping I would pay for it myself through private prescription! 🙄

[mmatrina in reply to Hidden]

This is all so surreal. How can a lab have the right to refuse to do T3 monitoring tests ordered by medical practitioners? And how can the medical practitioners then refuse to supply T3 because the labs won't monitor it? My daughters locally based endo had been told by the CCG he couldn't prescribe on the NHS so beware!

Do they really think we can't see through all this?

[Hidden in reply to mmatrina]

It really is surreal. I had my thyroid bloods taken again yesterday and asked the phlebotomist to write that my endo has expressely asked for my FT3 to be taken. If my TSH is still under the range and my FT3 is high or over the range then my private endo will probably take me off it and this I will completely accept because I trust him - he's a thyroid expert. So it's in the GP's and lab's interest to concur!

But if all is within their ranges this time, as I'm hoping, or if the lab still refuse to run it, then I will fight to continue to be prescribed it with all my might. I think it's the dishonesty of the medical profession I object to most here. They pretend it's all about patients' health and wellbeing when actually it's all about cost.

I didn't meet the full criteria for the really expensive RA drugs but they just told me straight that this was mostly money related. Fair do's - my RA is mild anyway and I'm too allergic to want the risk of potentially dangerous drugs unless I feel I really need them. But a thyroid hormone replacement should be affordable and a basic right on prescription for those with hypothyroidism who need it. End of!

[Hidden]

Ps my private endo pointed out that it is only this expensive because it's so under prescribed. If they refuse to prescribe it for me then I will write to my MSP

[Treepie in reply to Hidden]

Its a niche product with small sales so has been under the radar .Will have smaller sales as CCGs stop GPs prescribing it.

[Margo]

I don't believe that want us to die Hypo101, I think it is to keep us unwell so they can give us statins, high blood pressure tablets, PPI's, anti-depressants to support the pharmaceutical companies profits.

[serenfach]

If it is so difficult to manufacture, how come other countries find it so easy that their prices are so much lower? No, AMCo, you lie - it is profit for you or ill health for us.

[helvella Administrator in reply to serenfach]

If it is so difficult to manufacture, how come it arrived on the market about 60 years ago? Before the days of the immensely sophisticated chemistry equipment of today? No mass spectrometers (at bench level), no computerised equipment, no tandem chromatography, no immunoassay techniques, ...

Further, AMCO don't make it themselves. That is done by a manufacturing company. If they cannot do it, AMCO should take their custom elsewhere.

[BootsOn in reply to helvella]

serenfach and helvella you beat me to it! AMCo have exposed themselves as liars. Can't say I'm surprised.

[Airmed in reply to BootsOn]

I wrote to Billy Kenber and said same!

[mmatrina]

I also would like to know where you get your T3 from and whether you it seems to be good quality. (I have also sent a personal message to you). Both I and my daughter rely on T3 to keep us well. It transformed my life after decades of illness. How is it that the NHS didn't pick up on a price rise of around £17 million pounds for the same thing in just six years? And how is it they can withdraw T3 to make up for their mismanagement and cause so much suffering, loss of work and earnings, and extra cost to the NHS and benefits system? It makes me so sad that the situation just seems to get worse not better and I see people going through what I experienced for so long. I agree we must make our voices heard and will write to my MP today.

[ren41]

How has it become more difficult to manufacture, and why were they able to do it so cheaply a few years ago? Clearly if there is a direct correlation between price and level of demand then things can only get worse as GPs and endos refuse to prescribe.

[Airmed in reply to ren41]

Seems somebody is trying to dig themselves out of a hole. I think they have buried themselves. If I were AMCo I would invest in a better PR machine as well as technical staff!

[Eddie83]

More Newspeak. Health insurance companies and national plans like NHS use the word "capitation" rather than the word "death".

[Hypo101]

Written to my MP and waiting for reply. I was going to make a complaint to guys right at top of nhs but don't know how to go about that.

[Airmed in reply to Hypo101]

Great Hypo101 write to Sarah Wolloston too, [e-mail] I'm sure those at the top of the NHS are in the hot seat right now and she will be seeking answers. Keep up the pressure and hopefully we will secure our current and future T3 needs

[Hypo101 in reply to Airmed]

Will do thank you!

[Hypo101]

Well just spoken to someone who represens the my mp and that was waste of time

[CarolineAnne]

Ha! Was just reading through this post and saw my name mentioned. I am still getting my t3 on repeat every month. I am in the West Midlands area. Every month when I go to pick up my prescription I expect to be refused but I have not had any problems. I'm thinking that perhaps it hasn't come to the local authority's attention yet.

My Endo is supportive and my GP who I have known for 20 years is a very fair doctor, who will listen to a reasonable argument. Also, they have both seen that I had been bedbound and not able to walk. I don't know if that makes any difference.