NeuroTalk Support Groups - Question about pins and needles

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Since no one has yet mentioned it...blood levels of B-12 by themselves are not accurate. One of the long time memebers here, Rose, has a wonderful site that will give you good basic information.

http://roseannster.googlepages.com/home

Quote:

Originally Posted by shiney sue (Post 132927)

Ok i just wanted to freak Mel out. Because you will see i'm bad i live
in Mo. and it's hot ,i was terriified because my son lives in MN. And i'm nuts.
Really i had just about everthing your talking about,but i have polyneuro
apathys. Which means more than one reason.,as you may have.
I have a feeling you might have thyroid promblem. But if Rose is around
or Shelley is around they will jump in. Wel welcome to our world but don't
worry go from day o day and good Luck,keep coming back. :eek: it
will scare the tar out of you st first. . Sue

why do you say thyroid? I'm curious because that is what *I* think!! Other tests are coming up negative..

Reading quickly over Rose's site..

Ihave a question:

I take a B12 supplement... and my B12 was fine in blood tests..

so, I should ask for this additional test? Please advise soon,I am seeing PCP on Tuesday.. Thanks!!!

And if i didn't say wecome i sorry, today is goffey Sunday and the one's
you need the most will be back tomomorow. Please if it at all posi. be
here as well it's something you said about your mouth. But Sue has
had to rest all day and must be back at Dr. who will yell tommomrow. When
she stops yelling let me see what i can find out. Don't worry you Dr. will
first day senting up tests. See you on Monday Sue

Hi.

The b-12 supplement you are taking, (believe me on this), is not Methyl B-12 which is what we all take. We take megadoses (and in my case, it worked terrifically).

Now the numbers (that the experts say is normal), IS NOT NORMAL FOR PEOPLE WITH PN.

People with PN should have their numbers in the 4 digit range. Believe it or not, this is true.

I go to iherb.com and I buy the 5000 mcg of the Methylcobalimin.

The regular b-12 in the bottles is cyanocobalimin (which your body takes in, then converts it to methyl (which is what we need), only we don't get enough.

So what exactly is your b-12 level?

Melody

it's 566, Mel.. and my folate was 16.3

Thanks..

So... this is way low for a PN sufferer?:eek:

also.. which form is best.. sublingual.. lozengers?

I hope Rose chimes in, but her site is informative enough.
If you take B-12 as a part of a B complex or multi-vit- it is CYANOcobalamin.
METHYLcobalamin is the oral sub-lingual type.
If you are taking a B-12 supplement alone, your B-12 test results will be skewed. Read Rose's suggestions on what to do prior to blood work tests.
My levels were (at first) in the 450 range and deemed 'normal' by my idiot PCP at the time.
After taking methyl- the labs flagged me, and my present PCP had to make notation that I take supplement for B12.
My range now is in the 1200-1400 levels.
Be wary of any doc that says 'normal' (even 'abnormal') - get the results and know your numbers. Then compare them and use the Liza Jane charts
to track differences over time, and succeeding testing.
Bob B

Wow.

I am appreciative of all this info..

but.. why don't PCP's know this stuff?????? :rolleyes:

Off to check out the charts.. and read completely Rose's site..

Quote:

Originally Posted by nide44 (Post 133125)

Ummm...both my sublingual and complex are Cyanocobalamin. What does this mean? That I should take more? Or try to find the other, Methylcobalamin? And where would I find that? I've not seen it on the shelf at any of the stores I've checked out for vitamins.