T3.

[Airmed]

Although I am still getting T3 on prescription I am really concerned that it is going to stop soon after reading some of the messages. This fills me with absolute horror as I know what I have got to look forward to on T4. Please can someone PM me as to where I can purchase T3 from. I noticed someone was purchasing from Haldikiki. If you are reading this post could you give details please. I fully intend to try and get private funding as I believe I and everyone who needs T3 should be able to get it on the NHS. But I need to source a supply of T3 in the interim. I haven't really looked into this yet but couldn't all T3 users get a class action going and sue the NHS for withdrawing life giving/saving medication. I have a letter from my endo that states "whilst my blood tests are abnormal, they are not in range,  I am more euthyroid now than I have been since thyroidectomy whilst Taking T3". I am sure that many more have similar stories. What about NDT is that worth trying. I am just so annoyed, I got my life back after 5 years and now some stupid feckwit who wants to save money can do so with the slash of a pen. Once my supply is stopped I too will use my MP and the press. This is scandalous and I really do believe is a criminal act. Thank you for any help/advice it would be greatly appreciated.

[humanbean]

Does the UK legal system allow for class action law suits? I thought they were a strictly US thing? Any lawyers reading this?

[Airmed in reply to humanbean]

Apparently yes according to the FindLaw website.  It is also referred to as  group-action litigation. 

[humanbean in reply to Airmed]

Thanks for the info. I wouldn't have a clue how one goes about starting off such a thing.

[Airmed in reply to humanbean]

Neither do I but am very willing to learn. Hopefully there will be a lawyer out there willing to take on a class/group action case on a no win no fee type basis. After all we are not looking for financial compensation we just want a safe and secure supply of T3. He/she can sue NHS for their costs. Everyone happy. You are so right any Lawyers advise would be very welcome.

[shaws Administrator in reply to Airmed]

If you read a few earlier posts about T3 etc. you will see most agree that it is horrendous that T3 will be withdrawn.

Why is it that liothyronine can be legally prescribed and the people who should know best are those that get well by taking it. Not by some whose main knowledge is -"they do not have a dysfunction of their thyroid gland" - "are unwell on levothyroxine". Deny that patients can recover with liothyronine  and believe the fairytale that TSH alone dictates whether/not thyroid hormones should be prescribed but not liothyronine the only ACTIVE hormone in our body and it should be withdrawn.  WHY! - have they listened to and maybe profited through Big Pharma.

[Airmed in reply to shaws]

Hi Shaws, it beggars belief. I am a tad happier now. Have found a Cynomel supplier in France 2.75 euros per pack of 30. The NHS supplies me with 2x28 T3 GENERIC tabs per month.  I have read 28 tabs cost in excess of £250. Instead of withdrawing T3 someone in the NHS should be doing their job and negotiating a realistic price, those people responsible for this price should be sacked. I will point this out when I go and see my MP. This isn't rocket science this is business. Oh I forgot, it's the NHS. We should also urge more UK clinical trials with existing ROW licenced T3 products so a UK licence can be obtained. Therefore one company wont have a monopoly in the UK. These trials should also cover/prove (using the correct cohort) once and for all that T3 is not dangerous for people who need it and one size doesn't fit all. In fact, I know that T4 therapy actually does harm me in more clinical ways than I will ever understand. That being the case I would rather take my chances with T3 (which has little data to support all the scary stories the endos and doctors come up with) as I feel so like my pre thyroidectomy self.

[shaws Administrator in reply to Airmed]

Especially having a thyroidectomy, it's much worse than a struggling thyroid gland. One poor woman, a few months ago could take no more after years of struggle and committed suicide, addressing a letter to the coroner about her reasons for doing so.

tpauk.com/main/article/jacq...

T3 for me made an enormous difference to my life and I have a thyroid gland. 

[Airmed in reply to shaws]

That is so sad. I hope her family sue the pants off the NHS for not treating her with the correct meds. Not necessarily for money just to bring her plight and thousands more like her into the public domain.

Shaws I often laugh (almost hysterically) when I first met my endo/surgeon her line was. "Don't worry we will whip that out and you will be as good as new" 

Really, there must have been somebody stood behind me she couldn't have been talking to me!

[shaws Administrator in reply to Airmed]

You made me laugh too. 'just whip it out'. That must have been a shock for you.

I mean, they do not explain what it's effect will be because they haven't a clue what it is to be deficient in thyroid hormones and levo doesn't work.

[Kazza8 in reply to Airmed]

Hi, can you give me details of the supplier in France please.

Kind regards

[Airmed in reply to Kazza8]

Hi Kazza8,

You can buy T3 in most pharmacies in France but I believe you need a prescription. I have heard that some pharmacies will supply without but you would have to visit lots as you would probably only get 1 pack. I live in the South close to a ferry port and am planning to go and see an English speaking French doctor at a cost of approx 23 euros once my NHS script is cancelled. Explain my situation and hopefully get a script for 12 months supply. Doctors in France are not allowed to advertise but if you Google English speaking French doc in the area you are visiting am sure you will find one, maybe on an expat site. I still fully intend to fight the NHS for my right to T3 though. This is just my favoured back up plan as the T3 is branded. Have you had you T3 stopped on the NHS? I hope this helps. Keep well.

[marigold22 in reply to humanbean]

I studied some law but had to quit due to being on T4 when I needed T3.  First step would be find a mega good lawyer.  There's a high flying medical negligence lawyer in Birmingham (Irwin Mitchell), would have to write every single aspect down, then let them decide if they could take on the case on a no win, no fee basis. 

[Airmed in reply to marigold22]

Hi Marigold22 so sorry you lost your chosen career because of thyroid issues. I haven't had my T3 taken off me yet. But as soon as I do I fully intend to to take this matter as far as possible. I will  post when this happens and see if a bunch of us could write our stories and I will send them to the lawyers you suggest and go from there. I was mortified to learn yesterday that for 2.75euros I could buy 30 day supply of BRANDED T3, albeit I need a prescription (I'm sure that won't be difficult will post). That is less than a prescription charge. Someone one in the NHS pharmaceutical buying dept is clearly not doing their job and I think there should be an enquiry into this too. How many more drugs are we paying too much for I wonder. I am also going to contact some pharmaceutical companies who currently have T3 licences and ask why they are not selling in the UK. Since there are 300,000 patients and god knows how many more people who should have access to T3 there is an obvious market. It is more than obvious now, with the advent of the Internet, scores of thyroid patients who remain unwell are turning to forums like this and realising there are alternative medications like I did. Doctors and Endochronologists will have to start listening and should be able to see to themselves that we are thriving on T3 meds and in many cases no thanks to them. TSH should also be a guideline rather than a target. These meds for many people (with thyroidectomy) are life sustaining so I do not take kindly to some feckwit trying to ruin my life when the decisions being made are not supported by real and true data.

[marigold22 in reply to Airmed]

It wasn't just my career, it was my marriage and my house gone.  Was doing well, buying, doing up & selling property one at a time.  Then I just crumbled after 15 years of T4 only & had to live off my capital as couldn't get any benefits cos I 'wasn't ill' as far as docs were concerned.  Now living in rented on government pension and topped up with pension credit & housing benefit.  So it's costs the government a lot in the end to not get me well.  Me too.  Have got used to it now but was very traumatic.  x

[Airmed in reply to marigold22]

Marrigold22 I am so so sorry that you have suffered so much due to inappropriate medication. What meds are you on now? PM me if you like. I was fortunate I was only on T4 for 5 years. But it took its toll on my personal life. Nothing as bad as yours but still significant. Then happened across this forum and .... Ta da... NDT and T3 came onto my radar. I started to do a it of research (pharmaceutical background) and it all fell into place, it made perfect sense and naively I thought "I'll just get some of that and all will be ok". I didn't realise it would prove so difficult to get hold of that missing link namely T3.I don't think the medical profession can even begin to realise the world they force us to live in if T4 doesn't work. I wish for one day these medics who make these decisions could feel like we do. Things would change overnight. It has been suggested to me on more that one occasion that a) it's all in my mind and b) placebo. These endos should be up for comedy awards. They should also understand we haven't got time to be ill and this life isn't a dress rehearsal so give us what we need. Keep well.xx

[Naomi8]

I have T3 prescribed for me,but top up with BYO from Greece.It is very reasonably priced.I fully expect my NHS supply to be reduced or stopped at any time,due to cost or my"dangerously suppressed TSH"I have also just bought my first batch of NDT from Thailand,also very economical,and now I see Amazon Uk are selling it even cheaper!

I agree this is a scandal,and it is also a scandal that those of us who have been prescribed T3 & NDT are so few.

However,I am also prepared to stand the cost of BYO rather than go back to the misery of all those years on T4 monotherapy,just as I pay for all the supplements I take.

T3 has improved my quality of life by increasing my energy levels & reducing my symptoms.,especially my chronic anxiety.

[Airmed in reply to Naomi8]

I am so glad youve got your life back too Naomi8. But am so sad you have to buy it. Isn't this what we pay our taxes for? Like you it took me ages to realise that the only way I was going to get better was research and a strong will in what I believed right for me.  Sometimes it really saddens me when I read about people's symptoms on this forum and others and you know they will benefit from T3. But due to the medical professionals (unfounded as no real data) treating them and their beliefs they can't have it. My endo still thinks my recovery is placebo and didn't want to prescribe. I asked for NDT which she point blank refused so we settled for T3. She wasn't to keen on that idea either but gave me 10 mcg. I completelychanged over to  T3 and the doctor thought she would want to see me, thankfully she didn't. I have always had the greatest respect for our medical professionals but I have to say all the endocrinologists I have come across without exception have severely tested that respect. Hippocratic Oath springs to mind!!

That dangerously suppressed TSH is just a number the pros like to use, to make them sound intelligent. As shaws rightly points out and I agree they like a good fairytale. I have yet to find the data supporting these views. It certainly means nothing to me so I will continue collecting my own data and keep well.