Why don't we not all sign Louise Warvill's Thyroid petition, which could help bring about change and choice and at the same time all of us recruit at least 10 people via email or Facebook... neighbours, friends, relatives, work colleagues... the sums add up say 18,000 members x 10 would amount to way above the 100,000 signatures required to trigger a debate in parliament.
Do we want better testing? Do we want a choice of treatments and might we all possibly get a little bit more empowered and better.... answers not on a post card... (dreadful blog to follow), but instead sign and WIDELY share this petition: epetitions.direct.gov.uk/pe...
Beats me - I can't understand it either all we need is for every member - or even everyone who used the site - and just one friend or family member to sign we would have been there long ago.
This is something that us in our own interest. Obviously if people are seeing this they have internet access, it isn't difficult to do. What's the problem?
Pity someone couldn't write a fix so that everyone who needed to use the site had to sign the petition automatically before they could get access - I'm sure we have a massive number of casual users as well as members of both HU and TUK. Gosh I'm grumpy already and it's only quarter past eight!
No! Not you - grumpy - never! I find that impossible to believe
How is the move going - did I miss it while I was away? Hopefully I did because otherwise it means you are still waiting for it all to be over and I'm sure you were waiting to move this time last year.
Good on you, please can you recruit your friends, relatives and colleagues to sign. MaryF
I agree......come on everybody and help make things better for everyone here.You presumably must have problems or you wouldn't be on site.
How about making it a project for a week ........that's not too much to do is it ?
Tell all your family and friends who you contact on line how much their help would be appreciated if they would sign the petition to help improve things for sufferers of thyroid problems.
Write the petition details on paper and hand to people you see regularly at any activities you attend that week.
If you are able to visit half a dozen friendly neighbours and hand the details to them asking if they would mind supporting you.....( I personally discovered three more people taking thyroxine!!) and all were only too pleased to help.
I'm sure we'd all be able to contribute 10 more signatures each in some way and the immediate reward is seeing those numbers on-line grow.
I'm thinking back to when my grandson was 2 yrs old watching his daddy digging in the garden saying " Come on Daddy ...put your back into it!!!! ".......
Our efforts now could maybe help improve things not only for us but for generations to come.xx
Because as long as the RCP and BTA will not accept that there are alternative treatments (due to them being in the pockets of drug companies) there is no chance of change. Anyway, 100,000 signatures means they talk about it no necessarily do anything to change it!! And of course who are the 'experts' that government ask? You guessed it - the BTA and RCP......
Well apathy gets people absolutely nowhere, TUK have made huge changes already and inroads into the very culture you are talking about. I live life with a positive attitude and will continue to push this petition as will others, we are all quite aware of what we are up against, but doing nothing is not an option for me. MaryF
Well, I have been part of several campaigns on difficult subject matters which have ended with success against the odds. I am sorry that you feel so terribly negative about the good efforts people put in to make the lives of others better, I will continue to support TUK in every way I can. I hope you feel much better soon. MaryF
Why do you think I am negative? Because I am realistic? I support lots of ways of challenging the 'norm' even though I know they are doomed to failure! If only there was a way to get at the RCP and BTA....
I don't sign petitions, its just a means of gathering e-mail addresses to bombard you with e-mails. I was getting 30 - 40 a day with no way to block them because they were from different people at the same company!
Yes, I am fully aware of what we as patients and Thyroid UK are up against and I also work at quite a high level in some places, and change is coming, and it is being brought about by people who help, not negativity from those who can't be bothered to do anything constructive other than pick holes in peoples best efforts. Luckily my sense of humour does not leave much room for it to affect me. MaryF
The petition is only about alternative treatments and not about better diagnosis. I am still struggling to get a diagnosis of thyroid disorder despite having had symptoms for over a year - for the reasons you are all too familiar with. Therefore, I have no experience of T4 and T3 treatment and cannot judge the issues for myself. I'm not willing to sign a petition based on the experience of others but wish you well.
Beery bird,I can understand how you may feel if you are struggling to get a diagnosis,especially if no one is listening.However, I can assure you that T3 is not an alternative treatment but an active hormone that your T4 should convert to.Sadly for many this doesn't happen and they need T3 added to their T4 levothyroxine in order to help them.
There is a small book available at chemists issued by the British Medical Association ...Understanding Thyroid Disorders by DR,Anthony Toft....£4.99
Maybe this might be worth reading.
I was left undiagnosed for 10 yrs. and under treated for a further 10 yrs .I am very grateful for my T3 treatment .Others have not been so lucky and I believe that unless we all pull together and do something positive for the future ,to make better treatment available at reasonable cost for everyone and not just the lucky few,then things will look bleak.
I wish you good luck and hope you get diagnosed and treated soon .
I'm sure everyone here will do their positive best to help you.
Thank you for your good wishes and suggestions for further reading. I have a lot of family experience of thyroid disorders. My grandmother died as a result of myxoedemal coma and my mother has suffered severe and irreversible dementia due, I suspect, to undiagnosed thyroid disorder so I have researched it extensively. I just think the petition should be calling for both improved diagnostics and more research into effective treatment - and it might have been better supported had that been the case. I was just trying to suggest a reason why more people who access this forum had not signed it, as the original post was seeking to understand. If you are looking to secure 100,000 signatures, it's important to tap into the largest possible constituency. For those still looking for an explanation for their symptoms, treatment options might not be the greatest priority. It's just my view, I'm not expressing any lack of sympathy for those who find conventional NHS T4 replacement does not relieve their symptoms and hope nobody interpreted my comments in that way.
I'm sorry to hear of suffering of your mother and grandmother before you......my mother's life ended in dementia too,which really hit hard as she was such a lovely mother always putting others before herself. Life can be very cruel.This is why I wish to do what I can in some small way.It has taken me until 73yrs old to find answers for myself.I sincerely hope it doesn't take that long for others.
I hope you don't mind me asking BeeryBird, but have you had the DIO2 genetic test? The test isn't cheap (£60 plus another £60 for genetic counselling which they stipulate you have to have) and I don't want to send you up a blind alley but it may provide some much-needed answers.
I am fortunate in that I received an unequivocal diagnosis of Hashimoto's Jan. 2013. For about 10 years prior to diagnosis, however, I had suffered all of the symptoms that I now understand to be a result of the Hashminoto's. Throughout this time my TFT tests were perfectly normal. I very recently did the DIO2 genetic test. The results show that I have inherited a "faulty" gene from not one but both parents which means that my ability to convert T4 to T3 at cellular level is significantly impaired. If you look at the left-hand side of the Thyroid UK Homepage where it says "Testing" you will find details of this test. There is also a link to a research paper that clearly states that in those cases where the DIO2 issue is present the TFT serum results will be normal. And there is the answer. The "faulty" gene had been there since birth. I note that you say that there is some familial history of thyroid disease, which could well be an indicator of a genetic link. (There are familial links in my case too.)
With regard to the petition, on the face of it, when I signed, levo was working for me. In the early stages after diagnosis I did make improvements on levo. I hoped that I wouldn't have to resort to any alternative, but just one of the reasons I signed was because I thought that one day, like the poor souls I was encountering on this site, I might conceivably need that. I have in fact now reached a plateau on levo which is OK but still far from normal.
Although the petition is pretty specific, the research that may result if it is successful will throw open all sorts of avenues for yet further investigation. Getting the debate out there and raising the profile of thyroid disease and the need for further research can only be a good thing.
I realise that I am so fortunate in having a diagnosis, but like so many of us I struggled for a long, long time. I hope that you too find answers.
Does anyone know if it is possible to contact celebrities on twitter? I don't use it but I'm willing to learn! Is it possible to contact celebrities (poss with thyroid condition) in the hope they will retweet?
Yes,I have too.....both my GP and my Endo.....just to let them know how hard ordinary people are working to try to improve things for Thyroid Patients' treatment.
Not willing to sign because it is based on other people's experiences? Really?
WHY would you not want to help thousands of others who find alternatives work for them?
And to the other lady WHY NOT just sign and try and add to the numbers signing? What have you to lose?
If it wasn't for the likes of Mary and others like TUK we would go on suffering forever and these ladies give up their own time to try and help others, so please please ladies take a minute to sign and share this petition. it really could make a difference
Well we can but try, there are people out there doing their thing and also not only changing attitudes bravely, just remembering this film, but also behind the scenes writing letters and recruiting sensible medical advice which as we know is short on the ground: This film of course demonstrates the need for diagnosis not just based on numbers but also a clinical history, and a further demonstration of how an alternative treatment works! youtube.com/watch?v=lyc8N_m...
Mary I think this reminder to sign needs to be posted weekly........until today I had not heard of it, but only been signed up to this forum for a week or two. Great work !!
It will get regular posting, as you are new you have not discovered yet that I go on and on and on and on and on... and may be partial to writing nonsense blogs! MaryF
You can just click on my profile and find them, but here is a really old one, written for a particularly misguided medical professional who seemed to enjoy viewing my profile briefly healthunlocked.com/thyroidu....
BUT - I don't think this petition is a good idea. Hear me out and think about it. In the US NDT is given out like candy. And, over here, doctors are truly held accountable. Thus, US doctors do not do things unless it's evidenced based and their reasoning is air tight and will hold up in court. To diverge for a second, I knew a case where a person didn't get antibiotics before a surgery, got staph, and the jury awarded 1.2 million dollars.. that's the system here. You mess up and you will pay. Doctors here treat with NDT, end of story. NDT is air tight.
They should be asked to immediately support the use of NDT. Instead, this petition tells them that NDT is actually some crazy left field unsupported medicine that needs research. It does not. It needs immediate use. Telling them to research it is shooting yourself in the foot. If the agree to study it, then the NHS can say, it's being studied, continue to suffer for the next decade while we look at it. Why support that?
Instead, a petition should say - this is the standard, it works, it's what is used in America, why are you making us suffer? Give it to us now!
Seriously, telling them it needs to be studied is a bad idea. It doesn't need to be put on ice for study. It needs immediate use. The evidence is out there. They don't need more. They need to start using it. Saying it needs to be studied is directly said this is a questionable treatment and it's not. It needs use. If they decide to study it then they have a "valid" reason to keep people suffering while they do it.
Hi this is not my petition but I support any drive to allow patients to get their hands on NDT, thanks for your opinion. The UK system works very very differently from the USA you need to understand the dinosaur organization which is responsible for the bullying of patients and doctors here! MaryFx
I whole heartedly agree in doing ANYTHING to get NDT in the patients hands. But, do you see how this path could delay, if not, stop that? That's the point. If you personally are writing them - petitioning - and your own words are saying that this medicine isn't empirically supported, your own words are actually saying it's a good idea this unstudied medicine isn't used yet. Do you see what I'm getting at? Saying use this now because it's supported by evidence - good move. Saying - park the matter and study this unsupported medicine - I think that's a bad move. I don't see how saying that gets you the medicine.
Thyroid UK has been around for a long time and, believe me, we have tried all sorts of things to make change.
Here in the UK, they really won't do anything unless it is backed up by evidenced based medicine. Not only that, it needs to be a certain type of research and then it has to be done again to prove the point. There is some evidence but it's not the right type, I'm afraid - nowhere near what they will accept.
Another problem is that NDT is not licenced. It's a very big sticking point and we have to somehow get over that too.
Thyroid UK has had meetings with various organisations and really, the only way we can get this sorted is to show by research that it is as good or better than levothyroxine.
The medics here will not accept that it is used in America or Canada, I'm afraid. They don't work that way unfortunately. There are a lot of doctors who want to prescribe it but are afraid to because they might get into trouble. There's a lot of hierarchy over here and the Royal College of Physicians is the organisation that lay out the rules.
We have other channels we are working on too - it's not just the petition. We can use the petition in our other channels as it's a good tool to show how many people want more research.
Sorry Mary but I have tried - I've signed every petition there is and written letters to MPs, Ministers, etc. I'm afraid to say that this so called democratic government has another agenda. They have no interest in improving the NHS. They intend to make as much money as possible in privatising everything in sight - they probably have investments and connections to the large pharmaceutical companies. This is why GPs have no option but to dish out expensive drugs - they admit that they cannot fund their surgeries without doing so!
For example, why are GPs told that B12 injections are not safe and warned to be careful of overdosing and being sued, when all the evidence is that this treatment is completely safe and inexpensive. We have also to wonder why blood tests for thyroid disease and B12 deficiency are so flawed and lower than the rest of the world. Why is it that so often patients are denied T3, condemning them to half a life, and people diagnosed with PA refused life saving B12 injections, which means they will succumb to psychiatric and irreversible neural damage.
I have given up writing to my MP, because all that happens is that it is passed on to the Minister in charge who passes it on to someone else to write an inane formulaic excuse.
I agree that we should all continue to sign petitions but I am fast losing hope that it makes any difference.....
We all know that big pharma is a disgrace as are the regulatory bodies associated with them. They are just as bad about LDN which patients are being denied! MaryF
I didn't know about LDN...awful... and I certainly didn't realise how much influence the pharmaceutical companies had on an individual GP's ability to prescribe what was was in their patient's best interest until I joined these forums and investigated further.
Maybe we need to have a more general petition that brings all these forums together to gain even greater support - just a thought?
Already signed this petition so not allowed to sign again... hope you get enough signatures very soon...this has to happen since Scotland took it to Parliament. My Endo refuses to try me on NDT and have suffered for 29yrs with many side effects and T3 is not making much difference even tho classed as a high dose. We need many more thyroid specialists who are willing to try all treatments available to us, including natural dessicated thyroid, which has been proven to work for so many people, when nothing else did. I am fed up of being kept unwell by so so-called Specialists in Thyroid Disease. As far as I can see, after seeing mine for 6yrs, my quality of life has still not improved and I just get told to come back in 6mths and I know that nothing will have changed..
Fed up and needing everyone to sign for what is our right for proper care from our medical profession! Come on! We need many more signatures to change things and get our health back to what it should be! This is within our reach if only we can get those in Parliament to change the way we are treated by Endocronologists in the NHS
For those who think that change will not happen, please think about the bigger picture. It maybe that this petition and/or individual approaches do not directly cause a change in UK policy. However, the more we raise the issue in peoples' consciousness, the higher it will rise in the NHS agenda. Similarly, you may just change someone's life. I myself came across a different thyroid petition 2 yrs ago and had know idea about thyroid issues until seeing it. This made me do further research and subsequently I changed my approach. I am now no longer house/sofa bound!!
Let's keep it up Mary - now 6122 signed, thank you! 6 months to go.
I've been here over 4 years, after I was told they would remove half my thyroid - I knew nothing about the gland. I don't know where I would be without other folks' experiences & TUK, in a very lonely place - my GP(s) say I don't have a Thyroid problem and I remain undiagnosed.
Change has already happened, and how many members have been empowered to ask questions and get better treatment? (although some forced to treat themselves or just suffer for years...)
We have to make everyone aware of the fact that Levo is NOT the only choice (although c. 85% 'do well' on it and are probably not on this site) but lots don't.
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Have forwarded it to others....
x
important
Water, water everywhere, and why we need it - but not if Nestlés have their way!
