Vitamin B12 level too high?

[tinglebell]

Hi all. This is my first post on this website, but I have been lurking for a long time. Reading advice and getting frustrated because I couldn't post for some reason. I am being treated for B12 def since Nov '05, sx started in Sept. '05. For a long time my b12 level stayed fairly low, even despite shots and some oral methylcobalamine. Now last month I had it checked again, and 2 doctors called to say that it was too high, over 4,000. I had just taken my injection the night or 2 before, without thinking to wait as I usually do. So, did I hit a vein or what? Any way the dr. wants me to cut down on the shots, even going to just the oral form. The previous highest level was in the 300-400 range, about 4-6 months ago. Any thoughts?

[B12Bob]

My level is usually off the top of the scale if it is checked within a couple of days of a shot.

[tinglebell]

Thank-you for the reply, I was hoping that was the reason, just never heard of one being that high.

[rose]

Much or most (most in your case) of the B12 measured in your blood (if you had taken a shot within a day or two before) will not be stored or used. It will just go out with the urine.

The test only showed what was in your blood at that time, which says nothing about what will be used or stored. It is very unfortunate that the doc doesn't know that.

My take on it is that you need all the B12 you can get.

http://roseannster.googlepages.com/home

rose

[Alex]

My Wife was diagnosed with a B12 deficiency last year, level was 170pg/ml.
She has not had injections and has been taking 2000mcg sublingual methyl
b12 for over 4 months now. Level has now come back at 640pg/ml.

Is this high enough ?

No sign of the symptoms improving yet, numbness/tingling & Fatigue.

Alex

[tinglebell]

That certainly seems a lot better, but one of the experts can advise you. I am a nurse, but never knew a thing about B12 def. except that it could cause anemia. Wow, what a mistake. Initially when I started the injections, within a few weeks I was feeling much improvement, especially with the brain fog. I thought at the time that I would be "cured" in no time at all. Well, that was over a year ago, and I still have most all my symptoms, but not as bad. Hopefully your wife will start improving soon. A lot of this depends on how long the def./symptoms have been present. Have you read Roses' extensive thread on the subject?


Dianne

[rose]

Alex,

That is just ok, not optimal (and that is assuming that she stopped the B12 a few days before the test sample was drawn). I would not be happy with it in any case. I would take a larger dose; she may have been much lower than the original test result showed. Is she taking it alone? If not, it would be a good idea.

Dianne,

I also had a honeymoon period which led me to believe I would be back to normal within weeks or at least a few months. Wrong. Then the hard work began. That seems to be fairly common with people who have been damaged seriously over a long period of time. I'm glad you mentioned this. It is something most people do not realize.

One should think in terms of at least 6 month intervals. Progress can seem to be non-existent (or symptoms even worsen) as repairs are being made. Some of my most dramatic improvements did not come until years had past, while other less longstanding problems improved within weeks or months.

rose

[tinglebell]

Rose, I just want to thank you. Because of your knowledge I was able to diagnose myself. I went to 6 drs. and a p.a. and only when then the last dr. told me that I didn't have a disc problem, (as was originally diagnosed), that it was probably ms or guillian barre syndrome, did I get on the internet and typed in "tingling/legs". It pulled up the Cleveland Clinic forum, if I remember correctly, (brain fog), where I was dumbfounded to see the thread about sx of B12 def. and scd. I knew immediately that was what I had, because I have had 3 bowel resections for crohn's. So my internist had given me a lab sheet at my visit for "labyrinthitis", for my annual physical, (which had been 3.5 yrs.), and of course B12 and folate weren't checked off, so I did, and got to the lab the following morning. I popped a bunch of B12 pills until the results came back (136) and got a shot. By this time I was barely able to walk, and couldn't bend, think straight, had palpatations and I had numbness/tingling from toes to my head. Anyway, the rest is hx., and was referred to this site by your threads. You should try to get on Oprah or one of the news shows and spread the word. Anyway, tx again.

Dianne

[rose]

Dianne,

Thank you. I'm so glad you made it here! :)

rose

[jcc]

Hi Diane!

I had no idea that a B12 deficiency could cause all these symptoms either, until I met Rose :). I had also seen about 8 doctors over 5 years before a neurologist finally did think to test my B12 level. I got a phone call from a nurse saying I should take 1000mcg of oral B12, but they never explained the huge significance of this finding. I thought it was a trivial finding... or a cheap attempt at a placebo fix :o. I didn't trust doctors much by then, because most had minimized my symptoms and treated me like I was a whiner.

Anyway, I'm sure glad I found Rose and learned that the B12 deficiency was likely responsible for all of my long list of symptoms (http://jccglutenfree.googlepages.com/b12deficiencysymptoms)... and that was over six years ago now! I'm doing great now, but I do notice symptoms return if I miss my B12 for even a short length of time.

Cara

[rose]

One of my favorite success stories. :D

And it sounds like our Cara doesn't store well at all. It's important for all of you to remember that most people will not experience any sign of returning deficiency for months to years after discontining B12 (if they have filled their stores well prior to quitting).

This is because normally people store a great deal of B12 (relative to daily use), because people have varying degrees of malabsorption (some absorbing none, and some absorbing enough to tread water for many years), and some even use it more efficiently than others.

This is a crucial issue to understand because most people operate on a long-range timeline regarding B12. Because of this, people can take it and replenish their stores, stop it, and then when the body makes progress days or even many weeks later (using the stored B12) assume that they hadn't needed it. Ack!

And the fact that the repair process often is bumpy, and some symptoms even worsen as the body repairs that function, people are even more likely to be misled as to whether it has been helping and is needed.

Incredibly complex. Thank goodness it is safe!

rose