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greygoose profile image
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naturalnews.com/047107_Oste...

Just as I've always said : lazy doctor disease!

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greygoose profile image
greygoose
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Marz profile image
Marz

...brave words GG :-) Try saying that on a Fibro forum - you will be locked up :-) I was banned ! I can support the article - was full of Hypo pain - LOW D - and LOW T3 for too many years.... and adding the GF bit ( yes I know you don't agree :-) has added the icing on the cake - GF of course :-)

M x

greygoose profile image
greygoose in reply to Marz

It's not that I don't agree that GF helps a lot of people, it just did nothing for me. If it helps people, I'm not saying they shouldn't do it, far from it.

Isn't all icing GF? lol Or were you talking about the cake?

But I know that talking to fibros is a dangerous thing. I've tried it. Started out by saying hey, wait a minute, aren't those hypo symptoms. Shot down in flames!!! But the more I read about it and the more I talk to people, the more certain I am that most of it is hypo. My specialist doctor told me that it's always hormonal - well, vit D is a hormone too.

I cannot for the life of me understand why people cling for dear life to a diagnoses - that is at best dodgey, and at worst negligent - of an incurable, untreatable disease. It's somewhat understandable in the US where they get some kind of invalidity support if they have fibro, but not if they're hypo. Crazy, isn't it! But I don't think that's the case anywhere else. So, you would think that they would at least try for a diagnosis of something treatable.

I know that if I were diagnosed with terminal cancer, and then told oh no, they didn't do the right tests, it's flu (the reverse of my mother's case!) I would be angry, of course, but thrilled to bits that not only was I going to live, but would possibly be pain free. I just don't understand, and nobody has ever been able to explain it to me.

Every time I hear someone say (or read) that they have fibro, CFS and hypo, I cringe. I think poor darlings, they must have a terrible doctor, they're not on an optimal dose - either of thyroid hormone or, it now turns out, vitamin D. I hope lots of people take note of this article and get their lives back.

Hugs, Grey

Marz profile image
Marz in reply to greygoose

Am sure they will....although so many Fibro sufferers take so many pain killers I think it puts them into a place where it is difficult for them to try different things.

Good post....will send it on to a few !

greygoose profile image
greygoose in reply to Marz

:)

Joyia profile image
Joyia in reply to Marz

As a person with a fibro diagnosis, much of what you say I agree with, I know many who resort to painkillers and other ghastly drugs rather than look at alternatives. Problem is as we all know it is almost impossible to get one's GP or Endo to make a connection with fibro and the thyroid. I follow many different alternative regimes which I believe helps but am still suffering a lot of joint pain and adrenal deficiencies, my GP is convinced I am adequately medicated with my dose of 100 thyroxine. I have tried T3 which did not agree with me so constantly back to square one.

Marz profile image
Marz in reply to Joyia

Am sorry to hear that. I too have struggled over the years with FM or unexplained pain and thought that when my thyroid was optimal I would improve. I started T3 with High levels of D3 and increased B12 almost three years ago and the improvement was noticeable. For the last year I have gone gluten free - and that has been even more noticeable ( I have Crohns too )

Am wondering why the T3 did not work for you - was it Adrenals ? I guess you are taking all the suggested vits and minerals.....I believe there was an article posted this morning about VitD/Thyroid and Fibro.

Do hope you soon find the missing link :-)

Joyia profile image
Joyia in reply to Marz

Thanks Marz for your input, much appreciated. I started to feel unwell when on a trial of T3 and also had a strange episode where I ended up in hospital with horrible feelings going down my arms and up into my throat, I was not diagnosed with angina but just in case I stopped the T3. Went gluten free for a long long time but have to admit have fallen off the bandwagon this summer, not sure that made much difference either except I lost weight which is always a good thing. At the moment I am feeling somewhat unwell which I believe is due to stress from my family situation, am finding it very hard to pick up from this, think my adrenals are exhausted. I do take Vit D but will increase the dose and also take some B12 to see if that helps. Glad to hear you have found some improvement in your own health.

Kind regards

Joyia

Marz profile image
Marz in reply to Joyia

Thank you. I remember reading that large doses of VitC are good for Adrenals - I take 1000mcg x 2. Think its another one of those vitamins that is multi-purpose ! Have you taken a peep at Paul Robinsons website - he wrote Recovering With T3 - but his site talks a great deal about Adrenals which may be helpful. Hope you soon feel better.... Do you have Hashimotos ? I read that you have AS which is also auto-immune I believe. It never rains but it pours....

rwt3.com

With vitD it is advised to dose according to results - according to :-

grassrootshealth.net

The measurements are ng/mL on the chart shown whereas in the UK I believe it is nmol/L - so just divide your result by 2.5

Hope you soon feel stronger....

greygoose profile image
greygoose in reply to Joyia

Joyia, I've had aches and pains of varying intensity for years and been taking more or less large doses of Ibuprofen - at least 4 a day - since 1999.

I got my T3 optimised, take B12, B complex, magnesium, ubiquinol, Vit D3, Vit C... all of which have helped a little. And I've tried many, many other things which haven't helped at all. But then I started taking zinc...

I now no-longer need the Ibuprofen. Haven't taken any since I started zinc.

However, last Monday, I fancied jasmin tea... Two cups and that was me done for the rest of the week! Couldn't get out of bed. All I wanted to do was sleep and drink water. I would never have believed that anything could have that effect on me - and I was coming on so nicely! lol

My daughter says it was just coincidence and I caught a bug, but I'm not so sure! Green tea is a goitrogen, and does contain too much fluoride. And it does adversely affect certain people - see the writings of Dr K! So I really think it could be that.

What I'm trying to say is that some foods can have very bad effects on us - and not just gluten and dairy! Keep a wary eye on what you eat and see if any of it can be responsible for making you feel bad. You might be surprised!

Doctors have no idea of the power of food. The only things doctors have ever told me is : eat no fat and eat no salt. Both of them wrong! Where food is concerned, we have to be our own physicians.

Hugs, Grey

Helenabc profile image
Helenabc in reply to greygoose

Hi Greygoose,

This weekend, I have been thinking about the very thing you mention, namely people clinging to diagnoses like M.E. even after another explanation for illness shows up. It is both sad and fascinating. I understand it only a little. Many of these folk were unwell/ill for years before getting ANY diagnosis, and were very relieved to have A diagnosis so that they could at last provide an explanation for their disability to family, employer and benefits people. Also the (occasionally unwarranted) reassurance that it wasn't anything like cancer.

From then on, M.E. (or fibromyalgia or whatever), was the reason for their slow-lane life style, and became part of their identity -- remembering that such people have often lost most of their previous roles. They maybe joined a patient group, and made new friends amongst folk with the same difficulties and limited lives, and got involved giving emotional support to these people.

For me, this doesn't fully explain why they can't let go of the fibro/CFS/ME identity if a doctor later identifies hypothyroidism, or a heart defect, or depression, or cancer or anything else as the cause of their symptoms. But it goes a little way to explaining it. Perhaps the doctor encourages them to keep the old label?

On here, we see people determined that they, or someone they know, has thyroid disease. Sometimes that explanation for the ill health seems unlikely. Sometimes the person who is the focus of concern isn't even unwell. So, this is another manifestation of a similar thing.

Another aspect is that, quite often, people become convinced they have been miraculously healed even though they clearly remain sick just as before.

And some people are ill, but never admit it to themselves.

It is as if the mind decides whether or not to own an illness, independent of the bodily state.

I've had an hour's 'phone call in the middle of writing this, so its probably out of date: sorry.

greygoose profile image
greygoose in reply to Helenabc

Well, not out of date, but...

I can understand some of your reasoning, but it still indicates to me an unwillingless to get well. And, that to me, is unacceptable. I have known people who don't want to get well...

There was a girl I met who was suffering with terrible depression, and I looked at her and I saw the thin, lanky hair, the moon face and the amount of weight she'd put on, and I said to her, are you sure you aren't hypo. She said, on no, no, the doctor tested for that because my mother is hypo, and he said there was no problem. Oh, I said, and if you don't mind we asking, what did he test and what were the results (intruding, I know, but I felt so sorry for her!)? She said, oh, I don't remember, but they were normal, the doctor said so. I said, but you do know that doctors often don't know what normal means, and that depression is a symptom of hypo, and you have a lot of other signs and symptoms. She said yes, but no, I'm not hypo, I'm just depressed.

Depressed was putting it mildly! She was practically catatonic! She couldn't go to work. But... she had a boy friend. And this boy friend looked after her. Waited on her hand and foot! Looked after her like a princess. He was a male nurse. Now, I really Wonder about that Relationship. Would he still have cared for her if she was well? Was she staying ill - resisting diagnosis and treatment - in order to hang on to him? Did she feel unworthy - as so many hypos do - and think she was Lucky to have found him and that if she lost him, she'd never find anyone else? So many questions that will never be answered because she stayed depressed and unable to work until they both disappeared from my horizon...

So, I can see many reasons she might, subconciously maybe, have wanted to stay ill. But I still don't get it! Who would want to stay ill for any reason?!? Did she not realise that if she had been treated for hypo she would have lost weight, her hair would have become thick and lusterous, she would have been able to go out and take her rightful place in the world as a beautiful, active member of society? Was she giving all that up just to hang onto that one man when she could have had a dozen others (and better!)? Or was she so ill that she couldn't see that far or that clearly? Or were there other motivations that I can't even imagine. I can see all that. But it still doesn't make sense to me!

Maybe - very possibly - it's just none of my business! lol But, I cannot see someone suffering without holding out a helping hand. It is my nature to try and save the world, even if it doesn't want to be saved! My one aim, all my life, has been to get well! Completely well, live like other people. Be able to run!!! Oh, god, how I would love to run... It is therefor inconceivable to me that someone would not want to get well. You know what I mean? lol

However, all this conjecture doesn't lead anywhere. What I would like to hear, out of the mouth of someone concerned, is 'I do not want to get well because...' Then I would say OK, fair enough.

So now, you are going to say to me, well, perhaps they aren't able to put it into words. Maybe they don't even know! And that's probably true. But that still leaves me unsatisfied and wishing to know more...

But, that's enough phylosophising for tonight! I'm going to bed! lol

Hugs, Grey

Helenabc profile image
Helenabc in reply to greygoose

I think, Greygoose, that very depressed people just have no motivation left. They can get where they are unable to help themselves. I suspect that the relationship that this young woman had may have been really negative: if she had felt loved, she would probably have begun to care about herself.

I wasn't talking about depression cases, but about how non-depressed, sick people cling to a label even when it is redundant. Or throw it off even if they are still sick.

The Gupta course for people with M.E./CFS has a section where you are helped to uncover any fears you have about becoming a well person, and to deal with them. Going from long-term sick to healthy is a big life change, and there can be real reasons to be worried. There can be a need to drag the anxieties out in to the daylight, weigh them up, and send them packing.

greygoose profile image
greygoose in reply to Helenabc

I've never heard of the Gupta course.

I know you weren't talking about depression specifically, but it's the same reaction - I don't want to get well/I'm afraid of getting well. I only know one person personally that has been diagnosed with hypo. I haven't seen her for a while but when I mentioned hypo to her, her reactions was like whatever. And she professes herself desperate to get well! She's always posting stuff on Facebook about how terrible Fibro is, and how she's suffering, and I think to myself, well, do something about it, then! The pain killers she's being given don't touch the pain, but she still won't contemplate any other action. It's heart-breaking. She's a Young girl with three Young kids. She needs to be well. I just wish I knew how to get through to her.

Helenabc profile image
Helenabc in reply to greygoose

Yes, it is particularly upsetting when mums of young children won't do the right things to get well.

Many years ago, I was told that my thyroxine treatment was doing its job, so my continuing illness was down to M.E.. I just believed that. I did not doubt it in 18 years, therefore I never read up on thyroid things. I read heaps and heaps and heaps of M.E. magazines, and kept up with the research. Doctors make the thyroid treatment thing sound so simple and cut & dried, so you naturally accept other explanations for why you are still sick.

It mostly isn't that people don't want to get well. They genuinely DO want to be healthy, and fast. Yet they can't get out of the mindset that such and such a thing, which can't be cured, is the cause.

People are complex!

What I am most concerned about is that the charity Action for M.E. is stuck in the M.E. mindset, even though they have been publishing research reports that reveal that around half of people with an M.E. diagnosis have been found to have some other disease which accounts for their symptoms. Now, don't get me wrong: they are a most compassionate and genuine charity, they're well run, and really support people. But despite the evidence that is seeping out, they still want people to be diagnosed with M.E.. Even though that diagnosis condemns the patient to no further investigations -- it is NHS policy not to run further investigations once someone has the M.E. label.

So, the problem -- the mental block -- is not just at an individual level.

greygoose profile image
greygoose in reply to Helenabc

Yes, I read something about some association that wanted these labels to stick because they were making money out of it! Not saying it's the same one you're talking about, but it certainly makes sense! Don't think I kept that article...

The trouble is we're brought up to believe that doctors know what they're talking about, they are always right. They certainly think so! It's such a shock when you realise they have feet of clay. It takes a while to get over that indocterination - Doctors are God!!!

By the time you realise that you have to take charge of your own health, after all those years of believing there were people to do it for you, it could be too late.

Helenabc profile image
Helenabc in reply to greygoose

Yes, Greygoose, I think that sums up the subject nicely. And I think we all need to be compassionate about other people's mental blocks -- we probably all have them but just can't see our own.

shaws profile image
shawsAdministrator

Another good link.

greygoose profile image
greygoose in reply to shaws

:)

lindi profile image
lindi

Does taking vitamin D help with chronic fatigue? I have been told I have CFS and hypothyroidism. I take 100mcg Levothyroxine a multi vit and a vitamin B complex daily but still feel totally exhausted so have been prescribed citalopram 20mgs to see if it helps. 2 weeks later I'm still totally shattered and full of all kinds of aches and pains and weird pins and needles across the top of my back (shoulders). I'm starting to feel like a hypochondriac as all my blood tests show no deficiencies anywhere!

Marz profile image
Marz in reply to lindi

Although you are taking a B complex it could be that there is not sufficient B12 in them. Have you had the tests that are suggested here daily - Ferritin - Folate - Iron - VitD - B12. All need to be high in their ranges - and NOT just in range. Ferritin needs to be around 80. If these are low you will feel tired and unwell. Also your T4 will not convert well into the Active T3 hormone. Some people feel better and have more energy once they take gluten or just wheat out of their diet.

VitD is VERY important and is needed in every cell of your body. Not sure what Citalopram is - am suspecting and AD - in which case the B12 and VitD at OPTIMAL levels may well help.

b12deficiency.info/signs-an...

vitamindcouncil.org Click onto Health Conditions at the top of the page where you can read loads of articles relevant to you. Recent research has linked Low D with Alzheimers as indeed there is a link with Low B12. Not the sole cause of course - but a link and part of the problem....

lindi profile image
lindi in reply to Marz

Thank you Marz. I have had all the blood tests and been told all is fine but not actually been given ranges.

I have been gluten and dairy free for many years now and citalopram is an antidepressant drug that im not over happy to be taking.

I will try to source some B12 and also vit D and see if I can improve my fatigue. X

Marz profile image
Marz in reply to lindi

Sorry should have read your earlier posts :-( If you have had all the tests then perhaps it would help if you obtained the results with ranges and post in a new post. Did you look at the links I gave you about B12 ? No point in taking Vits until you know what your readings are as doses will depend on your results....

grassrootshealth.net with shows the suggested doses based on results....

lindi profile image
lindi in reply to Marz

Thank you very much. Will get everything sorted. Will go back to your link re vit B and will also ask for my last blood test results to be printed out for me x

Marz profile image
Marz in reply to lindi

Sorry to be bossy - but have learnt a great deal from others here and I feel it does make a difference attending to the foundations before we build a palace ! - hope it does for you too.... :-)

lindi profile image
lindi in reply to Marz

I will update you when I've got my results and decided where to start next with treatment. Everything you've said makes good sense. If my brain was working better I'd have known this is the best route to go down x

Marz profile image
Marz in reply to lindi

You are going to be fine :-) x

istherehope profile image
istherehope

I was diagnosed with fibro about 12years ago if I remember my thyroid results were on the cusp of 'normal' I always felt I was underactive. Had agreement with gp to have thyroid tested every 6 mnths. Recently been diagnosed overactive after feeling so ill and discovered my gp stopped the thyroid checks in 2011. I was only having liver etc checked. Feel totaly unempowered and mistreated

Marz profile image
Marz in reply to istherehope

Maybe time to have your Thyroid anti-bodies tested as that may cause Hyper and then Hypo symptoms. They are Anti-TPO and Anti-Tg. I have noticed that with Auto-immune Thyroiditis - Hashimotos - Fibro does rear its ugly head - I think it is just a case of optimising the treatment and changing the diet....

Think you need to be more assertive with your GP and also ask for Ferritin - VitD - Folate - B12 to be tested too - they all need to be at the TOP of their ranges - just being in range is not good enough when we are unwell. Obtain copies of all your results so you can monitor your own progress - it is your right.

Don't be mad - get even :-) Information is power....

I was diagnosed with fibro, then menopausal symptoms, then a Graves.Once I started anti thyroid meds and got my vitamin D levels up aswell as vitamin B12 and ferratin iron all my "fibro" symptoms dissapeard. Dont think I ever had it all my problems wete undiagnosed Graves Disease x

I was diagnosed with fibro, then menopausal symptoms, then a Graves.Once I started anti thyroid meds and got my vitamin D levels up aswell as vitamin B12 and ferratin iron all my "fibro" symptoms dissapeard. Dont think I ever had it all my problems wete undiagnosed Graves Disease x

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