High Levels of Vitamin B12 and Ferritin: Any pointers?

I am new to this board and not entirely sure how to post but here I go, In October of 2018 I had an appointment with my family medicine doctor regarding some mild neurological symptoms I was having (pins and needles, burning skin, and the feeling, in specific areas, of a bug crawling). I have had fibromyalgia for over 20 years and she basically said that everyone has my symptoms but that I notice it more due to the fibro. I was not a fan of that answer primarily because she has made other comments about fibro that have led me to think she is not a believer. She offered to do a Vitamin B12 test to see if I was deficient. My test results came back with a vitamin B12 level of 1,726 pg/mL which she seemed unconcerned about. I went back this week for an annual check up and I asked her to redo the Vitamin B12 test which she did and my results came back as >1999 mg/mL. I spoke with her nurse who told me that I could come in to talk about the results but that they did not have much to offer me. She also told me that my CBC was normal. There has to be a reason that my B12 is going up, I do not take any supplements. And everything I read about high B12 is not good. But since my CBC came back normal should I just assume all is well?

I just recently received mine back and it read that my B12 was 1708 .. I'm not really sure what this means or could mean for me. Does Anyone know about this, is it is / has Normally ran 300 -475..occasionally 5oo.
Thanks

I forgot to mention that I normally have low Red blood platelet count. Which if I use any form of pain medication depletes it almost completely. I've had Tests done for my Liver so it's not that. But I have asked about possible VIII as it runs in our family.I have a life long history of anemia .

I think you need to ask your doctor about this. Maybe ask them to redo the test. I see my doctor Monday and I am going in with medical articles that talk about high B12 and what could be causing it. In addition to what might be causing it, I have read that high B12 is functionally low B12 because it means your body is not utilizing and it is also not being eliminated.

My primary care doctor told me to just forget about my B12 levels and when I insisted we do further research, she asked me who i thought she should refer me to. I told her I didn't know so she referred me to a local hematologist who declined the referral. My inclination is to look for another specialist maybe at UCSF medical center. What are others experiences of this kind of situation?

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"

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

How is your lab results after stopping take vitamin B12? Is your B12 normal now? How long take it become normal after stopped B12 vitamin. My daughter took multivitamin all the time. It is 500% DV the one she took. Her B12 Level is also high, and all other blood works are normal. Please let me know how long it takes for it to be back to normal. Thanks

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

Because I have Lupus, my WBC is chronically low and I also have problems with low RBC's due to either some type of anemia or a blood disease, right now my Hematologist is more concerned that my HGB, HCT, MCH and other indices are the opposite...they're high! In the past 5-6 years, they've very consistently been low! But through all these changes, my B-12 and my B-6 have remained HIGH and keep getting higher!??!