My response from the DOH in response to my contacting my MP - on 1st April!!

Dear Ms.....

The Rt Hon Andrea Leadsom contacted the Department of Health on your behalf about liothyronine.

Under the provisions of the Data Protection Act, during this pre-election period the Department is not able to share information or respond to enquiries on behalf of third parties without their express consent. We have therefore written to Ms Leadsom to explain that we would reply to you directly.

I was sorry to read of your health problems and appreciate your concerns about access to the most effective treatment.

Best practice on the identification and management of hypothyroidism has been provided in the Royal Collage of Physicians' guidance The diagnosis and management of primary hypothyroidism. This document was developed on behalf of organisations such as the British Thyroid Association, British Thyroid Foundation, and Society of Endocrinology, and is endorsed by the Royal College of General Practitioners.

The guidance states that the overwhelming evidence supports the use of thyroxine T4 hormone replacement alone in the treatment of hypothyroidism. This is usually prescribed as levothyroxine tablets. The guidance does not recommend prescribing additional T3 hormone (liothyronine) in any presently available form. However, this does not prevent clinicians considering other forms of thyroid hormone replacement if appropriate.

In addition, NHS England is leading a review of low-value prescription items and introducing new guidance for clinical commissioning groups, with a view to substantially saving NHS expenditure in this area. This will identify areas of prescribing that are low clinical value or are available over-the-counter, often at a lower price for minor conditions such as indigestion, travel sickness, coughs and upset stomachs.

In developing the guidance, NHS England will seek the views of patient groups, clinicians, commissioners and providers across the NHS. Further information is available on the NHS England website at england.nhs.uk by searching for 'guidance on low value prescription items'.

More generally, decisions about what medicines to prescribe are made by the doctor or healthcare professional responsible for that part of the patient's care. Prescribers are accountable for their prescribing decisions both professionally and to their service commissioners.

With regard to medicines prices, the Department is aware that there have been a number of increases int he prices of certain medicines, including thyroid medication These include instances where a product previously marketed as a brand has been subsequently marketed as generic and an increase in price has been applied in view of the lack of a competitive market for that product. Any concerns about possible anti-competitiative behaviour by pharmaceutical companies should always be reported to the Competition and Markets Authority. The Authority was asked to look urgently at the evidence uncovered by The Times was part of it's investigations into excessive drugs pricing.

There are systems in place to ensure that the NHS obtain the best value possible from the purchasing of medicines. There are voluntary and statutory schemes in place to consider the prices of branded and generic medicines rather than consider each product individually. The Department also has legislative provisions to allow it to intervene with the regard to the prices of medicines. However, any investigation would require a high-level and detailed knowledge of the company's business to be able o make a judgement as to whether a particular price increase was justified.

Now that Parliament has been dissolved before the General Election, the Department cannot comment further on this matter. What happens on the issue of the NHS in the future will be a matter for the incoming Government.

I am sorry that I cannot be more helpful

Yours sincerely,

Ola Adigun

Ministerial Correspondence and Public Enquiries

___________________________________________________________________________________________

Interesting that my original email (1/4/17) to Andrea Leadsom was ignored. The resend (11/4/17) prompted a response on the 12/4/17, to say that due to the seriousness of the content of my email it has been passed to the DOH. I spoke with AL on 21/4/17 who passed me onto her 'aid' who assured me I should have had a response and would follow it up that following week. A week later I was chasing them again. Am I wrong to think that they have just 'passed the book' and stalled to avoid having to respond. This letter (not email) ending with the 'Department' not being able to comment further...cop out!!

I am going to respond -

To highlight that I am all too aware of the document The diagnosis and management of primary hypothyroidism that GP's and CCG's are using in the treatment of Hypothyroidism, I and too many others, have been a victim of this narrow minded practice for far too long!!!

I am also aware that the 'guidance states that overwhelming evidence supports the use of thyroxine T4 hormone replacement alone in the treatment of hypothyroidism.' I also know that this is usually prescribed as levothyroxine tablets. I took these tablets for 20 years and had nothing but increasing debilitating health problems!

Please supply the overwhelming evidence that is being referred to here.

May I also point out that T4/thyroxine is not a hormone, but a 'pro -hormone' it is effectively packaging. It is not used by the body in it's original form. It has to be converted to be usable.

'The guidance does not recommend prescribing additional T3 hormone (liothyronine) in any presently available form.' I am also well aware of this. Firstly you have this part right, in that T3 is a hormone. This particular part of the guidance is what I cannot fathom. Many endocrinologists have, and do, prescribe T3, usually when someone is not doing well on T4 alone. Or when someone does not convert the 'inactive' T4 to the active T3. This in itself would indicate a real need for T3 to continue to be available as an option.

Left on T4 alone, when unable to convert the T4 to T3, would leave a person building up T4 within the blood stream and becoming T4 toxic, causing a myriad of debilitating symptoms, such as Chronic Fatigue, fibromyalgia, migraine, to mention just a few from my own experience.

You mention that the guidance does not prevent clinicians from considering other forms of thyroid hormone replacement, if appropriate. I would like to know what other forms of thyroid replacement you are referring to?

I would also note here that your paragraph outlining that it is the decision of the Doctors or healthcare professional as to what medication they prescribe, is not necessarily true in practice. Many CCG's are stopping surgeries from issuing T3 even to existing T3 users. This is against the current guidelines. I am hearing of endocrinologists who are recommending T3 to patients referred to them, but when these patients go back to the local GP's the GP is refusing to issue prescriptions, forcing patients to go privately, or as most can't afford to do this, they have no choice but to try to source T3 from the internet. Really!! This is what is happening. To me this seems that GP's are effectively being bullied by CCG's. All based on costs.

I have contacted the CMA regarding the price hiking by Concordia. I know other have too. I understand this investigation continues to be postponed. I would be interested to know if either the NHS or the DOH actually contacted the CMA directly, regarding this particular price hike when it happened? When discussed on The One Show it was mentioned that Concordia had been contacted and refused to appear, but had said that the NHS had not contacted them to discuss the price. Why not? Why does it take The Times to uncover evidence regarding excessive drug pricing?

I realise the recent bill has opened the door to better investigation and control over price hiking of drugs and medicines but your comment, referring to a requirement for 'high-level and detailed knowledge of the company's business to be able to make a judgement', sounds like an excuse to avoid such investigations.

I am also well aware of the NHS's review of 'low-value' prescriptions. As T3 is NOT an 'over-the- counter' medicine, they must be referring to T3 as being 'low clinical value'?

This will only be of 'low clinical value' to those who are well and/or do not need it - on this would the mean that all drugs are 'low clinical value' as none of us need all drugs. To those of us using and benefiting from T3 it is anything but low clinical value. In fact it is life saving.

At this point I will remind you that hypothyroidism is a life long condition, which many surgeries do not even recognise as a 'long term condition' despite the fact that it warrants 'Free prescriptions' because it is a life long condition which untreated or mistreated can lead to other very serious conditions developing and premature death.

Regarding the review relating to the prescribing of T3, I would also ask as to how transparent will the discussions be? Will allowances be made to consider the numbers of people who are being forced to self diagnose and self medicate because of the poor hypothyroid medical processes. Or will these people continued to be ignored and neglected by the NHS and the DOH?

The review should not be just about T3 but about the overall reliance on ineffective and often poorly understood blood tests.

I did not appreciate your reluctance to comment further due to Parliament being dissolved. As this issue is ongoing and relevant to all parties. If nothing else I would ask that my original email to Andrea Leadsom, your response, and this response, be passed onto the incoming Health Minister for further consideration and response.

___________________________________________________________________________________________

I've not sent this yet - thinking I will, and will try to get it to all local MP's from all parties too. thought I'd see if anyone has any other ideas about responding? I'm not going to accept the standard fob them off response.

My apologies for such a long post - hope you managed to wade through it!

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  • UrsaP well done on persisting with your complaint and good that you've at last received a response although disappointing as it is.

    Just a minor point, CCG's actually consist of GPs although more likely to be GP Partners. GP Partners are concerned with money rather than patients, in my opinion.

  • Thanks cinnamon_girl but the other GP's seem to be governed by the CCG's decisions? Or am I wrong...do want to get the facts right so all input appreciated.

  • UrsaP yes they are but remember that GP Partners have a financial interest in their practice.

    Apologies if I'm repeating myself but recently told my new GP that I had Lyme disease and she was very interested and caring. The next time I saw her it was crystal clear that the Partners had instructed her not to do anything for me. I had to really fight for a referral to a consultant, she couldn't have been more disinterested if she'd tried. This is not an uncommon experience in the Lyme world.

  • Cinnamon_girl - This is not an uncommon experience in many other conditions, believe me... One has to fight all the way, often for a very long time to get GPs to do their job.

  • I salute you, Ursa P. All I can counsel is not to get bogged down with this. It's all too easy given our fragile health to waste hours writing refutations to the arrant nonsense and sophistry which serves no-one but allows the powers that be to tick boxes and move our protests around.

    In. Out. Next, please.

    There comes a time when having done the best one can, it has to be let go. The 'campaign' we were told was imminent - here's Lyn Mynott writing 24 days ago - 'We hope to start working on the campaign next week (unless something else crops up that will take us away from doing this such as me having to travel miles for an interview that I think will help) including designing some template letters for people and instructions on what to do.' Appears to be no further forward. The template letters and instructions as to what to do seem no closer to me. We are scooping up sand and it's slipping through our fingers.

    I refuse to rant and cry because I know it will affect what health I have. I have protested and it's not enough.

    To all those reliant on nhs T3: I am embarrassed and ashamed that we have failed you. Many of us have tried, in our own way πŸ’”

  • Hi Rapunzel

    I understand where you are coming from, it is infuriating to keep trying but get nowhere, but we have to keep trying the only other alternative is to lay down and die. (probably literally if we let it happen) I'm hoping that as time goes on, more and more people are being made aware of the options they are being denied. The more people we can get on board now, whilst this is in the limelight, to some degree, the better chance we have of getting heard. But enough of us need to want change and enough of us need to be well enough to stand up for those who aren't!! Talk about them kicking people when they are down!

  • UrsaP I hear you really I do. Feel that I have done what I can on an individual basis and that this needs moving forward in some collective way.

    Tumbleweed skitters across the desert 😒

    Determined to carry on working, however sparsely I feel able to do that. I'm fortunate in that I can simply p*ss off a few suppliers I'm not fond of, should I wilt. Part of my role is sucking up negativity. Just don't feel able to do much more, outside of my work, than I do :(

  • Hi Rapunzel I know how you feel and that is exactly what we need now, a collective effort - the bigger the better, with everyone who can doing what they can.

    and just in case you didn't see, I did ask Lyn yesterday about the campaign and the reply was they are still awaiting for a third party -need to make sure all facts are correct.

    Lets hope something happens soon and it is worth the wait!

    All the best.

  • delicious21 No names mentioned. You could try PMing Lyn to ask?

  • delicious21 I'm not sure what you mean or which name? PM me?

  • Excellent post Rapunzel and agree with everything you say. I am extremely disappointed that Lyn Mynott makes endless promises that rarely come to fruition. Really, what is the point of a support forum if nothing is done to change the status quo? Why aren't those misfits at the BTA being told to produce evidence that Levothyroxine is all we need?

    I've said it before and will say it again, when I first joined the forum campaigning was very much at the heart of ThyroidUK. The last few years though have seen little being done, why not?

    I'll leave it there, just exhausted with it all.

  • Wow UrsaP ...that is one very impressive response letter. Well done you for not being fobbed off .

  • Fantastic letter πŸ‘

    Just to let you know I'm working on my reply. Back soon

  • Thanks bernie51 I've not yet sent it but I will...just want to see if anyone has any further ideas to add, or suggest. I've basically just worked my way through their reply that told me nothing I didn't already know and basically did nothing to answer my original email to Andrea Leadsom.... It's not over yet!

  • I admire your tenacity in not letting them try their usual "fob offs". I think they rely on people just going away.....and good for you in keeping on at them. 🌻

  • bernie51 I don't intend to let them keep fobbing me off....will keep on as long as I can...

  • You write

    Surely it cannot ALL be put down to the cost.

    And yet, of course it can all be put down to cost.

    I need a purple Swarovski covered Range Rover in which to campaign, with violet velvet upholstery. But I can't afford it. Our tax dollars can't pay for everything, however much we might need it.

    We rely on the Whitehall wonks, who remain in place as governments come and go, to police the price the nhs is paying for drugs. And the medical profession to advise the nhscc which drugs are efficacious and which not worth the dough. And guess what? The endoprats will still have jobs if the raving loony party wins. This goes much deeper than whom we elect, delicious.

  • So jobs for the boys then delicious21 !

  • I tend to agree that there is more to all this than saving money by pulling a vital hormone. Largely because the NHS were reluctant to issue T3 for many years before this current price hike. This price hike has only given them the publicity 'reason' they were looking for to 'ban' it. Lets face it that is what the goal is, just like they effectively banned NDT.

    There is a bigger reason for this and I wish I could think what - because the most obvious one is controlling future spending on pensions...by killing us all off early, and that is not an idea I want to dwell on. But they are happy to use the price as a reason, so makes me suspicious.

  • Got me thinking now UrsaP as to what the bigger reason could be. This is probably right off the wall BUT suppose it is actually known by the "medical profession" , big pharma etc that Levothyroxine does not enable people to regain optimum health......but that T3 would. The reason it is priced so high is to effectively stop most people getting their hands on it.......and finding they can regain optimum health ....given the right medication. Can you imagine the flood gates that would open and the law suits that would follow if this was the case.....people having been treated with the wrong medication for decades.

    Probably a bit far fetched....so perhaps I had best put my thinking cap back in the wardrobe. πŸ˜€

  • bernie51 Not that far fetched, a similar thought had crossed my mind, that T3 is the 'wonder' drug to cure diabetes and heart conditions etc, and they don't want that to be known. But maybe you have hit the nail on the head with the idea of law suits. There is definitely some reason...not just the price!

  • Not that far fetched, Berni51! Population control... Orwell's 1984 style..

  • Thanks for giving such a lot of good information. I am of the same opinion as you in that this charging is all down to Privatisation by the back door and we are being pushed very dangerously through it. How many others have had their blood levels changed drastically since the change to generic T4 and stoppage of T3? I think we really need some legal help now.

  • You may wish to mention the link to cardiac illness costing the NHS millions when T3 is low. Check my earlier post 😊

  • What a great letter UrsaP. I have written my letter to Simon Stevens with copies to about 6 others at the top. I was also considering sending it to the opposition as I think they should all know what atrocious treatment we are getting. Just as I was about to send my letter/copies a new Election was called for, so was unsure as to if they would be answered by anyone. I decided to hold on a wait, but now think I will send them with copies also to the counterparts in Opposition, so either way they will also have copies.

  • Am sending copy to my MP and JH is not left out either.

  • Very useful to have all these numbers. Thanks for letting us know.

  • It was the DOH -JH's department that this letter came back from. I sent one to JA in his capacity as shadow health minister. no reply?

  • j_bee I intend to do the same and send them to all parties. We should tell them that we don't need the 'party' line as we are well aware of the situation and how the decisions are currently being made. That what we need is change. Changes in how Hypothyroidism and all connected symptoms and conditions are diagnoses and treated. With options for treatment.

  • My MP is quite prominent too as a Member of the Cabinet.

  • I think everyone who received the same 'generic' reply from the MPs etc should send this same letter back! Well done, it is brilliant.

    They should also be reminded that medications like T3 literally save lives, whereas other things available on prescription do not. They should think very carefully about which things they decide to not supply freely. I am thinking things like, gluten free foods (I was shocked to see the range available on prescription in the BNF), free condoms, dressings, moisturisers, and the list goes on and on. Sure, in an ideal world these should all be available BUT no one died from not being able to get a free condom or a mepore dressing!

    IMHO, it is the people who manage the NHS budget who need taking to task NOT the government OF THE DAY who provide the funds. All parties/governments are all as bad as eachother and all are responsible for the current situation, it did not happen overnight and problems have been brewing for many years, no matter who has been in 'power'.

  • I enjoyed reading it and I thought it is very well written and to the point Whether it will just wash over them unless they themselves are hypo and don't get on with T4 only is probable, as no-one has any clue unless they themselves struggle with hypo and their replacement hormones.

  • Just got to keep chipping away shaws If enough of us keep it up maybe someone will get fed up of having to read these letters from us all and start taking notice, might even do something to get us off their backs.

  • We should do just that delicious21 and Prince Charles too. He can be quite vocal about things.

  • Snap! Your response is the same as mine. I've just written a post, with mine 😑

  • Hi Bijourain Just seen your post and read your response - yep SNAP - Stock reply, avoiding all the real issues! These stock responses at least explain the delay in replying whilst they got their 'fob off' sorted. We need to insist on further discussion regarding this and let them know we are not prepared to be put down.

  • I wrote to the Department of Health, not my MP. They are all passing the buck.the treatment we are offered t4 only is a scandal and it seems that it's because the NHS can't negotiate the cost of t3 as well as other countries where it is a fraction of the price. As far a Thyroid patients are concerned the NHS isn't fit for purpose.

  • Bijourain It doesn't matter who you write too -same response - the best we can do is make a nuisance of ourselves buy keeping the discussions going and keeping this in the limelight, till they realise that we are not giving up. And the only way they will get rid of us is to do something about it! Oh, and get as much publicity as we can in doing so.... The price is just a convenient excuse to have T3 removed. The NHS have avoided issuing T3 long before the price hike.

  • delicious21 Your story is crazy. I hope you reported the stupid woman to the GMC? Total neglect. And to think of the impact the stress of the worry could have on someone!!!

  • delicious21 unfortunately the NHS cares about no-one . you have probably had your usefulness as far as they are concerned and there is no such thing as loyalty anymore.

    You should have had a response from the hospital at least!

    Mind you, they probably have you down as now suffering with mental illness, as you have thyroid problems...hence they don't need to reply?? LOL!!!

    though it is no laughing matter!

  • Exactly, what if you had took her at her word and skulked off back under your stone. I've spent most of my disposable income this month on blood tests and supplements. There are many people who literally can't afford or Don t even know about what me and you and lots of people on here have done for themselves. Nothing changes. I bet if you look at a random number of posts, from this site from 3 yrs ago, that the same issues that are being discussed today, were being discussed then. It's like the never ending merry-go-round. A different approach is needed, as whats gone before has resulted in diddlysquat.

  • Nothing changes. I bet if you look at a random number of posts, from this site from 3 yrs ago, that the same issues that are being discussed today, were being discussed then. It's like the never ending merry-go-round. A different approach is needed, as whats gone before has resulted in diddlysquat.

    You are correct in your wager, Bijourain . This is beyond frustrating. All the forum and TUK appear to be doing is exchanging information. Nothing will improve the lot of those suffering on nhs 'rations' - my absolute belief is that many who could be well on levo are left, sadistically undermedicated as their bloods fit somewhere in the prescribed range, additional to those who will shortly face the withdrawal of nhs T3 - until there is a co-ordinated effort.

    Just don't hold your breath. πŸ™„ 😞

  • Hi UrsaP and Bijourian deep respect to you :-)

    DoH display such contempt to receive a stock reply...

    What disturbs me the most is that the DoH state there is "overwhelming evidence" from RCP that LT4 monotherapy - as I recall when a FOI request for this evidence was lodged by Dr Skinner (?) an overwhelmingly bland reply was received stating it was the RCP's findings and a couple of papers actually demonstrating that LT4/LT3 combination therapy was beneficial.

    When/if I can scrap myself of my bed of illness it will be good to pursue this with the DoH...

    "Where and what is this overwhelming evidence?"

  • That will be in my reply to the DoH amasufindme We need to be demanding to see this evidence and presenting them with our own...we need to be able to counteract everything they say.

    Rapunzel You are right we do need a coordinated effort. We need to gather the troops and establish some figures of who is doing what. The hard bit is motivating people who are unwell and worn down by neglect. Any of us with any level of energy need to be 'acting'. I do believe, an hope, that there are a few good people out there, who are in the process of establishing some plan, doing much more than I. I'm hoping there will be some plan of action soon....

  • Can we create a file space - google file share or drop box to collate papers etc. all links to be PM'd only? Its a shame HU does not have a file space function as FB does.

    I really want to help... struggling with me energy and me cogs are a bit askew (I had to have a small workshop the other day at the bus stop by a lovely elder who show me how to read a bus timetable!), but I do have a scientific background in biochemistry and can start collating papers/articles in a team effort :-)

  • When I have files to share, I put them on my Dropbox space. However the "free" Dropbox accounts no longer support public shared links.

    If you think something else is appropriate, contact LouiseRoberts at Thyroid UK and make a suggestion.

  • You are our file space Rod :) But agree; there should be a space perhaps on the main TUK site, where all this information can be catalogued and available. amasufindme what a star to offer your involvement in such an enterprise πŸ‘πŸ‘πŸ‘

  • There is a considerable body of papers on the main Thyroid UK site here:

    thyroiduk.org.uk/tuk/resear...

  • And mine! I just posted mine in reply to yours! πŸ€”It would be funny if it wasn't so potentially life changing, not for the better, for so many of us... 😑

  • I think there needs to be a different approach to this, that's not to take anything away from your very well written response Ursa. I just think it's going to fall on someone else's desk and another variant of the generic letter people have received recently will be blasted out.

    Do we know where Jeromexx's article was to be published and when? We need a kind of expose, because I don't think our voices will be heard above the establishment's guff.

    I'm thinking along the lines of DONAL MCINTYRE. A journalist with b@ll$ who will drill down and expose the lies and rubbish we and, for all we know, our GPs too, are being fed.

    I have no idea how one goes about contacting him, but I do believe a smarter approach is needed.

    I may be barking mad but this is just my thoughts.

  • Not barking mad, at all. I totally agree. I was wondering if Jerome could get these generic letter publicised and pulled apart for the rubbish it is? Definitely need a journalist with B@ll$ (well put!) Not like the wimp I originally contacted, a Times journalist who doesn't report on this topic anymore because he gets too much aggravation from both ends of the spectrum!! Some journalist! Obviously too well paid! Don't need to work for his money!

    And I will certainly look to see if I can find any contact for this Donal McIntyre. Or anyone else who might be worth contacting. Any further names/suggestions please post.

    Might help if enough of us contact these people for them to realise there is a story to be told. We will need to see what happens with Jeromexx

    In the meantime, I will keep doing what I'm doing.... not giving up.

  • Fair point on sending your response, I wasn't trying to put you off doing so, and in any event their response will be another example of how to fudge the answer; that's what most bureaucrats do as we all know. No don't ever give up.

    I can't remember if you mentioned this, so apologies, perhaps ask them to supply you with references to evidence and/or studies that show T3 / Liothyronine is low value and also that for the vast majority T4 is an effective treatment.

    If we aren't told about taking T4 on an empty stomach away from food and other meds etc etc by GPs, how many on T3 are also not told this (excepting those on this forum of course) and therefore it doesn't work?

    Maybe we should be asking for blunt evidence and answers????

    Will do some Googling on contacting the DONAL.

    I have no experience in these things and don't have the eloquence to always make my point, I just feel if the 'renegade' docs can't be heard and get silenced, then we have to think outside the box more.

    On the legal stuff, and this is off the cuff and not thought out at all, but is there a way to make use of human rights?

  • SolsticeSS Your comments are received as intended, and they are appreciated. You are right we do have to think outside the box and think about how to make this situation work in our favour...i'e...now it is in the limelight, lets keep it there.

    I think my reply did ask for the overwhelming evidence of the benefit of T4 they all keep taking about. But agree that we need to do this where ever they mention this 'vague evidence', notice they do not supply any? We also need to respond with the evidence we have, that is where Kitten1978 comes in with their document full of referenced evidence.

    Unfortunately few of us have experiences, we are being thrown into a situation not of our making but for our own sakes and everyone with similar issues currently and going forward we need to react.

    And for these Dr's who have sacrificed their careers and standing in the medical world to stand up for better treatment for us all, for them we also need to react.

    HR may well be worth looking at. How to go about finding out? We can but try.

  • I just got a bounce back from an old BBC email address for Donal McIntyre. Apart from agents booking private appearances I came up with zilch.......

    Now, I am not being lazy here but my brain can't cope just now with signing up and working out how to do twitter, but does anyone have a twitter account, as he is very active twitter.com/donalmacintyre?...

    If only to get an initial dialogue going?? Seriously, he is known for his tenacity in uncovering lies.....whether he would take on the NHS is another matter.....

  • delicious21 You can pass me the links please will have a look. (see if I can understand any of it!)

  • How about some of us, make appt's to see the British Thyroid Foundation, the British Thyroid Association, the dept of Health and whoever else, and take a presentation, showing evidence of how their current protocol of treating Thyroid patients is just cruel and storing up major health complications for the future?

  • Bijourain That could be a great plan. We need to get some ideas of the number of people who are currently on T3 on the NHS and some idea of the 'invisible' number of people who have been totally ignored and neglected by the NHS and are having to self source and medicate.

  • We need to approach each one as a 'patient advocate group'. Get ourselves a name, slogan. As you say, try to find out the information ref t3 and the 'invisibles'. Ok, how do we do all this? Also we need to agree on the content of the presentation πŸ–’

  • Bijourain Yes, good thinking.Working out how, and who does all this is another thing. I did ask someone on a T3 FB page if they could come up with some way of knowing some of the figures of the 'invisibles'. I haven't heard back yet.

    I'm wondering if the TUK campaign may cover some of this? I wish we knew what they had in mind...we might know better which direction to take?

  • I would be up for being involved in any patient advocate group, but I must admit that everytime I read these suggestions my mind always goes back to TUK and others and wonder why it has not been done already?

    I appreciate people are busy, we all are, but action needs to be taken and we need to be kept up to speed with what is going on.

    Saying that, I do not see why it could not hurt as then these organisations etc would have the patients view of the issue.

    I also think writing to HRH Price Charles or HRH Duchess of Cornwall would be a good idea.

    Also, the letter to these prominent people should be as brilliant as the one that started this string of posts, I then believe we should ALL sign it, ie send a scan/photocopy of your signature and It can be added to the bottom of the letter.

    I will help in any way I can. I am also thinking about TV programmes of the panorama type, anything to get heard.

    Do not hesitate to PM me if I can be of help :-)

  • Hi ajs100uk I think many of us are wondering why things have got to this, I can only assume that maybe the support was not in place for earlier campaigns and the problem now is knowing just who is able and willing to stand up and be counted. I'm sure TUK will come through shortly with the campaign plan and hopefully we can all support. And I would imagine there is nothing wrong with us doing whatever we feel will be useful, but your are right it would be much better to be able to show a collaborated action. We also need to keep the individual and human elements in focus too. My local MP did say that they count petitions as 1 - whereas individual correspondence gets more attention.

    I believe that a few people may be working on plans for action. I will try to contact them and ask where things are and will bear in mind your offer to help. I'm sure shortly we may all be called on...we have to fight for what we need. No-one else will do it for us.

  • Bijourain I wonder if we would get appointments with these organisations. I wonder if Lyn Mynott TUK, or TPAUK, have ever had meetings with them? Would be worth finding out and investigating the possibility.

  • Also, we could do with as many people writing to their gp's and primary care providers, so they receive the same stock/fob off reply as we've done. This could amount to thousands. We begin each appt by placing these stack of replies infront of our contact, stating that these stock replies are an insult to each individuals intelligence. To be told that the preferred treatment is t4, and that there isn't any evidence that t3 or NDT is beneficial as this pile if papers, says otherwise and that their current attitude is wrong.

  • How do we encourage enough people, who are feeling so low, and lacking in energy and faith, to write? Again, it goes back to being able to show the numbers involved. We have to find a way to know who to approach to ask them to write?

  • Bijourain, I absolutely agree with this!

  • Maybe a new campaign group coming on the scene might make them listen. It can still include everyone who is involved with Thyroid UK, it needs to be dynamic and evidence backed.

  • We do a stock letter to them, as they've done to us, just changing name and some details like symptoms still being experienced by individuals and the length of time they have been being 'treated, I use that word sarcastically lol

  • Bijourain I think there may be a plan already hatching along those lines, I will need to contact someone to find out what is in place. But we do need to keep things as individual as possible. A stock letter will get the same response that we are now giving to our stock replies received. But the evidence needs to be in line.

  • delicious21 this letter mentions Primary Care Trust. We haven't had them for a few years now. Have I missed something? Did they mean Clinical Commissioning Group? Or was this an old reply?

  • delicious21 thanks for clarifying this.

  • Very well done - send it.

  • UrsaP

    I am sorry to hear about this...provided i am understanding you correctly you are not able to access the treatment you require on the NHS, given the lack of evidence base and thus prescribing guidelines issues to prescribers? The absence of an evidence base does not mean that the treatment doesn't work for you, but as a consequence you are being denied optimal health? Combine that with the need/temptation to access the totally unregulated internet pharmaceutical market you have a double whammy. I have no constructive suggestions regarding a way forward, but I totally get where you are coming from and fail to understand why, in some circumstances, researchers and doctors don't seek to build the evidence base with patients where their symptoms on any proposed treatment continues to negatively impact on their ability tho function normally? Well people contribute so much to society it just isn't cost effective to refuse a treatment that works??

  • Di08 Actually I am one of the luckier ones who is still being prescribed the medication I need, i.e. T3. Not that my health is optimal, but it is certainly improved on the T4 only treatment.

    But with this medicine being included in the current prescription review I am obviously worried that this medication may be withdrawn. Having spent 20 years on T4, trying to make it work, ending up very ill, I am not prepared to go back on an inactive pro-hormone that did nothing positive for me. I have been on T3 only for the last 7 years and the benefits have been enormous.

    You only have to read through a few posts on here to see that many people are already having their T3 withdrawn (against CMO and BTA guidelines) And it is being refused to 'new' patients who are not responding well on T4. Even when some endocrinologists are authorising T3 the GP's are refusing to issue it, through costs.

    More are struggling to get a diagnosis to start with.

    All these people who are unable to get T3 through prescription are either having to pay privately, which is fine if they can afford it but how many can? So many, like myself, have had to give up working through illness. Again, I am not particularly badly off, I do not 'work' these days but rely on my husbands earnings, but I know we would struggle to afford to pay privately. We already source both adrenal and thyroid supplements amongst others, for myself and one of my son's. (As yet undiagnosed) Or, they are self sourcing from abroad and self medicating that way.

    Most are finding relief from symptoms, managing their own health. Proving that they do need this medication.

    One of the bigger issues with doing this, apart form the fact that they have all been forced into it by NHS neglect, is that they are not on anyone's records as taking this medication. Should something happen to any of them, they become incapacitated and, say, end up in hospital, who will know what medication to offer them? It puts them at further risk, it also puts the Medics who would treat them at risk.

    The big question is why do GP's not collate the evidence of patients using T3 and getting benefit, or those on T4 and not benefiting. I recently looked through my medical file, what there was of it, and there was no mention anywhere of the T4 causing me all the symptoms that stopping T4 eradicated. Thought this was clear and I even told the GP that was why I had stopped T4. He chose not to note it. Why?? My comments have been noted (sometimes incorrectly) elsewhere in my file. One Dr c 4 yrs ago, had noted that 'the patient feel better since starting T4' NO!! It should read, 'since starting T3' this same Dr told me a few months ago that she had never heard of T3/liothyronine. (Shows they do not listen!) A senior Gp, when I told him she had not heard of T3 responded 'I'm sure she does'. I told him she had actually told me she didn't - my file has since proved it!!

    This lack of knowledge and understanding is a major issue, and even when GP's know something of thyroid conditions, it is often not the correct information/understanding.

    Your point about well people contributing so much to society is so true. Which makes it unbelievable that so many medics, seeing their patients struggling, chose to say they are 'anxious', depressed or an outright hypochondriac...rather than giving that patient the benefit of doubt and actually listening to them and helping them get well.

    We live in a very sad world right now - I dread to think what the future holds for our children. If they succeed in removing T3 from prescription, where will it leave us all who rely so heavily on it when there is no alternative available. And for all those people yet to be diagnosed. And what drugs will they target next?

    Is it a case of 'survival of the fittest'??? Wasn't there a tyrant in the second world way who 'got rid of the infirm' because they didn't fit into his idea of the perfect race??? Scary!!

    Anyway, enough of my ranting!

  • Thank you,...i am learning all the time, and have much to learn, so not seen as a rant at all!

  • I am still learning 35 years on...the sad part is the medics don't seem to be!

    This forum is a good place to learn... you just have to be careful to ensure that you can decide the right course for you. As none on here calling to be medically trained, and suspect most of us aren't. We can only share our experiences and hope that it helps others to find what they need to get better.

    All the best.

  • UrsaP I am querying, as much as the T3 problem, why the T4 medication is not now working for my son and I since the change to generic Levo. They are not only denying us medication that used to work for my son and I, but have given us something very inferior in return that is causing our health to fail. When a Dermatologist at a leading hospital tells you that you need to get together a class action because something is wrong with the medication, then something is WRONG. I have tried all T4 in UK at present and am now on the best of a bad bunch, but cannot get onto NDT because of what I think it has done to my Adrenals.

  • Hi j_bee Is your son 'converting'. Was T4 ever working for him? The trouble with medication is that when it becomes generic and is manufactured in different ways we don't aways know what 'fillers' and 'binders' are in each make. Might be something to look into? I'm currently taking a German brand of T3 and it seems better than the previous UK brand (assuming that is what I was getting before, as never came in a branded box!)

  • Well written and thank you. This equates to an Insulin dependent diabetic being denied their quick acting insulin. Which many use alongside long acting insulin and sometimes oral hypoglycaemics. To deny a thyroid patient who can't convert T4 to T3 or doesn't function well on T4 is scandalous. Not one mention of how it affects the individual patient in the response. Where is our choice as our care is supposed to involve us in decision making.Disgusted 😑

  • Do you mean an insulin dependent diabetic like our current Prime Minister?

    diabetes.org.uk/About_us/Ne...

  • Well done. The article Ola Adigun your correspondent refers to was published in July 2016. It showed that Vijay and Bikhu Patel of Waymade Limited had sold Mercury Pharma (previously Goldshield) to Cinven and had become multi-millionaires on the back of selling generic T3 to the NHS. The increase in price went from 2009: Β£20 to 2016: Β£258 and continues to be Β£258 for a month's supply of tablets ie 28. This is such a scam but apparently there is a loophole in their contract with the NHS that legally allows them to do this. As Ola mentions the Competitions and Markets Authority is investigating and taking evidence in the spring/summer of 2017 and will publish their report sometime after that. Which doesn't help any of us who have been told by our GPs and Clinical Commissioning Groups (as I have) that we can't have T3. So after I received my GP's letter saying that T3 was on the blacklist I wrote back to my GP attaching print out of British Thyroid Association Executive Committee December 2016 statement where the BTA categorically state 'the BTA position statement should in no way be used as an endorsement for discontinuing L-T3 ie they disagree with the Royal College of Surgeons 'guidance'.

    british-thyroid-association...

    I see Thyroid.co.uk also recommend printing this out and taking to GPs.

    My GP wrote back to me giving me the name of someone to speak to at the Clinical Commissioning Group which I did.

    She is a pharmacist. Her job title is Medicines Manager. She is not obliged to collect data on the number of women who are complaining about the withdrawal of T3 by the government (Be interesting to know under which government, Labour or Tory this cock-up in the legislation occurred.) But she did advise that I could try to apply for IPF - Independent Patient Funding which I will.

    The person to complain to who is obliged to collect data on the number of women who are complaining is your local PALS person. Mine is a colleague of the Medicines Manager but she is independent and very supportive. PALS = Patient Liasion.

    Since 2008 I have been on Sigma Pharma 5 mcg x 4 = 20 mcg per day plus 75 mcg T4. GP has given me an interim 28 day supply of Mercury Pharma 25 mcg tabs (Β£258) which I will have to split into morning and afternoon dose to tide me over (running out of meds in 6 days) until I see the consultant endocrinologist the GP is also sending me to. I was told I would be given emergency appointment but nothing has materialised yet.

    The content of your letter is great. There are some words and phrases that you repeat (see last para for example, there are a number of 'repeats'. And the questions need to be very direct, concise, no waffle. That's how MPs write to civil servants. I would suggest you number each question so Ola Adigun can respond in kind. It's a great letter. It just needs tightening up. Good luck

  • levelslass Thank you for your response to this. I realised there are a couple of 'errors'. I will reread and edit it a bit before sending, I'll look at the points you mention too. I did want to get ideas from others, before sending, as it was my 'initial' response, so appreciate your input. Many thanks.

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