Guest guest Posted February 3, 2012 Report Share Posted February 3, 2012 I was thinking the same and was very disappointed. Why bother to put his name on the list of experts if he wasn't going to take part? I would love to know what Talkhealth's perspective on this and also on the others who didn't take part. I have also noticed that they turned the 5 pages into 3 pages by deleting whole threads. I cannot find the one about Jane123 question about urine testing. I do believe the espert's answer is there but not her question. Talkhealth admitted that they are not medical professional and did not understand thyroid disorders, so how can they go about willy-nilly deleting posts. I noticed before they closed down that had managed to get his post in so it SHOULD still be there when they reopen. We shall see! Sorry, just having a rant - it's made me so angry!! Love Jacquie > > I would have liked to have seen some responses from Professor Edzard Ernst > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2012 Report Share Posted February 3, 2012 The Guardian did an interesting article on Professor Ernst in 2003http://www.guardian.co.uk/science/2003/sep/25/scienceinterviews.health Not sure he's been that popular among complementary therapies circles over the years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2012 Report Share Posted February 4, 2012 Hey - I *thought* Dr Lazarus rang a bell! http://images4.fanpop.com/image/photos/20500000/Alan-in-Galaxy-Quest-alan-rickma\ n-20507733-457-367.jpg (Apologies for off-topicness...) x H Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2012 Report Share Posted February 10, 2012 OOOOh they have a real bee in their bonnet about this amazing extra illness, which stops t4/t3 conversion, but which has no name or diagnosis available. (And which I certainly haven't got!) It's all so convenient..... thye admit that the t3/t4 conversion isn't happening but then say that the reason for it is the body closing down so as not to cause stress due to the 'other undefined, untraceable, imaginary illness.... We cannot fight this sort of crass stupidity and I am amazed that any of the 'experts' would put their name to such a dozy idea, thus removing and shred of credibility which they may previously have had. The forum has shown that there is a real problem which is not being addressed. The answers are repetative and pathetic..... and we may as well try to argue logically with a plank. Does anyone have any ideas on how we can fight the system? The experts are out of date, out of touch and pompous. They will not listen but they influence the doctors. How can we educate the doctors so they ignore the experts? Grrrrrr Sorry for the rant.... it makes me sick..... xx > > > I wrote the following question to the thyroid experts asking for answers, > but none was forthcoming. Mireille copied my message and posted it under the > 'Talking to Doctors' thread, and lo and behold, Dr Beastall has responded. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2012 Report Share Posted February 10, 2012 Surley the fact they have gone online with this type of forum is a MASSIVE step change in their behaviour. It can only be welcomed. It shows they understand there is an online community out there taking care of itself. Sounds like they want to take part in what is going on without them. I really don't beleive they will go online and and confront reality (T3 is needed/ tsh is crap etc) without changing their own stance, or at least listen to what the people are saying. I think it is all positive in the long run. -- > Does anyone have any ideas on how we can fight the system? The experts are out of date, out of touch and pompous. They will not listen but they influence the doctors. How can we educate the doctors so they ignore the experts? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2012 Report Share Posted February 10, 2012 As you know , I have been taking some time these past few days to write a letter to the President of the Royal College of Physicians (hence a lack of much activity from me on the forum). Believe it or not, this has run to no less than 13 pages (two of references and one of 's graph of 'The Greater Thyroid System' and I have to spend even more days editing this to around 3 pages, so that it will be read. I am sending copies of this letter to all the thyroid/endocrine organisations, the World Health Organisation (WHO), the Heads of all UK Medical Schools, to every NHS endocrinologist and many, many more. Will you give me permission to copy your message to include in my response? Luv - Sheila From: thyroid treatment [mailto:thyroid treatment ] On Behalf Of Galathea Sent: 10 February 2012 10:05 thyroid treatment Subject: Re: Online Thyroid Clinic OOOOh they have a real bee in their bonnet about this amazing extra illness, which stops t4/t3 conversion, but which has no name or diagnosis available. (And which I certainly haven't got!) It's all so convenient..... thye admit that the t3/t4 conversion isn't happening but then say that the reason for it is the body closing down so as not to cause stress due to the 'other undefined, untraceable, imaginary illness.... We cannot fight this sort of crass stupidity and I am amazed that any of the 'experts' would put their name to such a dozy idea, thus removing and shred of credibility which they may previously have had. The forum has shown that there is a real problem which is not being addressed. The answers are repetative and pathetic..... and we may as well try to argue logically with a plank. Does anyone have any ideas on how we can fight the system? The experts are out of date, out of touch and pompous. They will not listen but they influence the doctors. How can we educate the doctors so they ignore the experts? Grrrrrr Sorry for the rant.... it makes me sick..... xx > > > I wrote the following question to the thyroid experts asking for answers, > but none was forthcoming. Mireille copied my message and posted it under the > 'Talking to Doctors' thread, and lo and behold, Dr Beastall has responded. No virus found in this message. Checked by AVG - www.avg.com Version: 2012.0.1913 / Virus Database: 2112/4800 - Release Date: 02/09/12 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2012 Report Share Posted February 10, 2012 Hi Sheila, Of course you can use my message.... however I would have worded it more strongly if I'd known you wanted to use it..... can you sort out the typos on it too..... Ta x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2012 Report Share Posted February 10, 2012 Hi No... I don't think it is a massive change in their behaviour..... I think that the forum was set up, then the experts had their egos boosted when they were asked to give replies. Most forums on there have around a hundred posts and 20 topics so the 'experts' would have thought it would be a good pr exercise. They really are out of touch and I imagine that the questions on the forum must have been a surprise. Hence many of them being moved, deleted and the experts having to take an extra 2 weeks to swot up some answers. Not allowing us to answer to the replies which the experts have supplied, means it's not really a forum, it's more like a school for naughty patients. I looked through and got a classic response when I warned someone about the dangers of RAI. I was told that I had exaggerated the side effects and that there were some but they were not common. The thing is, I had merely referred to two papers which had been written by other professionals. I hadn't added any of my own opinions other than to say if the patient could use meds like carbimazole then that was her best option. Dr PP (I think it was) had obviously not read or understood my post. x > > Surley the fact they have gone online with this type of forum is a MASSIVE step change in their behaviour. It can only be welcomed. It shows they understand there is an online community out there taking care of itself. Sounds like they want to take part in what is going on without them. > > I really don't beleive they will go online and and confront reality (T3 is needed/ tsh is crap etc) without changing their own stance, or at least listen to what the people are saying. > > I think it is all positive in the long run. > > -- > > Does anyone have any ideas on how we can fight the system? The experts are out of date, out of touch and pompous. They will not listen but they influence the doctors. How can we educate the doctors so they ignore the experts? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2012 Report Share Posted February 10, 2012 Dr. Beastall's reply below – as usual – has totally side-stepped the question, but for what it's worth, I have to admire the craftiness with which he has replied. He is wasted in endocrinology; he should have become a politician.... What he is saying below is not wrong, it is just not an answer to Sheila's questions. I have yet to see a single reply from that man which actually answers the question asked. grrrrrrrrrrrrr. A primary cause of poor conversion of T4 into T3 is extremely rare and not difficult to diagnose. What is much more common is a relative shift in the conversion of T4 into T3 in the presence of intercurrent illness. This very common condition is known as non-thyroidal illness or (as it used to be called) the sick euthyroid syndrome. A wide range of acute and chronic illnesses can bring about subtle changes in the conversion of T4 into T3. It is generally regarded as a normal and necessary physiological response to slow down the metabolic rate in the presence of a non-thyroidal illness. It is clear that when the intercurrent illness can be identified and treated then the conversion of T4 into T3 is altered back to the healthy situation. This is most easily illustrated in an elective surgery situation where thyroid hormone metabolism normalises in a few days. In chronic disease it is much more challenging, especially when the primary source of the chronic disease is not easily identified and treated. It may seem obvious that in such circumstances T3 therapy should be considered. However, there are precious few bona fide clinical trials of T3 replacement in situations like this and the results of those that have been performed are not clear cut. Most doctors are cautious and in the absence of evidence to the contrary they are reluctant to treat what is seen as a normal physiological response to another condition. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2012 Report Share Posted February 10, 2012 Well, you can always word it differently if you would be happier but try to use as few words as possible please. Here is a draft of how I have started my letter to the RCP. Dear…. Patients Failed by Experts The British Thyroid Foundation (BTF) teamed up with ‘NHS Choices’ and ‘Talkhealth’ to present an Online Clinic on Thyroid Disorders (25 - 31 January 2012). Thyroid experts brought in to answer questions from the general public, included Professor Edzard Ernst, Dr Tim Cheetham, Dr Graham Beastall, Dr Kerbel, Dianne (endocrine nurse), Dr Petros Perros, Mr Barney on, Professor Lazarus and Professor Colin Dayan. The end result was not only very disappointing, but extremely worrying. The majority of the thyroid experts answers highlighted many serious problems that are causing unnecessary suffering, and real harm to patients. Only one of the nine thyroid experts recognised and apologised for the poor deal patients are getting. He acknowledged that many suffering symptoms of hypothyroidism are frustrated and angry at the outcome. Sadly, he also pointed out how he had to argue hard with colleagues to facilitate sessions on hypothyroid management in general practice (as it didn’t fit his local schemes policy of not doing topic based teaching.) He admitted that there is still a lot of substandard practice around because of a problem with training & education, and that it is not only knowledge that’s lacking – it’s experience, training and learning how to manage what is a complex, difficult, and challenging condition. Why are these very serious problems not being addressed by the RCP and the Heads of all Medical Schools? One of the most serious problems is that the RCP's Curriculum does not recommend any training about peripheral metabolism and peripheral Hormone Reception Physiology. Why? Other serious problems are discussed below…. Hi Sheila, Of course you can use my message.... however I would have worded it more strongly if I'd known you wanted to use it..... can you sort out the typos on it too..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2012 Report Share Posted February 10, 2012 The the response below is what all doctors think is the problem when we are ill and are in blood test range - it is another undiagnosed illness that is making us ill. NOT poor thyroid function / conversion. I haven't seen this " idea " framed and put up on the wall for us to deconstruct. I think this needs to be done (it may well have been done, but i havent come across it myself so apologies) -- > > > A primary cause of poor conversion of T4 into T3 is extremely rare and > not difficult to diagnose. What is much more common is a relative shift > in the conversion of T4 into T3 in the presence of intercurrent illness. > This very common condition is known as non-thyroidal illness or (as it > used to be called) the sick euthyroid syndrome. A wide range of acute > and chronic illnesses can bring about subtle changes in the conversion > of T4 into T3. It is generally regarded as a normal and necessary > physiological response to slow down the metabolic rate in the presence > of a non-thyroidal illness. > > It is clear that when the intercurrent illness can be identified and > treated then the conversion of T4 into T3 is altered back to the healthy > situation. This is most easily illustrated in an elective surgery > situation where thyroid hormone metabolism normalises in a few days. In > chronic disease it is much more challenging, especially when the primary > source of the chronic disease is not easily identified and treated. It > may seem obvious that in such circumstances T3 therapy should be > considered. However, there are precious few bona fide clinical trials of > T3 replacement in situations like this and the results of those that > have been performed are not clear cut. Most doctors are cautious and in > the absence of evidence to the contrary they are reluctant to treat what > is seen as a normal physiological response to another condition. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2012 Report Share Posted February 10, 2012 Research by ignored on Fri Jan 27, 2012 11:31 pm I am a thyroid patient who has struggled all my life to be taken seriously with an illness that has robbed me of a decent quality of life. I would like the experts on here to tell me what research is being undertaken on patients such as myself? For years I have felt totally alone and now it strikes me that there are thousands of people struggling with serious and significant health issues due to a thyroid condition - a condition that, to date, has been largely ignored by the medical profession. So come on, you've put this forum together supposedly for people such as myself - what can we expect from you now and what research is being undertaken in the UK for patients such as me? Re: Research by Dr Petros Perros on Thu Feb 09, 2012 1:07 am See below the programme of last year's BTA annual meeting, which gives a flavour of some of the research on thyroid disease that is undertaken in the UK. WORKSHOPS FOR YOUNG SCIENTISTS WITH AN INTEREST IN THYROID DISEASE - The Royal College of Pathologists, 2 Carlton House Terrace, London SW1Y 5AF - Wednesday 30th November, 2011 The Workshops are designed to be interactive sessions. For Workshops 1 and 2, attendees are encouraged to bring data +/- questions for presentation and complete the registration form accordingly. Registration and coffee 13:30-14.00 Workshop 1 14.00-15.00 Genome-wide analyses, newest techniques for in-depth sequencing - Dr Simmonds (Oxford) Questions and data presentation by young scientists Chair: Dr M Ludgate Workshop 2 15.00- 16.00 MicroRNA genomics: function and evolution - Dr Marco (Manchester) Questions and data presentation by young scientists Chair: Professor G Tea break 16.00-16.20 Workshop 3 16.20-17.20 Murine models of thyroid cancer - Dr. Read (Birmingham) Chair: Professor J-P Banga Close 17.20 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2012 Report Share Posted February 10, 2012 Exactly . Â How can they say there is nothing wrong if they did the tests that show there is. Â comes to mind when he closed his good eye and said " I see no ships " .Lilian If you don't look, you don't see..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2012 Report Share Posted February 10, 2012 Hello All, This poor person is wondering what research can fix the sad state of affairs surrounding the continuing symptoms of hypothyroidism. What can be done? The answer to that is simple. What needs to be done in the way of medical research has been done, at least substantially. However, when the less theoretical, more corrupt researchers tell us all that 490 of the 511 studies that they found were not applicable because they did not meet their criteria for evidence, you have a problem. You have a problem when a study claims its context as those with continuing symptoms of hypothyroidism, does the study with patients without continuing symptoms, uses statistics that virtually ignores low occurrence results, and then over-concludes with the recommendation that the patients should continue to suffer with a T4-only therapy. So what were some of the ignored studies. Although they were not named, we can take a guess: The 1947 observation by Drs. Kirk and Kvorning that T4 did not mitigate the symptoms of hypothyroidism. This was confirmed by Dr. Means in 1954. In 1953, Drs. Gross and Pitt-Rivers found that T3 is more active than T4. (So just how is it that the active hormone is not effective, while the less active hormone is? It is the special case of post thyroid deficiencies - deficient peripheral conversion, deficient hormone reception by the body's cells, and/or deficient use of T3 by the Cells' nuclei and mitochondria.) The 1960 study by Dr. Goldberg of euthyroid (your thyroid is OK) hypometabolism (but you are dragging about anyway). The circa 1970 discoveries of the post thyroid functions, peripheral metabolism and peripheral cellular hormone reception. The 2001 report of a long-term study of the failures of endocrinology by Drs. Baisier, Hertoghe, and Eeckhaut. If these and other studies were used, there is no way that such an absurd conclusion could be made. The next question is just how do you get these folks attention to get them to pay attention to real medical science? Well, there was a fellow with a prize mule that he wanted to get trained, but the mule refused to be trained. So he finally took his prize mule to the most renown mule trainer in the world. So there are the three of them standing there, when the trainer picks up a 2x4 and hits this mule on the head just as hard as he could. " What did you do that for? " screamed the owner. " To get his attention! " I don't believe after all these years of trying to get endocrinology's attention, that it going to happen. It will have to come from a higher power. On this earth, the only higher power is the courts. Perhaps getting sued for a few billion might get their attention...... The only problem with that notion is also simple. Like doctors, more than 50% of the lawyers, it seems, graduated in the bottom half of their class.... Have a great day, > > I am a thyroid patient who has struggled all my life to be taken seriously > with an illness that has robbed me of a decent quality of life. I would like > the experts on here to tell me what research is being undertaken on patients > such as myself? For years I have felt totally alone and now it strikes me > that there are thousands of people struggling with serious and significant > health issues due to a thyroid condition - a condition that, to date, has > been largely ignored by the medical profession. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2012 Report Share Posted February 10, 2012 , I totally agree and have little faith in lawyers, although one would think that Dr Skinner's lawyer should be fairly well educated in thyroid disease by now. I also noticed that there are many many firms in the UK who 'specialise' in Clinical Negligence cases re thyroid disease but they (unsurprisingly) do not do not take on Legal Aid cases. Love Jacquie > I don't believe after all these years of trying to get endocrinology's attention, that it going to happen. It will have to come from a higher power. On this earth, the only higher power is the courts. Perhaps getting sued for a few billion might get their attention...... > > The only problem with that notion is also simple. Like doctors, more than 50% of the lawyers, it seems, graduated in the bottom half of their class.... > > Have a great day, Quote Link to comment Share on other sites More sharing options...
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