The biggest 'faux pas' in medical history

if you look. Into thyroid , fibromyalgia and CFS you will see how much research has gone on , dr peatfield is not alone in saying the standard blood tests  are unreliable. Re dr John Lowe dr Gordon skinner dr David Derry . Doctors were taught in training , before the TSH test was " invented" to go by signs and symptoms and basal temperature which had been used since 1945 . Nowadays if the bloods are normal thyroid is discounted no matter how many symptoms the patient has ! All these doctors have treated and cured thousands of people many "diagnosed" with ME/ CFS and fibro with no ill effects in fact they are so grateful for giving them back their lives!

What is the TSH test Sylvia?

Thyroid stimulating hormone it comes from the pituitary gland its purpose is to stimulate the thyroid gland to make more hormones  . TSH rises  when the thyroid is struggling T 4 lowers if it is struggling . If a person has autoimmune thyroiditis it can be years before these tests show hypothyroidism . It is not just a case of dishing out hormone replacement , T 4 ( thyroxine ) is the usual one but each individual's needs are different some need T4 some T3 ( T4 must convert to T3 which is the active hormone ) some need T4 + T3  some T3 only some are better on natural desiccated thyroid . 

Oh thank you for explaining.

I really want to know how these doctors diagnose it without tests?

There's been a few bits of research, but none of it leading to good evidence that supports this more alternative approach. There's some evidence that those who results are on the edge of normal/abnormal would benefit from treatment when they often do not recieve it in the UK, but not that those with completely normal results and just symptoms do benefit from these treatments over placebo.

PS: I may have missed more recent research, but that was the state of play until recently, and I've not been able to find news of any breakthrough since then. I think that people should be cautious about paying for treatments that do not have good evidence of effectiveness.

Well said Fidd. I wish someone would explain to me how they diagnose without tests?

Dr peatfield recommends reliance on the basal temperature , which has been used since 1945 , also adrenal stress test. He says its function needs to be restored in order to help the thyroid in some cases if the patient has been ill for a long time, also importantly signs and symptoms and a trial of thyroid replacement hormone , as you know there is no test for CFS it is a diagnosis of exclusion . Because your thyroid bloods come back from the lab normal, hypothyroidism is dismissed . How do you know all the right tests have been done ? Do you know about autoimmune disease ? Do you know that tests are more often than not ,normal for years before they show the thyroid is struggling !? Doctors rarely ask for thyroid anti bodies tests they just go by the TSH tests they come back normal , diagnosis CFS ! The symptoms for CFS and hashimoto disease which is the main cause of hypothyroidism are much the same! Dr Lowe dr skinner who sadly have passed on , treated CFS patients  with thyroid medication with great success and thanks from grateful patients you can research for your self and make your own conclusion sy 

Thank you Sylvia; I appreciate that.

I might just add dr utiger who developed the TSH test which became the ' gold standard ' for diagnosing hypo and hyper thyroidism  states , I hope doctors are still being doctors and using signs and symptoms for diagnosis , and the best way is by giving a trial of thyroid hormones . 

I am sorry to disagree I know of many people myself included who had absolutely normal results for years which is why we were not treated with thyroid meds . The answer was always THERE IS NOTHING WRONG CONNECTED TO YOUR THYROID! But something very wrong with there diagnosis , CFS ! Fibromyalgia! There was a study done to see if there was a link between CFS / thyroid in 2010 . Fine needle aspiration ( FNA) is used usually if there is a possible cancer in the thyroid but it can be used to see if there is inflammation eg autoimmune thyroiditis ( hashimoto disease) . A number of patients with chronic fatigue syndrome and normal thyroid blood tests for hypothyroidism were given this test where a sample of the gland is taken and analyzed . The results were a large percentage had in fact autoimmune disease they were given thyroid replacement hormone and recovered from their symptoms . Dr peatfield remarked ' there is no need to go sticking needles in patients necks a diagnosis can be reached by looking at signs and symptoms and a trial of hormone replacement, but if we did there would be a lot less people walking around with hypothyroidism !! 

Would you be able to post the title of that study? If there aren't serious flaws with it I'm surprised I've not heard of it. Thanks.

Hi fidd if you type in , The Lancet fine needle aspiration for thyroid and CFS , there is lots of info , also the myths of hypothyroidism very interesting worth a read . Also dr John Lowe one line summary after 15 years research " the missing ingredient in fibromyalgia is thyroid" 

Thanks. The piece referred to (Lancet. 2001 Mar 24;357(9260):956-7.) is just a short letter rather than a paper of anything though and it doesn't really say much. I wouldn't give too much weight to a two hundred word letter from fifteen years ago.

Nope , you are on wrong site . I don't understand why you are so against looking past a " diagnosis " of me/CFS fibro when there are no tests for it and only a diagnosis of exclusion? As I said before some patients have Felt so ill for so long , desperate for an answer , and I was one of them , there is a sense of relief when they are " diagnosed" with me/CFS ! They have an answer to why they are in pain and suffering all kinds of dibillitating symptoms this being the case they look no further , the doctor knows best if he says I have CFS then that's what I have! Doctors make mistakes and if all tests are normal the answer nowadays is ME/ CFS . Yes you may well have it I am not disputing that I am just offering another line of thought . I did not accept it but then every body is not the same . All of my research made sense symptoms given for CFS/ME / fibro are very much the same and the simple answer was a trial of thyroid hormone which in my case I eventually  found a doctor who agreed gave me a trial and now I am well again . Because of this I thought I would pass this info on to perhaps help other sufferers who don't know that thyroid blood tests are not always reliable and when they come back normal this is not always the case. !! 

I don't thikn I'm on a side, other than wanting there to be good evidence for medical claims. I'm not at all commited to the ME/CFS diagnosis, and see it as being of little real value. The more people who find alternative and legitimate explanations for their health problems the better. But the problems with ME/CFS as a diagnosis does not mean that we should jump to alternative labels that are even less meaningful and well supported by the evidence.

Some people with ME/CFS do just randomly recover. Some of them may be engaging in a treatment at the time. This does not mean that the treatment is effective. Almost every alternative treatment/diet will be able to point to anecdotes like this and it is easy for this to lead to patients wasting a lot of time and money on ineffective treatments.

I think here there is room for manouver... it is reasonable in view of some of the evidnece to ask for a trial of Thyroid support for a period of time, it is also reasonable to ask for the other tests to be done which show T3 and T4 and Thyroxine levels... This would mean a group of people would be helped. ME/CFS would then have a clearer diagnosis, same as doing a Lymes test at the time of initial contact, they do enough other tests... ruling out lymes and or being able ot treat for lymes etc would help and would again narrow the ME CFS group. If the ME CFS group were thus narrowed then perhaps the other tests for viral infections and so on would show a meaningful result (for example not so long ago a mouse cancer virus was found in ?70%? of ME/CSF would a better result have been achieved if all the thyroid and Lymes people had been excluded from that study? Would we now be on the road to having a treatment being researched if it had been found 90% of people with ME/CFS had thsi virus and only say 30% of people in the main random population had it? So yes by all means keep to valid data but also please dont knock something that has been demontrated and could be an option to help a %age of sufferers and same for Lymes. I would like to see these tests brought in as standard if i still ended up as ME/CFS then so be it but if either of the other groups i could get help (well except Lymes I believe as after 6 months there isnt very much that can be done, but being blunt at least they wont be in the ME/CFS group muddying the research (sorry but)  Also personally i think Sylvia has presented a reasonable case for looking into this and at least getting tests and trials done even if after 3 months some people go nope it isnt working there may well be a group who have gone i feel better... (and again less mud) Sorry Sylvia not decrying you or muddying your efforts but ... if all those who can be taken out of MECFS are removed and the rest tested htat group may well get a clearer answer. now i have got a headache... 

Lol Andrew I know where you're coming from bit of a headache too i might have to have a lie down I don't like arguing  well it's more of a discussion and it's good . to hear different points of view  and I definitely don't want to preach to anyone or offend . There is so much research going on for ME/CFS and fibro not just here (UK) but all over the world! Where has it sprung from ?? Before 1980 s it was unheard of how why ? As you say if we could narrow it down . I have never understood why when I went to  GP s a few different doctors and  three endocrinologists with all the symptoms of hypothyroidism just because a TSH  and hormone blood tests said normal, I was diagnosed with ME/CfFS and told to live with it. Every one of them said looks like a thyroid problem when I went to see them and we will soon have you back on your feet but when blood tests came back normal that put paid to that theory and I was just left with a choice of antidepressants.  amitripyline and various painkillers. The last doctor I saw was quite happy to give me a trial of thyoid hormone replacement  he could not understand why the others would not prescribe even a low dose , he said it was low cost and not a drain on the NHS and would not harm me , from then on the awful Symptoms disappeared one by one and believe me I had the works. I only want to pass on my experience and encourage other sufferers to question thier diagnosis and at least talk this over with thier doctor and see if he/ she will give a trial , what have you got to lose you will be no worse off than when you started . I would say more to the point what have you got to gain?? Best wishes sy 

i do like a discussion (nearly argument but should be discussion) and i think we do have a way forward thank you for seeing what i am rambling on about... and well done too for trying to keep this up.. still resting but between us for different reasons we have a point... we do have to try and find ways forward for all of us! Fidd is right as well there does need empirical input and some figures but we wont get that unless these ideas are tried out and tested thouroghly

Sylvia, ME/CFS has certainly been around a lot longer than the 1980s under various guises and has been known since at least the eighteen hundreds and some believe a lot earlier.

Outbreaks like those at the Royal Free Hospital in 1955 were quite common and of course many feel that it's likely that Florence Nightingale may well have been a sufferer after contracting Brucellosis and spent much of her life from 1857 working from her bed where she was often very ill indeed..

that is interesting..

hi artistmike I agree different guises or names for illnesses which the main symptom was chronic fatigue , wasn't the outbreak at royal free 1955 an epidemic of an infectious illness that spread rapidly through maybe 300 doctors and nurses and patients? ME/CFS is not an infectious disease and I think from what little knowledge I have ME had been used then but was dropped as not enough research had been done. It was in the 80 s that suddenly 'yuppie flu' became front page news saying high fliers were burning the candle at both ends , a  couple of years later it suddenly changed to ME  as there were more and more people becoming ill with a long list of symptoms .Research was done and sufferers were tested and brain scans done on a large number of patients and no swelling of the brain was found and just as suddenly it became CFS . As time went on chronic fatigue was thought to be a trivial name for an illness that was so dibillitating and painful it  just as suddenly became ME/ CFS . And yes there has been a lot of research done but from what I have read nothing conclusive has been found as to the cause of the long list of awful symptoms. My argument is maybe ,just maybe many of these people have been misdiagnosed because thyroid blood tests are unreliable ! Why have thousands of patients with the ME/ CFS ' diagnosis been made well after being treated with thyroid meds of one sort or another? Why do doctors stick rigidly to the 'gold standard ' TSH blood test when the patient has described all the symptoms of hypothyroidism!!! But because their results have come back from the lab as normal hypo is dismissed out of hand !is the set range too high ? Many countries have a lower range which means the patient would be given a trial of thyroid hormone replacement . Why don't GP s and doctors follow the original way thyroid disease was diagnosed ? Blood tests seem to be set in stone nowadays no matter what the symptoms suggest !! A trial of thyroid seems  the sensible way to go but it seems blood tests rule . This is only my opinion as I was one of the people with the ME/ CFS lable who was finally diagnosed with autoimmune thyroiditis ( the biggest cause of hypothyroidism ) and prescribed thyroid meds  but perhaps reading this may help others question their diagnosis . Sy 

If you go to Wikipedia and search for " History of chronic fatigue syndrome  " ... you'll see the full 200year old history of the condition and it's frequent mis-diagnosis... It's certain that ME/CFS has been around for a very long time indeed, especially as a post viral condition.

I was talking to my M.E. consultant in hospital only yesterday and we were discussng Thyroid supplementation and he was saying that he has had many ME patients actively on treatment with Thyroid supplementation who still have ME and show no improvement whatsover in that condition, so it's certainly no panacea for ME/CFS

I do agree that many people who are diagnosed with ME/CFS may well not have it, but have been mis-diagnosed and have other illnesses like Hyperthyroidism, which is why it's always important to have all the correct tests. Unfortunately even after all the correct tests eliminate conditions like that,  there are still thousands of ME/CFS sufferers still suffering with no useful treatments available....

Hi me again, yes a viral infection seems to be the trigger , I had the same whether it is the start of ME/CFS fibro or thyroid it crops up all the time. This was 1995 so I ve had a long time to read up on all of these illnesses. All the doctors and endocrinologists I have seen thought yes thyroid problem but as soon as results came back normal it was dismissed and eventually I was told I had CFS and fibro . I was never happy with this lable but maybe that's just me . Every one of these doctors said there was nothing wrong connected to my thyroid it took me a long time to find a doctor who agreed why should every body have the same range we are all different . After a trial of thyroxine over three months i became 60/70% better , one by one symptoms disappeared or lessened. I am still not 100% well and only last year diagnosed with autoimmune thyroiditis ( hashimoto disease) which is said to be the biggest cause of hypothyroidism . There is no cure only treatment and the treatment is thyroid hormone replacement this was obviously why I became so much better when I was prescribed it. Having said this the usual medication is thyroxine( T4 ) this has to convert to T3 at cell level to be of any use as it is the active hormone . It is well documented that many people ( for what ever reason) do not convert so never become well . As you said your doctor will have patients with ME/ CFS who do not feel well on any dose of T4 because they are not converting at cell level it is no use just floating around in the blood stream which must affect the blood tests , would you agree maybe just a little , possibly ? I never became completely well so I asked for T3 to be prescribed , this is a big no no in the world of thyroid ! You would think this would be the usual one prescribed being the active one needed but it is not . So now I am taking natural desiccated thyroid as this is the medication that was given to any patient with hypo symptoms as it has all the hormones needed before synthetic T4 was 'invented' only been taking for a short while so early days . The difference in my life since taking the T4 ( thyroxine) even tho it did not completely cure me is amazing ! The relief when the foggy brain went the numbness the pins and needles the lack of concentration the tremors the awful pain  and of course the chronic fatigue . I am enjoying this discussion it's good to get other opinions and info even if we don't agree it gives us room for thought , best wishes  sy 

I wish they would. Test aren't always correct- validity, reliability , the fact that we are all different.