MrsD: I just returned from my internist with a B-12 level at 379 pg/mL. I read your reply to Mark’s (Panorama) thread “IVIG Update” on 12-6-14 regarding his B-12 level of 429 as being too low with 400 (550 for Japan) being the new low. My results say that I need to be greater than 180. I can Google with the best of them and came up with ranges of 200-900; 170-250; 239-931. Can you please tell me your source for the “new acceptable low is now 400pg/ml. In Japan it is 550”? Based on your reply to Mark, I questioned my internist and he agreed to give me a B-12 shot and I bought B-12 supplements, however it’s not methylcobalamin as you suggest, but cyanocobalamin. Please tell me where you got your information?

Best regards.
Jim

There are several sources now. This one from AAFP is over ten years old now:

http://www.aafp.org/afp/2003/0301/p979.html

Dr. C Snow MD started the US informational updates on B12 with his JAMA paper. This post has the link and quotes from it.

http://neurotalk.psychcentral.com/post698522-70.html

Japan has been a leader in B12 research. This is because in the 1970's a drug there caused enormous damage and death by blocking B12 in the body. It was called Vioform (now called clioquinol)...and lead to blindness and spinal damage, and death by the thousands. So Japan has been a leader and very aggressive in keeping B12 levels higher than our old outdated US range which still has not been changed sadly.

http://chriskresser.com/b12-deficien...s-consequences

You can Google Japan clioquinol damage, or Japan B12 treatments, etc.

What is also important is the type of B12 to use. Now we know that genetically people do not convert cyano synthetic form still commonly used by doctors, to the active methyl form. So with the methylcobalamin oral costing pennies a day, it is really the one to use today. You have to take it on an empty stomach to get adequate absorption however.

This is my B12 thread:
http://neurotalk.psychcentral.com/thread85103.html

There is much information on that thread, and discussion.

If you are one of the 10-30% of people with the MTHFR mutation, the cyano will not work for you (nor will folic acid).
You will need both methylcobalamin and methylfolate for replacing those nutrients.

More here:
http://mthfr.net/

The genetic information is still not being picked up by doctors. But you can request the DNA test and get it from your doctor, or even yourself from the net (no doctor order required).

The sooner you address this, the better for you. Good luck.

If you could send me your doctor's name via PM, I am curious if I know of him/her.... I live in your area. But I have been retired for over 4 yrs now, and losing touch with most doctors.

P.S.... sometimes one reported result in the common CBC testing will show a minor trend to be high normal or out of range...this is the MCV value. It will hint at a possible low B12
trend but most doctors are trained to IGNORE it.

MrsD, thank you for your quick response. I'm still pouring over the information in your links. I had a CBC done a month ago with unusual results and my internist wanted a repeat. My research lead me to include the test for B-12 with no argument. As you mentioned the MCV was out of range on both tests (113 and 115 respectively).

I've got two bottles of the cyano B-12 (thanks to CVS bogo sale). I'll switch when they are empty.

Thanks again,
Jim

If you don't have that pesky MTHFR mutation, cyano should work for you. Without testing for it, it remains a lottery as to whether the B12 will activate, however.

On my thread, in the first post, is a link to a very good medical paper recently appearing on PubMed. It has a chart of how much B12 is absorbed orally.

http://www.ncbi.nlm.nih.gov/pmc/arti...able/T1/#TF1-4

It demonstrates, that from 1000mcg dose only about 13mcg are absorbed. So don't be daunted by high doses. Labels on vitamins give % of RDA and for B12 it gets up to 60,000 or more % and this scares people off. You can take massive doses, as they do in Japan. There is a now a new article on really high B12 use there, actually repairing nerves.

The abstract of the paper is here:
http://neurotalk.psychcentral.com/post1095867-287.html

The Japanese also in the past had an MS treatment with high doses.

I am not suggesting you take what they used in that paper intravenously BTW, that high an amount. But you can take 5000mcg daily to help use up the old cyano type. You must when using orally, take on an empty stomach, because food will bind the micrograms and make them unavailable to be absorbed passively in the intestine (for those with broken intrinsic factor).

Hey, Jim! BTW, of course I remember you.

I'm going to reply here from your comment on another post, regarding shingles.

I had shingles last spring. I had no pain, only an occasional prickly feeling! I'm pretty sure that's due to the fact that I take B12 daily.

B12 is known to help heal peripheral nerves, whether that's after surgery, during Bell's Palsy, or any other time those nerves are affected. I took extra B12 during shingles. I had a couple of sensations in my eye, but I was fortunate that it did not spread there (it was on one side of my face).

I am very sorry that you lost your eyesight on one side. Is that permanent? I wonder if mega doses of B12 would still help heal nerves for you. I read similar studies to the ones that Mrs D. posted years ago. It's really amazing what it can do.

I had my deficiency in 1997-99. As Rose did (former member) and Mrs D has, I've done a great deal of research on B12 (medical libraries, etc.). Rose had posted a book years ago, which I cannot remember the title of, where a woman had done research on the available B12 coming from our food sources. It was really shocking. We aren't even getting it from sources such as beef. I wouldn't doubt if a majority of people had a deficiency or are low on it.

And you should know that only newer doctors are reading this information on B12. The older doctors, especially if they don't keep up on topics, don't know how common a B12 deficiency is, how much better methylcobalamin is, and that it should be taken for the rest of your life!

I hope you're enjoying living in MI. Sounds like there's a good MG group there!


Annie

I had a B12 deficiency and was told I couldn't absorb it. The shots did almost nothing so I started taking the methyl B12. It has made all the difference in the world, my level shot up to over 1000.
When I saw how high it was I slacked off on taking it, I maybe took it a few times a month. When my levels were tested again, I had dropped all the way down to 400 within a year. I'm trying to take it more consistently now, although I have a horrible memory and sometimes forget.

The last time it was tested about two years ago, it was back up to 1000. I'm getting it tested again this week, hopefully my forgetfulness hasn't caused it to drop again.

To MrsD: Thanks for the additional information, I'll up my daily dose and take it before I have my morning coffee. From the links you provided it looks like I should be tested again in 3-4 months.

To Annie: I had Shingles about 8 years ago and wish I knew more about B-12 back then (or paid better attention to your posts in the past). Pain? I'd rather have my thymectomy again without anaesthesia rather than go through Shingles again. I was told that my eyesight may improve some, but I'm not holding my breath, maybe the B-12 suppliments will help. Just stay off the roads while I'm driving! This is the first CBC that came back with more than just the Red count being off due to the Imuran.

Your comment about doctors and B-12 is the opposite in my case. My neuro saw the CBC results and my internist's comments about re-testing and thought the numbers were ok. He looks about 16 years old. My internist (also my mom's) is 4 years older than me and had no problem adding a B-12 to the tests nor me questioning the stated low level. He believes in treating the patient and not necessarily achieving a published number. Go figure!

MI is OK, grew up here and now with family, but between you and me, I prefer TX.

Thanks to all,
Jim