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Elevated B6 without supplementation; low B12; early PN

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Old 02-06-2017, 10:15 AM   #11
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I can tell you that I definitely have a metabolic problem that caused or added to my neurological problems. I have dysautonomia, sfn, and joint hypermobility syndrome. Was fine and strong despite the mild underlying (newly diagnosed connective tissue weirdness -that I always thought was how every one was...but that's another story), exercised every day, ate like a cave girl and then was slammed with full body polyneuropathy due to some kind of exposure.

Anyway, my b6 was elevated which absolutely causes neuropathy according to even mainstream conventional science.
Also my copper and iron are deficient which are detrimental to the nervous system. Minerals are like the metal elements that conduct our electricity and the balance is so important, and so hard to get right when malabsorption is an issue.

Interestingly, I do better with out magnesium supplementation. It is a crazy puzzle to put all of this together. Its good to post questions for help and also to post what you have found on your journey so we can all help each other out.
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Old 02-06-2017, 10:55 AM   #12
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Please read this article:

The Cause of Vitamin B6 Toxicity is Not What You Think

The fact of the matter is that very few people have been found to have a real toxicity to B6. It is a very small # and based on huge huge doses.

From 2008:
Elevated B6 levels and peripheral neuropathies. - PubMed - NCBI

2005:
[How much vitamin B6 is toxic?]. - PubMed - NCBI

Research into this topic is still sketchy however.
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Old 02-06-2017, 01:19 PM   #13
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Quote:
Originally Posted by mrsD View Post
Please read this article:

The Cause of Vitamin B6 Toxicity is Not What You Think

The fact of the matter is that very few people have been found to have a real toxicity to B6. It is a very small # and based on huge huge doses.

From 2008:
Elevated B6 levels and peripheral neuropathies. - PubMed - NCBI

2005:
[How much vitamin B6 is toxic?]. - PubMed - NCBI

Research into this topic is still sketchy however.
Good stuff Mrs. B
Also, in my research I have found that certain good and bad bacterias are capable of producing the B vitamins. So it makes sense if the gut bacteria is out of balance some pretty bad things can happen with production of bacteria, feeding the bacteria, and malabsorptive causes due to the disturbance of this delicate balance by various causes. Also below is an example of h pylori which is a common bacteria and its relationship to b6. There is a lot of information on this but not enough. I've still been having more luck with probiotics than any other supplements.

The Normal Bacterial Flora of Humans



Bacterial pathogens require vitamin B6 biosynthesis enzymes for virulence: Study
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Old 02-06-2017, 01:24 PM   #14
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Originally Posted by Kittygiggles View Post
Absolutely! I am sorry for that error. I did mean low, especially as I read from here that 400 is the new low, and elsewhere I learned that in Japan they can consider 500 to be the cut-off for a low plasma concentration. Is there any way I would be permitted to edit my post? If not, would a moderator be allowed to just change it from 'Elevated' to 'Low'?

In light of my blood test, would you recommend continuing to supplement B12? I take B12 on an empty stomach, along with my medication, and vitamin D. Prior to the daily B12 supplementation I used to wait about an hour before eating; should I extend that waiting period? I've no problem doing so.

I am searching for a new doctor as my current one is reluctant to issue blood tests or for some reason 'compromises' and allows one or two things but not others, which is aggravating. I discuss my decisions with my dietician, who in turn does consult with doctors she knows; I'm in the process of getting their details but communication with her is slow.

As for zinc, I am happy to add this to my test. I started taking selenium, zinc, and iodine as I was advised they were useful for thyroid disorders. Having looked at my diet I can see lentils contain a great deal of zinc, and at the volume I eat them, I think I will stop taking it. My symptoms seemed more noticeable since taking zinc (about a few months ago).

Thank you for the advice about anxiety and breathing. I practice appropriate breathing when I am anxious and it works wonders. Still, I can forget sometimes. In addition, I suspect fluoxetine to be a culprit in this but also, I know very well the physical changes that happen with me when I am anxious, including tingling. However, this suspected PN seems constant.

I am so grateful to you for responding. Looking back at my post I can see it was a wall of text and I thought that perhaps it would put people off. Thank you again.
Be extremely careful taking any minerals with out getting all of your levels tested. If you are consuming plenty of zinc and taking zinc supplements you can drive your copper down. Better to get copper and ceruloplasm, iron, and ferritin, mag, cal, zinc, and iodine checked before messing around.
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Old 02-08-2017, 04:21 AM   #15
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@bluesfan

Thank you for your encouragement and story.
Zinc: I had no real reason to take this as my diet contains a lot; I just did it due to advice about hypothyroidism. I thought I was cautious about taking supplements having only taken them when I actually identified a reason (rather than taking them ‘just in case’). However, since being here and learning more from my blood tests, supplements can have serious consequences sometimes so I will only take them based on evidence (i.e. blood tests and research).
Selenium: I stopped taking that too actually, since stopping the zinc. There’s quite a bit in my diet!

@mrsD

Thank you again for your input. The first link was one I had read before and made me ponder the possibility of having a gene mutation. If I can get it tested I will as soon as possible.
The second link I had not found despite scouring scientific journals for it! I have some great scientific literature about vitamin B6 and they all draw a similar conclusion: it’s undocumented (i.e. impossible at the moment) to develop B6 toxicity from food alone, which is my only source of B6. Although my diet is rich in B6 I discount it as a cause unless I find evidence to the contrary, which I suspect may not happen for some time. As you said, research on B6 tends to focus on deficiency rather than the few cases of megavitaminosis.

@Healthgirl

Thank you for the note about bacteria. I’ve no digestion problems but it could be an avenue to investigate if over the next few months I don’t get to the bottom of this. I now agree completely about being cautious with supplements! As for getting blood tests for what you suggested: unlikely to happen anytime soon. My current doctor (as mentioned previously) is really stubborn about blood tests and quite hard to predict. I am in the process of finding an easier avenue to get them done.

My hypothesis for good blood testing is just to do a whole bunch in one go. Then do a follow up a few months later, then I guess, annually, dismissing the minerals/vitamins that are at good levels. The way I get them now just seems like a waste of money and done almost at random (not my choice!)

Update

What I’ve done and am doing: Stopped zinc and selenium supplementation. Increased methylcobalamin consumption to 5microg per day on an empty stomach.

What I feel: Symptoms are still there but they are not worse. If anything I feel better which could be noticing the symptoms less often, feeling less anxious about it all since getting help here (thank you all again by the way), or the changes above. I am acutely aware of the power of hypervigilance on the body, so I always try to note symptoms when I feel my best and without too much thought.

My plan: Keep taking methylcobalamin at 5microg per day for about 1 month, stopping 3 days prior to a blood test (if I can get one), then recommence at 1microg per day until the results come out – then go from there. Additionally, I will try to test all the substances recommended in this thread, including a genetic test but that is at my doctor’s discretion (whom I hope to replace soon!)

Questions
I seem to have no adverse effects from methylcobalamin but I have one complaint: the sugar. I consume no refined sugar (not even honey) and I don’t like having sublingual pills that are full of sugar hanging around my mouth every morning! Does anyone know a good methylcobalamin pill without sugar? Taste is irrelevant, I don’t care about foul tasting medication! I noted your hypothesis mrsD about the molecule being too large to be absorbed via the tissue under the tongue and I am inclined to agree. This morning I just dissolved the pills in water then drank it, followed by more water to hopefully wash as much of the sugar away as possible.

This place has helped me feel so much better already and I appreciate the interest and sharing of knowledge. Sorry if I am over the top about it but I am sincerely grateful!
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Old 02-08-2017, 08:08 AM   #16
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There shouldn't be sugar in your methylB12. This one which was at one time the only available form in US 10 yrs ago and by online purchase, does not have sugar in it:

Jarrow Formulas : Methyl B-12

We use now a locally available generic form from Costco, which also does not have sugar. Since historically B12 was sublingual before research showed it to work orally (swallow) there at one time may
have had sugar in them. But today they use artificial sweeteners in the tablets in case people still want to use them under the tongue.
Xylitol and mannitol are examples of sugar substitutes, and you might find sucralose (Splenda) in some brands.

One thing that seems to be lacking in studies on B6 elevations, is the fact that inactive B6 (pyridoxine) has to be activated to P5P the active form in order to work in the tissues. B2 (riboflavin) is a cofactor in the enzyme called pyridoxal kinase that does this job.

There also are drugs that inhibit pyridoxal kinase binding:

The conclusion of this article lists them at the end:
http://scholarscompass.vcu.edu/cgi/v...07&context=etd

Caffeine! That would be an issue for many people I expect.
So elevated B6 in serum could point to inefficient conversion of pyridoxine to P5P. This is one reason that P5P is more common today as a supplement. In fact one RX company was planning a drug containing only P5P in it. And there is another called Metanx that has P5P with methylcobalamin and methylfolate in it which is also RX in the US.
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Old 03-02-2017, 09:02 PM   #17
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Hi everyone,

My update after a long break is that there is no change in the tingling in my hands and feet, perhaps slightly for the better. I have had to change up supplements due to one or maybe two causing indigestion. As for the B6 mystery, I will likely have a genetic test sometime in the future but for now my priority is SSRI withdrawal.

Thank you Mrs D for your advice regarding the latter but there is no drug that can assist with SSRI withdrawal sadly. Serotogenic agents are extremely dangerous to play around with during withdrawal and adding a new one will lead to disaster. Doctors at present have no solution for SSRI withdrawal syndrome and most prescribe something, which only makes matters worse. The only solution is tapering and time. Hopefully more research into this will be done.

I'll update again here if I discover something conclusive about my supplements, B6, and the tingling. For now, as symptoms don't seem to be getting worse, I am concluding that fluoxetine is the culprit.

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Old 03-03-2017, 04:22 PM   #18
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@MrsD
Thank you for your advice about the B12. I had a look at the bottle and they do include dextrose, as well as sucralose. Strange that they include sugar and a sweetener. I suspect they may have caused some indigestion too so I will give Jarrow's pills a go.
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Old 03-04-2017, 09:50 AM   #19
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The dextrose may be there as a solubilizing agent... to help the sublingual disperse quickly. I would expect it to be a minute amount and not calorically important. Sucralose is more potent than dextrose as a sweetener.
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Old 03-19-2017, 08:20 AM   #20
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Update
What I’ve done and am doing: I stopped B12 for a while until about two weeks ago, when I started with Jarrow methylcobalamin. The previous one seemed to give me indigestion but Jarrow is working well. I reintroduced magnesium and calcium daily but I realise now having read around on the PN forum that a bad ratio of calcium to magnesium may make PN and circulation worse. I have changed my supplements to separate magnesium and calcium and I will increase magnesium as I need that to assist in many aspects of my health. I also tried fish oil (omega 3) for a week and I noticed my PN getting worse, so I slowed that down to once a week.

What I feel: PN is back with hot hands (sometimes feet), cold hands (which could be due to poor circulation but I exercise and eat well but I could always exercise more), and chilblains on my fingers during cold weather. In addition, I've noticed a clubbing of my middle fingers' nails, and on one index finger. I've never had heart problems and my breathing seems okay (but for being affected by anxiety when I am not careful).

I've had what some would call cyanosis in my hands and feet for most of my adult life when I am cold and I think when I am anxious (which makes sense). Although I would say it looks more like lots of various colours with red and purple being predominant, the latter appearing more around any wounds or scars I may have. The worsening PN may be due to increased stress and anxiety at the moment but I guess I am here to rule out other causes, which seem more likely or at least a significant part of it.

I think I noticed the clubbing in the last month or so but it became more noticeable in the last few weeks when the new nail that's growing seems much 'lower' or flatter than the older, raised one. The clubbing is subtle but for my right hand's middle finger, which has a large bump. There are no ridges or indentations (like Beau's lines), and something I noticed in this newer nail near the root, which is flatter, is that I think I see a moon appearing.

I read about moons/crescents disappearing in people with B12 deficiency, something I have confirmed with a blood test previously. I am hopeful that this change in the nail could be a healthy root coming out. Since taking B12 I have felt better in many subtle ways but perhaps it's all placebo or self-limiting symptoms. None of my nails have moons, but for the right middle finger, which I can't verify yet but it really does look white at the root with about a 1mm depth.


My plan: I am calling a doctor tomorrow who is likely to help me get all the blood tests I might need to get to the bottom of my B6, PN, and circulation problems. I know that my non-autoimmune hypothyroidism and fluoxetine may be to blame for poor circulation, PN, chilblains, and perceived cyanosis in the cold. However, I recall getting cyanosis and chilblains as a young adult, long before I took fluoxetine or was diagnosed with non-autoimmune hypothyroidism (which I doubt I had that long ago).

I will also enquire about getting a gene test for the mutation relating to B6 and B12. I will keep taking methylcobalamin at 5microg per day on an empty stomach until 3 days prior to my blood test, which could be a couple of weeks away. I will then recommence at 1microg per day until the results come out – then go from there.

Questions
Does anyone have any experience with a bump on their fingernails in relation to B12?
Has anyone else found that moons return to their nails or become more prominent with B12 supplementation? I read that the moons disappear last on the thumbs, mine have been gone for some time. I can't recall the last time I had crescents/moons on my nails; it will be at least several years ago if not longer.
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