Why is it that when one presents the evidence from Dr John Lowe and other accurate sources people still do not get it or believe that

CFS and Fibromyagia is a thyroid hormone condition - Personally I was so desperate to get well , I obsessively read the internet until I found I could get myself well, and found out the truth instead of myths Id been lead to believe by Health Profesionals

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  • ..try telling that to the other Forum - Hidden Illnesses - also part of Health Unlocked. I have posted there on more than one occasion with lots of information that I have gleaned from others. I don't even receive a reply. Some people just like having some illness that cannot be proven....others do not want to look around the next bend when out walking either !! We are blessed if we are able to learn from others and move forward.

    The Buddhists in their teachings of today think that so many problems in the Western World are due to people being unable to be thankful for the parents that brought them into the world and the teachers they encounter....makes sense to me.....

  • ...thank you for your response. I think their denial has more to do with their underlying thyroid condition - not enough thyroid hormone to process the information in the brain. I know when I am one degree under I am not so able to learn new things !! You could of course be right about the Benefits issue...living in Crete I had not thought of that one ! :-) :-)

  • Yes agree with this Marz, when I was lacking in the brain department I found this all very taxing upon my brain, but kept at it , reading and trying to understand it - Lovely to live in Crete - Take care :)

  • .... a bit like doing homework on subjects you just found difficult - Latin maybe ?.....x

  • Latin OMG I remember those Latin Verbs Marz , Im dyslexic so just about managed the English homework ;)

  • You should not assume things about people you don't know just because they do not agree with you. Some of these people are still working!

    Some people just prefer to listen to their doctors and specialists, the ones who have studied for years to know about these things.

    (Edited to remove quote from other person's response that was deleted due to violation of guidelines)

  • It must be the brain fog then that goes with Fibro , which we have all suffered with on here - I said I could be wrong, but you choose to ignore this , it occurred to me since there is another thread talking about Benefits in Fibro Action

  • Oh Marz how I love the Buddhist teachings too, they say when the pupil is ready the teacher will appear, sadly there seems to be many who are not ready even when shown a different path. I belonged to a fibromyalgia support group and the wallowing was dreadful with no genuine interest in finding solutions unless they involved a quick fix with all sorts of pills, which of course then landed them in more trouble with side effects. I gave a talk on Mindfulness at one session, as it is proved to help with pain relief, it went down like a ton of lead because it meant a commitment to practice and yet thousands are following this subject with excellent results. Coincidentally a lady Practitioner who specialises in fibromyalgia noticed many were reluctant to listen to how improve their health because they would lose their benefits.

  • Thank you Joyia. I am saddened that your talk on Mindfulness was not given the respect it so deserved. Keep up the good work ....x

  • I find it inconceivable that when presented with information that might be the answer to someone's ill health they don't or won't follow it up, yet it happens again and again. They prefer to take that information back to their GP who of course laughs at it, when just taking charge of their own health might start them on their way to being well. I can't tell you how many times it's happened with people I know. I just wish they'd stop grumbling about how ill they are each time I see them when any suggestions I make have not been at least considered.

    I think it's largely to do with having had it rammed down our throats for so long that we have a "a health service that is the envy of the world" that some people find it just a step too far to realise that maybe they have to walk away from it.

    .....and as for trying to explain to people how ill my daughter has been and that we've had to search far and wide for help, well don't let me get started on that one!

    As one old friend says to us "There's nowt so queer as folk".

    Jane x

  • Yes Janeb , my GP almost laughs at me :( I guess after my first appointment with Dr Skinner I will be having the last laugh when I see her - oh dear that sounds aggressive ;) Im not though) Hope you managed to get help for your daughter Jane? - I think our health service is antiquated in many respects , thanks for the response :)

  • They were fine when we had to visit A and E with my daughter (broken arm 3 times and concussion once), but it's the chronic stuff they have trouble with. Jane x

  • Yes agree entirely with you Janeb :)

  • Apart from thyroid problems it is amazing how often you come across people who go on about their problems but if / when you suggest something perfectly reasonable that they could do that might help there is always a very good reason why they can't do that.

    I have come to the conclusion that these people don't really want their problem fixed. They like the drama or whatever of whatever it is they are moaning about whereas we on here will listen to and try pretty much anything to get better.

    Liz :-)

  • Yes LizH a person with a drama problem is called a codependent - My psychology research ;)

  • an NHS endocrinologist (who was seeing me for my 'bariatric problems') laughed at me and said I was not hypothyroid as my TSH was only 'slightly' above normal range and my fT4 was in normal range.

    When I asked him 'what about my symptoms' he said those don't mean anything!

    I started treatment (I was on Levo back then) then switched to NDT and then to T3 only therapy(I am taking 180mcg daily so far and increasing). I saw this 'endo' again a few months later, to be honest I did not want to see him anymore but I went to prove a point as then I was thousands of times better since he last saw me and lost weight.

    I sat there and he said to me 'so, are you still intoxicating yourself with thyroxine' (I did not say I was on T3) and said 'yes I am still intoxicating myself and all of my negative symptoms have gone' with a smile on my face. I said to him I did not need his services anymore and left :)

    I was never a patient of Dr Lowe, I was diagnosed when he died :( but I HIGHLY admire him and I have his book (the metabolic treatment of fibromyalgia), I believe a lot in his approach and follow his line :)

  • I love your style nobodyisdriving good for your to give your GP his pedigree , great you have got yourself better :)

  • Dr Lowe was a lovely,caring, gentle man. He was a doctor of chiropractic so had come to his treatment of thyroid problems from a non-endo background, but from treating his chiro patients. He was an amazing researcher too and could break down any of the mainstream dinosaurs' arguments without battling an eyelid! Much loved in this house and sadly missed. Jane x

  • He sounds like he was a real genuine soul Jane, very sad indeed, hes no longer here

  • It's a sorry mess indeed... we need better treatment.. have you signed the petition?

    you.38degrees.org.uk/petiti...

  • Yes Redditch ;) I have signed this , there needs to be 100,000 signatures before this gets debated in Westminster? unlike the Scottish Government they only need 1 signature for a petition to be heard

  • I'm sorry I can't agree with you I was told 10 after I had ny son I has fibro and I have fought every other way I can think of ti another diagnosis and get help I'm desperate to work in 2003 fibro now subclincalky hypo did the no bloods from her came back risk of Hashimoto’s and graves disease I jave oesteo but didn't get diagnosed till 9 yrs later with bone pain they wouldn't believe I had low vit d risk of hyperparathyrioidism ñiw brain liesons I've had constant brain neck pains for 6 years o scream in pain abdominal pain have to evacuate own bowels over saved hard paid for own mri bloods screenings I'm still considered fibro chronic pain so please not every one wants to stay on benefits but some are scared like me that there cosidered hypochondriac even when the facts are put in front of doc and still refuse to change diagnosis meanwhile our health vets worse and some people forget that when you put benefit people down not all are the same I once worked all the hours I could paid a mortgage brought kids up on own now about to loose iyt all but I'd rather have my health sometimes fibro can be a useful label for a doc to do nothing every dam symtons is called your fibro if you can get me help for a diagnosis I will be there in two minutes I e tried till I can't anymore I'm on two or three of these sites and the negative comments are not what I need while I'm on benefits not through choice I jave it because like you've all just said you have isolated the likes of me and doctors have done the same now I'm nearly 60 don't retire age of 68 my mother worked till 82 please think before giving us all the one label

  • There have been many posts coming through on my Thread at Fibro Action HU, where I was trying to show these people with CFS and Fibromyalgia can get well - It is clear from certain posts these women are actually bullies, they had even resorted to personal attacks , with regard to my spelling and punctuation , since I am dyslexic - How do I remove myself from that Group , this HU Thyroid UK is very friendly , In Fibro Action, I clearly feel Im a threat to the Group

  • I don't post suggestions in Fibro Action anymore either. I suspect some of them were so grateful to be given a diagnosis they are too scared to let go of it. Little do they realise that it means nothing, is used too freely as an excuse by their GPs to do nothing and that this label is actually keeping them ill. I'm thinking of removing my account as I don't want to see them in that pathetic daily summary and they never respond to suggestions anyway. I have concluded that if people on there really want to get well they will find their way to thyroid uk and get some useful support.

  • Yes Editmrt , I wasnt querying their symptoms in anyway , the diagnosis is questionable when thyroid hormone condition has exactly the same symptoms - Do you know how I can remove myself from that group please ? Thank you for your supportive comments :)

  • Click onto your name on the Green Bar and then onto Account on the Drop Down Menu where you will see the Delete Account line. Hope it works for you ! Had my Grandson staying for a week so have learnt lots about computers !! x

  • Thank you for this Marz :) done :)

  • Hang on just a minute! I use both the fibro forum and this one and, until your post suggesting that all fibro is caused by a thyroid problem, there has been no problems at all. I suggested that not all fibro patients have a thyroid problem then get replies basically saying that I am wrong. A few others also do not believe it is their thyroid that is the cause and immediately they are told they clearly don't want to be well! Can you blame them for going on the defensive?

    By all means, if you truly think that the only way forward is to pursue one avenue of thought, you do that, but don't expect everyone else to think the same.

    I personally believe I may well have a thyroid issue, albeit at the milder end of the scale. I also believe I may have an adrenal problem.

    My mother has had ME since I was 14; there is nothing wrong with her thyroid. She has had two seperate bouts of ME both of which were specifically diagnosed and given specific names under the ME umbrella.

    I am sorry that you honestly think that so many people do not want to be well or to explore every possibilty out there in regards to possible causes, but to state that to them when you have no facts to back it up is unsupportable. I go out of my way to do research, work with the doctors who are trying to help (granted there are always some that seem to not want to get involved....find another who will) and NEVER give up in the hope of being as well as I was not all that long ago.

    To be honest, I chose not to respond any further in that post as it seemed to be upsetting to some but to then come on this site and find you slating them here too is by far the worst thing of all. You're acting like a child.

    I can only hope that the admins close both this thread and the one on fibroaction and this can be gotten over because it's left a sour taste in my mouth.

    P.

  • Out of interest what were the Thyroid Blood Test results of your Mum and of course yourself ? It just maybe that someone may be able to guide you....and also you can prove us all wrong with the facts. My cousin who was diagnosed with ME back in the 60's has since found out she has Hashimotos - when of course the Thyroid Blood Tests do show results that appear normal or in range. Unless the Anti-bodies are tested then it is not possible to diagnose Hashimotos - so have you had yours tested ?

    I was that FM girl way back - and years later was diagnosed with Hashimotos - now enjoying pain free health....it can be done.

  • I will not be posting my results here, nor those of my mothers. I have been tested for antibodies and I am clear in that respect. I am not privvy to my mothers blood results and would never invade her privacy in such matters.

    I have had plenty of guidance from people on this site, which has been greatfully recieved and I love the support I have gotten from both here and the fibro site. But to suggest that fibro is caused by thyroid is inaccurate. It IS the cause for SOME people, but not all and that is the key point. There is never only one answer to such a question. If it was the only answer even our slow acting NHS would have worked it out by now and if not the NHS than some medical team somewhere would have, definitively, but as we all know, that hasn't happened as yet; so to catagorically suggest that those unwilling to believe their problems with fibro are caused by their thyroid are not willing to get well is highly unfair, don't you think?

    It did not take me years of frustrating problems to get any diagnosis and the doctor I currently have is supportive and will ring me up himself to let me know everything that is going on. I KNOW he is backing me.

    It would be very nice if these problems were now put aside instead of being continued. We are not primary children and should be able to accept that people have different points of view and leave it at that.

  • I do not have fibromyalgia and I am glad you have a supportive doctors and that in itself is excellent.

    I have read the cause of Fibromyalgia as a metabolic disorder wasn't discovered till the 1990's

    Dr Lowe has stated:-

    As far as I know, the concept of fibromyalgia as a metabolic disorder due to too little thyroid hormone regulation was first proposed almost simultaneously by Professor Jean Eisinger in France and my research group. That was in the early 1990s, and at that time, we precious few others subscribed to the concept. Now, however, countless clinicians share the belief that fibromyalgia results mainly from too little thyroid hormone regulation; they also know that the patient's condition is often worsened or complicated by the other metabolism-impeding factors I listed above. These clinicians also know that integrated metabolic therapies and lifestyle practices enable most fibromyalgia/thyroid patients to recover their health. And the clinicians cooperate with patients who want to use the therapies and lifestyle practices. With so many natural or alternative medicine clinicians sharing our point view on the condition, sunshine may be shed on some 25% of the world of fibromyalgia.

    (or thyroid hormone resistance)

    web.archive.org/web/2010081...

    As you rightly say people can have their own personal opinons.

  • Thank you for your comment Ladytelita, I have researched the internet obsessively for over a year on how to get myself well, it was then I discovered the thyroid hormone problem and corruption that was involved with this.. Many peoples livelihoods would be at stake, this is one of the reasons some health professionals are in denial, It shocked me. I do not in any way doubt your symptoms , I know these are real. There have been scientific tests done to support this theory there are many issues with this thyroid hormone problem, not only one sadly. I know I speak for many in that we are so thankful this Petition has been submitted by three amazing Scottish Ladies - I wish you well in your recovery

  • I agree with you. Thyroid is the cause some of the time, but not always. A lot more research needs to be done to find the other causes. I have a friend whose fibro started after her husband died (at a very young age) and several other things happened including her son attempting suicide. There appears to be nothing wrong with her thyroid. Perhaps it is adrenals; perhaps there is some other mechanism that caused her debilitating condition following such trauma. Who knows? But it is very presumptuous to assume that all fibromyalgia is caused by thyroid.

    I hope you find what works for you :)

    Carolyn x

  • Oh dear - I think that some people forget that the idea of this forum is that shared info can be helpful to others rather than dictating what should be done and what should not be done. I have learnt so much about my condition (hypo) through other peoples experiences and their comments have lead me on to read up about the suggestions that have been made. I would never have even heard of T3 without this site- which in my case has been my salvation. However this does not get away from the fact that endos and GPs in this country are working within Government Guide lines and as a result some are not completely happy in prescribing T3 as whilst it is not banned- it is not 'recommended'. We also live in a compensatory society and if things did go wrong - whose head would be on the block? They have got to be careful. Saying that, I really hope that the T3 question is sorted soon as it can be so so helpful for a lot of people. However I really feel uncomfortable with the tone of some of the posts on this subject. I cannot believe many people enjoy being ill as has been implied- perhaps they are just not so confident in their own abilities or are just frightened of being abandoned by the professionals.

    Lets all calm down and try to help each other. If the help is ignored- then that is their prerogative. Live and let live.xxx

  • I noted from the recent Petition sitting, transcript , it would appear there has been double standards applied when there was a shortage of T3 , happy to say it is OK to obtain the Licensed T3 only from other countries when we are short here in the UK , have others understood the explanation, how its coming across to me , or am I getting the wrong end of the stick? :) I think the Petition Panel have also picked up upon this point too?

  • ...so anyone that trained before 1990 would not be aware of the connections between Thyroid and FM....as per Shaws post. A lady who posts with excellent knowledge and empathy....

  • But also the Training it is said in the Video Petition that comes from Source RCP, is very questionable

  • ..can't help thinking one or two on the panel may have a thyroid issue.....hope they learnt something from Sandra and Lorraine.... :-)

  • I think you are right , I thought the Lady might have a thyroid hormone condition , that's got to be a positive for this Petition - Am I aloud to copy that link here , is it deemed as political, does it breach this sites guidelines? :)

  • ...think it has been discussed many times so am sure it will be OK. It's on the main Thyroid UK website too....