Ive decided to post this. Many great & good people said many great & good things on that thread, as we have before. But I'd really like this thread to be about what action we are going to take. Who can do what and further ideas of the way WE ARE GOING TO MOVE THIS FORWARD
This is the post I put in response to Mandyjane's thread.
Hi mandyjane Thank you for starting this thread. We definitely need to take action.
If feel we need a multi pronged attack.
From below - as you say educating doctors & endos, even practise nurses. All of us need to be giving our doctors concise well documented and referenced evidence of what we already know. Ive just posted a bit earlier in this thread of my experience this morning at my new GP's. juniperex did a wonderful post a couple of months ago - Grassroots Campaign Anyone. We need to get this going. Doctors & specialist obviously have a major input into CCG
From Above - A letter to all MPS, I agree politicians don't have as much power as they'd like to think, but the greater the awareness, the more groups we can get on side the better.
From Above - set up a group for NICE. From what Ive read NICE along with RCP are a major influencing factor for the care us thyriodies receive. they have a thing called the Public Involvement Programme - PIP I quote - 'National patient or voluntary organisations can register as stakeholders for individual topics'. This means we can 'help set the questions we are looking at and comment on the research evidence and draft recommendations. They may also be invited to nominate experts to attend meetings or identify people to join working groups'
From Above - pester the living daylights out of the RCP. Not sure how we are going to infiltrate them yet ? ?
From Above - I have the email address of the afore mentioned Dr Anthony Toft. Dr Toft as in the Pulse article we are recommended to take to our GPS. Dr Toft was President of the British Thyroid Association from 1996 to 2009. And president of the Royal College of Physicians Edinburgh. Unfortunately it is more recently that he U-turned on his opinion of T3. He now is very in favour of the use of it.
Ive not been great health-wise recently, but am starting to get better. I got his email address and have been meaning to email him for a while. To ask his advice on what he thinks we should do, how we can change things. I'll get on with that this weekend.
From the Side - Public Opinion : getting in touch with Prince Harry & William ( their recent mental health campaign, thyroid can cause a mental health issue ) Celebrities, featuring it on TV ect ect
From the Side - a possible march on Westminster / Royal College of Physicians / Downing St.
From the side - Petitions we need a major petition to be signed by hundreds of thousands of people on somewhere like Change.com. We need a co-ordinated social media campaign across twitter & Facebook ect to promote the signing of this petition. Then for it to be handed to Downing St AND the Royal College of Physicians
I believe we need to do this in a concurrent manner. Pushing hard from all sides all angles all at the same time if we have a chance of changing anything
UP THE REVOLUTION !.
I hope I'm not speaking out of turn with this bit - But we did make a small but significant step forward after the last 'ground swell' ( loving that Mandyjane ) of support for a campaign. The wonderful Kitten1978 wrote a brilliant letter directed at MPs. I actually gave a copy to my new GP this morning. So we have a fantastic starting point. We have the letter ready to go to all MPs. We just need to co-ordinate sending it out. ie hopefully enough members in enough districts can print off a copy and send it to their MP, perhaps with a little personal back ground. EVERY MP must receive one.
We must also co-ordinate our efforts with the T3 facebook group and TPAUK and any other groups any one knows of. We must join forces to be heard as loud as possible and from as many angles as possible - MPs, letter writing, celebrity support, TV features, petitions, marches and every GP in the flippin land to get a copy of our soon to be collated hand book on thyroid treatment.
This has to change, for our own health, for the health of 1000's of hypos unaware of their poor treatment and for all future thyroid patients. Big Pharma are not going to keep us ill any longer !
I'll copy more in soon UrsaP marigold22 Saggyuk bluebug Hidden SilverAvocado
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One has to commit to it. First rounds might not be victorious, but one has to continue and never give up.
I wonder if anyone could get the text book they use at medical school now and one from 20 to 40 years ago and see what has changed. If basics of thyroid function is printed on that text book it's valid question to ask why it isn't implemented in practice.
One finnish doc said it out loud. He is doing nothing wrong treating with T3/NDT/combo as he has learned everything from the text book he had at medical school. He has been at medical school late 90's. He has questioned endos about that book.
I have copies of both the British and American 'bibles' of Endocrinology along with the 'starters guide' used by many British doctors who don't specialise.
The starters guide is pretty hopeless, but both 'bibles' indicate a place for T3, hence currently guidelines are flying in the face of established science.
The British bible however 'The Oxford Guide to Endocrinolgy and Diabetes' overemphasises the use of T3 in 'Severe Hypothryoidism'. I would not quality as such based upon labs but needed 50mcg of T3 to feel semi-normal, I don't yet know it that dose is high enough.
Are you saying that Dr Toft changed his opinion about T3 and was against it but is now in favour of it?
I tried to find that Pulse article on the Pulse website but I only found a dead link. I'lll contact the site administrators to ask them why it's been removed. Although Louise sent me a copy it would be good to have an actual link which I can show my GP should I ever have to see her again!
I don't think the Pulse article is still available online. That's why the admin team advise people to email Louise Roberts for a copy.
He also was the doctor interviewed on the 'trust me I'm a doctor' programme saying that t4 & t3 treatment is superior to t4 alone. He is now in private practice in Edinburgh so can openly speak his mind.
With my cynical hat on, Toft may have come out in favour of T3 because I think he may have retired from the NHS (and therefore needs money from private patients).
Yes I totally agree. I guess its the fact that he was president of the BTA and the qudos ( sorry I can't spell ! ) that carries. That and he is the reason I have a chance of feeling well for the first time in over 30 years. If he hadn't done the interview with Michael Mossley ( I guess it may have been someone else ) on the trust me I'm a doctor program I wouldn't have started my journey of discovery into t3 and just how ignorant doctors are in their treatment of our condition.
This is why I'm so passionate about it all. I feel Ive been robbed of my life and am also very concerned how many others out there trust their doctors treatment of hypo.
I wish I could do more but I'm struggling with too many health issues at the moment. I am keeping an eye on what's happening though and it's a great feeling to see that people are willing to do something about this shameful situation.
Thank you Kitten1978 I understand how things are. Sorry to hear you've not had much improvement recently 😞. Thankfully the rollercoaster I've been on recently seems to be settling down and I'm hopefully on the road to feeling much better.
What are your thoughts on a multi pronged attack ? Any other ideas of how to approach / who to approach ? Xx
- we could contact women's rights organisations (majority of us are women, hence it could be seen as a discriminatory issue),
- we could amend the NZ letter from Belinda (it needs info from UK-based patient survey, instead of the NZ one) and use it a similar way they have used theirs,
- getting legal help would be great,
- here was a discussion on T3 action group about writing to scientific journals and writing articles to (women's) magazines. They love a good, real-life story! We need the courage to do it (we already have the skills and the material),
- we could contact mental health charities e.g. MIND. We know that being hypo leads to depression and anxiety. Do they know that? I suspect there are many people within the mental health services, chronic pain and chronic fatigue services, who have undiagnosed or poorly medicated hypothyroidism...Mental health charities could spead the info about thyroid disorders among people who use mental health services.
- we if any of us were willing to talk to students we could contact medical schools. Why should they learn from books and from their undereducated professors if they can learn from us? We know hypothyroidism and how to treat it better than any endo, we are living it.
Hey, I truly admire what you're hoping to do but I suppose my cynical hat is on and not sure if anything will help. I'm not convinced as I'm not sure you can teach people how to be intelligent or not ignorant. In regards to those above, they will continue to do what's best for them rather than what's good for the public. Many docs already don't go by guidelines and many just aren't intelligent or capable to think enough or be interested enough to read up or learn themselves. I'm pretty sure you only need a really good memory to get a medical degree rather than intelligence which was previously thought. I know some people mention docs used to be better before guidelines when could think for themselves but sometimes I just think they got away it more often. No one would question them and completely accepted what they said?? Some people I know still do and wont even go against doc if continue to feel ill and accept ADs etc. And it's not obvious if someone dies from complications of chronic or autoimmune diseases so rarely would come back to them.
I think it's more important to have forums like this and help people learn for themselves - this will achieve far more and help more people. So maybe ways to help people be more aware of these forums would be fantastic - then we can just ignore them. Once people are aware and better informed, they can then stop seeing docs who are crap which effects them financially with low patient numbers - if anything will teach them to treat patients better, this will. Also making complaints if they've been seriously negligent.
However, I will do whatever on the small hope that I am just too cynical and something can be done lol. Just not on my rest day lmao
Hi Saggyuk Thank you for your reply. I do agree with what you day. Especially re forums like this. But if I hadn't seen the trust me I'm a doctor program with Dr Tort talking about t3, I'd still be toddling along believing docs that my thyroid meds were fine and it was anti D's I need. Thankfully been off those for over a month now. I also had a incredible sensation on Saturday - I felt happy ! A new concept to me in many ways, especially while trundling round Asda 👍
I'm not sure right now, I got all fired up and decided to not just have it as a reply to mandyjanes post, but to put it up as a separate post. Only in retrospect seeing that I was volunteering myself as a possible driving force / coordinator. Did a lot of thinking and on my happy Saturday thought yeah I'm up for it. I can afford to dedicated the next year or 2 to this.
But I'm kind of having second thoughts today. I'm not sure if I'm physically / mentally up to it. Very early days for me & t3. Or whether I'm academically up to it. I'm quite new to all this and know less than half of what a lot of older hands at this do.
That combined with that feeling is there any point ? What can I / we really achieve. I know when I get fired up I feel I can conquer the world , well at least my asda shop ! I have had days lately where I've felt virtually bionic ! I'm also very passionate that there are too many people suffering in ignorance as I have for too many years.
It's more because I gave up on them years ago so don't think about it anymore as tends to make me angry/irritable which I try to avoid lol!!
Do not question yourself on your knowledge or whether you're up to it academically, you have what is most important which is knowing what it feels like to be one of those people who have felt awful for so long you almost give up because of bad treatment.
Everyone here would understand if you haven't got the energy so don't worry about that either. Hopefully you'll get more and more bionic days
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