What do I do now? B12 tests 1,000? Stop supplements?
 

Hello. After serious numbness, walking difficulties, l'hermitte's BIG TIME and several neuro MDs, B12 was tested (as an AFTER THOUGHT) on 1/30 and came back '68'. What a shock! I had one B12 shot and started on 1000 cyan B12 daily but switched to methyl 1000 after info gained browsing here. Started taking 2000 for a couple of weeks before my test March 12. Blood level came back just over 1000. Some of my symptoms are not as severe but I'm definitely not out of the woods. Since I am between doctors (due to lack of proper care and information from them) I have no idea what to do now. NEED HELP PLEASE. :confused: Do I continue taking B12-methyl-1000's even tho level is 'high' at 1078?? No idea why this happened but looking back, B12 deficiency must have been going for a looooooong time, maybe decades. The doctor who prescribed the test would only test the B12 level and said, "you don't need to know why" after my pleas for many other tests to find out why. That's why I am firing him and between doctors. Have an appt end of April with a new DO but I'm lost right now. All suggestions welcomed and appreciated.

Your level is good. It is only "high" when compared to the range for B12 which is determined statistically on normal people.
In the US the lower end is really low, and so as a useful tool
our ranges are out of whack.

You lived for quite a while with a very very low level. It will take time to recover. Your levels show you are absorbing the
B12 as you are taking it, ie. that you are taking it correctly.

You also want to make sure your Vit D levels are checked.
This is another nutrient that seems to become very low in Americans.

Thank you mrsD. Am I dense? My question is this: do I continue to take B12 1000's now that test results show a level of about 1050? If so, how much?

PS I wrote you a personal note thanking you for all your encouragement and excellent advise to me ... and to all. I don't know if you rec'd it because I wasn't sure how to do it. Brain fog. Anyway, you're TOPS. Nancy

Okay, I understand now.

You continue to take the B12, like you are now...forever.
Whatever made you so low, is still there, the circumstance.

B12 is not harmful, and itself is not the issue. Now you start to repair, and store in the liver which obviously was gone for you to have such a low test result.

And remember, what shows in the serum blood test, does not tell us anything about what is happening in the tissues. It is just what is floating around on its way to someplace in the body.

As regards to a "message"? I have no PM or visitor message from you in those places.
I did get a "friendship" request and authorized it and I do appear on your friendship
list. There is a post on the thread where you asked about brain size etc, where you
posted a thank you...
http://neurotalk.psychcentral.com/sh...919#post478919
is this what you were thinking?

Yes, mrsD, you answered everything. Thanks again & again. Nancy

A family member was off all supplements for about 10 days before testing levels. They found very high B12 & folate . We were told it meant a metabolic problem causing kidneys to have to hang on to all the B12 & folate they could because the CELLS still needed more.

DNA tests showed genetic variants hindering utilizaion of B12 and Folate (which would also mess up the whole mitochondrial energy production cycle using glycine etc).

The net of it is that in spite of the high blood levels, the family member is on Metanx (methylated B12, methylated folate and p-5-p).

That sounds like one the 25 polymorphism DNA errors in the methylation metabolic sequence. This is called MTHFR mutation

The Metanx has all 3 vitamins activated so the body does not have to do it.
This is one reason I recommend methylcobalamin rather than cyano form.

Hi and many thanks for the info altho' I don't know about my folate level and have no idea what the third ?p-5-p? If you would be kind enough to tell me a bit more I would be very grateful. As stated I 'fired' my doc because he wouldn't approve of any tests other than B12. Do you suppose it has anything to do with budget considerations. Frazzles me .... grrrrrr...
Anyway would like to hear more from you if possible & thanks again for what you offered.

p5p is activated B6-- the pyridoxine in vitamins is not the active form the body uses.

I have a thread about it here:
http://neurotalk.psychcentral.com/thread30724.html

Hello Mrs.D!
Finally, after 9 months of severe symptoms and mis-diagnoses? I 'officially' been told that I meet all the criteria for pernicious anemia. Had multiple tests, 24 hr urine; 9 tubes of blood. Anyway, now I know what I have. Former B12 level of 68 is now over 1000 and doc just said, "keep on doing what you are doing"... 2000 mg jarrow methyl b12 and a typical multiple vitamin/mineral combo. My questions is that the literature I've been reading today about p.a. seems to be saying that I need to be careful not to take too much folate as it negates the b12. Any truth in that? I had planned on ordering the jarrow b right but it has a lot of folate. Can you make any sense of our my muddled mind and query? As always, I appreciate your knowledge and thoughtfulness so very much. Nancy