Please Sign My Petition to NHS re Thyroid Treatment

Dear Friends,

I just created the petition "Give Thyroid Patients the treatment and blood tests they need" and wanted to ask if you could add your name too.

This campaign means a lot to me and the more support we can get behind it, the better chance we have of succeeding. You can read more and sign the petition here:

community.sumofus.org/petit...

Thank you!

Diane

P.S. Can you also take a moment to share the petition with others? It's really easy – all you need to do is forward this email or share this link on Facebook or Twitter:

community.sumofus.org/petit...

23 Replies

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  • If any of the Thyroid community is on Twitter please could you promote this petition on that social media?

  • Have signed it

  • Signed & Tweeted, Baggiebod :)

  • Hi Clutter, any chance you could take a quick peek at my post from yesterday and see if you have an explanation fot it.

    Sparkly x

  • Have done! xx

  • Signed and shared.

  • Signed👍

  • Signed and posted

  • signed and shared. Good Luck with this we all need it

  • Signed and shared👍

  • Signed and shared - although with difficulty! It wouldn't accept my first name - although it's a perfectly ordinary name - so I had to put my second name. Then when I clicked on share, it said 'server is confused and doesn't know how to proceed with your command'! lol I've never seen that before. But it all worked in the end. :)

  • Signed.

    Thanks for posting.

  • Hi Baggiebod

    This is not going to make me popular!

    I've just ready your petition and am sorry but I have not signed it even though I fully agree with your intentions.

    Having worked with doctors to the highest level I know how very hard most of them work and how much knowledge they have at the tops of their brains, but they can't be expert in everything.

    If the petition expressed respectf and gratitude for what they do, I'd be glad to sign.

    Just in case you think I'm biased, I'm not, my little brother died at 13 because a GP diagnosed a torn muscle when in face he was in renal failure. They do make bad and sometimes inexcusable mistakes but let's encourage with words of appreciation.

  • Sadly, thyr01d, these are not mistakes. These are a deliberate policy which is set out by the powers that be, based on fallacious and even dishonest trials which constantly ignore the evidence that many thyroid patients do better with medication other than Levothyroxine.

    True, as individuals doctors are not being dishonest, but they are guilty of failing to learn from the evidence before them. Patients who have been ill for years and years are getting their lives back by ditching the Levo and using alternatives, yet when they tell their GPs they are sent off with a flea in their ear for having the audacity to research their condition and improve their own lives and health.

    Could this be in any way construed as a mistake?

  • Yes, I do think the doctors are genuinely mistaken. If we take into account all the very many patients who go into their GPs absolutely certain that they are correct and the GP is wrong, we can see that the GP has a very difficult task indeed, to work out which patient actually has found some correct information.

    It is especially difficult when that information flies in the face of what the GP has been taught.

    GPs are taught evidence based medicine. Trials are done, as you may know, comparing patients reported self-perceptions and their actual changes. Self-perception is often completely the reverse of actual results, for instance if one does a memory test. The results are there to see, in a form that is unquestionable, yet a patient will often believe quite the opposite.

    GPs are also taught to respect and believe the expert consultants who train them.

    This is difficult all round, not just for us but also for the GPs, many of whom really are doing their best. Yes, they are fallible, but which of us is not?

    I do know about being patronised, ridiculed and ignored, in my case four doctors dismissed me, the fourth very rudely, by the time I saw the fifth, with a speech prepared about understanding that there was nothing wrong with me and it was all in my mind but I needed referring to a psychiatrist because I could not cope with the imagined pain .. this GP immediately recognised that I was in toxic shock and severely infected. It took a year of on-off antibiotics to clear, leading to the discovery of cancer of the cervix which by then had spread to my womb - the result would have been death at 34 with 3 young children had it not so happened that the GP knew the colposcopy surgeon so he booked me in early and finding the first cancer told me that because of the speed of growth I would not have survived any longer. He operated there and then without GA because I had eaten, long and painful surgery with LA only. Results came back that he had not managed to remove it all, so he referred me for further surgery to a surgeon whom I knew well who operated the day after he returned from holiday. I survived where others would not have.

    Even so, I genuinely believe the doctors are doing their best and we do better to work with them than against them.

    I fully support your motivation and volition Bagiebod, even so, I still believe that an informed, polite petition will evoke an undefensive, considered response from the medical profession and that criticism can just make people more resistant to admitting they may be wrong.

  • On Levothyroxine I suffered constant asthma attacks, having to take two kinds of inhaler every single day of my life, year in, year out, for almost 20 years, and had a cholesterol level of 10.7, I had at least 15 TIAs over a period of three years until I was given Clopidogrel which destroyed my stomach and I had to take PPIs to counteract the effect.

    On T3 I no longer have asthma so I do not need inhalers. My Cholesterol is now just over 5. I have lost two stones in weight.

    Evidence based enough for you?

    Yet, when I told my GP how all this happened he told me I was a stupid woman and T 3 does not work.

    Mistake? I do not think so.

  • Dear Marram I totally believe you and am not questioning anyone's evidence. I believe you all so much I am trying, unsuccessfully, to get my GP to do a T3 test.

    Please understand I support a petition and all of you who have suffered, and some who continue to suffer.

    The thing is, as you may nkow 'evidence-based' does not mean the evidence of a people dotted about, even if there are thousands, although as I said, I do believe you all, but evidence-based means as in proven in CRTs to work.

    I personally believe that what works for one may not for another, so I am not saying that is the right way.

    It's just that doctors have to have some kind of 'marker' or control otherwise the whole situation would be even worse than it is.

    I fully support a petition, I believe what you all say, I see your suffering and I too have had similar experiences, my brother died at 13, needlessly.

    Even so, I think that if we word requests sensitively we may succeed in bringing the medical profession on side rather than alienating them. I do believe that people when criticised, even the tiniest bit, often become defensive and that is no way forward for us. We need the doctors to want to help us.

  • Well said. What proof do these Dr's need. How many of us have to prove it? How can all these people self medicating prove anything when they have not been 'lucky' enough to get a blood test, despite symptoms, to confirm a diagnosis to start with.

    And when Dr start having/showing respect for their patients perhaps it will be reciprocated.

    I take the point that an informed subservient petition might be read easier, but where has bowing down to this so called superior knowledge got us all so far - no-where. I have always been polite to all the Dr's I see. And intent o remain so. I still come out wanting to cry in frustration because they continue to belittle and ignore the fact that t3 is working for me. More so now that I am now fighting for 'respect' for my son, and for the right for him to be listened to and heard. And tested for the most obvious cause of many increasingly reoccurring health issues that are now holding him back. They seem to want to test everything but what is staring them in the face. In fact they seem to 'not' want to test for the most obvious - i.e Hashi's. If I try to step in to help him by explaining my experiences and family history - I'm told I'm 'looking for' symptoms in my son. they will not even consider that I might be just recognising the symptoms I've lived with all my life. I was told my son was not me - no - but he is half of me so likely to have at least some of my genes??? I will add -that my son has further and worsening symptoms since living away from me! And also -if they are insinuating Munchausens, as I certainly feel, surely that would have manifested on my older son, who still lives at home! They seem to want to focus anywhere but on the real issue - looking for any excuse to give them reason to look no further!

    And what mother, having gone through all their adult life, struggling to survive themselves, being fobbed off throughout but the medical world, - not lazy - married, two kids, house, husband, dogs to walk, did a degree in 40's etc...but struggled through it all, what mother, recognising similar/same symptoms in their child...always wrapped in blankets as cold, lethargic, but not lazy - we joked he was so laid back - we know different now - wiped out for a week after playing rugby - ended up forfeiting a rugby scholarship because of the illness (living away from home at time, 5yrs ago), what mother wouldn't be worried and perhaps over anxious to try to get him the treatment she was denied for all those years and ongoing. Why should I feel guilty about this.

    Oh yes...those Gp's are worthy of no amount of respect...and I mean no amount!

    Rant no..... over!

  • I am sorry you consider my petition to be impolite, it was not intended to be, just a reflexion of the experiences I and many other Thyroid sufferers have had.

  • Well said. So very true - even when we have undoubtedly proved we need alternative meds they -Gp's/medics, choose to ignore what they are seeing - the progress we are making for ourselves. I do not band all GP's together - some of the problems they have is that they do not have the autonomy to make decisions and prescribe for themselves - they are being dictated to. However, it is still a choice. They need to fight for their own rights to practice, before they become obsolete. And so far every GP, apart from the first - 35+ years ago, long retired. And another in recent years who supported me through seeing DR P and onto t3 only, he could see it was working, unfortunately, he has now retired and I'm back to the negative attitude, and lack of knowledge, of remaining GP's. (Newly assigned GP admitted did not even know what t3 was?) They still refuse to get us the help we need, even when the proof is in front of them. They choose to wait for a positive blood test - to cover themselves, perhaps, even if that proof take a decade to get. They choose to look at a computer, rather than look at the person sitting there in ill-placed hope of help from them. They continue to belittle and degrade us. Despite the proof that the alternative medicine works.

    What does thyr01d imagine we should be respectful and grateful for? A lifetime of being condemned to a diminishing quality of life - a half life! And now, with t3 being classified as 'low value' despite it being issued for a potentially fatal condition - with the likelihood of it being withdrawn with no viable alternative being prescribed, to a life sentence! or should that be 'death sentence'.

    I am eternally grateful to Dr P. I have immense respect for him. He treated me like a human and helped me get to the best health I was never even able to imagine before. I had respect for the other two Dr's out the dozens I have seen over the years. Respect and gratitude where deserved. Not just because someone is a Dr's.

    We can all accept we are all human and prone to mistakes. But we do not have to 'appreciate' blind incompetence just because someone has letters after their name.

    (I am not medical, but could also add letters after my name - but choose not to - they do not put me above anyone else!)

  • I take on board your comments and agree that generally GP's do a good job, however I and many more on this forum have had some really bad experiences when seeking help with thyroid issues. I personally think there is no excuse for the rudeness I have encountered which seems to be the default reaction from many doctors when they are out of their depth with an illness which they seem to know very little about. I suggest you read some of the appalling stories on this site where people are patronised, ridiculed and ignored when they are desperately in need of proper medical attention.

    My intention is to make the NHS CEO aware that more training is needed on this subject at Med School, along with a change in procedure when it comes to blood tests. It seems that in order to save money, tests for Thyroid patients are limited to TSH and if you are lucky T4 also, this is simply not good enough! many variations of the illness need other tests to be done to be able to make a proper diagnosis e.g. Hashimoto's needs both of the antibodies testing - otherwise nothing will show up as often the TSH will be in the 'normal' range. If someone has rT3 and it is never tested they are likely to keep being prescribed Levothyroxine and they will just feel worse and worse. It is a false economy refusing to do such tests, as the patient will still try to find a medical solution to their symptoms and often doctors end up running other blood tests to try to find a fit with some other illness, and then prescribe medication to alleviate the discomfort, all of which is likely to be a waste of money and of little benefit.

    If workers in another profession missed finding solutions due to lack of training and/or restrictions on tests then they would be held accountable, and let's face it our health is more crucial than mistakes made in the majority of other industries. Nobody is beyond reproach - if things need improving then we must push for a solution.

  • Hello Bagiebod, I have included a reply to you in the reply above and I agree with most of what you say. It is ONLY our approach I think we need to moderate, you've done a great job, on behalf of us all, and I thank you from the bottom of my heart for that.

  • I have not received a PM.

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