Can anyone tell me how long before the test must you stop vitamin B supplement? I am suffering nerve damage. Burning mouth, lips, tongue, fingers on fire. night time really bad and pain wakes me up at about 3am spreads up legs and down arms. So I in panic started dosing with B vits. Had taken B vits before to raise my B12 level from 191 a few years ago and so with supplementation over the years have got my total B12 blood test level up to 550 6 months ago - stopped supplements and recent test shows 400. Then suddenly hit with this nerve damage indication over the last 10 days.
I am going to have to have a private active B12 test as GP says my levels are fine.
Even tho current NICE guidelines are treat if have symptoms irrespective of serum levels. I asked for a B12 injection just to see if symptoms then start to subside. According to the PAS society B12 is harmless and costs 56p. I hope the active test will highlight if symptoms are B12 deficiency. If it is not B12 I suppose it will ten be autoimmune attack on my myelin? I have high ferritin but bordering on anaemia with v low transferrin saturation at 18% and my TSH has risen to 3 so wondering if thyroid/iron symptoms - all connected?
But first I need an active B12 test and want it to be relevant, not be skewed by recent supplementation. Any advice would be really appreciated. I have managed to get a GP appointment this evening and wonder whether I should print out te guidelines and take with me? Any advice, I would really appreciate
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LynneG
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I would seek advice from the Testing Clinic. I was told by Martyn Hooper - Chairman of the PAS - that B12 can hang around a long time - even more than 6 months in some cases. The Active B12 Test still does not show you what is in the cells - only the B12 that can travel from the blood to the cells so .....
If you have symptoms of PN go to the PAS website - check out your symptoms against their list and then go back to your Doc. If you have neurological symptoms then you should be treated - irrespective of the test result. They will also help you to have a dialogue with your GP.
No, thank you so much Marz. Thanks for the link, I will print off and take with me.
I had read a while ago that Homocysteine was indicative of activity of B12. So I have had my homocysteine serum test measured at GP's and my results are
Please note I have supplemented B12 and then later B vitamin complex on and off for years from when Serum B12 was 191
Most recent
25/11/2016
Serum Folate 10.7ug/L
Serum B12 474ng/L
Plasma Homocysteine 8.2 umol/L
18/4/2016
Serum Folate 11.3ug/L
Serum B12 551 ng/L
Plasma Homocysteine 9.7 umol/L
1/8/2013
Serum Folate 12.2ug/L
Serum B12 367 ng/L
24/5/2012
Serum Folate 18.9ug/L
Serum B12 294ng/L
Plasma Homocysteine 8umol/L
29/3/2011
Serum Folate 13.9
Serum B12 191ng/L (Report marked as normal lab range 191-663)
I have read that Homocysteine is regarded to be high when into double figures and good at around 5/6. Good B complex with the B12 should soon sort that out for you. Not many Docs test for Hcy - so you were lucky !
The link above is a website that is far too big to print off - so do have a good read and decide what is needed for your GP. Have you looked at the Pinned Posts on this Forum - if you are on a PC - they are to the right of this thread. On a phone you will to scroll down to have a read.
Ranges for Folate do vary so what is yours - difficult to comment without the range. Again I have read that halfway through the range is good. B12 and Folate work together in the body ...
There are many causes of low B12 - so best to read up on PA and request the relevant testing from your GP.
Raised Ferritin can sometimes indicate inflammation somewhere in the body.
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