Natural high levels of B12 and B6

Hi @patriciaschulz1950, Welcome to Connect. I'm thinking I might have the same feelings and questions that you do and it's always good to ask questions that your neurologist or doctor can hopefully answer so that it's easy to understand. Here are a few references that might be helpful to understand how it works.

--- Nutritional Neuropathies: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/
--- The Role of Vitamin B6 in Peripheral Neuropathy: A Systematic Review: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10343656/.

I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. I take 4000 mcg Methylcobalamin B12 daily as part of my neuropathy supplements. Here's a reference link on the B2 - https://austinpublishinggroup.com/pharmacology-therapeutics/fulltext/ajpt-v3-id1076.php. I would be more concerned with taking additional B6 if my levels were already high since you can get B6 toxicity which can cause neuropathy. There is another discussion on the topic that you might want to read what others have shared here:
--- B-6 vitamin danger!: https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/.

I think I might ask my neurologist why they are not concerned so maybe it would shed more light on your concerns. Do you know how long your B12 and B6 levels have been high or what the possible cause is?

I look forward to reading the responses you get from others. I have idiopathic sensory-motor PN. I have no current blood work, none that shows levels of B-12 and B6, anyway. On the advice of my neurologist, I have been taking supplements for the past year (B-12 1000 mcg, B-Complex); and this past July (again, on the advice of my neurologist), I added EB-N5, a power-pack of "medical food," which includes B-12 35 mg x daily). If all it might matter, my only PN issues are balance and gait. I have no pain. My balance and gait have not worsened in the past year. Tomorrow, I'll be seeing my PCP, and I plan to ask for blood work that will show my B-12 and B-6 levels. This is a hot-button topic, and I'm glad you posted it.

Thank you so much for your quick response. I look forward to reading the information on the above links. My B levels have been high for about a year. First the B12 was very low, so they put me on 1000 MCG of B12 - which I took for about 6 months. When I had blood tested it was 2800 , so doctor told me to cut back to every other day, but also suggested that we take blood test again after flushing system of B12. So I went without for four weeks, tested and this time both levels of B12 (1200) and B6 (38.8). This was the first time testing for B6... I don't know the right questions to ask the neurologist as she was not concerned with B6. All reports that I have read is that B12 is good for neuropathy - but since I am still at 1200, I should stay off the supplement for now.

I felt a bit like a yo-yo when it came to B12 management from about 2016-2020. I was in target range but borderline low in 2016, so with the onset of Neuropathy, I was advised to take supplements. For the next few years, between my PCP’s, Neurologist, and even 2 Medical University Neurologists, I’d get alternating “Woah, cut back” or “It’s Ok to run a bit high”. To be honest, I didn’t know who to listen to but my own googling. For the past 3 years though I’ve been getting unanimous “High (as long as not ridiculously high) is just fine since we know it’s supplements - it will pass through your urine”. So I feel a bit settled on the B12 issue (for me). As for B6, which I’m normal without supplements, since 2016 I have gotten unanimous messages to avoid trying to increase it since too much is a neurotoxin. So I feel a bit settled on the B6 issue too (for me).

Hi, Debbie– Me, too: I'm far more focused on B-6. And frankly, I've no idea of my level. I plan to press that point when I see my PCP later today. Since my neurologist has me on EB-N5, I'm especially curious. (I say "curious," not "concerned," because he's assured me I needn't be concerned. Still … ) –Ray

A brief follow-up to my earlier posts about B6 and my annual check-up with my PCP yesterday: When I asked flat-out that my vitamin and mineral levels be included in the lab work that would be part of the annual check-up, my PCP said, 'Of course,' but then explained that getting a meaningful reading of my B6 level from routine bloodwork might prove disappointing (something I've heard elsewhere). In any event, I will be going for my labs at midday today and I will ask the phlebotomist what's different about getting a meaningful reading when it comes to B6. ––Ray

That’s interesting Ray, we’ll see what you find out. It’s interesting how things change over time, I guess over time they learn more and more. I remember telling a PCP a couple of years ago that I couldn’t remember the last time I provided a urine sample for anyone, that it used to be more routine or at least part of an annual exam, but it seemed to have stopped. She said it did stop, that they found it didn’t add enough useful information that blood labs provided, so it was only used for specific concerns now, not routine. I’m ok not providing it, it’s not my favorite activity, and it would seem a lot of extra time and $$ throughout the entire medical and lab system for the test if it unnecessary.

Ray - what did the blood lab tech have to say about B6 "meaningful reading"?

Good morning, Debbie (@dbeshears1), Patricia (@patriciaschulz1950

As far as my blood work and B6 go, Fate stepped in, so I've nothing to report this morning. With just enough time to get to yesterday's lab appointment, I skipped out to my car (well, that's an exaggeration; no one with PN ever really "skips," LOL) only to find I'd a flat tire. So I've got a fresh appointment for this afternoon. Maybe tomorrow I'll have something to report?

Ray (@ray666)

My B-6 reading is the highest a neurologist has seen in his career. Labs were done in July to be repeated in September. Taking nothing with B-6 in it, including the 10 mg of it in a daily vitamin.