Regarding the move to stop prescribing T3. Will anyone out there listen?

[UrsaP]

I, like many on here, are fuming over the way the NHS are trying to eradicate t3 from prescription medicine. It is being portrayed as an expensive and low value medicine, that there are cheaper alternatives for . We know that is not true. What other alternatives do the NHS offer - only t4, which, those of us lucky enough to have survived long enough to go through the years of trying to make t4 work, fighting to be heard and fighting to be taken seriously, can verify is not an alternative for us. Been there, done that, it didn't work!

The problem being is that Dr will generally avoid referring patients, to specialists so they can be issued t3, for as long as they can. And even when we can stand there and show that this medicine is so much more effective than t4, Dr's choose to ignore it's impact. Choosing instead to say it has little benefit? On what evidence?

I have for approx 5years, been on t3 only. The difference is incredible. Yet my GP has shown no interest in knowing this. DR's seem to want to close their eyes to the benefits of t3? It makes no sense.

And all you people out there, who are having to self treat, who have not even been able to get a confirmed diagnosis, despite your obvious symptoms, never mind be offered any form of treatment, good or bad, along with all those people who are yet to realise they even have a thyroid problem, you are the invisible statistics that cannot be counted.

I wonder how much the timing of this announcement was orchestrated to coincide with the invoking of rule 50? Making this a minor issue in light of other things. Hence it gets lost under all the Brexit media, especially when it is branded with 'low value' items that are now more widely available over the counter, promoting an insignificant image of the drug, to the general public, who are not going understand.

They are not going to realise that Liothyronine is issued for a 'potentially fatal' condition. A condition serious enough to be one of only a few, that people are given a free prescription certificate for.

I have signed all the petitions I can find and filled in the CMA form, and emailed.

So, I thought I'd see who else could I contact to see what responses I would get back, and maybe, just maybe spark some interest somewhere - I know....I'm a dreamer...no harm in trying, as let's face it if we all stay quiet then no one is going o listen!

So, I emailed a Dr, who is also a journalist. I got a very quick response, saying he no longer reports on this issue due to the amount of abusive response he gets from both ends of the thyroid spectrum.

Highlighting, I think, the real problem - it is a battle. I took this spectrum to mean Dr v Patient!

And it also highlights the problem that the media do not want to know! If anyone knows of anyone who might be more sympathetic to our needs?

I also sent a message to my local MP. I await a response here.

Following the response from the Dr, I wondered who else may be worth trying...(I'm generally not that politically minded, but feel so strongly about this) I thought of Watchdog. So I have sent a message. I'm not sure I will get a response, as one of the questions was 'Did you watch the programme this week?' I was not going to lie, I don't even know if it was on! My hubby tends to watch it, I do sometimes but depends what else I am doing - women's work etc...

I wonder if enough of us took the time, and I know it is hard when you are feeling so low and wiped out, to contact anyone we can think of, if maybe, someone, somewhere might just hear something?

I'm worried that this issue has been reported on and now forgotten to be implemented in the background. And if so, what will be the next group that the NHS will push out the door. I appreciate that many of you must be feeling like this already, an it is hard to muster the energy to stand up and be counted when fatigue and brain fog are such a issue, however, there are 50000+ people on this forum, perhaps if we all made a small amount of effort to be heard, If we all shout just a little...again, maybe someone will hear and take some notice?

[Rapunzel]

The problem being is that Dr will generally avoid referring patients, to specialists so they can be issued t3, for as long as they can.

I can't agree. The problem is that Concordia and the company owning the sole rights to manufacturing T3 in the UK previously have, without any justification, ramped the price exponentially and NICE, NHSCC CCGs and any other government procurement department have just shrugged and said ah well, it's too expensive now, 'few' benefit anyway and there's always levo, which our medical experts tell us treats most anyway. What should have happened is that such indefensible increases should have been investigated. Yet another example of where Whitehall has no teeth, and then gets a freaking knighthood for doing a job poorly.

And all you people out there, who are having to self treat, who have not even been able to get a confirmed diagnosis, despite your obvious symptoms, never mind be offered any form of treatment, good or bad, along with all those people who are yet to realise they even have a thyroid problem, you are the invisible statistics that cannot be counted.

When you have done all you can to be counted and there is nothing left to do save kicking a chair away from a noose or self treating, I chose to self treat. I have to appreciate what I'm responsible for (me) and know what I'm not responsible for (the many who can't afford my solution 😭 )

I wonder how much the timing of this announcement was orchestrated to coincide with the invoking of rule 50? Making this a minor issue in light of other things. Hence it gets lost under all the Brexit media, especially when it is branded with 'low value' items that are now more widely available over the counter, promoting an insignificant image of the drug, to the general public, who are not going understand.

en.wikipedia.org/wiki/Jo_Moore There are many days to bury bad news and both ends of the political spectrum use them royally.

Not that I'm bitter

[UrsaP in reply to Rapunzel]

I'm not sure if you have misunderstood me Rapunzel. I apologise for not being clearer, if so.

Dr have lied and tried to mislead me with lies. Stopped once they realised I knew more about my condition than the average hypoT. When I originally asked to be allowed to try something other than t4 (After about 30 years - 10 on nothing, 20 on t4 only - no benefit! Getting so ill, had to give up job) I was told there is nothing. I told the GP there was t3 - he obviously knew there was, but was not going to offer it. He wasn't expecting me to know about it. I only got a referral because I was covered on my hubby's work insurance. Dr have not issued T3 that willingly. This price hike has just played into the hands of Dr's who now refuse or withdraw on price.

And I wholeheartedly agree and understand that those people out there have tried everything to get diagnosed, and been let down. I'm not saying anything different, I'm saying they have to be considered too - I'm trying to stand up for them. I think you may have misunderstood my meaning - I totally understand what people have had to go through, and how it is to be dismissed as depressive and hypochondriac, it took me over 12 years to be diagnosed and I am sure that was just luck of timing, and perseverance! I managed to get a blood test done whilst the goitre was still there.

I am saying we all have to be standing together and working together to get and keep the medicines we need. We should all be able to get them through the 'proper' channels - i.e our healthcare services. We do have to take responsibility for ourselves and our own health. And whilst we are not responsible for everyone else, as you point out, not everyone can afford to self help, and one day it might be us who can't afford to pay to heal ourselves. None of us know what is around the corner, We need to safeguard what options are there now for everyone, for the future, and for our children, who are just as likely to encounter inherited problems.

Even though I was referred and given t3, it was only when I took the situation into my own hands and went to see Dr P that I ended up on t3 only. Which changed my life. I do still have problems - bouts of illness or stress that can knock me sideways and it takes months/years to get back on track - but that is probably because of the damage done through sub-standard treatment destroying the thyroid and having a knock on effect on the adrenals. Without t3 my life would be very different.

My son has shown signs for years, worsening 5 years ago - he still cannot get any sort of diagnosis from his GP. I took him to see Dr P a couple of months ago. His adrenals are struggling. But I worry that he is encountering the same outdated attitudes I have been seeing for 35+ years! Hypo T's had a much better chance of quality of life back in the 1950's!

And they say medicine has advanced!

[Rapunzel in reply to UrsaP]

(((UPower)))

I'm sorry if you feel that I have misunderstood you as that wasn't my intention. The T3 conundrum is accelerating at such velocity, it will shortly be impossible even for the 'specialists' to prescribe T3, hamstrung by the unjustifiable cost.

If there was a way thyroidies could communally flag up with medical statisticians that so many of us self treat, to knock their 'minority' for six, I would be more than happy to join the throng. Nonetheless, I will face no-one's opprobrium for finding my own solution, however half baked. I remain sub optimally well and can only imagine the damage that the mismanagement of your own health may have caused.

Our democratically elected government have decided to exit the EU on the basis of a narrow democratic majority. It does not bode well if everything unfortunate is blamed on Brexit, hidden because of Brexit, Brexit's fault &etc. We may as well shake our fists at the moon.

I await with interest and anticipation the TUK promised campaign.

[UrsaP in reply to Rapunzel]

No worries Rapunzel, I was just a bit concerned that you might have thought I was being a bit negative towards the people who are having to self medicate. I think we are on the same page. It is the hidden statistics that I was thinking about. If we knew just how many people are taking t3 in any form, from what ever source, it could add impetus to our cause and aid our plight!

Similarly for those on NDT - as the same think happened with this drug, for no good reason. We are talking about 'approved' drugs her. Approved for a reason.

Any of us, struggling to find the treatment to work for us are in danger of the problem being exasperated as further damage is often likely. Especially if it is caused by auto-immune as I'm sure you know. I suppose if it has gone on long enough then we are just fighting the consequences. I'm sure a lot of the problems would not require t3 and t4 might be enough, if the condition is supported early enough.

As marigold22 on this tread mentions, self medication, which looks like is becoming THE only option, could have such a major knock on effect - i.e. not being noted in official medical records. Incapacitated, how would emergency medical workers know we were taking it, before administering something likely to react? After all, currently, this medicine is so 'controlled' that it has to be issued in such small amounts by a specialist, and closely monitored. We will have to wear 'medical tags'.

And I suspect if they do manage to get away with taking t3 off the market, and then find we are self sourcing and medicating, dr's may well refuse to treat us on grounds, such as, that they cannot treat as do not approve of self medication, and / or don't know the impact of t3... because, let's face it, how many are taught about t3 to know about it now...they will be looking to 'cover' themselves.

It is sending hypothyroid healthcare underground...in more ways than one! A pandora's box could be being opened here.

This is not a condition any of us asked for, it is not self inflicted. And NO one has the right to be contemptuous towards anyone doing what they can, in trying to get well, especially when they are getting so little help for those who are there to help! Even when we do get some help, it often is not far enough. We are entitled to optimal health, surely? Especially if there are medicines that do help in that goal!

As far as governments are concerned, they all seem as bad as each other.... Who knows if Brexit will work for us or not. We lived outside of Europe before, maybe, with the right attitude and stance regarding negotiations, trade etc, we could make it work. Learn form past mistakes. (Not convinced it will ever happen though!)

I believe all sorts of other issues can be passed through government and approved, whilst these bigger issued shade them from view! But that is going off track.

I think that TUK are going to have to act fast with any campaign...

I hope you do find the right balance of meds to suit you. I had a few years of feeling 'alive', aiming to get back there now...it was worth it.

[Ann-Simpson in reply to Rapunzel]

How are you sourcing T3i have had it withdrawn and am feeling very unwell as a result. Am now wonderful what to do to help myself Ann

[UrsaP in reply to Ann-Simpson]

I'm still being prescribed. Bloods tomorrow, so things may change but not without a fight! Ann, you might be better reposting, perhaps in the morning when people are back up and running, and asking. You might get some ideas.

[fibrolinda]

How can only one company ever have been allowed to supply t3? Pretty obvious they'd ramp up the price as soon as. Competition is soooo important the government cry but not it seems where drugs are concerned. The original cost was I believe less than £40 for 28 tablets, still an absolute rip off. So how the heck can this have happened? Incompetence? Illegal activities? hinky for sure whatever the reason and on the ground its suspicious other companies should immediately be allowed to supply t3 so cheapest can be procured on an annual renewal basis and good reasons required before signing the dotted line if it costs more than the couple of euros it costs in other countries. Sigh. Bureaucracy is ever more famous for ignoring the truth and saying what they want. Doing what they want. Up the revolution... When I've had a sleep and charged up my mobility scooter

[nonstopmummy]

Totally agree with everything you're saying - on my better days this is exactly the sort of action I start planning to take! When you say you've signed all the petitions you could find - I wondered if maybe this is an avenue worth pouring some more effort into - thyroid UK has over 50,000 members I believe, but how many of us ever see / sign the same petition before it gets lost in the mountains of posts? Is there a way perhaps to make a single petition link spring up on every page? has there ever been a government petition that made it to actually being debated (needs a minimum of 100,000 signatures to get debated I think?). Would get press attention? Could this petition link also be made to appear on sister sites, like STTM, Thyroid Patient Advocacy UK, Recovering with T3, and all the associated Facebook groups and sites? If everyone could club together for just one petition, if someone had the energy to organize it.... Or am I being too optimistic I don't know. Ah well.

[nonstopmummy]

ps I don't think we'd have any shortage of volunteers willing to pin a copy of the petition up on their local gp surgery's notice board.... I'd ask my endo sugar-sweetly if he'd mind me pinning a copy on his office wall too ...and then there would be the deep, deep satisfaction of keeping endo and GP updated on how many signatures we had already...oh god please someone do this please please!!

[UrsaP in reply to nonstopmummy]

He'd probably say 'No'. or it would soon be removed!

[Hidden]

Hi, I'm completely in agreement with you. Overall, thyroid issues get swept under the carpet because until now the drugs have been inexpensive and therefore not popular with the Pharmaceutical Industry. However in the UK the price of T3 has become almost prohibitively expensive to the NHS, the greedy sole manufacturer in the U.K. has increased the price ridiculously. Maybe the monopolies commission would be a route to justice? Like you, I am kept alive by Liothyronine and T4 does not work for me, in fact my symptoms were exacerbated. I've used T3 for 10 years. I saw a specialist in December 2016, put forward my case to her and fought for my life, literally. I am allowed to continue using T3. Well thank you very much, I've paid my taxes all of my life and I'm 52!! Makes my blood boil (and before anyone asks - no I'm not having an excess of T3!). If you want to set up a Facebook group for Liothyronine users and advertise it through Thyroid UK and The British Thyroid Foundation I would be the first to support you in your journey. I'm absolutely positive that other users of T3 would be on board. With all good wishes. Collette

[UrsaP in reply to Hidden]

Maybe that is one thing we should do - but not sure how to? it might show some stats as to how many are using it - and getting benefit - prescription or otherwise.

I was the same - toxic after 20yrs on t4 only, and a couple more on t4/3 mix. was just not converting/ using t4. I'd been increasingly struggling with fatigue, fibromyalgia and migraines, which worsened as time went on. Weight of course was another issue. I still managed to bring up to boys and do a degree in my 40's, worked most of my adult life, when not studying, until I had to give my job up as just too ill to continue. (Like many others) Still I was made to feel like a lingering couch potato, practically told I was a depressive, given checklists and such - think they even gave me antidepressants at one point - made no difference - placebo.

I'm still on t3...I don't know what will happen with me, due a review this month. How much do you take?

If it is any consolation, my heckles are up too - finding it so frustrating. I think I'm quite surprised that not more people, on here, are not 'up in arms' about it.

[Hidden in reply to UrsaP]

Doctors' Hippocratic oath states "do no harm". Deliberately changing a regimen that obviously works for you, in my opinion, would be against the Hippocratic oath. I have isolated TSH deficiency and as this "rare" I asked my consultant how many people with ITSHD were in the clinical studies. I take 40mcgms daily (2x 20mcgms). Be strong and know at least one person agrees with you (me!). There are plenty of people on this forum using T3 and I feel sure they would support you xx

[UrsaP in reply to Hidden]

I thought the same, but was informed on here, that apparently, Dr's no longer have to take the 'oath'. What does that tell us!

What is ITSH exactly?

I know that, for me, the enzyme that converts t4 to t3 does not seem to do so. I take 50mcg - split doses . Trying to split small tabs!! Was on 60 - was a tad easier, but Dr dropped it last years sometime, as I'd lost some weight thought ok. Not sure now, but following loads of stress, adrenals taking knock, things had gone haywire, so working on building things back to feeling good again - getting there, and if I need to go back to 60, will push to increase it again. Hoping 50 will suffice.

Thank you for your support. It is appreciated.

I'm not sure that enough bods on here are seeing my posts. There are few responses. Understandable, I'm guessing people on here have been so let down by 'healthcare' they may well have given up on it. I admit, I'm only hanging on by the skin of my teeth because I'm still getting t3.

It might be that most people are self sourcing and self medicating. And as they are having to do that anyway they may not have the same energy or impetuous to respond. I would love to know the numbers who are getting benefit, self medicating or prescribed. Maybe if the numbers are big enough and we can get someone to take notice and publicise it, it might make a difference.

[Hidden in reply to UrsaP]

en.m.wikipedia.org/wiki/Hip...

The Hippocratic oath is still in use, albeit in a modernised form! "Do no harm". Maybe a human rights lawyer would be a valuable route to take. After all, withdrawal of T3 is tantamount to manslaughter. Xx

[UrsaP in reply to Hidden]

Here here... Like my hubby says, and sorry for repeating this - but if all the 50000+ on here put in £20 we could probably afford one too!

[Ann-Simpson in reply to UrsaP]

Lucky you.I have had it withdrawn and so far have not managed to persuade my specialist to allow me

to stay on it. Any advice would be welcome Ann

[UrsaP in reply to Ann-Simpson]

Well I have been on it for some years and have proved I am better on it....but suspect there will be problems afoot -I will be producing my reply form the Chief Medical Officer should I have any issues....got all fingers etc crossed.

[dorcas70 in reply to UrsaP]

How on earth do you all get T3 prescribed!!?? By whom!??? At such a loss to see how some of you have it!!

[UrsaP in reply to dorcas70]

Yes dorcas70 it is another postcode lottery! There is a fb page, T3 action group or it might be Hypothyroid UK - someone asking where people live and if getting t3 or not. Very mixed. My Chemist has questioned how this last month, but guidelines by CMO and BTA state same - if existing patient clinical benefit - continue to issue.

[marigold22]

I totally agree with every single thing you have said. I lost my marriage and then my house whilst on T4. Only Dr P prescribed T3 for me after 14 years of sheer hell. All weekend I've been in a stressed out state over this news. Someone did say to me you can buy in from Europe, and I do know this. BUT if T3 is not on one's medical notes then, for example, if I get taken into hospital I would have to sneak my European T3 in with me. I'm exhausted this morning after the last few days of mayhem over the news that T3 is to be stopped. I've completed the Competition & Markets Authority form twice, and emailed a variety of people I imagine may be able to help. I think a lot of T3 takers are wiped out at the moment.

[UrsaP in reply to marigold22]

Yes marigold22, I suspect you are right, the stress of this is likely to send us all downhill health wise, after all the adrenals are usually part of the problem by the time we are issued with any t3!

I too feel like you, in a panic. I do not want to go back there! I too have filled in the forms and emailed anyone I can think of. I don't know if you saw my earlier post, about emailing a journalist, who replied he does not write about this issue any more, because of the abuse he gets from both ends. You'd think this was exactly the sort of thing a journalist could get his teeth into and achieve something from? Or is that just me! My last attempt was Watchdog - but as I did not lie and said I did not watch the programme last week (is it on at the mo? ) Not sure that will put them off. Why else ask that question? I do watch WD but not all the time. Hubby tends to...wonder if that counts!

I saw a specialist c1981, and for about 2 years after, with goitres, only to be 'dismissed at the end of it. It took me till c1991 to get a blood test to prove 'hypothyroidism' (How much more damage was done in that time! ) Issued with t4 - NEVER felt any better, questioned it continually, to no avail. Like you it has taken me until 2008/9 to get any t3, and sometime after 2010, following seeing Dr P, I ended up on t3 only. The difference, once the correct balance was found, was amazing.

You do have a valid and worrying point about the possible future need of hospitalisation (and lets face it, if t3 is stopped that is a very likely possibility for us all) And not even via hospitals, if we end up going to gp for other reasons, if we are self medicating they won't necessarily know the meds we are on to know what to safely issue (Though a GP at local surgery has not heard of t3? -already wiped out of training - adding to my theory that they have been gearing up to removing it long before the price hike - wouldn't be surprised if Company wasn't encouraged to hike price to help cause! -cynical - yep!) Will they ask what other meds we are taking?

And I'd put money on the GP's, refusing to prescribe, once t3 gone, and whatever else they might be trying to eradicate. If they find out that someone is self medicating.

I'd also guess T4 may be next, along with other drugs required for 'Potentially fatal' conditions! - i.e clearing away the 'Exemption certificate'. Really ill people cost money! People with Potentially fatal conditions cost money - they are usually life-long conditions.

Who knows maybe we are getting to as stage where Euthanasia will be acceptable and maybe offered for free??? That might solve the NHS crisis...I know- cynical! Yep.

When you look back at all the 'rubbish', to use too mild a word, we have put up with, all the years and decades of mistreatment and basically 'abuse'.

How come Dr's don't seem to have to answer for this 'mistreatment' - in what other profession would that be acceptable? If teachers let their 'children' down poor results or being unprofessional in their treatment of them, they are held accountable? Poor management/judgement/practice is accountable in all walks of life. How come GP's are so 'immune' and unaccountable? Is this why they won't admit t3 has benefits? Because they have stood by outdated thinking for so long they now fear the accountability? So their answer is to get rid of the 'evidence'? I know...cynical! Yep...

Why would I not be!

[Hidden]

We are right and they are wrong, there must come a time when they accept the inevitable.

It's just a matter of WHEN.

Keep up the good work everybody and COMPLAIN, COMPLAIN, COMPLAIN!!!!

[UrsaP in reply to Hidden]

How I hope you are right but I fear that, with the move to remove t3 from prescription, that 'they' are running in the wrong direction. Their pig headed attitude to just continually disregard anything we are telling them, is only getting worse. What happens when they withdraw t3....? What alternative will they suggest...t4? We know it is not an option, what do we do? Just get more and more ill, less and less able to complain, further labelled as hypochondriacs and lazy couch potatoes who need to exercise more. Without the medication we rely on, we end up on a spiralling decline to a premature death.

I fear no amount of complaint will be heard by those that choose not to hear.

But I still cling to a sliver of hope...

[marigold22]

british-thyroid-association...

british-thyroid-association...

I hope these two links work. Thyroid UK is advising T3 users to use the British Thyroid Association guidelines to appeal to their GP/endo. I used the Guide for GPs which IS there for public viewing, printed a copy off and sent it to my GP with a letter - begging to be kept on T3.

[Hidden in reply to marigold22]

I like the fact you are doing something positive about this but I reckon you should be DEMANDING rather than BEGGING.

Throw the facts in their face and ask why you are being threatened with losing what is keeping you well when anybody who has the slightest knowledge of thyroid problems should know very well that many victims of their incomprehensible incompetence and total ignorance will become immobile, every one will curse every health "professional" it has been their misfortune to encounter and a few will give up all hope and commit suicide.

[UrsaP in reply to marigold22]

Thanks Marigold. I'm hoping as been on it for some years and it working, as opposed to the previous 20+ years on T4 - I'm hoping they won't try swapping me back - I think I would only refuse to swap...Have kept a copy of this just in case! All the best - we really should not have to beg!