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Natural high levels of B12 and B6

Posted by patriciaschulz1950 @patriciaschulz1950, Sep 5, 2023

I have PN - and continue to determine the cause. Current blood work show elevated levels of B12 and B6 (I take no supplements or vitamins or drink energy drinks, etc). My neurologist is not concerned and suggested that I start taking B12 1000mcg daily - I know that your body disposes B12, but she could not answer or seemed concerned that both were elevated. I have read the value of B12 for nerve damage, but am hesitant to start this vitamin. Comments please.

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bruizersmom | @bruizersmom | Feb 1 10:46pm
In reply to @inmagic "This response is for Patricia and Bailey. I have motor, sensory, and autonomic neuropathies (since 2011),..." + (show)
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This response is for Patricia and Bailey. I have motor, sensory, and autonomic neuropathies (since 2011), and I have had high B12 and high B6, which have been around the same level as Bailey's for years. I don't recommend taking any B vitamins without first checking your levels. Insist that your doctors do this. I learned this the hard way. Doctors suggested a B complex, and I took it for years. High B6 can cause neurological symptoms or, in my case, make them much worse. I stopped taking B complex years ago and just recently stopped taking multivitamins. Depending on how much B6 you have been consuming and for how long, it can take a year or more to get the B6 level down again. Check everything you consume, from supplements to foods, and try to keep your B6 consumption within the recommended daily allowance of 1.3 - 1.7mg. Unless you are deficient, you do not need to supplement B6. You can meet the recommended daily allowance with just one pork chop and a banana or avocado. Look at a list of foods high in B6. Processed and fortified foods often have B6 added, especially industrial dairy foods, so read the labels!! All of them! Cut out energy drinks altogether!!! Drink a lot of water and natural unsweetened electrolytes like coconut water. Plus, increase your salt intake if you don't have high BP. I will recheck my B12 in six months, and if it is still high, there are urine tests to see if the B12 is being absorbed into the cells or just circulating through the bloodstream. There is not a lot of info out there for high B12, and most doctors don't think it's an issue, but I want answers.

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I don't take a B complex, just straight B12 for my neuropathy. I was told by my PCP that the abnormal (high) readings were fine because the body flushes it out, so I continue my 3000 units a day.

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celia16 | @celia16 | Feb 2 1:54am
In reply to @tomkofathensga "My Female Doctor thought it was important." + (show)
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My Female Doctor thought it was important.

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I am intrigued. I’ll explore it.

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celia16 | @celia16 | Feb 2 7:17am
In reply to @bruizersmom "I don't take a B complex, just straight B12 for my neuropathy. I was told by..." + (show)
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I don't take a B complex, just straight B12 for my neuropathy. I was told by my PCP that the abnormal (high) readings were fine because the body flushes it out, so I continue my 3000 units a day.

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This is what I was told too, but a few months after taking high daily doses of Cyanocoblamin version my eGFR had dropped 20 points. I’m not sure why, because everything seemed fine otherwise, except for a rough colonoscopy a few days before the blood test. My Endo said the B12 shouldn’t have made a difference, but…..idk. I felt the need to switch to the Methyl kind.

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John, Volunteer Mentor | @johnbishop | Feb 2 7:28am
In reply to @baileynichole97 "I have been being worked up for a possibly neurological disease, as I’ve had a lot..." + (show)
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I have been being worked up for a possibly neurological disease, as I’ve had a lot of neuropathy, the entire right side of my body has less sensation of touch even.
My b vitamins have been high for maybe 2 years, labs from yesterday came back at b12 1,265 & b12 144.5
I’ve tried having past doctors re check these vitamins but they wouldn't.. finally switched to a new pcp who did. I don’t take any b supplements & don’t drink energy drinks often..
my family & friends thought I had MS wonder if it’s been the b vitamins this whole time..
only time will tell I suppose

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Hello @baileynichole97, Welcome to Connect. It's great to hear you finally have a PCP that listens and is working with you to figure out what is going on. You mentioned the entire right side of your body has less sensation. I thought I would share this article in case you haven't already seen it to see if anything sounds similar.
-- Numbness on One Side of the Body: https://www.verywellhealth.com/numbness-on-one-side-of-the-body-5525769.

You might also be interested in what other members have shared with similar symptoms. Here's a search of Connect that lists the discussions and comments for numbness on one side of body - https://connect.mayoclinic.org/search/discussions/.

Have you thought about getting a referral from your PCP for a neurologist or specialist for additional testing and diagnosis?

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noteworthy | @noteworthy | Feb 6 1:46pm
In reply to @deluga "Two months ago my neuropathy got much worse. This is the time I switched to a..." + (show)
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Two months ago my neuropathy got much worse. This is the time I switched to a different multi-vitamin. After reading the information on Connect about B6 being very bad for neuropathy, I checked the amount on my new multi-vitamin. It was over 1000%DV. I also had myB6 amount tested and it was very high.

I have now switched back to my original multi-vitamin which is still high in B6 while I await shipment of my new multi-vitamin which contains no B6. Since I am a vegan, I do need B12.

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So crazy that we have to find out that high B6 is very bad for especially anyone with neuro problems, the hard way. Many months after I was diagnosed with ALS, I got tested for the B's. I was told to stop taking anything with B6 in it and especially the B complex. But there are no warnings. B12 I am told is OK for high levels as the body just eliminates excess.

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