[mrsD]

If you have that MTHFR mutation which is very common, the cyano does not work. Those with this mutation cannot activate the synthetic cyano form, properly.

Ask for hydroxcobalamin injection instead. That would be better.
Methylcobalamin is available in injection, but only at compounding pharmacies still, I believe.

If you do have that MTHFR mutation, you will need methylfolate too (folic acid which is inactive also needed to be converted). So it would be a good idea to get that done.

[4aulkner]

Originally Posted by Pipbub

I've been trying to dig through this thread and the forums, so pardon me if this has been addressed and I missed it!

I'm curious about how difficult it is to raise B12 levels through diet rather than supplementation. My B12 levels are sitting around 310 right now. I don't have dairy or bread/cereal, so I'm not really getting much of the fortified stuff. Is it feasible to get levels up to better levels through dietary means rather than supplementation? Duck eggs, fish, and the like. I tend to have unpleasant reactions to medications (and am allergic to nickel which to my understanding nickel and cobalt allergies often go together?), so I've been a bit nervous about trying B12 supplements though I do not know if I would even absorb enough from what I'd be eating. I've been doing a mostly paleo diet for a bit over a year so unfortunately while they suspect possible celiac or gluten issues, the blood test turned up negative so I am waiting to see a gastroenterologist.

My doctor made the mistake of doing a blood test after I'd been gluten free for a while (and if you're paleo, I suspect you are GF?). The reason it could have been negative is because you have to be eating gluten in order for the anti-bodies to show up in the blood test. If you're not eating gluten regularly just before the test, it will be negative. Too often the idea of celiac or gluten sensitivity is simply dismissed without numbers to "prove" it. Glad you're seeing a gastro person - course if they do find celiac, the solution will be to go gluten free. As far as raising B12 levels through diet, I'm clueless. I take a liquid and it says it hypoallergenic but its formulated with methycobalamin. Not sure what that means . . .but hope all the info on here helps!

[julleri]

To help cut costs, I've purchased the less-expensive dosing of methylcobalamin from my preferred brand, at 1000mcg per tablet (sublingual). I've been tested for B12 repeatedly at doctors visits and the levels are always >2000. Is it safe to assume I can now back off of the 5000 mcg dosing since I always get this reading? Would 1000 mcg per day for life presumably work? I'm thinking it should...

I've been supplementing B12 now since 2012 for what it's worth

Thanks!

[mrsD]

Yes, you can back off now if you want. Either use up the 5mg twice a week, or 1000mcg daily.

[ElaineD]

Hello, I took the Jarrow formula, daily, adjusted for my weight for about a year and a half from 2011-2012. I couldn't see any difference. My B 12 level checked at over 1600 on blood tests, so it was clearly showing up in my blood.

My PN is profound (diagnosed in 2009), but the cause could never be found. I'm not diabetic and MRI/CT Scans ruled out brain/spine issues, and a spinal tap also showed no problems.

My Rheumatologist believes it may have been caused by prolonged use of an antibiotic known to cause PN. I started the antibiotic in 2007.

Should I have stayed with the therapy? Should I resume it? My Duke neurologist and rheumatologist seem to know very little about it. And the only research I've looked at from NIH is fairly old now. It seems if this therapy were successful that it would be more discussed in the public press?

But I haven't read this entire thread. It is very long.

Or am I naive? Probably Naive.

Thanks, ElaineD

[mrsD]

It is important to know which antibiotic.

If fluoroquinolones, then magnesium and glutathione support may help. Dr. Cohen has posts on his blog about this: His links are on this thread.

http://neurotalk.psychcentral.com/post661103-2.html

[Marlene]

Does anyone know if packed red cells used for transfusions have any vitamin B12 in them?

[mrsD]

I can't find an answer to this question yet....

B12 is in the body in such minute amounts...one would wonder
what it would be for in those cells (which die in a short time).
B12 is used to make red cells, but......

Iron is in there of course.
Sodium, potassium, chloride, various peptides, proteins

Here is a complex wiki on red cells:
http://en.wikipedia.org/wiki/Red_blood_cell

I was suspecting not, but then found this paper on PubMed:
http://www.ncbi.nlm.nih.gov/pubmed/8352241
So I guess yes, if there is a test for it, then it must be there.

I am getting tired...today, been online since about 5am or so.
This is my last search for today.

[Marlene]

Thanks....I'll check the links out. I did a search but came up with everything but B12.

[Marlene]

This issue came up on another forum for blood disorders. A doc told a patient that since they are getting packed red cell transfusions, they are also getting B12 and there's no need to supplement. No one really believed that this could correct a B12 insufficiency. I'm not sure if the body recycles B12 as efficiently as it does iron once the red cell dies.

Thanks again MrsD.

Hope you made it through yesterdays storms ok.