High Levels of Vitamin B12 and Ferritin: Any pointers?

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"

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.

Hi @yasmeen, welcome.
According to this article from Livestrong, you can lower B12 levels through diet, switching to more plant-based choices:
- How to Lower My Vitamin B12 https://www.livestrong.com/article/525942-how-to-lower-my-vitamin-b12/

I agree that you might wish to consult your doctors in your upcoming appointments before making any changes. Memory issues are more commonly related to B12 deficiency, so maybe there is something else going on in your case. Can you describe more of what led your doctor to order these tests?

I have essential thrombocythemia, a liver mutation resulting in overproduction of platelets. My B is off the chart, my hematologist is unconcerned saying B is stored in the body for long periods. I have switched to plant based and stopped daily multiple vitamins in the last 6 months, haven't had that tested lately.

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.

Hi Optimust,

Thank you for your reply. I was aware that vitamin B12 is water soluble which is what is so concerning about high numbers. And many of the things I have read suggest that if it is high it is a functional B12 deficit because it means you are not utilizing B12. But I am also not excreting it which also seems like it should be a matter of concern.

I know that sometimes a high Vitamin B12 level is the first sign of something more serious and often appears before other markers do. I looked up Polycythemia Vera and I have many of the symptoms. What I don't have so far is increased red or white blood cells. My platelets went up 30 points at my last blood test but were still within normal range.

May I asked what type of doctor diagnosed your polycythemia vera? Was it a hematologist? I sent my file to UC San Francisco Medical Center Hematology Department because they state on their website that high Vitamin B12 is something that should be thoroughly investigated. I sent it in mid-June and I still have not heard from them. Every time I call to follow up the new patient coordinator tells me that my file is still in review. I know that there are so many people who are worse off than me so I imagine that their files get higher priority, and rightfully so. And so I wait.

Talkdoc

Hello12061948, I have talked with a doctor at our cancer center, he feels my high B12’s are probably due to inflammation since I have GI issues also. To give me peace of mind more than anything, he ordered blood work for several cancer markers. The results take about 3 weeks so I have to be patient. I’m thinking that he is probably right. I go for my colonoscopy at the end of the month so I think I’ve covered all the bases. I will post my blood results when I get them. Hope things are going well for you. Emy.