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Old 12-06-2015, 11:49 AM #21
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Well, it seems I shouldn't take a B complex after all, since Friday I discovered that my B6 levels are above normal, 170, whereas the max here is 100 (not the US). I haven't even taken the B complex I used to take with 50 mg of B6 for a couple of months. I wonder...

But when my neuropathy started, I certainly wasn't on any vitamins or supplements.

I guess I'll have to stick with the B12 and Mfolate for now. And the Benfo. I think that's all I need from the Bs, unless I'm missing something. But I don't know of any B complex that have it all except B6.
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Old 12-06-2015, 12:17 PM #22
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I don't think the B6 blood testing is very reliable.

The sample can be mishandled and the cells burst releasing it into the serum giving a false elevation. (this happens with potassium commonly).

Or since the test is not done alot, the calibration standard may be degraded from age, and the machine goes lower for a norm, leading to normal levels testing out high.

There is a study for example on autistic children that found elevated B6 levels, in testing. These children did not take vitamins.

Here is our B6 thread:
http://neurotalk.psychcentral.com/thread30724.html

It is really rare for B6 toxicities to occur.

http://lpi.oregonstate.edu/mic/vitamins/vitamin-B6
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Old 12-06-2015, 08:41 PM #23
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Thanks, MrsD. I'm reading through the thread and appreciate the advice. If I do take B6/P5P, does that need to be taken on an empty stomach too, like the folate and B12? I like that I can get it in that B complex that has 10 mg of it, a low dose, but I'd like to take the B vitamin with lunch not on an empty stomach - I will take B12 and folate separately in the morning. Just wondering if there's the same issue with B6. Thanks.


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Originally Posted by mrsD View Post
I don't think the B6 blood testing is very reliable.

The sample can be mishandled and the cells burst releasing it into the serum giving a false elevation. (this happens with potassium commonly).

Or since the test is not done alot, the calibration standard may be degraded from age, and the machine goes lower for a norm, leading to normal levels testing out high.

There is a study for example on autistic children that found elevated B6 levels, in testing. These children did not take vitamins.

Here is our B6 thread:
http://neurotalk.psychcentral.com/thread30724.html

It is really rare for B6 toxicities to occur.

http://lpi.oregonstate.edu/mic/vitamins/vitamin-B6
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Old 12-07-2015, 12:18 PM #24
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This is what you can do:

Not take any B6 at all for 3 months and get retested. Just take the folate and B12. Folate has no food restrictions like B12 has, so you can be more flexible with it.

Stop all vitamins a week before any testing as a rule.

B6 is really only a problem for PN if it gets really low. When deficient, that is when PN shows up. To get too much, you really have to have much higher amounts consumed daily, than what is in a typical B-complex.
This testing issue is very common on the net... you can Google it and find all sorts of people showing out of range test results.
B6 is stored in muscle for a short time, and not eliminated quickly. So it does hang around for several days.

So you can just forget about the B6 for a while, since it concerns you. See what happens with the MethylB12 and methylfolate.

B6 is not methylated...it is activated by adding a phosphate to pyridoxine. So the MTHFR is not an issue with its metabolism/activation.
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Old 12-07-2015, 04:44 PM #25
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Quote:
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Thanks, Ragtop. Much appreciated. So perhaps I should get this checked out. I'll check out Promethease. I would have to go through 23andme and get all the raw data first, right? So that would give me all the information I'm not too keen on knowing, correct? I would then get even more info not just methylation info from Promethease? I suppose I'm just confused about the process.

Now, could I just supplement with sufficient B6, folate and B12? Or does it help to get even more precise in respect of dosage based on such info?.
Sorry, I missed your response, and haven't been around much the past several days.

You are basically correct. This is what I did:

1. Got the 23andme test (around $100) - that provides raw data on more or less everything, but very little in the way of analysis.

2. I used promethease to analyze my 23andme results - I believe that was $10

3. Promethease identified some MTHFR issues, so I got the Genetic Genie Methylation Profile (free). That showed the methylation issues pretty clearly in a color coded form (green=normal, yellow=heterozygous, red=homozygous)

They you can do some Google searches to find out more info about what it all means and how to treat it. I had some concerns about privacy, but those sites seam to be on the up-and-up. I haven't been bombarded with e-mails, no false credit card charges, etc....

Or, as you indicated - you can just try supplementing with B6, B12, and methylfolate and see what happens. Those are the main supplements to deal with methylation issues. One thing that I did tweak as a result of having the A1298C mutation is the type(s) of vitamin B-12. While most people here recommend the methyl form - some sites recommend using all 3 of the active forms if you have the A1298C mutation. I take a multi-vatamin that has some of the hyroxo form, and alternate between the methyl form and the adenosyl form on a daily basis.

I'm not necessarily recommending any of this to anyone else - but it has seemed to help me somewhat in at least stabilizing my condition. On the other hand, the nature of this illness is so unpredictable there's no way to know for sure what causes improvements or progression.
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Old 12-07-2015, 08:04 PM #26
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MrsD, thank you as always for your ever helpful information and advice.

In three months I'll be getting retested for D, so I'll ask to be retested for B6 too.

In the meantime, I have ordered the B complex, Folate 400 and B12 1500, and will decide what to take when it all arrives. The B6 in the complex is only 10 mg, which is quite low, so I'm not too worried about that. I know the B6 didn't cause my neuropathy, since it started months before I touched a single vitamin.

I was under the impression that Folate needed to be taken on an empty stomach too, but apparently not, like the B6. So only B12 in the morning on an empty stomach.




Quote:
Originally Posted by mrsD View Post
This is what you can do:

Not take any B6 at all for 3 months and get retested. Just take the folate and B12. Folate has no food restrictions like B12 has, so you can be more flexible with it.

Stop all vitamins a week before any testing as a rule.

B6 is really only a problem for PN if it gets really low. When deficient, that is when PN shows up. To get too much, you really have to have much higher amounts consumed daily, than what is in a typical B-complex.
This testing issue is very common on the net... you can Google it and find all sorts of people showing out of range test results.
B6 is stored in muscle for a short time, and not eliminated quickly. So it does hang around for several days.

So you can just forget about the B6 for a while, since it concerns you. See what happens with the MethylB12 and methylfolate.

B6 is not methylated...it is activated by adding a phosphate to pyridoxine. So the MTHFR is not an issue with its metabolism/activation.
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Old 12-07-2015, 08:27 PM #27
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Thank you so much, Ragtop. I appreciate this information and the step by step. I'm going to consider this. Honestly, I'm reluctant to know so much information. I'm not sure how I'll deal with it. I'll have to think about it.

I'm glad it worked for you. I may try supplementing first and then see what happens. Regardless, I'll keep an eye out for all this now that I know thanks to you and MrsD.

Which B12 do you take? Which brand I mean?

I hope things are going well with you - I can't recall what your situation is like exactly, but wishing you the best.


Quote:
Originally Posted by Ragtop262 View Post
Sorry, I missed your response, and haven't been around much the past several days.

You are basically correct. This is what I did:

1. Got the 23andme test (around $100) - that provides raw data on more or less everything, but very little in the way of analysis.

2. I used promethease to analyze my 23andme results - I believe that was $10

3. Promethease identified some MTHFR issues, so I got the Genetic Genie Methylation Profile (free). That showed the methylation issues pretty clearly in a color coded form (green=normal, yellow=heterozygous, red=homozygous)

They you can do some Google searches to find out more info about what it all means and how to treat it. I had some concerns about privacy, but those sites seam to be on the up-and-up. I haven't been bombarded with e-mails, no false credit card charges, etc....

Or, as you indicated - you can just try supplementing with B6, B12, and methylfolate and see what happens. Those are the main supplements to deal with methylation issues. One thing that I did tweak as a result of having the A1298C mutation is the type(s) of vitamin B-12. While most people here recommend the methyl form - some sites recommend using all 3 of the active forms if you have the A1298C mutation. I take a multi-vatamin that has some of the hyroxo form, and alternate between the methyl form and the adenosyl form on a daily basis.

I'm not necessarily recommending any of this to anyone else - but it has seemed to help me somewhat in at least stabilizing my condition. On the other hand, the nature of this illness is so unpredictable there's no way to know for sure what causes improvements or progression.
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Old 12-17-2015, 08:04 AM #28
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My doctor had me tested for the MTHFR gene and my insurance covered all but $10 of it. I had one mutation.
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Old 12-21-2015, 09:09 PM #29
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FYI, MrsD, I've finally started taking B12 at 1500 mcg first thing in the morning, and the first two days have gone just fine. No reactions like the D3, which I still have to reintroduce in another form/brand next week. I started low, as I do with all things, but perhaps I should up it to 3000 mcg. Not sure how much 1500 will do to improve things, but it seems to match with me. I think I tested as 515.
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