← Return to High Levels of Vitamin B12 and Ferritin: Any pointers?

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@optimust

Hi, I hopefully have some answers for you...and many of you! I also have been trying to figure out the causes of my high B12 for the past four years and after the diagnosis of a rare, genetic disease called, MEN-1 (Multiple Endocrine Neoplasia - Type 1), in early 2018 which is a form of cancer in that it causes tumors throughout my endocrine system, some are benign, some malignant, I thought I finally had the answer. Turns out I was wrong, and to date, this disease is not the cause of my high B-12. That said, I'll admit I was the slightest bit disappointed to learn this particular disease had nothing to do with my high B12...and as my health has continued to decline despite surgeries to remove tumors (the only way to battle to this disease), I have been digging even harder to find the cause of the elevated B12 knowing there IS one! I too have heard from ALL of my physicians, many of whom are quite brilliant, very well-respected, published doctors at major medical institutions such as Mayo, MD Anderson and Baylor that, "there is no clinical significance to my high B-12" when my lab reports come back! Well after four years and me requesting it be checked at least once or twice annually, (each time it has gotten a little higher...yet there's NO SIGNIFICANCE to that???!!!!) Come on already!
So here is what you need to know: Vitamins B and C are water soluble and any surplus of these vitamins is excreted in the urine. Vitamin C and all of the B vitamins -- thiamine, riboflavin, niacin, vitamin B-6, folate, vitamin B-12, biotin and pantothenic acid -- share similar characteristics because they are all water soluble. The body has a limited ability to store these vitamins so they need to be continuously replenished by the diet. Water-soluble vitamins are absorbed by the digestive tract into the blood stream, metabolized and then excreted by the kidneys in the urine.
Knowing that, here is what you need to look up, and it's right here on the MAYO website, it's on Livestrong, MD Anderson, Healthfully, WebMD, etc... Just google: "causes of high vitamin B-12 levels in the blood"
Here is what I have: a rare blood cancer called, "Polycythemia Vera"

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Replies to "Hi, I hopefully have some answers for you...and many of you! I also have been trying..."

Was your CBC level abnormal (RBC, Palette etc) all the time when they say “no clinic significance to high B12”?

I am new to this forum and very happy to have found this group. I greatly appreciate all the posts.

I just had my first test results for B12 (1965), which according to the acceptable range (200 - 1100) is elevated. I am also wondering what this elevated score means. I will meet with my Primary Doctor this week and I will also meet with my Neurologist on July 21, who wanted my tests for B12 and thyroid information because of my referral related to “ memory” problem. I will update my post to share my experience.

However, given all I have read so far online, and noting that persons on a Vegan diet usually need a B12 supplement , I am wondering if my diet is an important variable in this elevated vitamin in my blood and if so if there would be merit in considering a change in my nutrition programme. (I.e. That I consume less meat source in my meals, to see if my B12 level lowers? E.g. I could balance my meal plan to incorporate more plant food sources and consume less animal source in my weekly diet. ) Just an initial thought. Does anyone in this forum happen to be on a vegan diet but have the problem of an elevated B12 level? I will continue my research even as I speak with my doctors.