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Pernicious Anaemia Society
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B-12 might not be the problem

Hi All - I'm having ongoing investigations for what feels like chronic fatigue syndrome and looks like it may be some sort of auto-immune syndrome. I've been ill for a year, had loading doses back last March, which felt miraculous and completely brought be back to "normal", then I slowly drifted back to baseline (feeling awful) over a few months, began SI -- because of course! it was B12 that had brought me back to life! I was SI every other day in a completely futile attempt to get that first lift back -- it never came. Have now been to a private diagnostician/specialist and investigations are still ongoing, but I believe now that although I may have had a B12 issue, and B12 may be part of the syndrome I have (i'm fine for ferritin, folate, IF negative, though I know not reliable), I believe now I was too convinced that B12 was the one answer. Despite the fact that months of SI made no difference to my health, I was caught up in a cycle of certainty that THIS was my problem. This is not remotely to denigrate the people that B12 is helping/saving, and I know there are many. Just wanted to say to keep your mind open, and understand that there may be bigger/other/separate health issues causing your symptoms. I'll report back when I have a definite answer to mine.

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That's interesting Pingo I hope you find some answers soon.

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I am also waiting for an appointment for investigations into auto-immune disorders. I had loading doses approx. 2 years ago, and then 12 week injections, this was fine until about 12 months ago when a routine thyroid test showed my dosage as too high, and it was reduced, a retest after 8 weeks showed level as too low, so dosage increased, next retest showed too high and dosage decreased, this went on for almost a year, and I was rapidly getting symptoms of B12 deficiency, chronic fatigue, and outbreaks of a rash what look likes psoriasis. although a blood test showed B12 and folate levels as normal. Finally one GP said enough messing about with the thyroid medication and told me to stay on the higher level of thyroid meds and increased B12 injections to 10 weeks, her opinion was the level of various hormones need to be in sync to work properly, and made a referral to a specialist in auto-immune disorders to have more in-depth investigations. So I think the answer must be to get the right balance of various hormones and other elements for them to all work efficiently, as since following her advice I would say the fatigue problem has improved about 60-70% Unfortunately I live in Wales, and NHS Wales has an appalling record for waiting times, for a first appointment, their commitment is 26 weeks, but they admit it is often more like 36 weeks.

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I have a friend who's convinced we're all suffering from chemicals and micro plastics in modern life - whatever it is, life seems to be throwing up a lot of complex autoimmune stuff that needs equally complex diagnostics -- good luck with yours, i'll report back on mine!

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