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Thyroid UK
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Inappropriate Posts

From time to time I see posts that aren't really to do with thyroid problems at all, but are propaganda for certain points of view that are both misleading and dangerous. Vaccines are one. Herbal quackery is another. I'd like to see much more vigilance from admin to block and remove such posts as they do more harm than good. We aren't here to confuse, but to help.

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Are the posts popular. If it would suggest they are welcome by people. Also I have found some of the alternative herbal stuff helpful. I agree that this forum should not be a place to advertise or campaign but we need to be able to share our experience. I have strong feeling about flu jab due to an experience with it and I share that when people ask whether it is helpful to them as a thyroid sufferer to have it. I use homeopathy and share about that. You might see that as quackery but it is up to the person reading to decide that for themselves I think, not have a paternalistic admin protecting us as if we are children or lack intelligence.

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I have no objection to the individual describing what they do, even if I disagree with it. What I deprecate is people pushing ideas as a general propaganda exercise, which aren't anything to do with thyroid problems generally.

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I personally have not seen a lot of that. I see people post stuff with utube videos encouraging certain diets or supplements sometimes and sometime that feel a bit pushy. There is a lot of very naff stuff online re conspiracys and stuff but I have not seen it posted here in particaular perhaps I have been lucky and also what is quackery to one person might be helpful to another. I think admin are doing a good job on the whole and the very nature of thyroid issues means that there are a wide range of related health issues to discuss. I think these post are just best ignored by the people who dont like them with maybe a disclaimer stating more clearly that posts do not represent the views of thyroid uk.

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Spot On .

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Yes, that is very different from expressing our own views on something or sharing a link we find useful. If something comes up that we feel strongly about but is not appropriate to argue at length on the open forum we can always discuss through a private message.

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I agree with mandyjane . Knowledge is Power . Members should be allowed to make intelligent decision for themselves . Especially when current issues are at stake and may be of interest to /with thyroid issues .

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But false pseudo-knowledge based on unreason and a rigid agenda is anything but! This is an insidious infiltration into proper rational thinking. There is widespread in the world today promoted by the internet, things said to be true that strictly "ain't so" as Mark Twain put it. And the TUK site is not immune.

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I agree there is no room for false or misleading information . There is unfortunately plenty of it . I agree too that just because it's on the internet it Doesn't Validate it .

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People will only learn to rationally think and critically analysis such stuff by experience. This forum has a wide varitity of views and lots of experinced intelligent people to comment o such info or sudo info. It is patronising, controlling to suggest adults need protecting from information and it also put too much power in the hand of those making the decsions as to what is good science or not, too veto what they dont like. I am very Zen in my style of learning and have my own method of analysing information and sometimes according to my method the proper science posting on here has been rubbish. It took me about a week to disprove a mathematical model posted at one time that had been published in endocronological magazine and posted on here. It was every bit as naff and some of the silliness I see on the internet at times and I cant even do maths. I dont think it shouldn't have been posted even though it was clearly wrong as far as I could understand.

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In general I agree , vaccines ,herbal quackery ,medical medium we can do without .Trouble is some herbs are useful and some posts that reference associated illnesses e.g. diabetes which are of interest.

The post prior to yours deals with drug pricing in the US is interesting but probably not directly relevant to this site.

I have on occasion not agreed with an admin block but they do have a tricky balance to find .

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Apologies, more haste less speed, I am afraid.

I forgot the most relevant link of all, on which I based my post---- have amended my post.

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I think our political establishment is too incompetent to deal with Concordia.

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Totally agree, the conspiracy and anti whatever posts are not helpful and not appropriate.

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Please report any content that you find inappropriate.

HealthUnlocked's Help on reporting is here:

support.healthunlocked.com/...

Treepie bantam12

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Thank you for your post about this Diogenes. As you may be aware, we are a relatively small admin team who voluntarily give up our time to do what we can to keep this forum from being a 'free for all'.

By far the majority of members here understand and are more than happy to 'abide by the rules'. Unfortunately there is a very small minority who simply don't like being constricted and want to use the forum for causes they support other than thyroid.

We do our best, but there are so many posts and comments flowing through that it's often an impossible job to keep up with everything that is written.

As helvella has pointed out, there is a 'report' facility which, when used, will alert us to something we may have missed. Please everyone, help out the admin team by using the report button :)

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It can be a fine line to tread and I admire the work the admins do.

We can all make mistakes, or believe something that turns out not to be true, but attempts to pursue an agenda for its own sake, or to promote something potentially dangerous is, like advertising spam, just not on.

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What exactly do you mean by herbal quackery? For instance I use a camomile wash for sore eyes and it is more effective than anything I can buy in a pharmacy. Is that quackery?

Maybe I have missed some strange posts but I do not recall anything that made me uneasy.

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I would think it's like promoting something positively dangerous or extremely weird (though then we would have to discuss what weirdness is :-D )

I don't think anyone here would think camomile for sore eyes is quackery, just a well known home remedy.

One example of quackery is these adverts that say they have a special miracle cure for some ailment or other that "Doctors don't want you to know about", and try to get you to watch a video demonstrating this miraculous stuff. Which you can buy from them at a special exclusive offer price.

I looked into one of those, touting coconut oil as a cure for dementia. As I used to work for the Alzheimer's Society I checked it up on their site. They said there was no definite evidence it helped, but some evidence it might actually make dementia worse.

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Unsaturated fat had many toxic properties that saturated fat doesnt have. For examppe lipid peroxidation, formation of toxic aldehydes such as malondialdehyde. Coconut oil, being a saturated fat, is very valuable and this has relevance to thyroid activity as well, as popyunsaturated fat, for examplex interferes with transport of thyroid hormone.

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This is exactly the thing I mean. Anyone making such blanket statemnets should provide chapter and verse. Otherwise it's mere supposition. Eg which unsaturated fat are you talking about? Trans fats I suppose, OK. But if you include oleic acid in olive oil in your argument which is an unsaturated fat, God help the Italians. Polyunsaturated fats? Linoleic acid, linolenic acid, arachidonic acid which are essential polyunsaturated fats for health which we get from our diet..

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I'm dissapointed in you diogenes. If your argument was applied to your own posts you'd be banned from this board. Most doctors would consider the use of t3 "unscientific". The burrs established the so-called essentiality of unsaturated fats, but certain nutritional factors attendant high metabolic rate were not known at the timex and not accounted for. Unsaturated fats generate lipid peroxides whereas saturated fats do not, by virtue of the former's electron-dense, unsaturated bonds. If you search "lipod peroxides" in literature you will see how intimately they are associated with disease. It's clear that you embrace the very censorship you claim to oppose. ncbi.nlm.nih.gov/pmc/articl...

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I didn't mean to go on with this argument because it has got tedious. If most doctors consider the use of T3 unscientific in therapy then they are in for an almighty shock as is the medical thyroid establishment (which is steadfastly and ultimately futilely closing their eyes and ears to the fact that they have been wrong for 35 years). There's plenty of evidence that we've uncovered to refute this statement outright. See our pinned post paper as a starter with all the references therein. As for unsaturated fats causing problems, as I say I don't see the Italians and Greeks having any diminished lives. Trans unsaturated fats are bad,, but cis ones like oleic acid are certainly not. Whether you like to believe it or not, the three polyunsaturated fatty acids I mentioned are essential for myelin and brain tissue and come largely from diet. Of course overhigh doses of anything aren't desirable but to make generalised statements which are only partly right helps no one. That and outright falsehoods disseminated and encouraging as truths for everyone to follow should be treated with kid gloves.

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If it's only a matter of dosage, coconut oil still lessens the oxidation of pufa. If you acknowledge the toxicity of high doses of pufa, coconut oil and saturated fat would still reduce the toxicity.

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And yet here we have some counterargument:

Polyunsaturated fatty acids (PUFAs) have been shown to yield anti-inflammatory properties, and recent meta-analyses have indicated a minor antidepressant effect of PUFAs based on 13 RCTs including 731 participants (Bloch & Hannestad, 2012; Martins, Bentsen, & Puri, 2012). This small effect has been suggested to depend on the content of eicosapentaenoic acid (EPA). An analysis of studies using ≥ 60% EPA resulted in a significant pooled SMD estimate of 0.37 (95% CI = 0.33–0.41), whereas studies using ≤ 60% EPA found no significant antidepressant effects (Martins et al., 2012).

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Radiation has anti-inflammatory properties. Just because something is antiijflammatory doesnt make it healthy. In the context of alzheimers, pufa is clearly bad. This has parallels in other degenerative diseases and in general physiology.

"The mechanism by which the X-ray treatment acts upon pneumonia involves the induction of an anti-inflammatory phenotype that leads to a rapid reversal of clinical symptoms, facilitating disease resolution." ncbi.nlm.nih.gov/pmc/articl...

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Nothing more to say! We don't gel.

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Sorry to hear that

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Did you read the articles from ray peat? I honestly think you would appreciate them. I was just surprised because you've done great work on thyroid, which actually matches the information i was introduced to from ray's work. Ray chronicles the underground biology. Things like "essential" fatty acids had a completely different lore in earlier times. Nitric oxide is another example, it became good after viagra was made, but prior to that wad recognized as an inflammatory marker and sign of oxidative stess; in fact it still is now. Catalytic converters were devised to lessen it. I just think you've done very good work with thyroid and I was honsetly surprised to hear that you wanted to start censoring people, it's historically unlike you. I really think you'd appreciate ray's work if you gabe it a chance, or the other scientists he lends voice to that have been supressed or forgotten. You know the ignorance the establishment can manifest.

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Severe depression can mimic dementia, and of course, knowing you have dementia, or any other terminal illness, is likely to cause depression. So if there is an effect on depression it could improve dementia symptoms anyway. But, without any definite evidence, promoting coconut oil is irresponsible at best.

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My experience is that any ailment and depression go hand in hand. Ask anyone on this thyroid board. How many of us were prescribed antidepressants instead of t3? As to definite evidence, that depends on what you mean by that. Do you mean the evidence approved by authority? If that's your belief, it runs counter to every advancement in medicine, which authorities have seldom approved of. The proponents of such theories were ridiculued, some as in the case of semmelweis until they were driven insane. If you look outside medical authority, in science journals, in physiology journals, there is convincing evidence for the benefits of saturated fat. Medical myths tie together, so because polyunsaturated fat lowers cholesterol, it was advertised as good. But low cholesterol is a sign of many diseases. And high cholesterol is merely a symptom of most cases of hypothyroidism. Are most patients screened for thyroid disorders before they're prescribed statins? No they're not. We know what a failure the medical system can be. It's that way because it's intentionally blind to anything but sanctioned theories. This board is a living example of how erroneous these mainstream beliefs can be.

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Do you have any appropriate links that do not require me to share my data for marketing purposes?

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What are you talking about? Cookies?

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The below is how they word what I have to consent to:

Please accept our privacy terms

We use cookies and similar technologies to improve your browsing experience, personalize content and offers, show targeted ads, analyze traffic, and better understand you. We may share your information with third-party partners for marketing purposes. To learn more and make choices about data use, visit our Advertising Policy and Privacy Policy. By clicking “Accept and Continue” below, (1) you consent to these activities unless and until you withdraw your consent using our rights request form, and (2) you consent to allow your data to be transferred, processed, and stored in the United States.

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Below is the study the medical news article referenced .. i dont think pubmed uses mandatory cookies, correct me if i'm wrong.

Association between fatty acid metabolism in the brain and Alzheimer disease neuropathology and cognitive performance: A nontargeted metabolomic study

journals.plos.org/plosmedic...

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Thank you, will read.

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Thank you. I first learned of this information from ray peat, which may be a turnoff to some people, because he's a person and so sounds like a guru. But the fact is that, since the mid 1960s, polyunsaturated fat consumption has greatly increased, and there are many toxic properties of unsaturated fats. raypeat.com/articles/articl...

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Just delete the the little b^*&*()s as soon as you've read the site. I do. They can't actually read anything but their own data (and that of other sites that use the same provider), so if you delete them immediately ... I use a script blocker, so although I see that notice, there is no Accept button and I don't need to click it to read the page. And it didn't drop nay cookies. In most cases (not all), you can just ignore those messages and scroll past them

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But they have already decided they can sell my ip address visited this site info.

I prefer to avoid accepting but need to see sites as others do.

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So they'll know someone from your ISP in the UK looked at their site - big deal. You could use Tor and disguise your IP address.

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VPN?

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Just take in what they say:

The authors also concede some of the study's limitations. Due to its observational nature, the research cannot explain causality, so it could not be established whether the UFA dysregulation causes AD or whether it is the other way around.

This is magic mushroom land. Lousy work, lousy conclusions.

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I couldn’t agree more. I am tired of reading statements which are unsupported by evidence or reference to research and outcomes. Some of the so called ‘information’ posted is anecdotal and, at times, inaccurate. I am interested in facts which stand up to scrutiny and, of course, the personal experiences of other members.

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Oh good grief! That went off on a tangent and I dont think i went with it 😬

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Indeed. And in regard to saturated and unsaturated fats - I Can’t Believe It’s Not Butter 😛

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Isabella Wentz, Dr Axe and the functional thyroid clique

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I used clove oil very successfully once for toothache before I could get to the dentist, I have used aloe vera from my garden for minor cuts and scratches, camomile tea sends me to sleep without fail and I once had a frightening reaction to a pneumonia vaccine (but I am very pro vaccination), Oh, and remember when we were children and dock leaves used to fix us after we had fallen in stinging nettles? I am far from an airy fairy herbal enthusiast, and definitely no "quack", I am a hard core, down to earth experimentalist but I am fascinated with effects from sources which come from out of left field. I think we should be allowed to try out unusual things we might read here unless we judge them to be stupid or obviously dangerous.

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Hear hear. Agree whole-heartedly. And I AM a herbal enthusiast ( not airy-fairy though). I never wish to see the day when the use of medicinal plants are classed as quackery. That would be a sad day indeed, as anyone who knows anything at all about the topic would understand. If you want the science, there are reams of papers.

I'm not sure that Diogenes intended medicinal plants when she referred to quackery...

Real quackery I can't abide either.

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He - not she 😊 Click onto username for more info.

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I was sure I'd been surprised once that Diogenes wasn't a man...I had assumed he was. So started of thinking of him as a her. If you see what I mean. Sigh.

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... apparently Diogenes was a Greek who ran around naked 😊 So when I read his posts I can't help smiling !

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Ran around naked shouting Eureka, didn't he? Lived in a barrel? Or am I mixing my Greeks? :)

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Spot on !

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:D

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Haven't done that for years! Physique wouldn't interest anyone now. Sparrow- everywhere.

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Could be good for your VitD levels :-)

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What I mean by herbal quckery is NOT the use of herbs in addition to hormone therapy, but the use of herbs as a complete substitute for hormone therapy. If herbs seem to help the therapy then who am I to naysay.

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Don't worry - if anyone mentions giving up their meds and trying pills and potions instead - they are quickly advised of the error of their ways by several here !

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Tricky one -on the whole I think people do abide by the rules......always a few out there.

I really appreciate all the hard work the admin team does.

And I also appreciate all the excellant expertise and guidance I have had over the years from others on here....including Diogenes. Its thanks to those lovely people who give freely of their time that I (and am sure others) am well. I dont like to think too much about what would have happened otherwise.....lol. Shudder.

So yes in my experience there maybe a few not the best/appropriate posts out there but most are great. Ive not seem anyone flaunting a specific product and some people do find herbs are helful...sadly not me.

I think sometime people make assumptions (myself included) which are not scientifically correct or proved and personally am always very grateful to those with greater scientific knowledge then me that they pick this up. In other words we keep each other in check. And when that happens it is usually done in a tacful informative helpful way in my experience.

Am always mindful of what I think works for me may not for others and doesn't mean its the best way to go.

So thankyou Diogenes for flagging this up. Its always good to be reminded to be on our mettles more and be watchful of real proven facts as opposed to beliefs in what we write.

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HU Administrators and the Unsung Heroes who work in the background do an *Amazing* *Fabulous* *Fantastic* job . You are So Very Appreciated to get this Great Community going day after day for us to vent learn and exchange knowledge with one another . You help us in more ways then you can ever comprehend .

THANK YOU . THANK YOU . THANK YOU .

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Hear hear!

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See---------------

Spammers, Scammers, Trolls and other Unusual Creatures..

LouiseRobertsAdministrator•

7 months ago

healthunlocked.com/thyroidu...

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You have to be careful with clamping down on member forums though - a Facebook group I follow decided we were getting off topic a little too much, so now we're alloted Friday as the only day we're allowed to post anything "fun". If you post something a bit fun any other day of the week, and anywhere other than on the "fun thread" it'll be deleted. When you get as rigid as that, people will leave!

Plus I don't think there's anything wrong with passing on information without reference sources of it's information you yourself have heard from a reliable place. I pass on some information I've learned in coeliac research talks.

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That's an interesting one. I would always miss that boat. During the days when I have no work and concede that I am supposed to be retired, I never know what day it is - well, the garbage truck comes round on Wednesdays, that pulls me round usually. Oh and I get a ton of junk email on Fridays, thats another clue.

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Yeah, a lot of people do miss it too, because of global time zones! I think they're Pacific time zone, and the thread is available from 8am local time. Anyone who follows from the likes of Italy only get a small window to post before bed time.

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😂😂

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😂

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Et quis custodiet ipsos custodes?

Think carefully before you censor. There's too much of it on some HU forums.

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This is a tricky one, I’ve been mulling it over and reading through the replies but I keep coming back to diogenes statement ‘propaganda for certain points of view that are both misleading and dangerous’. This is truly an ironic statement because that’s exactly how many view the ‘professionals’ of this country and they have many many years of education and experience and are basing their advice on ‘science’ or ‘studys’ rightly or wrongly.

So yes whilst I agree that it’s annoying if some dubious posts pop up now and then, really is it any different to the drivel that we experience in a doctors consult room? We’re all adults here and I think if we can get away with minimal censoring then that’s what’s best.

And think topics are best valued or disbelieved when they are challenged which I believe everyone on this forum has the ability to do respectfully.

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Am on here to avoid the drivel in the doctors office to be honest......heaven help us all if we sink to that level. Arggggh! 🤣😏😉

I also do think its good to back up generalised statements with some evidence. Unless of of course we're giving an opinion or reporting our own experience & say so. It is good to sift these things apart. I think it reduces confusion and leads to good discussion. For example if I say in my experience Ive found Acella NP Thyroid to be the best ndt for me. Its quite different to saying Acella NP is the best ndt for everyone. Bit of a mad example I know..... And Ive got to say Ive been guilty of generalising something that I dont have true proven evidence, or dont reference it to a book Ive read that says it & thankfully been picked up on it. Its very very easy to do!

So I think Diogenes has a very valid point. The thing is when someone makes a statement as if its fact unsubstantiated & its not proven some one else may read it & believe and then start saying the same thing as if its a fact......then that non fact gets passed on as a fact......and in the end it generates confusion & misconception. Am sure most of us remember the marg is best & butter is bad drummed into us for years.......and that proved to be totally inaccurate!!

But Im all for some light relief with a fun topic popped in here and there to make us all smile too. 🤗😊

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.....adrenal fatigue? Is this really a “thing” ? Is there peer reviewed scientific evidence for gluten intolerance or leaky gut? Ditto re the effects of taking milk thistle?

Echinacea has been proven not to work to prevent colds but millions still recommend it. The list is endless but it would be a massive ask to expect the small administrative staff to police all of the replies given. Most people who reply are extremely helpful and very well informed.

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You have often mentioned in your posts about the difficulties of good thyroid research reaching the frontline. So why does this happen ? Could it be the powers that be ? Perhaps this is why people become attracted to alternatives when their journey to wellness is hampered/blocked.

There is growing evidence in the US there was a cover-up regarding a certain vaccine - negative effects were not revealed. The same with Rory Collins and Statins. Research published is not always squeaky clean as detailed in Dr Kendricks book - Doctoring Data ...

I remenber your speech at the TUK Conference a few years ago when you told of the professional rivalry and skulduggery within the field of research. Does this type of behaviour affect outcomes for the benefit of us simple folk or is it just a point scoring exercise within the profession ... I am not referring to your field of research but in general terms only ...

I don't think Hippocrates had scientific proof of his findings but his quotes have held up well - let food be thy medicine and medicine be thy food ... 😊

In my own case I had ileo-caecal TB - after the BCG vaccine - then Crohns - followed by Hashimotos at 59 - so if I have entered into unsavoury vaccine debate it has been based on experience. Sometimes people are searching for a root cause without papering over the cracks with a plaster ie ( various prescribed drugs for other symptoms )

Am afraid I do run with some of those folk who believe the gut and it's health is the source of wellness and I believe the research is now catching up ! Links to follow 😊

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If I could run, I would run with you.

I can't, because I have been crippled by drugs.

Refusing to look at the broader picture, plus intolerance and arrogance to the opinions of others, is all too typical in todays society.

Respect and a willingness to listen, is not well practised within medicine.

One learns from listening, and no one, is too old to learn.

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If you want to read a really measured analysis of the American Thyroid Association guidelines on treatment and diagnosis, I strongly recommend going to the Canadian Thyroid Patients Association website. The lady there tells it like it is elegantly and rationally. She also shows what hold the medical profession has over the patient, however the soft words spoken from the powers that be.

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I've just googled that, and it's come up in French. Is that normal?

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Try Canadian Thyroid Patients Campaign instead. That works in English for me.

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OK, thank you, I'll try that. :)

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Got it! :D

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In case anyone else is curious, it's thyroidpatients.ca

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Its a bit late--- from my "stash"

ThyroidUK goes without saying

thyroiduk.org/

However I owe much to the following Canadian links:-

Thyroid Foundation of Canada

thyroid.ca/ -------- thyroid.ca/?lang=fr

National Organization for Rare Disorders rarediseases.org/

Rare Disease Database

rarediseases.org/for-patien...

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Thank you.

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Perhaps you'd like something my colleague Rudolf Heormann said to me recently, regarding scienitific honesty and openness. We're working on a paper which shows that in the early course of thyroid failure the remaining gland works more and more furiously to help out the body in keeping FT3 as constant as possible, until the bitter end of gland collapse. Trying to intervene in this by giving paients thyroid hormone can actually make things worse, as it interferes with this protective process - eg giving small dose 25ug T4 can be counterproductive. He feels that we are in for it when we try to publish, because it cuts across everything modern thyroid treatment protocols say. I quote him on this:

Some people certainly will not like the implications of our message that the intervention they strongly recommend can make things worse for patients, even worse than nature does itself.

Those guidelines are cemented by powerful people, political scientists with lots of influence and funds, but dishonest characters.

They manage huge grants, which support them, allow them to kill thousands of animals for a single study and to genetically manipulate animals (e.g. make them deficient in certain enzymes),

And in the end, they have no answers for patients and conclude that human physiology might be different. We do more meaningful studies for free.

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You have my vote ! Thank you ...

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"....because it cuts across everything modern thyroid treatment protocols say."

More power to you gentlemen!

It's high time someone/something cut wide swathes through these treatment protocols created by the intransigent nature of those decision makers who appear hell-bent on saving face by keeping us merely breathing rather than swallowing their pride and making us well.

I realise this has all been said before, many times, but I share a quote from Ghandi, (used by Lorraine Cleaver during her T3 campaign) - “Remember that all through history, there have been tyrants and murderers, and for a time, they seem invincible. But in the end, they always fall. Always"

In quote-mode I turn to Joan Baez and her words, "We shall overcome one day..."

Like most of us here I've experienced misdiagnoses, incorrect treatment/medication, declining health to the point where I could barely function, lost years and experiences....thankfully I found TUK before it was too too late!

Thank you doesn't begin to cover it...more power to "scientific honesty and openness"

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