I am absolutely gutted that the British Thyroid Foundation have deleted my comment and blocked me from being able to post future comments on their Facebook Page.
All I did was ask if it was true that one of their reps issued a statement saying they have been unable to formulate a response to the NHS Consultation because they’ve had little feedback from patients on it. I cannot believe I’ve been removed by a charity that I have actively donated towards in the past! Absolutely gutted!
Luckily I can still see the post - I just can’t write anything on it and so many people have commented now and asked why I was removed. It goes to show how thyroid patients support one another in times of need! 😍
Charities are usually on the side of the charity (as their directors and top management are very well paid), after that they are on generally on the side of the establishment/politicians and those they rely on for funding. The people the charity are supposed to support are generally near the bottom of the pile. There are some some exceptions, but not many, given the huge number of charities.
I think many of them don't serve any useful purpose. The ones that do, you can see being active: eg Samaritans, Barnados, Sally Army, and so on. The totally useless ones just rant and produce literature, and mostly make things worse for the people they are supposed to support; eg Shelter. The others are somewhere inbetween.
I was on a bus a couple of years ago and overheard a conversation between two women who were sitting behind me. One woman’s husband was responsible for the licensing renewals of charities.
She was telling her friend that Guide dogs for the Blind had huge bankrolls of money that couldn’t be touched because of some loophole or other. This money just sits there making more and more all the time.
I once read a letter from a husband about the death of his wife from Cancer - it was on the net. He did not have a good word to say for Cancer Research and the millions collected and the shenanigans. He had researched carefully. For some reason I can no longer find it - umm maybe removed for some reason ....
Angel_of_the_North From my professional experience, which was entirely in the voluntary sector, I can agree with you. Sadly, some of those charities operating in the interests of their founders and funders can also be seen on HU. (NOT including TUK in this.)
What you say about Shelter also strikes a chord...
My point is, they’ve been responding to the members who write in with an issue and those issues are fed on to appropriatechannels. The more info the better.
It’s great people are emailing their stories, pretty shitty some of the nastiness that’s going on on the fb and accusing the charity of things I don’t belong are their doing - it’s NICE, MPs, Jeremy *unt.
And the least people could do is donate given that I imagine some really lovely people are having to deal with a hell of a lot of extra work and use extra resources when ultimately it’s mot their fault!
haggisplant BTF have a direct line to the BTA but the BTA ain't listening. They have the power to improve patients' health but prefer to do naff all. So do tell how joining the BTF would help me.
How do you know they’re not listening? Their statements, from what I can see categorically state they do not advise stoppingt3 if you are on it and benefitting.
The BTF passed on info about new up coming patient advisory placements, for members of the public, to work on documents and guidelines giving patient perspectives recently. That’s a helpful thing to do. I thought about applying personally but I’m pregnantand the timing could be difficult as you have to attend meetings.
And to clarify and repeat what the BTF have said, they can only feed on what they recieve.
Many of you have been with TUK only. And so haven’t been contacting them.
Unfair to have a hissy fit when you’ve been campaigning elsewhere.
If I want to change things I politely go right to the heart of where you have to go. ‘BTF have links to BTA’ so use that.
There’s quite a lot of passive aggression and aggression in the stories I’ve read and example letters. These people do not respond favourably to this way of communicating.
I was told two weeks ago how much more welly they’d have if I write about my experience rather than phoning/moaning(which is what I did. Shitty pregnancy care)
On that score, they’ve tried to get the royal college of MW on board many times and been refused.
“The BTF has been invited to join an independent advisory panel on the development of a new formulation of thyroid hormones that would combine t4 with a sustained release formulation of t3. Diurnal ltd and the university of Sheffield are applying to the EC for a Grant to support the production of the drug, phase 1 clinical studies and a phase 2 proof of concept study”
I think this is my issue, the nastiness. Which now I have received. So I’m not surprised they felt they needed to block.
No, they’ve really helped me out when I’ve really had some issues thyroid wise.
And I can’t see how there can be judgement of an organisation when people are not current members, actively involved etc.
I am aware they were anti t3 in the past - over ten years ago. They’re not now. Neither are the BTA.
I’d do proper research not based on heresay before I went ‘gunning’ for a charity. And I feel their response is very charitable given the sneering etc I’m reading. Your anger is misdirected and misinformed.
I appreciate you feel the way you do but I was the one that was blocked and I was not nasty to them in any way whatsoever!
So whilst I agree with you that nastiness is absolutely a reason to be blocked, it does not apply to me nor is the reason why I was blocked in the first place.
Please don’t make similarities between you perceiving someone being nasty to you on here as a reason to justify why I was blocked on the BTF page. I can 100% assure you my comment on their page was neither nasty nor “trolling”.
I don’t know about that, they only publish members letters and reply like that.
I’ve phoned for advice many times and they’ve had no clue if I’m a member or not or told me to join.
They use their money to fund lots of reasrch grants etc so I am betting they have to be careful how they use resources to have the most impact.
I’m actually mostly being devils advocate here. I’ve used tuk and BTF and another social network. ( I’ve had incorrect medical / scientific advice here on health unlocked incidentally, which I knew to be incorrect.) I also had excellent reassurance when I had a cortisol ACHT or what ever it is test here.
I do have a filter for incorrect ‘facts’ and heresay and heresay leads to misinformation and misdirected anger.
As the founder of the ITT campaign, I sent them a very polite email last Wednesday but have not received a reply, although I know Pamela and other members have.
Dear Julia
My name is Catherine and I set up the ITT (Improve Thyroid Treatment) Campaign. We are a patient lead campaign group. We have over 1,400 members in our group and our petition has over 26,000 signatures.
I believe you spoke to Mary Saunders earlier. She mentioned to me that you had had little feed back from patients regarding the NHS England consultation.
The ITT Campaign have forwarded our Formal Response to the consultation to the BTA. But following your comments, I thought you may be interested in seeing it. I have also attached a copy of our 'My Story' document, which collates peoples individual experiences of thyroid treatment. I hope yourself and your colleagues at the BTF will find them interesting.
I look forward to your response
The attached copy of the My Story document, in the email, contains nearly 150 personal accounts of how people are being seriously failed by current thyroid treatment.
Ignorance is when they have no idea you’re annoyed with them as you’ve not told them. So yes they are ignorant to the fact that you’ve all been put through such crap as, until now, you’ve not told them.
@haggisplant would be interesting to know who at Sheff Uni involved? Makes sense of trying to push T3 off the market and Concordia building new plant for a medication that is being priced off the market? In favour of this...confirms my theory! And no doubt this has been planned since 2012! Wonder if it is the price hiking that has paid for Concordia's new plant!
What gets me is the fact that these people - Weetman (Sheffield Uni) etc, have long steadfastly stated we don't need T3, we are somatic and should just shut up and do as our doctors tell us.
But without statements to say, yes many patients benefit from the addition of T3, they are investing in a drug containing T3 ?
If this goes ahead this is great, but what about the people that can't convert the T4 part of the new drug ?
That's disgraceful! Posted on the FB page. Grrrrrrr!
I'm sure lots of people emailed them after hearing all this yesterday. I'd emailed them weeks ago, so had others, so they can't say no-one had contacted them. I never had a response, or acknowledgement. I emailed them again at length yesterday.
Because you’ve not joined them / entered dialogue and made your voice heard previously? Don’t criticise them for your absence in joining their campaigns in the past. And they’ve had many! Not fair if they had no idea what you were all going through. And to reiterate, statements from the BTA are NOT to withdraw t3. This is an issue to take elsewhere. Help the BTF. As actually they have avenues to make their voices heard.
I don’t think anyone said they’re statement was to withdraw T3.
I think the point is people are angry they waited until now to reply officially to the NHS Consultation Survey and that was only done because of pressure to do so via social media.
I have been a member before and donated and I have stopped because I don’t feel they engage with patients enough and I also don’t think they reacted quickly enough or with the right attitude.
They should not need to be inundated with patient feedback when they already admit to knowing patients are scared their T3 will be removed. They should have proactively responded and been reassuring patients more than they did.
To issue a statement saying their quotes were misrepresented and should not have been used to back withdrawal of T3 is not the same as actively opposing the entire proposal.
If a patients blood test dictates they need T3 then it shouldn’t take jumping through hoops with multi-disciplinary teams to get it but that’s just my opinion.
The guidelines need rewritten and brought into the 21st century. I am glad NICE are going to be attempting to rescope them. T3, NDT and Auto-Immune Thyroiid Disease all needs to be considered in how they test, diagnose, treat and inform/educate patients. Again, just my opinion. GP’s are not well trained in thyroid as it is and the BTF’s latest statement calling out patients for using online forums (leading them to be misled and confused) when they should be trusting their doctors is what sealed the deal for me. They need to get with the program and speak to patients (not just paying members) to appreciate what’s actually happening.
I thought in this country we had freedom of speech,it wasn't like you were insulting someone. Obviously just asking a question they don't want to answer. SHAMEFUL!
It's surely about time Thyroid problem patients got militant over the poor medication choices offered in this country - the medical profession has a duty of care. Can we not take NICE to court, take some action, start a social media campaign via Change.org or some such? I don't know how to go about this, but some of us thyroid sufferers will know.
In a way Pamela0106, the fact that you were blocked has spurred even more people to add their comments. Hence BTF have shot themselves in the foot over this!
There have been probably 100s of passionate posts and reviews left on their FB page since then!
We know the British Thyroid Foundation will not agree to this, but at least we should be able to state our views. There is no logic to this and can only think it will cost too much to approve NDT for us.
Actually it’s not up to them to ‘agree’, they channel the views of their members and those who contact them asking for advice. Few here will be members.
I would understand had I been abusive or in breach of a rule somewhere. All I did was ask if one of the reps had said it. I did name the person but it was a question, NOT an accusation. The only reason I can think they blocked me is because I put a name in there.
That said, all they had to do was delete the comment or ask me to remove it if they felt it was inappropriate. All it would have taken is a simple message or request. There was no need to block me entirely from the page. I just feel it’s not an act of a charity organisation to block the very patients it exists to serve.
BTF don't like criticism. If there is a lot of criticism on the thread they will take it down. Can't see why you're gutted though. They only represent patients taking Levothyroxine. If you need T3 or NDT they won't support you.
I guess I’m gutted more because of the principle that they should support all thyroid patients and having seen the comments on the thread I can assure you mine was certainly not as damning as some on there.
Also because it’s a charity for goodness sake. I’ve donated to them before. And they’ve blocked me for my effort.
And lastly because I seem to be the only one in about 100 people to have been blocked. Feeling a little butthurt and singled out to be truthful.
But I agree with what you said certainly now more than ever. Xx
Not saying you breached any guidelines but, if you did, they are entitled to block you from their FB page.
I wouldn't have asked them to complete the consultation because they are pro-Levothyroxine and anti-T3 and anti-NDT. For that reason they are a waste of space for anyone not doing well on Levothyroxine.
If you read the comments there are FAR worse than the one I posted.
I asked a very simple question but I can only assume because it had a named person in it from BTF that’s why it was removed. That’s not a guideline breach though. They just didn’t like it.
It was a question. Not an accusation by any means.
Pamela, it would have been naming a person. They have a duty to protect their workers from potential online abuse. Given the way twitter and trolls work, in such a situation on social media, they would have had to protect the person named. The blocking may have been Panic - it’s quite an onslaught on that fb page. I’d be quite scared if I was an admin. I doubt you’re singled out.
And they’re not anti t3 from all I’ve ever seen and experienced.
The person who blocked me is the same person who’s name I mentioned. Not because I said anything wrong but because she didn’t like her name being mentioned. Not reason enough to block when it was a genuine question (not accusation or attack).
It’s also the same reason why she has now unblocked me too because frankly it demonstrates a conflict of interest and I was deleted with no grounds.
Well that was my experience. In my addled state they were the charity I joined when first ill and suspecting thyroid. Very establishment and didn't even inform me of the alternatives which at the time were more readily 'available' than now. you would have thought that they were responding to the consultation even if to say status quo was fine, none adversely affected.
Not true in my experience. I have known BTF members on t3 and spoke to some in their office when I called a couple years ago. The woman I spoke to was very pro t3.
Here's what I just sent to the BTF. It felt good to send this. Pamela, we're behind you!
Hello, British Thyroid Foundation! Thank you for inviting us to tell our thyroid illness stories.
I was very ill for a long time, and undiagnosed despite many visits to various GPs. Symptoms were cold hands and feet, fatigue, hair falling out, skin cracking, dry eyes, digestive problems, weight gain, a lack of concentration and problems keeping mental focus. All this interfered seriously with my work and personal life. <bold>My quality of life was very poor</bold>.
Once diagnosed as hyperthyroid by an endocrinologist, I was started on 50mcg levothyroxine and increased to 75mcg and then to 100mcg. Although my TSH was rapidly reduced, the clinical symptoms did not improve, sadly, for more than an additional year. My quality of life continued to be quite poor. Finally I found an alternative private endocrinologist on Harley Street in London who told me of some european research that indicated that the addition of liothyronine, or T3, helped many patients who could not properly convert T4 to T3. (T3, as you know doubt know, is the active substance, which the body has to create from circulating or Free T4.). Once I was started on 25mcg of liothyronine, <bold>my clinical symptoms improved dramatically</bold>.
But alas, I now cannot obtain T3 with the NHS, and have had to leave the country to be treated abroad in order to preserve my quality of life. Fortunately I have the means to do this, but many people do not. I'd guess that most people do not.
I hope you will consider responding to patients who do not convert T4 to T3. One size Rx does not fit all. T3 is proven to help many patients. It is available overseas at a very low cost. Why can we not insist that the manufacturers provide it at reasonable cost?
Thank you very much for all of your help and advocacy. You are very important to keeping people healthy. You are SO important, that it carries a heavy responsibility: please think of the suffering you could alleviate. <bold>Think of how good this would make your foundation look, to be the force that saves so many, and saves the NHS so much money</bold>.
Think of how many great news stories you could have on the BBC and world wide, about how you are <bold>progressive and clinically focused and cost-conscious and caring</bold> all at once. In fact, maybe we who have relatives and friends working for BBC and others could help get some of those stories out in the mainstream media.
Or, well, you could just be another bad foundation that doesn't do anything for anyone, just lines its own administrators' pockets. But I know that is not you! I have faith that you will rise to this important challenge! <bold>You could be really important</bold>.
Thank you very much,
Anne C., autoimmune thyroiditis/hypothyroid patient
"For patients who have clearly not derived benefit from L-T4, endocrinologists (thyroid specialists) sometimes decide to begin a trial of L-T4/L-T3 combination therapy. Such patients should be supervised by accredited endocrinologists after a fully informed and understood discussion of the risks and potential adverse consequences."
Yes - you are right to point that out. However, it could only ever apply to someone who gets as far as an endocrinologist. So many have never been referred even after repeatedly requesting. Others might have seen one but would be unlikely to manage to get further appointments because they have already been returned to primary care. And it depends so very much on which endocrinologist you happen to see.
Yes but then even if Endo's will accept referral they often have decided before seeing patient that they are not going to issue T3/NDT or test T3, RT3 or consider adrenals...etc etc
Just checked, many comments and still coming up to 10 minutes ago, all along these lines
" It's outrageous that you have deleted comments and blocked someone because they talked about T3. I can't believe a charity for thyroid that does not listen to the very people who are suffering. Best thing I ever did for my thyroid was to take T3. How dare you be so biased. Shameful!"
I left lots of comments and two reviews after they blocked Pamela. I asked for at least a reply to all the posts asking why they hadn't responded to the Consultation. So far been ignored but not blocked. Posted links to ITT petition and Consultation on any posts right down the page.
“All I did was ask if it was true that one of their reps issued a statement saying they have been unable to formulate a response to the NHS Consultation because they’ve had little feedback from patients on it.”
I don’t think you should have been blocked at all.
However, this is how they have to work as the charitable wing of the BTA (who are NOT in favour of t3 withdrawal too). They can only act if they have feedback. Are you a member? Do you recieve their newsletters? Do you call them for advice? If you had you would know that this is what they ask patients to do - they asked me to write recently about my yet again awful experiences with thyroid things in pregnancy, so they could pass my letter on/ collate it with others to create a bank of evidence.
Please work with them, not against them. They’re not the responsible ones! Use them as a channel, ask them what can we do to help? Getting cross with them is not productive.
They fund a LOT of research projects often directed in response to patient’s queries eg research into care in pregnancy, TED, cancer etc. Many of these patients may not be affected by the t3 issue and so do not write in.
I didn’t get cross with them. I cant. How can I? I’m blocked from commenting so I couldn’t do anything at all. Lol.
And my original comment that they deleted was a simple question.
I am not cross. I am more upset.
And it’s as a person who has donated and been a member that explains why I am hurt by it.
The BTF are great in many ways but unfortunately I cannot forgive what they did on this occasion and on the NHS consultation I do not believe for one minute it’s acceptable to have waited until today to respond to it and only because so many people commented.
They issued an apology post and in it they say “We are fully aware that some patients who have been treated with liothyronine (T3) are now unable to get a prescription for the medicine and many others are extremely worried that their access to the medicine may be withdrawn, however we have not been inundated with correspondence about it.”
I think it’s terrible that they are aware yet choosing not to act. By demonstrating their awareness of it but waiting for someone to bring it up before they do anything for me is poor.
They the later go on to say “Until yesterday we had not heard feedback from anyone about the process.”.
Again - this is poor. As a charity who exists to engage with patients I am shocked that they didn’t think to ask patients about it since they already admit they knew it was an issue that was upsetting patients.
It just doesn’t feel right at all.
In addition they are there in general to support forward steps in Thyroid support - don’t you honestly think they should have responded to the consultation already (without having to be “inundated”) to oppose T3 Withdrawal?
I do get your point. I really do. They have done some great things. My criticism is only in relation to how they’ve failed to engage patients on this point and the fact they’ve not responded to NHS survey before now.
I think your unfortunate deletion and block was in response to the name. Last night I felt too scared to make any comments so I’m not surprised- your comment may not have been angry but others were really bad!
I agree it seems that they don’t represent the people who need t3 (except that I’ve seen articles about t3, the gene issue etc, so they must do) But I honestly think as droves of people have come here and tuk they haven’t been as aware as they could have been. And that may be frustration with them - however I was told by a BTF worker how she had got t3 prescribed to her and what to do if I felt that was the issue. (I worked out it was the ferritin, vit d and I have hyper mobility)
There’s is now a couple of really useful posts on the comments regarding it all - pointing out the BTA have said NOT to withdrawal.
I’m addressing this forum without a clue who to actually address to say to work with them, not you personally, apologies.
Also, all the repeated reviews giving them one star does imo make me smell a rat if I were an outsider- it looks like a mass trolling event. And then I feel that immediately cuts effective communication. I think it would have been more effective to keep asking for help than criticism. I think their response is fair and seems they are now listening.
I agree with you haggisplant As they are a voice that is recognised by the 'powers that be' I think we do need to give them a chance to work with us, rather than closing communication down. I totally accept that they are out of touch with the people they serve and haven't been proactive, but I also understand that they are a small charity (only 3 staff) so being proactive would have been difficult and without feedback from patients they would have difficulty speaking for them/us.
I think their action in blocking people on their facebook page is inflammatory and unhelpful, but I think we should give them another chance to work with us as they are in a position to help or harm our cause.
Yes the act of them blocking was closing communication down on their part. That was just as upsetting as people realising they had not made an effort to respond to the consultation.
Think a lot of people were just incensed that a thyroid patient charity had not responded to an important consultation, that was poorly advertised. The fact that the NHSCC were impressed with a response of 2500 (1200 individual patient) says it all. The message was not getting out! And as a patient representative it would have helped if they had advertised the consultation and elicited responses of any kind. They should have responded anyway, in the best interest of all the patients not well enough to comment. They obviously have had comments from patients regarding T3. I don't think it was trolling. I think it just shows the extent of upset over this whole debacle.
Hello I do not think there has been a mass trolling. I gave the BTF 1 star. I was not a robot or organised to do so and have seen no evidence to suggest it was
I will probably be blocked after my blog as I reckon jeremy hunt has shares in Concordia and that is why T3 is so expensive and a lot of conservative politicians are trying to kill off the n.h.s I think they have been trying to do it for years depriving the biggest british institution of funds while they send colossal amounts of money overseas just to appease the beuracrtic trash in Brussels this money should be kept in the uk to treat our sick and disadvantaged citizens who work have worked and can't anymore then our government add insult to injury then go even further to deprive people of benefits they are entitled too,again thyroidies and a lot of them I know are being denied benefits because this illness is being down graded and your told it's all in your mind by the crude tsh blood test that is performed to prove that your just a neurotic woman with hormone problems !!! Definitely a man's world isn't it !!! I propose that Viagra should be knocked off the prescribing list or anything to do do with pencils dysfunction as hypothyroidism affects a woman's sex life too for people who don't know this !! Let's charge £900 plus for a months Viagra could you imagine the outrage ?
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