Legal challange probably not a goer so lets get political.

They are going to regret retiring me on health grounds, nursing did keep me occupied. My Gp told me the other day that he was aware of there being a community of people unhappy about thyroid treatment. I thought after that we could be described as a community but with 50,000 of us and several other websites saying similar stuff, numerous books written and supporting us at least about twenty doctors even if some do it quietly we are a bloody uprising and if it wasnt for the end of legal aid they would have changed their tune ages ago. I don think we are big enough or a lot of us well enough to make a big enough march to get on the news but I am thinking that at this stage we need some public attention and need a couple of celebrities to take an interest and maybe speak publically about the issue. I am up for writing to Jo Brand, I also think Dawn French and Oprah might be interested. Also those magazines like take a break, they have a lot of readers and love these real life stories and is anyone up for writing to Prince Charles to ask if an award can be given to Dr Chandy for his B12 work.( as a side issue) Also anyone know of any celebraties that have had chronic fatigue or thyroid related stuff that can be contacted. We might have to knock on a lot of doors but we need to bring this debate out into the wider public eye and have a public debate about it so that all these silly useless endos and GPs will have to talk thier crap on tele where the whole country can see how irrational they are. Its a lot to do but there are a lot of us so we only need to do a tiny bit each. Anyone up for it!

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  • Been thinking this for a while.

    Unfortunately, 'he who shouts loudest' and all that.

    Dr Michael Moseley featured poor thyroid/Hashis on one of his episodes of Trust Me I'm A Doctor a few moths ago.

    Think I remember him saying at the end that it was something that needed further investigation.

    Have thought about emailing him. But as you say, trying to get well involves so much admin such as emails etc.

    There seems to be thousands a d thousands of people worldwide suffering as we do without a voice.

  • We are getting there and it seem to me we would have lot more doctors on our side if they just had time and interest to think things through because we win the rational arguement. Somehow we have to just shout it a bit louder. Great to hear Dr Moseley was talking about it. Oh the admin. Thankfully I am quite well at the moment and have a bit of energy. I have also found that writing paper letters seems to get a better response and a bit less stressfull, almost thereputic to write and I think it is almost a bit of a compliment to people to get a hand written letter. It seems to get me heard a bit better anyway. Everybodys different though.

  • Agree about the doctors having more time and more knowledge would help..But some a stubbornly entrenched in their beliefs.

    I like handwritten letters too, still love sending and receiving cards. As you sat they hold more gravitas.

    I have energy, but lots of symptoms.

    People dont know much about the thyroid/immune isdues, and the problems it can cause.

    But there are many, many of us with thyroid/Hashis/inmune issues to have a voice.

    Let me know if I can help.

  • The ones stubbernly entrenched are probably autistic. I live with a husband and child the spectrum and both of them believe everything the authoritys tell them. I was brought up not to beleive anything I was told but to be respectful and pretend. Unfortunatly medicine is overly academic and will attract studious autistic types not a lot you can do with them other than try to persuade the authoritys to give them new instructions.

  • I also think the nature of the job restricts them a lot. They are very aware of sanctions if they waver from the flow charts they have to follow.

  • Thye are frankly micro managed and lots of them would like to do better for us and embrace stuff that would get us well but too intimidated by GMC> They need to be able to listen too us we need to increase support and I know this is ruthless andI dont think it should be done with out a lot of thought and consideration butthe GMC made an example of Dr Skinner that putfear in te hearts of many doctors in this country. We might have to do the same t one of the doctors who represents them. We need the doctors to realise that we are a force to be reckoned with just like the GMC. It will be stressful for them but they are well paid and making a hell ofa mess of thier jobs right now.

  • I realsie I am sounding a bit too strong and going over the tops here apologies.

  • Oh thanks for this comment, I laughed out loud!

  • They ran about half a programme focusing on it..remember one lady saying how difficult it was to get treatment. Will see if I can find it online.

  • Here's the link to their website item on this

    bbc.co.uk/programmes/articl...

    it basically covers what was in the programme.

  • Thanks...😊

  • Go for it and I am up for joining you no matter how ill I am. My full story is International, truly aweful( woke up post TT with no pain relief and given brufen in a Middle East country) and years of neglect, been housebound for 6 months, social Worker and Counsellor and unable to work! Didn't Rod Stewart have thyroid cancer? I am sure if we found a Celebrity to back us with same condition they wld be best trumpet for our cause!

  • Yes he did Sarahpk. I believe he was quite active in supporting caner diagnosis and care. Certainly for a few years after his op. Hes also married to Penny Lancaster - Loose Women panellist. Also Cherie Hueson I believe is hypo - ex Loose Women panellist. Prime daytime TV lets see if we can get it featured !

  • Hi Kitti1 how are you? Sarahpk Think Rod might be a good one to contact - along with Penny Lancaster, if anyone has any way of contact. We do need to get something ongoing. Has anyone come across any 'Consultations' at their local CCG yet? Nothing on mine yet but don't want to miss it. 'Up the Rising!' mandyjane

  • Hi UrsaP Sorry yep I'm getting there now. The things you have to do to get the meds you want. I've been so rotten while under medicated. But getting there now. I'll email later. Hope your ok ?

    Ive done a new thread, youll have a notification Yep lets get this moving ( thumbs up - on lap top lol )

  • Of those, my guess is Rod Stewart would get a lot more media attention.

  • Does anyone know him!! If only! (Isn't that a title to one of his songs?)

  • We have got to write to these people. I am still waiting to hear f I can pass a ltter onto Jo Brand via patients assocation. Other ways to contact I think are via agents.

  • I think RodStewart s on the list offamous people posted below if you wanted to write to him. I suppose thats why he has a unique voice.

  • Hi Hezziet The 'trust me I'm a doctor' programme was the start of my journey of discover. A truly life changing moment. For 30 years Id believed doctors, your thyroid levels are fine, here have some anti-d's.

    Ive just seen my new GP at my new practice this morning. she came highly recommended from a friend, not a thyroid friend. In defence of doctors, never thought Id say that ! She was truly ignorant of how to treat thyroid properly. My TSH on their test was 5.4, top of range 5.5 and she said my levels were fine ! all too familiar a story

    Id gone fully armed with lots of literature, which she was more than happy to read and take on board. She was also accepting of my BH blood tests results. She also listened open-mindedly and with interest when I told her that I'd been symptomatic / under medicated all my adult life ( 30 years ) and was now self medicating. I also recommended she have a good look on this forum.

    I guess my point is the level of change need is daunting. But we really have to do something about this. I feel robbed of my life all these years and feel strongly that there are 1000's upon 1000's of hypos dragging themselves through life unaware of the fact that they are most probably dreadfully under medicated. Just saying that gets my blood boiling !

  • Yes I'm up for it

  • Great. We could have some fun seeing if we can stir it up a bit more

  • Been wanting to do something for a long time ..looked at going down the human rights road

  • I am going to write to Jo Brand. She looks thyroidy to me. I wont say that too her but she does look sort of thyroid and she has a bit of horse voice I think. Anyway I am going to write to her and then after the weekend I am going to write to my GP and offer to organise a teaching session at the surgery, maybe on an evening after the surgery closes or during thier lunch. I will try to find some people in Bristol up for doing it with me from here.

  • I've written to many associations, the NHS, my MP, Jeremy Hunt etc. All I get back is the same letter basically saying 'we will do what we want'. I asked why the NHS can't source a cheaper supply of T3, that wasn't answered. I do agree lola1956 that we are being totally ignored, it's like a conspiracy to let us die slowly. Human Rights is an excellent idea. I honestly don't think the BTA or BTF etc will listen to us.

  • I'm going to phone a few human right solicitors today to see if there's help for us out there

  • I can't find it now but UrsaP and I had a conversation about contacting a QC or Barrister. I know of a good one who lives near me during weekends & holidays. I wasn't up to writing a letter due to feeling ill, but we did consider writing to his Chambers and seeing what came of it.

  • Don't take no for an answer. Keep digging. Ive been robbed of my life all my adult life. When I was diagnosed Id just got a place at Poly studying Graphic Design & Illustration. I was too ill for the course and have spent my working life in pretty crappy low paid jobs. THIS IS A HUMAN RIGHTS ISSUE !

  • I think we may be wasting our energys trying to battle with establishment. I dont think poilticians have either the will or the way to change things. Apparently Tony Blair was supportive of Dr Chandys B12 issues and he spoke to GMC to raise concerns about it. Apparently Tony Blaire was told that as he was not a qualified Doctor he should not get involved in things he would not understand. Prime ministers and politicians are not as powerful as people think and also there is probably a lot of curruption at the top of the running of all the government bodies that are supposed to be their for our benefit. However I think if we start lower down, running training sessions for doctors , Gps and nurses and get more of them on our side we will make a difference. It is called a sea change and it has to start lower down. It cant start at the top to much vestid interest we will just be phobed off time and time again. Some publicity to increase awareness of the issues and us orgainsing some training for young doctors. Also kind thoughtful letters to our own GPs with good rational reasons why we feel we are doing the right thing in treating ourselves. Find the kindest ncest doctor in your surgery and write to them explaining a bit about thyroid uk and what we are doing and why and the doctors who have supported us over the years. A lot of them are really caring people who just dont have time to think.

  • 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 tread 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 hudreds 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 pettion. Then for it to be handed to Dowing 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 !

  • Some good thinking there. Writing to MPs might help if we can get one to ask a question in parliment or raise the issue publically it may add to the pressure. I am with you on Harry and William but also lets write to Charles he has had a lot of runs ins with the GMC over the years and is prepared to stick his neck out. My mother used to write to royals sometimes with her more serious issues. She used to say that you need to expect a standard reply pointing out that they cant really get involved and suggesting who else you can turn too. But she reckoned that they actually had a lot of freinds and connections and you dont know who they might be ale to talk to behind the scenes. She reckoned that they are more powerful than governemments as governments only serve fr a short time but the royals are a constant influence.

    .

  • also regarding wrting to MPs to save putting a lot of energy inot something could someone do a standard letter that could be forwarded to MPs. I have known orgs like Green peace do this.

  • I also think writing to GPs could make such a difference. I am quite good at writing letters and think I can produce some gidlines that people might find helpful. I dont think we shouldargue with them though or send reasurch but just a gentle request for them t take a look at thyroid advocacy forum.There is lots of academic stuff they can look at there, it is very well presented and less dry and needs less concenration. You need to take into account that they are very stressed, overworked, underpressure, many have ptsd and some sad to say are frankly stupid. So we need to keep it simple and appeal to their heart strings, we need to flatter, thank,talk aboutall the good they do and let them know you intend to talk aout itwith them next time you see them. Even if you dont go this might enourage them to look int things before they see you. Donttry to get into an academic arguement, they wont take it seriously comming from a patient and they are an arrogant bunch on the whole.

  • I think socail media is good but we need to be careful not wasting too much energy throwing our pearls against swine. I dont think lots of energy into rcp is going to acheive much but a concerted throw of pearls at one of thier members like Vanderproof might scare others i establsihment into wanting to make changes. With are they going to target me next. It sounds ruthless bt bad doctors have een hiding behind rcp for years and we live in very currupt times. Maker an example of one swine but fight the organisation that protects them. We will get hurt and disallusioned and exhuasted. But we do need a cncerted long term push absolutley.

    Up the revolution and its time to turn tables.

  • if nice are asking for imput we should defianely be giving it. Wow you havesome good ideas. We need to think minimal energy maximum imput and f we could get some people in there it would be great.

  • Interesting you say that about the human rights road. I wondered that after seeing the actress that is playing the leading role in the new ITV drama Fearless, about human rights lawyers. She explained how they really live & breath the case and how passionate they get about it. Shot in the dark and needle in a hay stack, but I wonder if we can find a human rights lawyer that is hypo ? Or is that a contradiction in terms lol !

  • Dr Chandy, Dr Peatfield and Dr Skinner, Dr Derry (of Canada) and others we don't know about. All of them lost their livelihoods except Dr Skinner who died through (his patients believe) appearing before the GMC more than I think about 3 or 4 times and it certainly wasn't his patients who complained. He would prescribe NDT if levo wasn't working and for diagnosing upon symptoms and sticking to his guns he came up against ruthlessness. He died of a stroke and his staff were devasted as they loved working for him and every day was a fun day.

    Dr Skinner tried to get all of the Endocrnologists to a Conference as he was treating so many people. He was a virologist who was brought into 'Thyroid World' unwittingly by being sent people from other Specialists because they had 'mysterious illnesses' (CFS, Fibro, ME). He saw right away that they were hypo and treated according to symptoms - not blood test results although he looked at them too.

    The result of this was that he was seeing more and more patients and knew that many were undiagnosed, probably for years. The Conference was set up due to (his words) 'the Parlous Situation' of undiagnosed/untreated patients. I saw him and was prescribed - my daughter undiagnosed saw him and was prescribed.

    Doctors educated before the 60's were taught all clinical symptoms and there were no blood tests to interfere with the diagnosis of symptoms and trials of NDT did not harm patients.

    We also know if our TSH is tested (mine wasn't) and it doesn't fit into the range we remain undiagnosed/untreated and given other medications for the symptoms.

    Anyway, one by one all of these Eminent Professionals, all knowledgeable so that the TSH is the only criteria of confirmation of hypo refused one by one and the last withdrew the night before.

    It's like a closed shop for some reason. They obviously only 'talk the talk' of the Big Pharma and I'd like to know how much they pay to the Endocrinology worldwide.

    It is such a serious problem and we know of some poor sufferers who have committed suicide as they couldn't take any more and I should think on the death certificates it would be 'while the balance of the mind was disturbed' but I doubt they were offered alternatives and I doubt they'd have had their FT4 and FT3 checked.

    I remember a few - one a mother of three whose husband wrote to the forum asking 'Why' did no-one help the family and wife which caused her to jump into the Irish Sea and drown. He was bereaved plus relatives and was left with three young children too young to understand.

    Only the tip of the iceberg I assume.

  • Is Dr Peatfield still unwell?

  • Probably. I think he is over 80 now so good health might be hard (or impossible) for him to find.

  • Saw him at his Crawley clinic last week.

    Very helpful.

  • Interesting I saw Dr Peatfield 20 yrs ago he was brilliant is it easy to get to see him.?Ann

  • Hope he's well now? :-) Yes but he's so spirited <3

  • Checking out his clinic dates on TPAUk and onky lists dates for 2016.

  • He's a stalwart - wishing him well - one of the few knowledgeable gents around :-)

  • Ring the clinic. He is only doing Crawley clinic these days.

  • Thanks .living up in Shropshire now..so a bit of a trip.

  • Yep Hezziet it would be a trip...but could be well worth it? Worth considering. I'm in Northants, probably not so far for m (2hrs each way) and have been to see him twice this year. Went over to Malvern 7 years ago to see him. No regrets. Well worth it.

  • It is a terrible situation. Dr Skinner was a wonderful man whom I sadly only met once. However although I have mixed feelings about one of my aunts being a freind of Margret Thatchers I did learn a lot about political campaigns from her. She would have said that what we have currently is a ground swell. It is when the people at the bottom of the heap or political pyramid start to rebel against the people she would have called the agents of state control or middle classes. This makes the state controllers such as doctors and nurses in this case very uncomfortable and when they start supporting the heap at the bottom the people at the top of the pyramid frankly get quite scared and either back down or are over thrown. An example I think is the Berlin wall comming down because the policemen on duty didnt stop it. We are however politically only a small group so we cant change a government but I think we can get people to back down maybe by degrees but back down they will.

    What Dr Skinner didnt have back then was a large enough ground swell but it is much bigger now and getting bigger all the time.

    It is interesting to me that D Vanderprooft the new head of the british thyroid assocaition has a) left the nhs and B)Is advertising on his website that he doesnt just look at blood tests. He might be just talking the talk and not walking the walk and I am not going to pay £200 to find out but the fact he knows he has to say it to get any custom is a back down if only a small one. Those professors at the top need to be getting more and more anxious, there is not a lot of point us trying to contact them directly we need more public debate and highlight of this issue to change the minds of a few less senior doctors and I think we will have won. We are definaltely getting there it just needs to come out a bit more from behind closed doors. Thank God for the internet.

  • mandyjane, I'll get back to you on this... my experience (and that of several others) - an area with large teaching hospital - is appalling! Yes, something has to change.

  • I have said it before but a good letter writer should write a letter on behalf of us all, to say, Vanderprooft, and we all scan/email our signatures to add to the bottom of the letter. I would not be able to write a good enough letter but would be happy to receive the emailed signatures and assimilate them onto the letters to various people. I am thinking top doctors, celebs, journos, MPs etc. It could be the same letter sent out to them all (individualised to them of course) but with (hopefully) hundreds of signatures.

  • Very good start x

  • If I was to write to Dr Vanderproof I would write to him with a clear plan of the action we are going to take as a group of 50,000 angry people. I would tell him how many letters we intend to write to well known people, how many publicity stunts we plan to execute, how many letters we are going to write to GPs about our own successful self treatment. I would tell him about a compaign we are planning to mass tweet his twitter account that includes all out allies in America and Europe. I would let him know that we plan to stand outside all his private clinics talking to his fee paying patients whats going on in thyroid uk. We could also let him know that we are going to make appointments to see him and cancel at the last minute on the grounds that we heard his treatment protocals were poor. If ten of us did that every week his business would soon become untenable.

    Then at the end of the letter I would invite him to meet with some of us to negotiate.

    We could ruin that man if we wanted to.

    We need to let him know and see what he offers.

  • Oo-er mandyjane, someone, somewhere has to do SOMETHING but do please be careful; those involved could wind up in serious trouble, with thyroid issues just given a further bad press.

    Who are the 50,000 angry people?

    Publicity stunts; is that really a good idea!?

    Several other points = could be construed as Harassment which now, under law, can become quite serious.

    If people were to pursue 'appointment cancellations', telling him?wouldn't work well and charges could likely be enforced if appointments were deliberately and maliciously made to deprive him of his livelihood. It is entirely outwith of the law to set out to 'ruin' someone via his business interests or, especially, his reputation: his professional body would likely support him in legal action... are people up for that?

    The police would [justifiably] remove people for standing outside 'harassing' his private patients and seeking to bring his reputation into disrepute in the 'mind(s) of right thinking people'. Everyone doesn't feel ill and disregarded the way some of us do and doctors are largely believed, still to this day.

    People take on 'The Establishment' at their own peril - IT will stop at nothing to quash you - believe me! People protesting could wind up with a police record... for what?

    'Negotiate'!? Sounds highly suspect, err like 'blackmail'.

    I have the 'balls of a lion' but wouldn't dream of getting involved in much of the above because the risk is too high for little reward, and the likelihood of a police record.

    Something must change... xox

    I HAVE TO BELIEVE THAT YOU WERE JOKING ;-)

  • Sorry I am just thinking out loud and was not aware of legal implications. I am a bit of rebel. I think there are ways of applying pressure and not sure but I know green peace for instance have ran campains outside shops that sell clothes that have been sprayed with chemicals. Maybe mass cancellations of appointments would be harrassment. I will try and look it up. I was not joking. I was thinking out loud and my thoughts rarely form actions like most people. II am angry and determind and I know I go a bit overboard and need others to moderate. I can tsee anything wrong with publicity stunts friend of the earth and green peace do it all the time. It is very effective. So I hear you. I was not joking but thinking about possibilitys and approached that might be possible and I think out loud like this because I know that people like you will bring some useful feedback into it.

  • Oh I'm a lot more than a 'rebel', believe it! I certainly didn't mean to be rude either - I too am angry and determined (when well enough!) but any action taken needs to work, well. Every action that doesn't work (and remember the amazing challenges from Dr John Lowe, Dr Skinner... even they couldn't make things happen with the authorities), further weakens the already poor position that many of us are in.

    You'll find that Greenpeace, Friends of the Earth, etc sometimes wind up being arrested... they are viewed as 'political' (and often have funds to fight issues or don't care!). People protesting about thyroid treatment would be called 'whack-jobs' and it would likely serve to confirm the existing sh*tty public perception (comedian jokes - fat, whining F-ers who are too lazy to... you get it?). Harassing a lead doctor - not merely protesting - and threatening his business interests etc, people would wind up in big trouble.

    Sorry, I really don't mean to put a downer on this. Short of taking them on individually (which doesn't work), the only other route has to be a legal one but that would take sooo much money, for a highly uncertain outcome. NB: 'They All P*ss In the Same Pot" - 'the system' wins; not always, but very often.

    PLEASE let's try to come up with something... a person on FB is trying right now to 'DO SOMETHING' - many of us are in the same boat and really can't take much more from these ******!

  • I am really greatful for your comments Linda and didnt think you were rude. Myself and my youngest child have very similar brains and we are fully of wild whacky ideas with often no concept of the consequences of putting them into practice so someone pointing out consequences is for me a great help when I am thinking.

    Dont ever think you are powerless though. One person can make a huge difference if they put their minds to it. I have been in the very prililaged postition of seeing ithappen in my family against the most appalling odds.

    Dr Skinner and Dr Lowe have paved the way for us and it is often the trail blaisers who take the worst flack.

    I didnt come into this world to be a victim I came to make a difference for the better for future generations and as long as I have breath I will be powerful enough to do so.

    You are powerful too and power is about attitude not circumstance. It isabout the way you look at things and how you see yourself. These people want us to think we are powerless and thye will work very hard to convince us we cannot make a difference, to just put upand shut up. Well I for one am nt going to because I have a fat tired cold 9 year old boy with a tsh of 2 whom I love so much that even though I might not e able toget treatment in the near future he will get it and it will be a lot better than the treatment I have had. For me to get him well I am going to have to change the world for him and I know I can because I have seen it happen before. My mother did it for me.

    ..

  • mandyjane, I was just concerned about people putting themselves in the hands of the law for little to nothing; rather, poor consequences for those involved. 'Brainstorming' is a good way of generating ideas... which need to be carefully sifted through into 'smart' and 'reckless'.

    When it comes to 'The System', and 'appalling odds', both are within my knowledge/ experience domain: I too have experienced 'against the odds' occurrences ON BOTH SIDES of probability and likelihood. The odd personal example is fine (I've obviously seen those too). I'm not speaking from a position of being 'powerless' (like some lil' victim), far from it, BUT there are things possible and things highly unlikely. Yes, I do know about 'attitudes', attitudinal change and huge difficulties entailed.

    Never seen myself as 'powerless' but that is about character... in reality, there is a huge system out there that actually wields, largely unbridled, power which can take decades to penetrate (Hillsborough, Rotherham... sure you can think of examples?): many circumstances are badly, unfairly defeated. 'The only thing power respects is power': (nothing more, nothing less): in this arena, at this point in time... the odds are not good for hypothyroidism BUT people must continue trying.

    So thank you for your concern. I have many necessary qualities... yet all of the attitude/ knowledge/experience (e.g. as Dr Lowe, Dr S, Dr P displayed + many good guys), did not help them when up against 'that system'. No, I am never silenced by injustice; however, working out what is/what is not possible is central to any endeavour. We must, on a personal level, try to work to bring about change; some have no stomach for that but others do challenge.

    My concern was people putting themselves in the hands of the law by committing both civil and criminal acts which would bring the whole hypothyroid situation into even greater difficulty/disrepute than it already is.

    I do hope someone, somewhere is able to find a way through this garbage 😞 and I wish you well in your endeavours. :-)

  • Thank you. I think you are wise and on reflection I dont think we should be looking at doing anything more contraversial than we are doing. I think we do need to be careful to maintain respect and could isolate us from people who migt support us by obviously political acts. I think we need to work at training GPs and young doctors and getting support from celebs. Yes sometimes it does take a long time and longer than we would like bt we can get there. I have every confidence in that.

  • No, I think it takes something much more - I have scant respect for any of these charlatans BUT the way has to be THE way to get people what is needed... to work. I think many young docs are brainwashed and simply looking for a pay cheque in these dreadful times. I have little confidence now in any of it... we need a way to change this garbage. Best to you xox

  • The problem with one letter from all is that it counts as 1. We all need to be able to write in our own words. Perhaps someone could supply a 'template' type of letter that could be adapted.

  • mandyjane What if we all wrote to this D Vanderprooft?

  • In some health-related disciplines, e.g. mental health in general, and clinical psychology, it is absolutely normal to have training sessions for the NHS staff or teaching sessions for students either led or partially-led by the people who have used the services. We could contact medical schools and offer to come to teaching sessions on endocrinology in order to talk about our own experiences and what we found helpful/unhelpful. Medical students are more receptive than old-timers and more willing to listen. It would make far more interesting teaching for them than the dull lectures they have ;) If we want to change the way doctors we need to "corrupt" them when they are young...

  • I have come across this. I agree medical students are often more receptive.It is worth trying the medical schools, They may however be too establishment to allow it. But it s worth a try and GP practices but also a hospital I worked in the drug companys used to hire our a room at back of dinning room where doctors could go for some free cake and sarnies and listen to presentation. So even if schools dont lets us in we might be able to hire room. I traned as psychatric nurse and wonder if because that style is more acceptable in mental health services it might be good to have a go at mental health doctors first. I eard that they are sometime prescribing T3 if we coud stir them up and doing a better job than endos I think they would really like it. I think mental health doctors dont like being underdogs and would like to get one over and I thik mental ealth services generally have ethos of listening to patients and being open to different ideas.

  • Different medical schools may have different approaches so even if some don't let patients in, others may be more open.

    GPs tend to be very overloaded but it's always worth trying. Depends how busy they are. A practive manager would usually have the power to decide or at least take the idea to GP's meeting.

    There was an official document on treatment of hypothyroidism published this year (I don't remember what it was exactly and I'm not sitting at my own laptop so I cannot check), which said something about listening to patients' views...When I was referred to endo services I was shocked with how I didn't feel listened to. I wasn't my usual assertive-self at that time but it was a shock. The culture in endo services seems to be "patients are to be seen and told what to do but not heard". It might be worth reminding them what they should be doing.

    Psychiatrists are allowed to prescribe T3 as a treatment for "treatment resistant" depression (untreated hypothyroidism?) but the vast majority of them never even consider hyothyroidism as a potential cause of person's problems. It's bizarre given that psychiatrists are more likely to explain mh issues by some misterious changes in person's biochemistry (e.g. deficits of serotonin) but it doesn't occur to them to think about thyroid hormones. The same goes for mental health nurses, psychologists, occupational therapists etc. They woudn't recognise basic symptoms of hypo of hyper if the person with the disorder was sitting in front of them. I suppose psychiatrists get some basic teaching on thyroid disorders but it just doesn't seem to be on their agenda in their practice. I don't know whether mh nurses get any training on thyroid disorders.

    I agree with you that mh have the ethos of listening to their patients. It wasn't given, mh patients had to fight for for their rights and there is still a lot of work to be done. If the change was possible in mh services, it will be possible in endocrinology services. Psychiatrists will be willing to listen because any tool you give them that they could use to help their patients will be helpful. Talking therapy resouces on the NHS are very limited, which means that the only tool psychiatists have is psychotropic medication. They would gladly welcome anything else but they lack knowledge in using thyroid meds. One of the HU members was prescrobed T3 in addition to T4 by his psychiatrist but the psychiatrist didn't reduce the T4 and the patients ended up overdosed! The problem is that if psychiatrists don't have the confidence to treat they will refer to endos and we know what it usualy means. On the other hand, if we get there first we could "corrupt" psychiatrists. They are intelligent people, they can learn and most of them genuinely want to help their patients (it makes them feel more effective ;)

  • First met Dr Skinner at his Birmingham laboratories - February 2010 - he diagnosed me hypothyroid without any doubt, (obvious to that optically challenged man on that galloping...). Prescribed Levo but within weeks I was overloaded... nowhere for it to go: I didn't need T4! Prescribed Armour Thyroid, then my GP did on the diagnosis of Dr Skinner (even though two professors in 2008 + 2009 had said not hypothyroid on the basis of a TSH of only 3.8 - 3.3 was the level to reach in the USA at that time). Without Dr Skinner, I don't know where I'd be (I'm not good now... further issues but no one to see). Back again to Endo who dismissed diagnosis of Dr S and Dr P (who advised I'd need T3 alone and that I had low adrenal function) - I'm now back to being surrounded by quackery!

    Best thing I recall is dancing a jig and raucously singing with Dr Skinner in Glasgow - what a wonderful man... straightforward and smart.

    There's also the amazing work of Dr John Lowe, Dr Mark Starr... several hypothyroid greats. Something has to give!

  • You're right. There are some great doctors but the BTA wont listen to anyone and we now seem to know more than those who are supposed to be Professionals. Dr Lowe said it was all down to untruths by pharmaceutical companies determined to spend money in order to promote their 'perfect' T4 and don't forget the blood tests

    Why cannot they eat humble pie and admit many need alternative thyroid hormones and let doctors prescribe without being hauled before the GMC. I don't know if you have seen the following by Dr L to the BTA and RCoPand despite three yearly reminder for a response from both, they never did respond. I doubt they knew he was also a scientist.

    thyroidscience.com/Criticis...

    Levo for me was poisonous and I do know many seem to recover on levo but also those who don't do well are given other medications for the symptoms but never relieved.

  • I remmeber another family comming on here to say that their daughter had died. She had felt ill for a while had blood taken and been told by her doctor on the strenght of those blood tests that nothing was wrong with her. She went staight back to work after seeing him and died at her desk.

    The family said that at the post mortum they found a compeletly shrivelled thyroid gland and hypothyroidism was the cause of death.

  • mandyjane,

    I agree with a lot that's been said here today.

    However, I may have preferred not to have read about the poor young girls demise.

    I have been unwell most of last 2.5 years. GP is so not interested when I tell her that I believe my thyroid is causing my health decline. In fact, as my health got so bad, I ended up, eventually seeing a dermatologist, (GP referred after I returned from holiday been v ill there, and Dr wanted to know why I wasn't getting cared for properly). Dermatologist got certain referrals done and told me to see GP about dose change for levothyroxine. (She thought I was over prescribed to the point of thyroid supression).

    Dr was on holiday, her colleague refused to change dose, told me to see my own dr. I had to wait for 2 months! Now had 3 dose changes, also now diagnosed sjogrens syndrome and chemical allergies (metal, cobalt).

    Fighting for survival, through this difficult time, getting nowhere fast, other than increasing ill days, loss of normal living, I managed to get myself seen at a specialist centre for Sjogrens. (Again, no help GP, internet trawling).

    I have seen the sjogrens team once. What a difference in care provision. Suffice to say, there, one consultant paid attention to me (still), insisting that I believe underlying, thyroid problem. I have pressure on my throat and zillions of symptoms! AT LAST, AGREEMENT TO MY REQUEST FOR THYROID AUTOIMMUNE BLOOD TEST.

    This same consultant, sent me for an ultrasound of Saliva glands.

    Last weekend, I had to return home early from visiting my daughter, I was so poorly. Stayed in bed, slept 36 hrs. Not feeling much better yet but I have started getting angry.

    As I am not due to see sjogrens team till August, and I cannot wait till August, to get my health status improved and answers, I phoned and chased bloods.

    I spoke to a doctor, she said thyroid out of her remit, I explained how ill I feel. She checked computer. YES I HAVE ANTIBODIES TO THYROID. YES SHE HAD ULTRASOUND DETAILS. MY THYROID HAS SHRIVLLED INTO A FIBROUS MASS.

    I told the doctor, I have booked an appointment with a private doctor who specialises in thyroid. In answer to her question.... NO HE IS NOT AN ENDOCRINOLOGIST, (I had to be honest as usual protocol, nhs send important documents direct. Thus, I told her the doctor is an EXPERT, no longer working for the nhs, as they did not agree with him treating symptoms, not just blood test results).

    WHEN THE DOCTOR ASKED ME IF IT WOULD HELP IF SHE SENT ME COPIES OF BLOODS AND ULTRASOUND RESULTS, SO THAT I CAN TAKE THEM TO THIS DR, I SOBBED MY HEART OUT!

    WHY DID I SOB MY HEART OUT?

    BECAUSE I FEEL SO V.V.V. UNWELL, AND MORE IMPORTANTLY, A DOCTOR IS WILLING TO HELP ME!!

    I am praying that the post brings this treasure soon. I am quite anxious now, as I hope and pray, no one within the nhs, BEAURACRATIC, ADMINISTRATIVE, DIS-COMPASSIONATE,ORGANISATION, puts a stop to those documents coming to me.

    After reading your post, I just hope my health doesn't get worse before my private Dr appointment.

    To those people that think handwritten letters are better received, within the nhs. I would just like to say, (in my experience (working in nhs), when I was very poorly managed, due to ill health problems, letters I sent, occupational health sent, went astray? .... as much as the nhs does fantastic work.... it has a very ugly side to it.

    Any letters sent to nhs, are best sent via registered post, with copy to CEO.

    The nhs is a tight, complex, two-faced, organisation, that has saving its reputation at its core, regardless of human cost,..... this is my experience, my own opinion, and yet, I am, as many others are, hopeful, that the nhs will change for the better, because many people will get their voices heard.

    The nhs, is in the business of caring for people, but it has, so often, lost its human face.

  • mandyjane, I do indeed know some of how you feel. I also know that the tighter people are 'boxed in' via shoddy treatment, the more ill we become and the more steps we have to take to be taken seriously. And, the more steps we take, the more they can then attribute 'blame' to the patient... never to their lack of knowledge. Their 'preciousness', eek!

    They are everything and more that you describe above++; sometimes cruel and capricious to boot. Can I suggest - if you don't already - that anything you write is done within the usual ten day business time scale (not hurriedly to reply straight back), even a week, which gives time to check and re-check over your response (to hopefully tone down as much emotion as you can) and not give the impression they're seeking to create about a patient. If you are able to, have correspondence delivered to whoever's secretary to ensure(?) it actually gets there.

    Also: (some of this is from a recent post on here :-) )

    Accept that their actions are dictated by ghostwritten articles and inaccessible data mediated through guidelines that many of them haven’t the guts to stand up to, even if they believe it to be junk.

    Many people, doctors included, find it difficult to accept they simply 'got it wrong'; (instead of being happy to be able to improve for themselves and their patients), so they'll dig their heels into HELL before acknowledging that.

    Recognise that far from being founts of wisdom and compassion the doc and colleagues can get incredibly nasty if questioned. They are obstacles to work around more often than a source of support.

    They seem to have incredibly fragile egos, whilst having such notions of grandiosity: there are psychological/psychiatric terms for much of their behaviour ;-) lol, but those aren't the names I use in private!

    Remember that Medically Unexplained Symptoms can equally point to limitations in current medical knowledge or perhaps his/her lack of knowledge. The term is not a euphemism for attention seeking or psychological problems, (i.e. that from the small % of those with M H issues); doctors ought not simply be permitted to adapt that label to fit anyone they choose to, suffering complex conditions, for their own convenience.

    Take care :-) xox

  • Sorry mandyjane - I should have read your comments below first - I'm 'knackered', freezing cold and... xox

  • webar4780 What a story!! How awful! But how wonderful that you have a helpful Dr. I do hope this 'private Dr' you are seeing manages to help you out. If it is who I think it might be, I'm sure he will.

    have you had your adrenals checked? Just with you mentioning a dermatologist? Would that be for 'rash'. My son struggles with eczema but flair up seem to be adrenal driven.

    I would like to know more about Sjogrens, the symptoms and how it develops. I know some of the basics and have wondered for some time if this could be what I have. (Along with HypoT/Hashi's. All connected) Could you PM me further info? Would appreciate it.

  • It is the way with all state services, NHS, schools, social services and police. In my experiance the police are actually a bit better but my good these services are totally unaccountable and frankly psychopathic. The sad thing is most of the people who work in these organisations start off wanting to help but my god does the system change them.

  • Dont panic about your health. I have been an untreated hypo for 30 years. I have had major surgery twice in that time and 2 babies. It is a very rare thing that people suddenly die of thyroid issues and many many people are not treated for decades.

  • mandyjane That is such an awful thing to have happened. I was pretty close to meeting my maker before I finally got diagnosed - it makes me wonder how many people die untreated like this.

  • shaws I presume a coordinated effort to contact our MPs and complain will be dismissed as activism and the individual correspondence ignored. Mine was quite positive when that tory doctor mp (Sarah someone I think) forwarded my email complaining about ThyroidS being used as an image in a very negative article about dangerous or con medicines on the internet in something unspeakable like the Sun newspaper

  • Dear Shaws,

    Your right I don think we will get anywhere with MPs other than having just looked at thyroid advocay forum asking them to have a look at it and respond. I think there is very little MPs can do currently . We are having some success with getting doctors on our side and think a concerted effort to for groups in different parks of the country to offer training to GP practises will have a huge impact because most of them just need to realise and probably a lot of them are quite dissilusioned about thyriod care as it so often fails, that why they have lost interest. If we can show them that it is possible to get patients well I think a good number of them would be up for it. I am going to try to form a group in Bristol if I can to plan some training.

    We will need to intially bribe them. Maybe champaigne and pizza or maybe a fish chips and thyroid evening. I dont know if GP practices get more money per number of patients like schools and how far funding follows patients but maybe we could offer to highlight their practise as thyroid freindly if they do the training. People think politicians are more powerful than they are but they only decide the laws it is always up to the middle classes as the wether they are inforced or not. I am also thinking under a different banner t form a National Union of Thyroid patients to maybe take some direct action a bit suffregette style so maybe things like going in pairs to hand ot leaflets to patients waiting for endo appointments, stuff to put pressure furthur up even if people dont want to strip off there is always a lot of ways to get attention.

  • TSH110 When did activism get a bad reputation and become something that can be ignored and dismissed? I must have missed the memo about it. :(

  • humanbean

    I am all for activism but I have seen orchestrated efforts to alert MPS to an issue being dismissed as an abuse of the system. I think it is wrong and most certainly in our case as a single voices are easily drowned out. I wonder what we have to do to break down the power of the ill informed, patronising and paternalistic college of endocrinologists who foist T4 monotherapy upon us and seem grotesquely complacent about many hypothyroid patients continuing to have terrible debilitating symptoms which costs the state a fortune and for the individual untold suffering only to be labelled as mentally unwell. Yet NDT resolved my symptoms. I know who I consider to have a screw loose - that lot are illogical and practice very poor medicine based on prejudice and have medieval attitudes to women. There must be a chink in their armour we can start to exploit.

  • I think getting through to more and more of the just uneducated doctors who care but just dont realise. And taliking to trainie doctors who dontfeel they know itall yet.I think thyroid issues have been taken off curricumlem for training doctors so we can train them instead. Start to make these endos look silly and ignorant in front of their peers and they will soon start to make a few little changes. Thye wont admit they are wrong but they might start to offer t3 sometimes and diagnoses things they previously ignored.

  • Dr Skinner trained my specialist - she was attacked by a Gp as he did not agree with her ideas. She had to go to court. She had 10k supporters and after a lengthy battle won.

    So I agree sometimes you have to stand and fight. This is one of those times.

  • The strain that doctors have to go through if they dare prescribe other than levo is horrendous and many doctors have had licencess withdrawn so others are terrified and follow the line, regardless.

    stopthethyroidmadness.com/2...

    Dr Lowe has said that the Endocrinology (USA) have been corrupted by Big Pharma by taking monetary rewards (in kind maybe) to only prescribe levo.

    Considering that NDT was the original prescription and BTA stopped it and now T3. This is from Dr Lowe and despite three yearly reminders they never responded:

    thyroidscience.com/Criticis...

    So many doctors are dismissive of very unwell patients but will prescribe anything other than a decent thyroid hormone that suts the patient.

  • There might be a lot of doctors who wont break the GMC rules who might be happy to lobby for change to those rules. Which is similar to what I am doing. I am not prepared to break the rules and upset the authoritys by having my child treated in a controverstial way because I know the risks are so high of a bad outcome for my child but I can campaign for change so that my child can at sometime have good treatment and keep him out of the lime light. People can make a difference with out getting into trouble if they want. They will not be famous or upfront like Dr Skinner was brave enough to be but if we can just stir up some interest, bring about some discussion amounst large numbers of doctors, get doctors asking more questions and questioning the current guidlines the people who write thise guidlines will have to change them or thier credibility is out of the window.

  • Yes I am thinking to form a national union of thyroid patients to worry people at the top.

  • Lots listed in this old thread, and in one post helvella has a link to 'famous people' document in his Dropbox thingy (please note very technical language 😅 )

    healthunlocked.com/thyroidu...

  • This link goes straight to the PDF:

    dropbox.com/s/0wfljwmb1ayt0...

    :-)

  • Thanks Susie and helleva

  • I tuned into QVC for the first time in ages and saw Alison and how her body has changed and I thought (as we do) I thik she is hypo :)

  • I haven't put QVC on for a long time but remember thinking Alison had changed quite a bit, that must have been a year or more ago.

  • I saw a huge difference but we often say ,even if we sit on a bus we can suss out those who are hypo due to their appearance (underdosed).

  • You can buy little advertising slots on buses. We could club together and buy some space to advertise thyroid uk. Social media is brill but often because it is so big people need to be alerted as to what to look for.

  • My Gp told me the other day that he was aware of there being a community of people unhappy about thyroid treatment.

    Sounds like your GP thinks there is just a couple of dozen of us, instead of over 50,000 people on this forum alone!

  • I am going to write to him and point a few things out. He is a new Gp I felt that my old GP although he never said much other than to call me in when he thought my over the range T3 needed seeing to I sort of felt he found me and my self treatment quite interesting and he sort of respected me for it. Thats how I felt but this new GP was very establishment although he did conceed that my own self treatment was understandable as I was much better and he agreed that the correct treatment offerred by the endo had led to my becoming much worse. I dont plan to see him very often and will try out some of the others in the practice but I plan to write to him because I dont like to be underestimated and I think he thought I was a bit foolish.

  • Rather sounds like a choice! Are you a fan of The Beatles or The Rolling Stones? I think I'll join the Unhappy Thyroid Community (rather than the Happy Smiling Diabetes Group)!

    Many PubMed papers actually accept that there is a large subset of thyroid sufferers who continue to have issues.

  • I think I've seen estimates of anything from 1% or 2% unhappy hypo people to 20% unhappy hypo people, depending on the source of the numbers.

    I would believe the higher estimate far more easily than I would believe the lower estimate.

  • So would I!

    When I first started to be involved in the world of thyroid, I tried to make sense of the fact that most of the people posting had been diagnosed and treated in relatively recent years. I couldn't quite understand why people from previous decades were hardly represented.

    Truth is, that was a figment of the internet - those who were using the internet for health tended to be clustered around the middle aged. Since then the floodgates have opened and we see people who have been extraordinarily badly maltreated and suffered for thirty, forty, fifty or more years.

    Even if we accepted that, say, 15% really need T3, there are so many who are suffering on inappropriate doses of levothyroxine - often severely wrong.

  • Statistics. I can make a guess at things according to people I personally know, not this forum but people I know in Bristol. I know two ladies who seem to be doing very well with their treatment on levo. I know myself and one other who are not happy with treatment. My child is also cold fat and tired bless him and undiagnosed. I think we are looking at about 50% crap treatment.

  • Definately mistreated with too low doses to keep TSH 'in range' ever top of range and ticking the patients off for complaining and prescribing anti-d's instead.

  • Also I have lost count of how many doctors have been totally dismissive of my symptoms. About 10 doctors or more and not any of them has taken my temp or pulse or even thought to look at my enlarged tounge and frankly they have talked utter cods wallop. I remmber one Gp telling me that my tendancy to need 16 hours sleep in every 24 was normal for me. I remmber saying to him that well after 16 hours sleep if it is normal I would expect to wake up feeling energetic and refreshed and yet I only get up because I have too and feel so awful when awake that all I want to do is go back to bed. Silly bloody nonsense they talk and how many people have all the 10 silly doctors phobed off. If fact I have not met a doctor in all my years of ill health who could identify my blatenty obvious symptoms untill I met Dr Skinner.

    I think the % of poor care is higher than 50%. I think the 2 people I know doing well on levo are very lucky and in a small minority.

  • I suspect there are a smaller percentage of people who are very insensitive to their hormone (you might call it 'efficient'). They will do well on 100mcg of Levo just tossed at them with no follow up blood tests, etc. These are the people who are giving all doctors the impression it's easy to treat this disease (surely they must really exist - if not the system as it stands is pure evil).

    And then everyone else fits into a spectrum of how sensitive they will be. So some ppl will be fine with a TSH close to 1 and frees somewhere in the middle of the range. Others are more sensitive and need their frees to be perfect, others even more and can't cope on synthetics, or can't cope on any T4 at all, etc.

    But I also think bullying by doctors and the stigma of being sick does a lot of the work of getting people to pretend to be well, even though their quality of life is very low.

    I meet so many people with thyroid issues who tell me they're doing very well. Then we chat for ten minutes and I find out they're definitely not. Or people who tell me they are struggling on Levo, and when I start telling them about T3 and offer to look at their blood tests, they don't want that conversation.

  • What I find scary about reading the forum is how many people have a very simple case of being on the wrong dose.

    The most common story seems to be the doctor is trying to lower their dose, the TFTs are posted, and its a clear case of being underdosed.

    These doctors give such bad advice, each one must be keeping countless people sick. And then I wonder whether it's those who have the worst doctors who find this forum, or whether we get something closer to a representative sample of doctors :(

  • Wildest estimation is 40 % ! Over here in Finland 5 % is accepted number. At that point only 150 000 was told to be hypo and 5 % makes such a small number of it that nobody cared.

    I believe the number is between 10 - 20 % .

  • So would I, I know quite a large number of unhappy thyroid people and I've yet to meet one that is happy lol.

    I was told of a happy one once when someone told me not to make excuses lol :-)

  • Hehe SaggyUK! I would say I am a happy hypo, but not happy about my treatment :p

  • Yes me too lol

  • I'm finally happy now Ive found t3 !

  • Also we could perhaps start to run some training for junior doctors and the like. In my experiance as a nurse they get their medical mags to read, leaflets from drug companys and in hospitals drug companys hire out large rooms and sponser talks at lunch time. Sometime the talks are quite good but they would never put anything on that they didnt want to doctors to hear. The doctors went usually for the cake and sandwiches and it was free and didnt eat into leisure time. We could even get them some decent pens with thyroid uk written on them because the ones the drug companys give out never work. I dont think we would get any endos through the door but junior doctors are always after a cheap lunch.Traditional bribery. These daft endos need to start looking silly infront their peers.

  • Interesting that your GP mentioned a "community" of us, mine tried to put a figure to it recently. Following diagnosis by Dr Skinner 15 years ago, self-treating but being told by various other doctors that I was endangering my health and there was nothing wrong with my thyroid, I asked for a referral to a new endo I'd read about here.

    The new endo agreed with Dr Skinner, has taken over my treatment, increased my dose of NDT and even said he'll add LDN if my symptoms don't resolve once my levels are at the top of the range. I was talking to my usually non-committal GP about it and mentioned that the endo said my non-existent TSH was irrelevant as I was taking NDT. My GP suddenly began an absolute rant - he told me that it was disgraceful that TSH was used to diagnose and treat a thyroid problem, he should be able to test the FT4 and FT3 instead, they were the right hormones to go by - and that many patients need T3 not thyroxin but he wasn't allowed to prescribe T3 and it was appalling that these patients weren't being treated properly - and did I know there were at least 10,000 people out there not being diagnosed, tested or treated properly.... and so it went on! This is a middle aged, usually very conventional GP, I don't think I've ever been so astonished in my life!

    As for your campaigning ideas, I think that whatever anyone can do would be brilliant, but from seeing others trying to bring about change I think it's an uphill struggle. Some have been tireless but had to give up, but as long as more people keep trying to do something then eventually it will change.

  • I just had a new wrinkle in my prescription for Naturethroid. The pharmacist asked if I was getting regular cardiac checkups. I ask if it was due to the T3 in the NDT and she shook her head "yes". I told her it was nonsense. Now I wonder if my P.A. is going to be harrassed about it. This is getting very sketchy.

  • That's curious Heloise, but I know that here pharmacists are supposed to check that prescriptions are appropriate and won't clash with any other medications the patient is taking, so perhaps this is the next step. Let's hope they're better informed than most doctors about thyroid treatments!

  • I'm certain their training is compatible with FDA or AMA protocols when it comes to single prescriptions. So I'm not hopeful that she would be on "my" side. I hope I can get through to Mexico but they are having problems with the U.S. customs or something I think and it looks like Greece is out as well. Even the online supplier seems to be way behind in orders.

  • Please can someone explain, why big pharma dont just reduce the price of T3 , making it affordable to the NHS , and therefore sell more of it rather than end up with it being priced out of the market? Makes good business sense to me.

    Yes I am up for action. I think our signature tune should be You're a Voice!

  • The only reason that makes partial sense to me is that Big Pharma make too much money out of treating the symptoms of hypothyroidism and the long-term effects of non-treatment, under-treatment, or wrong treatment of the condition.

    But that theory doesn't explain why insurance companies (in countries like the US) or the NHS aren't all over this problem like a rash because it costs so much money in extra GP visits, hospital resources, and prescriptions for dozens of conditions that could be avoided. There is also the fact that millions of people throughout the world are economically useless because they are too ill to work, can't buy things (which make profits for someone), and don't pay taxes or pay lower taxes. Instead they cost money in benefits (where such benefits exist), and die young. And if women die young do they leave behind children or grandchildren who need care? The tentacles of poorly treated disease go everywhere.

    So then I think, well, the decision-makers in the insurance companies and the NHS probably own shares in pharmaceutical companies, so they have personal conflicts of interest, and probably think (if they think at all) that a large number of middle-aged and older women feeling "a bit tired" is a worthy price to pay for them to make lots of money.

  • Had thought about a march to Downing Street but then the whole Brexit debarcle happened so it wasn't the time. Also yes the wirry would be that we wouldn't be enough to really cause a stir.

    I'm in with whatever though as the treatment we receive is horrendous and negligent.

  • a march to Downing street is a lovely idea but it need a huge number to make the news and so many of us are too ill to do it but publicity stunts sometime does have an effect. I remmeber that group who campained for the right of fathers to see thier children and every one heard about their issues at the time.I think they made a scene in parliment.

    How about mad idea here something like a group of the fatest of us marching in London naked carrying signs that say 'NOT FAT THYROID' I would do it for fun. If we just stood by the gates into downing street and stripped of then held up a big banner. We could warn the press earlier that a group is doing a mass streak outside number 10 about poor thyroid treatment. We could maybe get some supportive doctors to talk to press if brave enough. If they dont listen we could take our naked protest to parliment. We would need quite a few of us to be taken seriously. Maybe it s a daft idea but that sort of thing could get people talking and aware.Any other wild ideas people.

  • How about telling your doctor that it isn't just a community , that just in Europe it can be millions if you assume that 10% suffers from hypothyroidism generally. 10 % is estimation so in Europe it makes 78 000 000 people. If it's only 5 % it's still impressive 39 000 000. If 5 % of those are not well or are unhappy it's~ 2 000 000. If 5% of 78 000 000 are unhappy it's ~ 4 000 000. If 10% of 78 000 000 are unhappy it's ~ 8 000 000.

    If wild estimate is 20% them it's ~ 16 000 000 unhappy. And so on.

    Naturally each doctors only worries about their countrymen. But if bigger picture is not seen things never change.

  • There is much good sense talked here. I, too, have witnessed the ineptitude of the medical profession with regard to thyroid treatment. Now, the next bit is easy to say because I live in France, however, at some point the talking has to stop and serious, concerted action begin. Many of us are self-medicating, which in it's own way is a form of protest, but individuals doing their own thing in an uncoordinated way is not going to change much. I yearn for a leadership that would inspire people to come together and protest en-masse: marches, petitions (one's that are publicised so more than 10 people sign them) lobbying of Parliament, BMA, BTA etc. Remember when the Countryside Alliance marched through London to protest (mainly) about the abolition of fox hunting? How many more of US who suffer are there? But it's not sexy to be ill, is it? Imagine a couple of hundred of hypos wobbling through the streets occasionally, when blessed with energy, waving small placards cobbled together from packets of Levo and invoices for private blood tests... Because, in the present climate of random activity, that's probably the best we could do. Somehow, we need to go from a talking shop to a serious movement with leaders that can marshall the troops and bring down the establishment morons who continue to dip their sticky fingers into big pharma's slush funds. We are powerless because we have yet to take power. Helping people to get well by properly advising them when they are failed by GP's and Endos is all very well, but it will never cure the disease of poor education, closed minds and vested interests. I would love to march in serried ranks with my fellow sufferers. If it could ever be arranged it would be worth the cost of the ferry. To the barriers, my brothers and sisters!

  • you're words are brilliant.wish I had the brain power to spout loudly for everyone to hear. Come the "revelation" I'm behind the voices 100%

  • Nice one steviecat Amazing how those beers can make one quite philosophical and focussed.

    Utterly loving placards made from levo packs - I'm saving mine now with that in mind.

    Not quite sure about this but I think I may be volunteering myself to get recruiting some generals and marshaling troops. I don't think I have any choice in the matter. I'll keep you informed 👍

  • Look forward to it, Kitti :-) x

  • Clare Balding already supports British Thyroid Foundation and from my memory had a Thyroid problem

  • Clare Balding had a thyroidectomy a few years back. She would be good to contact.

  • Glad to hear the fighting spirit, about time something was done to help us all. I read a recent article about the singer Leona Lewis being diagnosed with hashis, maybe worth contacting her to see if she would lend her support?

  • Even when legal aid rules hadn't been changed very few cases large civil cases actually got it. Lots of cases depended on (and still depend on) charities helping to fund the case, and barristers, solicitors and other legal people giving their time for free.

    If you can't get that then you can crowd fund legal fees - however someone needs to think of some thing concrete to bring a legal challenge on as medical cases often depend on what other doctors with the same experience would do in the same circumstances and what the current guidelines are.

    You can crowd fund the fees to get a barrister/solicitor to have a look at the initial case to say how likely it is to be successful then crowd fund the rest of the legal fees for the case.

    This has been done for things like taking the Department of Transport to court over Southern Rail and civil partnerships for all. The latter case had two individuals as the subjects - though they lost.

    If you put crowd fund legal fees UK into Google then a few sites pop up.

  • What a wonderful post. I would happily support where it is possible for me to do so. Since my diagnosis and treatment on levo, I have learned to live with the chronic low level symptoms, thinking I was being offered the only treatment available to me....until I came on this site that is! I have no idea how well I could feel but it would certainly be wonderful to feel a little less tired, constipated and unmotivated!

  • I have taken on the local Area Prescribing Committee (responsible for advising about 8 CCG's) single-handed but am being met with constant delays. Was supposed to get an answer last November, hope now for one by the end of June. "Being discussed at monthly meeting, 28th June". Initially I am pressing the case for the prescribing to me of NDT on an NHS prescription. I am, however, constantly reminding them of the fact it is not just me who needs it, there are thousands in this region alone who need the same. Have also informed them of the stupidity regarding T3, even though this does not affect me.

    Encourage everybody to take as much action as they feel they are capable of.

    If we do nowt, then we'll get nowt!

  • Well done Panda. I am sure it has been a very difficault process to go through and it is very brave of you. If you succeed you will have done a huge number of us a great favour and applaud your actions. Dont however build your hope up or let them upset you. Even if you dont win and even the treat you badly there will have been a lot of discussion and disageement in the back ground and you will have made some key people aware of our plight who might be in a stronger position to support us in the future.

  • Hi mandyjane, why not try a well worded petition through Change.org. I thought it was a U.S. organization but I guess it's global. I get them regularly and sign the ones I agree to and changes have come forth. change.org/start-a-petition...

  • Heloise. I think they are quite easy to do and would be well worth the effort just to raise peoples awareness furthur. I have tried to do one before but I struggled to get it off the ground. I am happy to write one and maybe pass it one to you to distribute or you can write it if you want. I am think to start up a union called The national union of thyroid patients and will try to talk to other uk forums today.

  • healthunlocked.com/thyroidu...

    Juniperex came up with similar initiative few weeks ago. UrsaP , Kitti1 and other HU members were interested but I don't know whether they are still working on something or whether it has died out... It might be worth getting in touch with them.

  • The care we are getting now is by any reasonable definition medically negligent. The problems we are having however pale into insigificance when compared to those suffered by patients with Hypothyroidism and Fibromyalgia. Many of those too are likely to be Hypo but that's too hard an argument to win.

    The change we need to campaign for in my view is Medical Negligence Law. As thiings stand in Britain it is far too difficult to sue a doctor for failures - this means they have zero motivation to learn or be adequate.

    It is also far easier to sue them for giving you the wrong thing and causing harm (ie un-needed treatment) than it is for failing to treat or giving less effective treatment.

    British law requires one to prove that almost every other doctor would have acted differently that the harm caused is almost excluisvely due to one mistake and the exact level of financial loss caused.

    This needs to change so that doctors are requird to diangose and act correctly with in a reasonable amount of time and act correctly and in the interest of society. This would mean that if their failures cause a large social services bill exceeding cost of treatment a Doctor or CCG could be found negligent. If a doctor failed to spot hypo for more than six months and you got better with treatment that would be negligence etc.

    As it stands that level of proof required allows then to be irresponsible but also pushes the legal fees through the roof.

  • Mandy

    Good ideas. I have been resisting being pushed out of work for several years due to thyroid and other metabolic problems.

    We need to look at how this country treats non-sexy conditions, and we need to urgently start putting pressure on politicians over our human rights and employment protection post Brexit.

    I am going to see a senior member of the government shortly, hopefully within the next 4 weeks.

    Paul

  • I hope your meeting goes well. Let us know what happens.

  • Hi Mandyjane,

    I'm totally with you on Thyroid,Fibromyalgia & M.E yes these all need to be brought unto the Media how about 'This Morning' programme too?? More celebs need to highlight them too

    Karolly🙋🏻

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