Friday, 14 June 2013

Let's talk about thyroid patient petitions....

Update to this post: 
The below post talks about two petitions. I've since discovered that the first of the two petitions mentioned is actually completely different from the one I thought I was writing about. I am very embarrassed.  I'll have to go looking for the original petition and add a link to it when I can track it down. 
Since this post was written the authors of the first petition have been in touch and we have been exchanging views. I am very grateful to them for being in communication.
I'm going to have to do another post now I think, with my thoughts on this particular petition - or maybe it will be better to add a long comment to this post. I'll think it through and do one of those two things as soon as I can.
For now I felt it was important to flag up my error and apologise profusely to the Lorraine Cleaver, Sandra Whyte and Marian Dyer, authors of the petition to the Scottish Parliament, for getting them confused with a petition it seems they actually have no involvement with.  
Here is the rest of this post:

Recently I've seen two thyroid patient petitions in the UK, there may be more circulating. These petitions indicate to me that there are a significant number of thyroid patients here who are terribly unhappy with the treatment they are getting from their doctors. I knew that was the case before seeing these petitions. It's a crying shame. Something needs to be done. I believe that quality and consistency of care for hard to treat hypothyroid patients needs to be addressed urgently. However I don't think these petitions take the right approach and so I deliberately haven't got involved with either of them.

I promised the authors that I would share some thoughts on this blog. It has taken me a while but I'm doing it now. I believe the authors are well meaning and open to other people's points of view. I hope this post might be helpful for them and for anyone else who is interested in thyroid patient care and campaigning.

Some people are unhappy with their doctors, sadly that's a fact. However, I know that there are also lots of great doctors out there - and many patients (thyroid and other) who are very happy with the care they get. That's important to remember. Our precious NHS is under attack, good doctors need our support.
(When I was first diagnosed with hypothyroidism I went on a thyroid chat board seeking support and was instantly told "you will have to battle your doctors, they are idiots" - neither of these things turned out to be true and it was very unhelpful, when I was feeling unwell and vulnerable, to have those negative expectations dumped on me.)
The first of these petitions  is here (this link has been added to this post along with the update note above, to which it relates) - and a whole load of information on how it is progressing  is on a Facebook group here

The latest petition I am aware of  is here (since the update note above was added, the rest of this blog post now only relates to this latest petition and not to the petition to the Scottish Parliament)

Let me state my position:
  1. I am a "hard to treat" autoimmune hypothyroid patient myself and I have had (sometimes continue to have) a very difficult time with my condition.
  2. Through this blog and my volunteering work I talk to a lot of other thyroid patients (hypothyroid and other) and the ones I talk to are often having a difficult time and frustrated with the healthcare they are receiving.  That said, I believe it to be true that, statistically, we are not the majority of thyroid patients - because most are easily treated, don't have any problems and so don't have any need to talk about their condition. 
  3. I have also spoken to quite a few endocrinologists, both for  my own treatment and because I organise regular meetings in London, where top class endocrinologists come and give talks to groups of patients and answer questions. Without exception I have been impressed with the knowledge and commitment of these doctors and I learn something new from every one of them. Clearly thyroid hormone function  is a vast subject - and the human body as a whole is vaster still. Medical science is amazing. 
  4. I believe strongly that for those of us who do not respond quickly and easily to standard treatment for our hypothyroidism, there needs to be a review - and improved quality and consistency - of care, because too many people are getting a raw deal from their GPs who sometimes refuse to refer patients for specialist help - and sadly sometimes specialist help means an endocrinologist who knows a lot about diabetes but is not as knowledgeable as they need to be about difficult thyroid cases - so a referral doesn't always lead to a solution for the patient.  If your blood tests are "normal"yet you still feel ill and your GP cannot help you should be referred to an endocrinologist, if your endocrinologist can't help you I think they should seek the view of another specialist. 
  5. I have lobbied the UK's leading charity for thyroid patients (British Thyroid Foundation) about this issue and they have told me they are now undertaking a strategic project to look specifically at Hypothyroid Care. I have high hopes for this project because I am confident in the professionalism of this charity which has been established for over 20 years. I believe they will go about talking with the medical profession in a way that will enable meaningful dialogue and I am certain that change for patients can be achieved via their methods.I hope to have the opportunity to contribute to that project in some way. 
As I understand it, the majority of thyroid patients are easy to treat. A minority are not. We are not talking about an insigificant minority - it may be as many as 20% according to more than one endocrinologist I have spoken to. 

I think that both of these petitions start from the premise that the standard treatment for hypothyroidism is no good, full stop. When it works for so many people, taking this stance just undermines the credibility of the petitioners. 

Both petitions also appear to blame "endocrinology" for poor treatment of hypothyroid patients. This makes no sense. Endocrinology is the discipline which studies and treats the endocrine system, while some endocrinologists are doubtless be better or more knowledgeable than others, and clearly there is a need for more research so that more can be known about our condition, to criticise the profession as a whole is desperately  unhelpful.

There are some private practitioners who appear to target hard to treat hypothyroid patients and promise to treat them differently from mainstream medicine and thereby make them well. I have not personally consulted any of these practitioners, because I do not see them as credible and I have spoken to several people who have consulted them and who have not had good experiences. Having said that I know that some people do have good experiences with these practitioners and that's great for them, I'm not against trying unproven treatments when evidence based medicine has no answers, providing the patient is informed and knows the situation. But when a practitioner puts themselves forward as a guru, claims to have all the answers and says that other doctors are ignorant fools -  I get very suspicious.

I know that much more research is needed in order for the medical profession to know more about hard to treat hypothyroidism and all the specialist doctors I have spoken to freely admit they do not have all the answers. And, perhaps because the science is not conclusive, it seems there is not a consensus within the medical profession about what treatment protocol makes most sense for these patients. Some endocrinologists will trial treatment with T3, combined T3/T4 or indeed Armour (porcine dessicated thyroid gland pills - thanks to the reader who corrected my earlier mistake saying they were bovine), others won't and their reasons, when I've discussed this with them, have actually been compelling. As a patient, my own experience tells me that there is perhaps more to many people's symptoms than just thyroid hormone levels and I'd like to see a more holistic approach being taken. 

I took T3/T4 combined for a while, it seemed to help me at the outset but after a while I went back to thyroxine only and actually felt better. As I've written previously, I now think the key to me feeling well was more about getting the right balance of thyroxine and also addressing other health issues (in my case a Vitamin D deficiency and gluten intolerance). The whole T3 thing now feels like it was a massive diversion and waste of time for me. And I've spoken to many others who have also tried T3 and not got on with it. Granted I know that for some people it does seem to be the only thing that will help them. The doctors I have met who are open to using T3 tend to say that research has not proven it is an effective treatment and there are concerns about it's safety, but with hard to treat patients you often have to go with trial and error to find the best treatment regime for them as individuals - and that's the fact of the matter, life is not perfect, medical science does not know everything.  Good doctors will listen to patients and do their best for them.

As patients we need to work in collaboration with our doctors, with respect for each other and open minds. That is what I'm committed to and I firmly believe that is the only way that makes any sense.  So I didn't sign the first petition and I won't be signing the second and these are my reasons.

Let's discuss.....


21 comments:

  1. Where is your link to the second petition please?

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    1. Hi, I've added it now - apologies for the initial ommission, I didn't think the first one was still active. Blaming my brain fog, should have checked. Thanks to Lorraine Cleaver for getting in touch.

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  2. Firstly all NDT including Armour is porcine not bovine.

    I actually don't think the Scottish petition does come from the angle that all thyroid treatment is bad. They have asked for 4 specific things to be addressed, including routine B12 and Vit D testing and recognition of adrenal insufficiency. Personally, my initial reaction was that it doesn't go far enough.
    The difficult to treat patients (including me) may be in the minority but it is still thousands of people under-treated and suffering, and that 20% won't include those who can't even get a diagnosis - and I was one of those for at least 12 years.
    The good, well informed doctors willing to truly try and help their patients are few and far between. And the RCP and BTA need a severe wake up and to start taking cognisance of the research and evidence that's available that says one size (levothyroxine) does not fit all. If petitions get the message out there and start rattling at their door then I'm all for them.

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    1. oops, sorry, getting my pigs and cows muddled up, have corrected the reference to Armour - there are some products on the market which include bovine thyroid gland which is where my mix up will have come from, Nutri-med for example - they spam my blog a lot. thanks for picking me up on that. The nutri-med product doesn't count as proper NDT does it?

      I realise now I must re-read the Scottish petition, I read it when it first came out and my opinion was formed then. I have not kept up with developments as I felt, sorry to say, it was flawed from the outset and I am constantly having to choose where to put my energies. Both you and Lorraine Cleaver's comment below have prompted me to revisit it so I'll come back on the specific points you both raise after I've done that.

      I quite agree that we difficult to treat patients are in the thousands - we are a very significant minority indeed. And I also wholly accept and deplore that there may be very many people out there with hypothyroidism who haven't been diagnosed so the numbers of people who need help may be many more than we can know. It's deeply worrying.

      I don't know if it's true that good and well informed doctors are few and far between. I think we need some actual data on hypothyroid patient levels of satisfaction and wellbeing before we can make that claim and I think we need to be very careful about alienating the medical profession with such sweeping statements. We need medics on our side. Many of them are.

      I do agree that a wake up call is needed in relation to the level of suffering many thyroid patients are experiencing and the lack of good quality and consistent care that many are receiving. for that reason I can't help but admire the campaigning spirit that has gone to the Scottish parliament.

      But my fear is that by seemingly focussing, at least partially, on unproven science the case for support may be weakened.

      I agree that routine B12 and Vit D testing should be done as normal practice and my understanding is that good doctors will tend to run those tests (and many others) already when they have a hard to treat hypothyroid patient. I feel that hypothyroid treatment guidelines need to be developed and should be more specific about these tests and several others, as well as referrals.

      My understanding is that adrenal insufficiency is not something most endocrinologists recognise. I personally need to do more reading up on this to try and educate myself more about it. I find it very hard when medicine is controversial because I'm not a doctor and it's hard to know who to believe. however I see a lot of stuff on the internet which does not stand up to even basic scrutiny and that's why I focus on accredited sources because there aren't enough hours in the day to read and try to interpret everything from everywhere.

      As you say, petitions can raise the awareness of undiagnosed and hard to treat thyroid patients and that's important.

      Different individuals and organisations will work in different ways to try and make a difference and the more we talk and build mutual understanding the more our mutual goals and wellbeing are likely to be achieved.

      thank you for taking the time to comment here. I'm very happy to discuss further if you would like to.

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    2. Yes the NHS only test for extremes of adrenal failure, ie Addison's disease. They do not look at what goes on day to day.
      The thyroid glandulars such as Nutri products claim to have no hormones so they aren't a form of NDT. That's a whole other debate!

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  3. You said in your last paragraph that "as patients we have to work in collaboration with our doctors", but that has to work the other way too. The doctors must work with us but most of them do not. They know best so tell us our bloods are fine even tho we feel really ill

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    1. I absolutely agree it has to work both ways and at the moment, all too frequently it seems the onus is on the patient to drive that collaborative relationship. The new NHS constitution claims to want to change that and doctors are being made more accountable. Some of them are good, we need to focus on working with them and helping them to transform the rest of their profession. If an individual doctor really isn't listening or willing to help - it's time to change doctor and find a good one (and file a complaint if you can bear to), there's nothing to be gained just criticising the profession as a whole.

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  4. lorraine cleaver20 June 2013 at 08:36

    Thanks for coming to our Facebook page, Scottish Thyroid Petition Lorraine. We do not start, as you suggest, from the position that all hypothyroid treatment is no good and, if you watched the video of us in February, you will see that we said levothyroxine works for many people who have primary hypothyroidism but, if you have any other type or conversion issues, it is not enough. I am sorry to the poster who feels we didn't go far enough but this blog is a case in point. You either blog about your illness or you take action, we chose the latter and you have to pick your battles. Long and complex petitions scare the horses and don't get past the post. Best, Lorraine Cleaver

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    1. It was me that said I didn't think it went far enough, but I wasn't knocking it. I realise that you do, as you say, have to pick your battles. And I still think what you've done is a huge step forward. I sincerely hope some good comes from it.

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    2. thanks for engaging in discussion Lorraine, here and on your FB page and twitter.

      I apologise if I have misread the petition. I will revisit it. I also haven't seen the video but I will view it over the next few days.

      I don't just blog about my condition. Like you I do a LOT of work for thyroid patients. Running the London BTF group, as I have done for some time now, takes a considerable amount of time and energy. I wish I could do more. I'm very interested in campaigning but I won't get involved in a campaign unless I can wholeheartedly agree with it's approach. the BTF Hypothyroid Care Strategy will have a campaign element, possibly more than one and I'm hoping to be involved with that in some capacity. As you rightly say, we all have to pick our battles, particularly when we aren't well.

      I'm glad we're talking, though I'm truly sorry I may have inadvertently misrepresented some of what your petition says I'm glad if I've got it wrong and I now look forward to learning more about what you are doing.

      The main aim, as I understand it, to improve things for thyroid patients, is undoubtedly one we share. Progress sometimes happens slowly, I'm a fan of building mutual understanding and I care passionately about making a difference.

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  5. As a hypothyroid patient, in my experience your blog is almost an apologist statement for the medical profession. The medical profession is there to heal, to make well their patients. If their patients remain unwell why are they not digging deeper into the readily available huge range of information that is out there on the sites you mention. There are a lot more. I personally have used the Stop the Thyroid Madness Groups to educate myself and improve my health. And that in a matter of months without medical training. Not rocket science. With the result that my health has improved for the first time in years. But that is not my job. I pay taxes so that the doctors on the NHS have a wage to do that job. I am not being petty or smallminded. It is how this system works.

    One of the difficulties I find with your argument is your statement that perhaps 20% of thyroid patients aren’t being treated well. I would posit the number is much higher. I personally have spent the last couple of years travelling from one consultant to another through disciplines as diverse as cardiology, endocrinology, syncope and falls, and neurophysiology, I have had diagnoses such as heart arrhythmia, lupus, emphysema, ME, fibromyalgia and arthritis.All these have been symptoms of my hypothyroidism. I wouldn't have shown up on your 20% chart as I was being hypothetically successfully treated with Levothyroxine for auto immune hypothyroidism. When the cardiologist finally suggested a heart ablation to treat my arrhythmia and I saw the endocrinologist 2 days later and he lowered the dose of Levothroxine, my heart arrhythmia miraculously stopped. It is a stated side effect of the medication. There are many more like me out there, very unwell and not being treated for the cause of our symptoms, but the symptoms themselves, in isolation. And then those symptoms are called by a different name.

    I spoke with my local pharmacy, I live in a medium sized village in the Scottish Borders, and was told that Levothyroxine is the 3rd largest drug given out on a daily basis. I feel certain that this village is not a hot spot for hypothyroid illness, I would guess that the amount of people suffering from this illness is huge. If pharmacies and Doctors surgery’s gear up for annual epidemics of flu etc I would say that Hypothyroidism is likely an epidemic, based on how many people are getting Levothyroxine on a daily basis.

    The enormous difficulty of this illnes is that you have brain fog, exhaustion beyond comprehension, pain and weakness. Trying to educate your doctor or even yourself, can be beyond what you are capable of at the time. Dare I say the unthinkable and suggest that a middle aged, exhausted woman (for 90% of Hypothyroid patients are women) are easier to handle if they remain exhausted. This is of course not true of all doctors, I personally have a good one, but even with a good doctor, sympathetic to the cause, I still have to buy my medication online from places as far flung as Vanautu, Mexico and India. What makes me well is not available on the NHS. When it is true that hiccups has 3 drugs available on the NHS, and Hypothyroidism has one whilst being the 3rd largest illness in my village then there is something fundamentally wrong. With respect.

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    1. "your blog is almost an apologist statement for the medical profession"

      Ouch. That comment gave me a lot of food for thought. Thank you for saying what you believe. I really need to think about this a lot more.

      I'm pleased to hear your health has improved with whatever steps you've taken and I agree - this should not be your job, the medical profession have a responsibility to their patients and in many cases people are being let down and that's not good enough.

      I think you may well be right that there are more than 20% of thyroid patients suffering. But we can't know that. Research is needed to find out more data. Either way 20% is a HUGE number of people and as the medical profession acknowledges that many are affected then the need to take action is clear. I personally don't think at this stage of the debate (with the medical profession) there's a lot to be gained by challenging that number, but I may be wrong - I think more research is VITAL.

      "The enormous difficulty of this illnes is that you have brain fog, exhaustion beyond comprehension, pain and weakness. Trying to educate your doctor or even yourself, can be beyond what you are capable of at the time."

      - I couldn't agree more - particularly the bit about struggling to educate ourselves! But I would hate to think that there are doctors who actively want to keep patients in that state and I dont believe that to be the case.

      Please forgive me for being quiet the last couple of weeks since this conversation started. I was diagnosed with anemia and felt, frankly, pretty wiped out, coinciding with a very busy period where I had to prioritise other things.

      You raise a lot of very salient points and I'd like to pick up on more of them but I don't have time to write more this morning. I also still have to do more reading on the Scottish Thyroid Petition page and haven't yet had the chance.

      I think it's good to talk and build mutual understanding. With much respect back to you.

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  6. lorraine cleaver20 June 2013 at 10:51

    It would be useful if you could say which parts of our petition were flawed from the outset Lorraine. We are not doctors either, and that's why we only reference accredited studies in our petition - that is, they are the trials/studies that have been published, a great many are not, somewhat skewing all peer reviewed research. I apologise for not noticing your BTF work. Does that involve giving out advice on different medications? I've never been to a support group and am confused as to how they differ from online support forums.
    I'm a fan of Thyroid UK charity but I realise BTF is a charity also. Do they help with the costs of the support groups and do you have to only advise on BTF accepted wisdom?
    Finally, I salute your integrity to not involve yourself in campaigns unless you agree with it's approach. I feel the same and that's why Sandra, Marian and I made our own - we don't wholeheartedly agree with any that are out there. Thank goodness we don't need supportive signatures in Scotland - It made it easier to speak our own truth and not be tied to an umbrella organisation who may have their own agenda after all.

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    1. Hi Lorraine, I'm still to come back to you on your petition and I promise I will. I just haven't had the time yet to go through it thoroughly. Apologies for that.

      In the meantime I just wanted to pick up on the questions you asked about BTF and my involvement with them.

      As a BTF volunteer local coordinator who also provides telephone support I can only talk about my own experience and provide emotional support, I can't give medical advice but I can share quite a lot of insight from my own experiences, the experiences of other patients I have spoken to, my knowledge of how the thyroid works, treatment guidelines and my understanding of medical knowledge of the field, which I would never claim is complete as the subject is vast and I have no medical qualifications whatsoever. I always ensure that whoever I'm talking to knows that I am not a doctor and am not qualified to give medical advice. I sometimes take up to three calls a day and get very positive feedback from those I talk to. Recently the number of calls has thankfully dropped as my number is no longer listed at the top of the support page on the BTF site, so I take maybe 3-5 calls a week. I possibly sometimes get more calls than other volunteers because I am the coordinator for London. Sometimes it all gets a bit much and I feel like my life is getting a bit too thyroid focused so I end up having to take a bit of a step back from all things thyroid related.

      BTF head office have supported the London group brilliantly from the outset, particularly by providing literature and high calibre speaker contacts and they pay all our expenses. At the same time we are given donations by most attendees at our meetings and have done a little bit of fundraising as a group, so in fact we cover our costs and make a small net contribution to the charity.

      We do three different types of meetings - thyroid friends get togethers, (informal small groups); Information events, (with an expert speaker and hour long Q&A session) and Patient Voices events, (with patients only). I've written reports on all the different types of meetings on the blog and on BTF website. It's about accessing good quality, reliable information that is medically approved and also meeting other thyroid patients and being able to support each other and compare notes. People usually are very positive about our meetings and everyone is welcome. Mary Shomon came to one a little while back and was very complimentary.

      Of course everything I write on this blog is my personal opinion and I don't speak on behalf of the charity.

      See next reply.... I got caught by the character limit!

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    2. contd....

      "BTF accepted wisdom" is information which has been approved by medical professionals, not just individual doctors (who often disagree with each other) but I guess it's basically "the offical line" from the BTA which is the endocrinologists professional body. I have learned a huge amount from our speakers and one of the things I am very clear about and they have acknowledged is that there is a great deal which is not known about thyroid conditions and more research is needed.

      After initially reading some more alternative approaches to thyroid disease when I was first ill (including Mary Shomon's site), I have tended to steer away from reading information that doesn't come from what I see as a trusted source, simply because I have not had the confidence to judge what I can believe and some of what I read did not come across as credible. But I do plan to look at the information you share on your site now, as I am impressed with your approach and would like to understand more about the science you are concerned with.

      BTF's only agenda is helping patients. It was set up by a lady who has had thyroid eye disease and suffered terribly with it. her story is in the current BTF newsletter and it makes for impressive reading. the charity has been going for 21 years. My personal view is that for most of that time they have not focused enough project work on hypothyroidism specifically, although they have always provided , in my view, excellent support and information for hypothryoid patients and they have done some incredible project work around other thyroid conditions.

      I am optimistic that the recent move to create a new hypothyroid care strategy will be very beneficial for those of us with hypothyroidism. However I'm mindful they are a tiny charity with very limited resources. They do a vast amount on a shoestring and they do it to a very high standard but that does mean that new initiatives often don't move very quickly. As individual patients you, Sandra and Marian have the advantage of being able to drive forward your own agenda without having to wait for anyone else and I salute you for that. I remain concerned that the focus of what you're doing may not be quite what I personally wish it was, or it could be. But I acknowledge that without going through the information on your site in detail I have no way of knowing whether my concerns are valid. In the meantime I salute you in all sincerity for speaking your truth on behalf of all of us and for having the gumption to take it to the Scottish Parliament. Wishing I had more resources myself to stay on top of and contribute to every initiative out there aiming to help thyroid patients. Glad at any rate we are now in touch. It's always good to talk.

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  7. lorraine cleaver20 June 2013 at 11:38

    Will have to correct my post! I don't mean we agree wholeheartedly with any campaigns at all - I mean, of course, any official guidelines/policy statements. The campaigning that hypothyroid sufferers do is excellent in my opinion, and when you consider how debilitating this illness is, exceptionally energetic. Thyrid Change in particular is impressive in the depth of support it garners, particularly from world reknowned specialists. We are fortunate to have garnered excellent support to our cause too, by doctors just as eager as thyroid sufferers are to have their life's work listened to. The battle cry that all current practice is evidence based is just not true, they cherry pick the evidence from the past.

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    1. Lorraine, I'm mortified, having just now found the text of your actual petition it's not the one I thought I was writing about at all. There was definitely another one at some point, I think perhaps just before your one and I have managed to get myself confused.

      I've added an update note to the post - with my profuse apologies. I've also put a note on your Facebook page. And I will follow up with feedback on your actual petition as soon as I have time to go through it fully and collate some thoughts.

      Thank you for all your thoughtful engagement so far. I hope we can continue talking and that you won't be too furious with me for my mix up. *very red face*

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  8. Since this post was originally started and the conversation begun with the authors of the petition to the Scottish Parliament I have been very remiss and not yet followed up by reading all the information they have posted on their facebook page. Mainly because there is just so much of it it was pretty daunting. Where to begin, what's most important, I wondered to myself whenever I sat down to begin to approach it, then I would end up doing something else.

    I've also had a lot of other stuff going on of late, so I just haven't prioritised this. I can only do what I can do.

    This morning I woke, uncharacteristically, at 4am and ended up looking at facebook (not usually the smartest idea when faced with insomnia) I spotted a post on the petitioners' facebook page saying it is being closed down, "with immediate effect". the petition is ongoing but it sounds like there's been some unpleasantness, possibly trolling of the group, I'm not sure, anyway, they won't be on Facebook anymore from the sounds of things.

    But it will not stop the petitioners as they seem to be quite well advanced with their conversations with the Scottish parliament and it appears that progress can be followed on the offical parliament website. This seems to me to be pretty amazing.

    I still haven't got my head round exactly what shape these conversations are taking or whether I agree with them or not. Sigh, oh to have a bigger brain and all the time in the world to focus on this stuff. But I'm impressed with the commitment and energy of these ladies and while I've been preoccupied with various other things this summer I am still committed to reading up on it all and potentially engaging further with them in some capacity further down the line.

    I took some time this morning to copy all the info from their page so I can read it in my own time and I left them a little sign off message:

    "ladies, I'm sad to hear you've clearly had some nasty stuff to deal with. I've just gone through every post on this page and copied it for future reference. it took over an hour to do just that! You have been so busy. massive respect to you for all your hard work to date and I hope that in the future we may yet find a way to support each other's mutual objectives, to get a better deal for thyroid patients. with much respect. I plan to follow your progress with the Scottish Parliament more closely than I've done up till now and thank you for all your recent engagement with me since we've made contact. xx"

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  9. As Thyroid/Adrenal patients we all have different experiences and many commonalties too in these experiences.

    To Lorrraine BTF, I find it extremely difficult to toe the Medically endorsed line as you do, and I am a person who always had the highest regards for Doctors, BUT there are Doctors themselves who KNOW that the Diagnosis and Treatments for Thyroid illness are inadequate, and there are Doctors who know of the thyroid/Adrenal link but they are NOT trained to diagnose nor allowed to treat the mhyriad of Signs & Symptoms od Hypoadrenia, and when asked why they don't do something about this Medical ignorance and the consequential devastation to lives, they WHISPER and say that they would lose their job. I have had more than a few tell me that - even one Dr whose wife has Graves disease and as he said with his fingers in the shape of a box, "endocrinologists cannot think outside the square" and this has been 3 members of my family who have experienced this and also many General Practitioners who RELY SOLELY on the TSH "gold standard" Blood test to diagnose and if one is eventually diagnosed by this TSH Blood Test then these many Dr's rely on the test to guide their administration of T4 only Meds. TNHIS IS FACT and maybe your experiences were relatively short and straightforward compared to a large number of other patients throughout the WORLD? It is good to see you attempting to learn more about what the realities are in this area of medicine. I have little faith in Dr's in this area of medicine and after 24 years was FORCED to treat 3 of my family for Thyroid. & Adrenal illness with a GP whispering to me when he had finished reading comprehensive Blood tests "whatever your doing keep on doing it". And this while one is so so very ill watching family members receive the same Medical "ignorance" from the medical people who follow - many through fear of losing their job - the dictates of their Peer groups. Something is terribly wrong in The Endocrinology world and GP's need to be thoroughlyu trained in many areas i.e. Signs & Symptoms, WHAT questions to ask patients to determine a diagnosis and to NOT rely on Blood tests and other technical tests because a number of these tests are FALLIBLE, They need to think for themselves as true Doctors use to do and search for the basic reasons for a person being ill- not rely totally as in Thyroid diagnosis on a Blood test. Lrraine, do much more reliable research and there is much proven research and a lot in the Medical History files too, and you will come to realise that there is more than the BTFs' viewpoints that you have readily embraced. I write this because you are genuine in your efforts to help and help other people with these illnesses. Best of wishes to you.

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  10. Lorraine (BTF Volunteer),

    Just having noticed that you were diagnosed August 2009, may I add to my previous post - 20/02/2014 that you woud have benefitted from the various Patient thyroid orgnaisations that have been active in the 2000's - that were not on the Internet when I first fell ill, and that these orgnaissatoins have stirred the Medical establishment - somewhat, and that you, Lorraine Cleaver and many others have been the beneficicaries of patients who knew that they wanted to be healthy & enjoying life and did research and speak out. as I said n my prior post DO YOUR RESEARCH and this is what many medica researcher do NOT do sadly as there is MUCH in the older records. there is still a most interesfing and helpful Book by a Dr William McK Jefferies who was aan endocrinologist and who for many years of his life was a researcher at Harvard I think and whose iinsghtful work in the area of Adrenal glands is very relevant maybe today more than ever. The book is still available/published - "The Safe Uses of Cortisol" and do visit the site of Dr Thierry Hertoghe - 4th generation Endocrinologist as his sister & brothers are, and is also has Hypothyroidism & Hypoadrenia. He is a world leader in his field (Brussels Dr).

    Apologies but I do have to "sign" with Anonymous as I do not have the other validation requirements listed on your site. My name is Deirdre.

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    1. HI Deirdre, thanks for taking the time to post. I will follow up the references you mention. I think there are essentially three issues at play.

      1/ many patients are not treated according to treatment guidelines and thus many are suffering unnecessarily. I know of very many patients who were unwell and eventually got sorted out when their doctor followed basic good practice, as set down by BTA. I feel it is very, very important that this is addressed as it is unforgiveable that some patients go to their GPs and are not taken seriously when they could be easily helped, or their GPs are ignorant of basic things they could be doing such as optimising TSH to the lower end of the scale (which will often make a big difference). I am pleased that there is some work being done now to address this issue. It's something I have advocated for to the best of my ability for the last few years.

      2/ Many patients (and I am one of these) also have other factors affecting their symptoms. I feel that doctors need to be much more proactive in testing for and identifying such factors and in treating for them, when there is treatment which will help.

      3/ there is not a scientific consensus about some of these factors. For example, I know that going gluten free has helped me enormously, this is controversial with some doctors. Unfortunately my understanding of areas where there is disagreement within the medical profession is far from comprehensive, although I am probably better informed than most. I am not always convinced by information sources some people send me and I don't always read everything people tell me about, there's not enough hours in the day/ brain cells in my head! but I keep an open mind and I aim to always increase my knowledge.

      It's always good to share information and compare notes. I am a bit up to my eyes at the moment, too much going on in my life and a BTF London group meeting tomorrow which may be my last as I'm standing down as coordinator, but I always try and respond to comments and appreciate it when people get in touch. some of the stories I hear of families affected (and mine has been very much so too) are heart breaking.

      sending best wishes back to you.

      Lorraine x

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