A few months ago I wrote on here to share how my Dr had said he could no longer help me and gave me the label above saying its just something I would have to live with and I could join a group of like sufferers....
So I went and saw a nutritionist at the Brain Bio Centre and agreed to pay for a variety of blood tests. To cut a long story short I do have food allergies wheat and diary )and have to cut of sugar etc; but (a urine test that the NHS do not do) showed I have PYROLURIA, a genetically determined inbalance involving an abnormality in hemoglobin synthesis. Basically my body does not retain B6 and Zinc, never has. When I looked Pyroluria up I was amazed at the amount of info and relieved that how I had felt for as long as I remember, with increased symptoms the older I got, was not in my imagination !
Supplements for the rest of my life but 3 weeks in with the additional supplements I take to assist the B6 &Zinc being absorbed, I feel a marked improvement to my symptoms and its early days !
I know this wont be applicable to everyone and I was going down the B12 PA as the symptoms were so close. Thank you to all who were so supportive with messages.
Jackie R
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JaksR
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So happy for you JaksR . I'm forwarding your comment to my 40 year old stepdaughter who's had M.E./C.F.S since high school hoping it will be of some help to her.
Thanks for sharing your info and diagnosis. Hopefully it will help someone else.
'Chronic Fatigue Syndrome' / Depression ?
"share how my Dr had said he could no longer help me and gave me the label above "
I must admit that I get really frustrated sometimes thinking about how many people get stuck with a label of chronic fatigue/depression. My experience is that often medical investigations come to a full stop when these labels are given.
Some people just don't have the support and resources to get to the bottom of what's causing their symptoms.
Really interesting. Great that you've got a diagnosis.
But it fills me with despair that there are these kinds of conditions that the medical profession/NHS don't recognise, and then write people off as untreatable/tell them they are not really ill.
lm glad you've finally found out, lm in a similar situation with iron def, vit d def and b12 of 140 no treatment for b12 and told it was dietary, l have done some home tests and fibre def, vit c def and something called molybdenum def all severe, iv just started on the molyb so don't know if its made any difference yet, they don't give you results for anything under 85% or god knows what else would flag up! as with most people on this site we all seem to have to do our own investigations because the medical profession seem to so be lagging behind with nutrition issues and agree with the above post that we are all labelled with depression when we rarely are its basic vitamins and minerals oh how l wish they would catch up with all of us, all the best for the future
I am now rather alarmed because I was silly enough to do the Brain Bio Centre's questionnaire, and I came out marginally not good! It might have been the headache and the very hot day....
I will ask my doc to do the homocysteine test - and I think this may be the nudge I need to properly cut out sugar. But then I suspect its worth going to see them.
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B12 deficiency...Super Confusing :(
help with supplements
Iodine def. and b12, has anyone experienced this please?
