High Levels of Vitamin B12 and Ferritin: Any pointers?

"Shooting stars", I agree with Karrie about getting a Ferritin blood test. When I unknowingly had low ferritin, I was losing loads of hair and some of my fingernails developed verticle ridges --- plus I had terrible brain fog.
My MD thought everything was fine despite my complaints. However, after suffering for months, I returned for an annual routine blood test and when my primary care doc saw that some of my blood levels (e.g, hematocrit, hemoglobin and iron) were below normal, he finally ordered a ferritin test. Fortunately he referred me to a hematologist who prescribed iron supplements and tested me every couple of weeks, until all my levels returned to normal and around that time, the brain fog left and my hair stopped falling out.

Hi Miche, thanks for your response.. I think Karrie was actually replying to someone else's post!

My dermatologist had actually tested my Ferritin levels at the same time as B12 - Ferritin level was normal. So the elevated B12 remains a worrying mystery!

My B12 level is back in the normal range after an excursion to >1504. I stopped taking a supplement then although my PCP doctor wanted me to continue taking one 3 or 4 times a week. I wonder if my hematologist will suggest taking once a week to not slip into the low rangr again

Hello, I havent checked in for some time as I have been trying to figure out why my B12 is continuing to climb. At last check it had increased by < 2000. It is now over 22,000.
No one seems to have any indication as to why or where to look next. I'm not sure if this is related but my eye sight has decreased significantly in the last year and my energy level is lower than ever. Any thoughts?

Hi @rubyjag3 Thank you for the update! Wow, your Serum B-12 numbers have sure escalated since last September when they were 6,000! Now they’re over 22,000. Since I read your post earlier this afternoon I’ve been scouring Google Scholar for articles relating to very high levels and potential causes.
From everything I’m reading this is exceptionally high and doctors should be focused on tracking down the reason. Telling you that it is of no concern is not an answer. Something is causing this to happen.

From my understanding, sometimes there can be a genetic defect which can cause the body to have high levels of homocysteine and low levels of folate where your body isn’t able to process Vit B 12, actually creating a Vit B 12 deficiency in the body. Have you had a MTHFR gene test run?
In this article on the mutation it mentions glaucoma as a potential side effect.
~What is an MTHFR mutation?
https://www.medicalnewstoday.com/articles/326181
Do you remember your doctor ever running a test to check for Folate and Homocysteine levels in your blood?
Have you been told you’re anemic?
Has your thyroid function been tested?

Because you have your blood work check routinely, I’m sure this would already have been discussed, but have you been told you have a myeloproliferative blood disorder meaning the the bone marrow isn’t able to produce normal blood cells? That would be indicated by either too many or too few of any one particular blood product such as Red Blood Cells, White blood cells or platelets. The shape and size of your red blood cells would also be in the blood report.

Here’s one of the articles I was talking about where there have been studies of patients who have myeloproliferative disorders with High Vit B 12 actually masking their low vitamin level.
~~~
~Does an Elevated Serum Vitamin B12 Level Mask Actual Vitamin B12 Deficiency in Myeloproliferative Disorders?
https://www.sciencedirect.com/science/article/abs/pii/S2152265012000092
~~~~

Again, I’m not a doctor and in no way trying to diagnose your condition. But I really hope you can find a doctor who takes this seriously and get to the bottom of your symptoms…some of which are on the list of a vitamin B-12 deficiency. Have you seen a hematologist yet?

Hello. I am curious if you were able to find a doctor to help you evaluate your low transcobalamin? I privately ordered the test and mine is also low. From reading the book Could It Be B12? And medical journals I've read, it appears if a person has neurological symptoms that they may need to have b12 injections every day or every other day.

My recent B12 lab, that has a normal range of 211 - 911 PG/ML, came back as >2,000PG/ML.

Should this be followed up, and with what type of doctor, a Hematologist?

The multi-vitamin that I take has 100 mcg of B12 (cyanocobalamin).

Thanks.

I went from a low end of normal B-12 level to >1500 by taking a 500 mcg supplement daily. Stopping that for several months, the level dropped to 600. I am now taking the supplement once a week and the level seems to be stable.

I initially was given a 1000 mcg injection but that made me hyper. I could only tolerate the 500 mcg gummie. But too much of that was causing symptoms that could have been associated with colon cancer. Luckily the high level was discovered about the same time as the symptoms appeared.

Thanks for your information. I just sent my question to a hematologist that treated me for anemia in the past.

As with anything, a high level of discernment is not only a benefit but an absolute necessity in life. That said, the medical school teaching of "When you hear hoof beats think horses, not zebras" is, in my opinion, single-handedly the absolute worst teach of all time (aside from the presumption that female patients are fakers, exaggerators, malingerers and simply crazy). While true that for a large number of people the most common explanation is likely the answer much of the time, teaching doctors and patients to only think of issues that are likely to show up in family practice medicine is dangerous and simply wrong. We pay doctors to leverage their entire medical training and experience and to think objectively and clearly and to progressively rule out, based on symptoms and facts, that which does not apply to our situation. We do not pay them to first rule out "X%" of medical issues/conditions and then apply their training and experience to what remains. Please stop perpetuating such a dangerous mental approach to medicine.