Last night I attended a local meeting regarding a local transport issue. Not connected to Thyroid, I know, but our local MP was there and I wondered if some of her advice about being heard on this topic would transfer to the current plight and impact of the withdrawal of T3?
Surely with nearly 55K followers on here, and I do realise not all are UK based, but there must be enough of us to be taken seriously?
I don't know how many on here have thought to write to their local MP's about the situation they and everyone on here is in, but if enough of us were to write to MP's and even directly to the Health Minister, would we be heard?
I do also realise that many on here are probably feeling too ill to be bothered. But I do believe that there is strength in numbers and if we hold together, we might be able to help each other even more in doing this. For the sake of an email, perhaps?
I suspect that we would have to highlight certain things, looking at our problems nationally - e.g. the increasing burden, to NHS services, we become as we get more and more ill; inability to hold down jobs; the fact that thyroid conditions seem to be on the rise (not sure where I got that from but read it somewhere recently; etc. Perhaps, the unprofessional and often downright disgusting attitudes we face from Dr's. And how because of this antiquated attitude and outlook, how, so many people are having to self source and self medicate. Which we all know is against what the NHS want, it is not what people on here actually want. They have not choice when the NHS won't listen, and seem to be doing everything to block any hope of viable treatments. The fact that so many Dr's have stopped peoples medication, going against the guidelines.
I also think that the substandard life issues should also be made clear, how this condition is badly diagnosed, by the time it is diagnosed too much damage has been done, and how its subsequent, myriad of, symptoms, impacts on our everyday life, and relationships.
I'm probably being a bit naive, I've only been on the forum a few months, and I am one of the luckier ones who is being prescribed t3 at this time, but I too still have problems and find it hard to get any help or relevant advice from my GP's. Hence I'm here. It may be that thousands of you have already done this, etc....But I live in hope, yet.
One thing this MP did say was not to do a petition, as that counts as only 1. She said we all needed to do individual letters/emails, in our own words.
She also assured us that although Parliament is now due to be dissolved the MP's will still be working and dealing with our queries and questions.
If enough of us respond in this way, would they not have to listen?
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My understanding was that over three weeks ago now, a campaign was imminent.
Am I alone in expecting some kind of leadership from an organisation calling itself Thyroid UK. I know this sounds snarky. We are so many of us reliant on T3 forwhat continuing health we enjoy; many, many of us only knowing of this treatment protocol through TUK. There comes a time when sharing information isn't enough and this time is now. We need some connected effort and guidance.
Those who can't self source are living fearful and concerned that the life they have managed to claw back for themselves on T3 is shortly to be stripped away for no other reason that the government's inability to regulate the price of generic drugs.
How many have seen Ken Loach's film I Daniel Blake ? Is this the future many of us are facing ?
Rapunzel l I have to say, I have just seen a list of posts, all 'petitions', posted about 2-3 years ago - and the responses to posts have numbered only about half a dozen people. It is not very encouraging! I'm just getting the impression that not enough people are seeing these posts.
There must be a way of making them more prominent.
I realise that most people are on here looking for individual help. But wouldn't it be good if we could all help each other, by getting better treatment for all.
Some people, who have more energy and fight in them, have been writing letters. There is a group on facebook called "T3 action group" and some members have been quite proactive in writing and sharing their letters xx
I also know many have written letters to MPs, Health Minister, various government bodies, The Times newspaper. It seems that their hands are tied due to 'political agenda'. Have you seen Concordia's website? They purport to care and give to charities !
Perhaps someone or a group should try to sue them for what they have caused to T3 users.
There is something in the pipeline from Thyroid UK but we don't seem to get updates. I'm sure Lyn Mynott is doing her best. In the meantime, T3 users are being left in total fear with their life support drugs being withdrawn
A quote from Concordia's website ............. makes my blood boil.
"At Concordia International, we strive to deliver quality and value to our customers and patients. Our commitment is to offer the medicines that improve the quality of life of patients and represent true value for healthcare professionals. In an increasingly competitive environment, we support Wholesalers to deliver to Primary and Secondary Care sectors and this long term commitment has contributed immensely to our continuous growth."
Also their quarterly profits are there....
2016 consolidated revenue of $816.2 million
2016 GAAP net loss from continuing operations of $1,314.1 million
2016 adjusted EBITDA1 of $468.1 million
Fourth quarter consolidated revenue of $170.4 million
Fourth quarter adjusted EBITDA1 of $80.5 million
Company establishes 2017 objectives focused on stabilizing the business
Concurrently developing long-term growth strategy
Appointed Allan Oberman as CEO
Their UK office is in London. Perhaps we T3 users should march on their London offices and tell them the mayhem and undiluted stress they have caused to thousands in the UK
The problem here, I fear, is the lack of energy people have to stand and fight! - sadly think that shows in the number of responses here. I've done the CMA/BBC R5L/Times journalist contact - with no real response ,other than the journalist telling me he doesn't write about this issue as he gets too much agro from both sides! Wimp!!! Awaiting response from local MP - overdue, but told they will chase it, so maybe in next day or so. Just looking at all local councillor's, might email see if they can advice...but feel no matter what I do it is just a drop in the ocean. It needs much larger numbers to be doing the same. And not just for our own sakes.
I would be curious what aggro he gets from the "other side". And who exactly is the other side? Is he talking about doctors? Do they really spend their time sending letters to newspapers telling journalists that thyroid patients are whinging, lying, stupid wastes of space who are addicts looking for a fix?
Hi humanbean , good point, would be interesting to know. He called it 'from both ends of the spectrum'. Presumably he must have approached Dr's in the past, as well as HypoT patients. But his response only goes to highlight that this is a real 'battle', with two very opposed sides.
But surely, in this case, it should be obvious that there is a real problem that needs to be dealt with and sorted here? For him to write about it at all he must have known that there was enough people being affected by it to warrant a report? And you'd think any journalist worth his salt would want to be part of solving such a situation...isn't that part of what good journalism is about?
I was very disappointed and quite disgusted with his response.
Journalists don't have time to do investigative work any more, so I've read, they are simply reporters. They have 24 hour news to create, for TV, newspapers, and online, don'tcha know.
Many organisations in the UK, including the BBC, get their science and health news these days from the SMC (Science Media Centre) these days. And the SMC is more like a branch of the government and the establishment than anything else. They control the agenda and the news.
That was the impression I got from both the response from the Times reporter and from the Adrian Chiles broadcast. All too 'imbred'.
Where do we find an investigative journalist? There must be some out there...??
I was saying to my other half today, talk about 'big brother' we are being so 'controlled' in everything we do!! We will lose out brains before long - if the saying 'use it or lose it' is true, we are not allowed to take any responsibility for ourselves or think for ourselves!
I'm not giving up up finding someone to listen. I intend to keep emailing and badgering anyone I can find. (That's how I feel today - tomorrow...may have given up!)
It would be good to get a feel for how many people are actually being pro active?
He runs the above website and quite a few of the articles are by him. He doesn't have a particularly big interest in the thyroid, as far as I know, but has published this :
humanbean Rapunzel shaws marigold22 eghjm100 beaton and anyone else who may be interested. I have just had a reply from Jerome Burne - saying the situation sounds horrendous and sounds like worth investigating. He is saying the 'DMail' may be interested in doing a report.
I have been been wracking my brain over the last month or so about who we could contact to push our case. Dr Chris Steele (This Morning), anyone know (or married to) a helpful lawyer/barrister/QC? The wife of Michael Gove is Sarah Vine a journalist with hypothyroid. Those are just off the top of my head. There must be someone who relishes in an intellectual fight
The BTA has published guidelines but it seems the Endos and doctors are not singing from the same sheet. i.e.
An excerpt:
In the “Information for Endocrinologists” document under the heading “Clinical approach to patients on L-T3” the BTA state, “For patients who are established on L-T3 and are considered to be stable, a change to L-T4 monotherapy should not be implemented without discussion with the patient. In such cases change of treatment may result in significant instability of thyroid status and potentially undesirable clinical outcomes, which may prove more costly than continuation with L-T3 therapy.”
I had some success with writing to the CCG for my area my GP foolishly tried to stop my T3 and got me to see a lady from the CCG once I had contact with them I was away they told my GP that they had not blacklisted T3 yet and until they did he had to prescribe that was last October they also said they would let me know when they put it on their agenda for discussion I foound them very helpful I was polite but persistent asked lots of questions put my case blah blah some CCG have already given their GP a mandate not to prescribe T3 but mostly new prescriptions its worth looking up the CCG in your area
Neither did I but that was October last year and theere has been a lot of press and petitions plus the Thyroid Statement i am hoping it is delaying any banning fingers crossed
I posted something a couple of weeks ago – suggesting a campaign / an outline for a campaign to get better thyroid treatment healthunlocked.com/thyroidu... ZERO response.
Well...one reply.
Earlier tonight, someone has posted about a letter that someone from NZ has written and made available for other people to use, she got in touch with the T3 Action facebook group. healthunlocked.com/thyroidu...
In my post, I suggested that a few published articles be selected [e.g. on the unreliability of the TSH test; which leads to dose reduction; not testing FT3. T3 - the need for; not prescribing it / withdrawal of....] etc.
And a short cover letter – designed so that people can easily adapt it to suit their particular needs.
These would be pinned as a permanent post on the website so that everyone can be directed their for them to quickly and easily print them off to give their GPs and endos.
Numbers could be doubled if family and friends also pass on the same information to their GPs as a matter of course, adapted with an appropriate cover letter.
The cover letter would be a short statement saying that you will adjust your dose according to how you feel not reduce it according to the flawed TSH test. And / or that you will, or are already buying T3 cheaply from abroad [which exposes the extortionate price the NHS pay for Liothyronine] and are doing well on it, if they refuse to test FT3 / FT4 or to monitor you then say you will work out your dose yourself based on your clinical symptoms and how you feel.
Which is what people are doing anyway.
It gives campaigners some leverage and also the potential to attract some much needed media / public interest.
You have to give the journalist a story.
'...Thousands of patients self-medicating in revolt against flawed test / ignoring doctors and experts''... ''NICE / NHS threat to withdraw vital T3 hormone treatment, some patients will be un-medicated, while some patients have to buy in from abroad and self – medicate'' etc.
Petitions have no real leverage and you are still effectively deferring to the 'experts'. A bit Oliver Twist.
Large numbers of people taking direct action would put the experts on the back foot; they would have to come up with strong evidence that supports their case [it doesn't exist] and start answering questions from the media.
Any campaign has to be done in a really organised way, thousands of people acting as one, so all letters / correspondence should be have a campaign title / slogan which is stronger than people acting on their own or writing individual letters.
If you want to get from A to B by the most effective means you have to have a plan, otherwise you end up going round and round aimlessly in a goldfish bowl.
Sorry, you'd have to read my previous post. I still think it's a good idea. It would have been very easy to do, exciting to.
juniperex Hi. I'm going to have a look at the link you posted. And thank you for the above post. I'm sorry I didn't see your post a couple of weeks ago. I'm beginning to see that there are 'flaws' in this forum...or maybe I am not following it correctly - never been on one before like this. But I missed your post, and I'm wondering why? I think that it is because there are so many new threads that if I am not on here 24/7 by the time I do get on some have passed me (and presumably many others) by?
The local MP I spoke to last week was saying petitions are counted as 1...so individual emails are better, but they do have to be 'targeted' valid points. Looking at the bigger picture etc. Which is what you are saying - more organised and such.
I know that TUK have said that they are in the process of doing something, I think we need to see what that is too... Or it will look like we are not standing together on this.
Maybe click onto the follow button when you would like more information as the thread evolves - so you receive alerts into your Inbox - apologies if you already do this
This is the text of my post, which juniperex mentioned:
"A wonderful lady called Belinda Hodson got in touch with us via T3 Action facebook group. Belinda and other thyroid sufferers from New Zealand have written an absolutely excellent and spotless letter asking for a better treatment for thyroid patients, including T3 medication. Belinda is happy for it to be distributed among HU members and to be used either as a whole or just parts of it in our letters.
Many of us want to do something but are too tired and overwhelmed by our health issues. This letter might be of a great help. If you would like to access it message Belinda Hodson via facebook and provide her with your gmail address:
"'Hi Belinda, I am from the Healthunlocked Thyroid UK forum and want a copy of your association letter. My gmail address is ...'.
If you don't have facebook account or gmail adress message me privately. I'm sure we can figure out how to send it to you. It consists of 7 different documents: the main letter and the attachments."
If you would like to have a copy, please pm me or get in touch with Belinda via facebook (unless you already have it. In such case, my apologies for tagging you unnecessarily). I'll also email it to Lyn Mynott.
I've spent time this weekend paying it forward. There are many wiser than me members who do the same not just the occasional weekend but day in day out.. But we don't have the time to read every post. This is why we need lynmynott to rally the troops and get a coherent campaign together. We are otherwise angry as hell but f@rting through a colander. Will someone at TUK please do something. Pretty please with sugar on top
I'm sorry if you were given the impression that a campaign was imminent. There is something in the pipeline, but at present that is the best that can be said.
There are exactly THREE people in the Thyroid UK office, 2 of whom are part time.
Every day we deal with hundreds of emails, including requests for the docs and endos lists and the Pulse article, not to mention dealing with Genova test results and other longer, more complex queries.
On top of this we have many people contacting us by telephone. It is not unusual for phone calls to last in excess of 30 mins each.
We are also trying to keep on top of sending out both the member magazine and an e-newsletter to keep everyone informed.
We also have a membership and merchandise and an information pack, all of which require admin time to manage.
In between all of this, we are working to try and launch a new website to ensure that our information is more easily accessible by everyone.
We are also currently organising a patient conference (news on this coming very soon).
Lyn has recently appeared on 2 radio programmes regarding the T3 issue has been in communication with Concordia and you may want to tune into The One Show Thursday night (assuming that nothing huge breaks in the news).
There IS a campaign in the pipeline, but at present we are doing everything that we have the time, staff and money to do.
I hugely appreciate all the good work you are doing at Thyroid UK. I'm sure other HU members do as well. What I am questioning is the way our workload is being prioritized: you are clearly too short-staffed to do all you need to do. Therefore, it's crucial to decide what are the most burning issues you need to focus on. The T3 withdrawal seems pretty imminent and this is exactly why we are all getting more and more anxious and angry.
What's going to make the biggest impact: lobbying and finding powerful supporters or ...writing articles for the newsletter? Is creating a new website a priority...given that the old one is pretty informative and "good enough" for the time being?
A patient conference would create opportunities to meet other patients BUT many of us are already very well informed and linking with one another online. We need to get politicians, economists, journalists and doctors on ball and a patient conference is unlikely to fulfill this goal.
Maybe we can create a poll and ask HU members what we would like you to focus on, given that you are unable to do it all.
Please don't take my post as a criticism. It's not meant to be.
Sorry, no, not unless you would like us to ignore people's emails, telephone calls, membership applications and Information Pack orders.
Lyn also spent 2 days out of the office last week for travelling and filming for The One Show. This is despite her having bruised ribs from falling out of a car door and also coming down with a stinking cough and cold which is currently preventing her from working.
I don't want people to think that we are whinging, I am simply trying to explain that we are doing what we can with the resources we currently have.
We certainly don't think you are whinging (actually, it's healthy to have a good, old moan sometimes!). We are just s**t scared of what's happening, especially with T3. When people are scared, they get angry. The tragedy is that many of us would like to do something (and some are doing) but we are really struggling with our own health, and often with financial burned of being ill and having to pay for our meds and supplements.
Thyroid UK is always working to make change. We are at this moment organising a campaign regarding T3 and I am always talking to journalists etc to try to get them to do a story....We will be asking you all to help us with a campaign very soon though.
It is depressing to be advised that no such 'campaign very soon' is likely to be forthcoming. Thanks for replying
UrsaP Doesn't it strike you as odd that here we all are typing away on a thyroid charity's forum expressing our dismay at the removal of T3 yet what exactly are ThyroidUK, a registered charity, doing on our behalf?
The last few years lynmynott has advised us to "watch this space", "we're currently working on something" plus other promises which have amounted to nothing but hot air. When campaigning has needed to be done TUK are nowhere to be seen and clearly have zero interest in changing the status quo.
Many people are under financial strain from buying their own medications as well as vitamins and minerals. Also not everyone is able to hold down a job with this condition. Who is fighting for these patients? TUK certainly aren't.
I used to have annual membership, make donations, link to TUK to support the good work they used to do etc. Now I feel that TUK are more interested in pushing private testing due to the commission received.
I am having to fund two health conditions but am very grateful that the charity LymeDiseaseUK are genuinely fighting for patients and have even got some MPs on board. They are relentless with their campaigning even though some are coping with Lyme disease themselves. Am happy to donate to them.
HI Hidden did you see the post from LouiseRoberts on this thread. It might explain why TUK are struggling. I didn't realise it was such a small operation.
I know how hard it is to keep fighting when the condition is holding you/me/all of us, back. But there is no point in three people fighting alone. I actually do not have that much energy myself. That is why I am on here. And why I am desperately trying to get those on here to become more proactive. Yes, I have been worse, I do not want to go back there.
We have to try to help ourselves. We cannot just rely on TUK or any other one organisation. But if we do not all stand together and make ourselves heard, how can we justify our complaints of others? It is now we need to find strength and bond together to get something done. But enough of us have to want that. It will not be easy, it will undoubtedly take a lot of time and energy but surely if we can do anything we should be trying.
Like you, although I am presently being prescribed T3, I am also funding expensive supplements. I too had to give up a good job through this illness. And now, I am also funding a student son, with similar ailments, needing same supplements. Yes it is expensive. But it is only going to get worse if we don't do something about it.
It will be a case of 'the rich get well the poor die early!'
We need the commission from testing in order to run.
If even half of the 'members' on HU actually signed up for membership, this would boost our income to the point where we would be able to afford a dedicated telephone line to remove a huge amount of time pressure, we would be able to afford another member of staff, freeing the existing staff up to work on other things rather than stuffing envelopes and sending the Pulse Article etc.
We are currently in communication with Concordia and Lyn is - hopefully - appearing on The One Show on Thurs night.
For anyone wondering, Lyn is currently off work, unwell.
I'm sorry LouiseRoberts this must be so disheartening for you. I'm so sorry to hear that Lyn is off work ill. I do hope she recovers well and soon.
I myself, admit am guilty of not supporting you financially, recently. I did at one time, until I stopped work - illness. I do intend to rejoin, but when I looked, I couldn't do so online, and having emailed you, I can't find a cheque book!! (Lots of life upheaval over the last few years, it will turn up shortly)
It is a bit of a vicious circle. People need your help, they are ill to the point of losing jobs, need medication that cannot get via NHS, cannot afford to pay for meds and subscribe to help.
The condition causes disillusion with the NHS, with the Government etc. It looks like there is just no light at the end of the tunnel. Despondency grows.
In the meantime, those of us who can, have to just keep fighting to the best of our ability.
I wonder, I know this may involve more work on TUK part, but can we not know something of the campaign in the pipeline? What TUK are hoping to do and achieve? It may help boost confidence?
And perhaps regular reminders that funding is required to keep TUK up and running and helping us?
I have noticed that TUK do not like asking for money. But all charities need support.
The problem is that HypoT is just seen as a 'fat person' disease. Many are led to believe that HypoT is self inflicted via poor diet! I.e the jokes etc. The condition itself needs publicising better. But when GP's treat it with such disregard?
We on here, just need some direction on how we can best help, where to go to be heard and how to best co-ordinate our efforts maybe?
You are all appreciated. Please don't let our gripes upset you.
Louise, if the staff spend so much of their time 'stuffing things in envelopes', why don't you ask for volunteers to do things like that, so that the staff can be freed up to do other things? I'm sure lots of people would be willing to help, if they lived near enough.
LouiseRoberts Please let us know what you think is the best direction for us all to go in on here. Somethings we can be doing remotely that will help with the T3 issue.
I agree that this issue is ultimately important for many of us. If TUK are not in a position as yet to campaign, having never done anything like this, how can we go about getting it started?
Do you have any contacts that we could be approaching, people who may be willing to promote our views?
I've mentioned JB's interest, there must be others. Getting a response, and so quickly from JB certainly boosted my hope that there are people out there...we just need to reach out to them.
Has anyone contacted the Chief Medical Officer of Health - Sally Davies. the above link is her letter about VitD to Health Professionals - maybe something similar - but BETTER should be done for the Thyroid/T3. Apologies if this has already been considered - like many I am not always up to speed
Marz A good idea, and please don't take this wrong as I am in no way wanting to upset you, but I'd guess the best course of action is, if you think of someone, who might be able to help, try it, write to them. And post on here, and hopefully more people will do the same. I am happy to try to sent an email, if I can find an address, but who am I to make a difference, it needs us all to be be writing to everyone we can think of. So far I have emailed, MP, Times journalist, BBC R5L, following Adrian Chiles broadcast the other week, Watchdog - not holding out too much hope as one of questions was 'did you watch the programme this week', - Told truth - no. Don't even know if it was on that week - Hubby would have watched it, but I was probably in kitchen! And I have emailed another journalist Jerome Burne, who seems interested. But we all need to be barraging as many people as we can. Till someone takes note!
Hi Marz been looking through the DH website, there is an open consultation regarding removal of GF foods from Prescription. Are they intending to remove T3 under this consultation, as it is 'banded' with GF foods - is this how they do it? Perhaps there should be a separate consultation for T3 - then perhaps we could all contribute our views there. I'm still trying to find a way of getting directly to D Sally Davies. Not having much luck, but I think when I do I will be 'quoting' the 'What we do' para, in relation to t3.
Also I have been looking at T3 action group page on FB. I've been given a couple of good pointers for the journalist I mentioned in another post - will be passing that on to him... going to look up The One Show, see if can email ahead of Thurs programme.
I really have no idea how they do things - sorry. But if GF foods are up for discussion - then certainly so should T3 Sorry not a FB user - so am out of touch there !
I think this FB page has been set up in response to the problems becoming increasingly severe. But c500 members so far. I only use FB for certain things - this being one of them. I hear it can be quite effective, and we have to try everything available.
I'm thinking if several of us were to contact the DH - could be persuade them to open a consultation - I don't know how it works either. But will try.
Did you see my later post re the DH 'What they do'. Perhaps quoting that back at them might help!
I would like to thank the staff at Thyroid UK for the work that they do. Having been Chair of what was at the time a small national charity, I am aware that staff go above and beyond ensuring that the charity punches above it's weight.
The Department of Health (DH) helps people to live better for longer. We lead, shape and fund health and care in England, making sure people have the support, care and treatment they need, with the compassion, respect and dignity they deserve."
The above is from the DH web page. Perhaps we could be quoting this back to them. There is an open consultation about the availability of Gluten Free foods on NHS prescription. Perhaps we do need to contact this lady and fast, there should be an open consultation about T3.
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