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Sjogrens Topics => Living With Sjogren's => Topic started by: MAT51 on December 17, 2017, 11:28:02 AM

Title: Very high B12 levels anyone?
Post by: MAT51 on December 17, 2017, 11:28:02 AM
Hi All. Not unduly concerned because all my other bloods are good but I recently requested my B12, Folate and Ferritin plus blood glucose all be checked due to new additional pins and needles the length of both arms on top of going numb everywhere, including face. I'm hypothyroid but supposedly this is well controlled with Levothyroxine (Synthroid) which I've been on varying doses of for years.

When my SFN first started it was suggested to me on a thyroid community that I might have pernicious anemia. I was on Methotrexate, folic acid and Plaquenil at the time so got my homocysteine and MMA levels tested - all within range as was B12 (444). But my vitamin D levels were low so my GP agreed to prescribe me AdCal D3. I did some research and decided that there was no harm to be had by taking a B12 sublingually daily.

Cut to five years on and each time my B12 levels have been checked they have been progressively higher. Now they are at 1,478 which is pretty high. But I haven't been taking B12 on a regular basis for a few years?

Can anyone advise on the possible significance of this please?
Title: Re: Very high B12 levels anyone?
Post by: anita on December 17, 2017, 06:58:21 PM
I would suggest you ask this question on Neurotalk...MrsD.  She is the resident expert on Vitamin B12.  If anyone would know, she would.

I do know that a high (even very high) number isn't bad.  But as for what might cause it to be that high without supplementing, I'm not sure.  I also know that your nerves (especially, small fibers) benefit from a higher B12 level.
Title: Re: Very high B12 levels anyone?
Post by: MAT51 on December 18, 2017, 12:40:07 AM
Thanks Anita. I will post this on neuro talk for Mrs D's comment. My rheum and GP don't seem concerned - probably assume I'm supplementing as I was for a while. But I'm not sure it is always okay to have high levels - here is one of many links I found on the subject - I hope it's admissible to post here: https://academic.oup.com/qjmed/article/106/6/505/1538806

My other levels are all good presently apart from low % saturation of transferrin which is low ie under range. I looked this up and it seems that it's just another indicator of autoimmune inflammation.