1. < Neuropathy

Excess B12 possibly causing numbness and tingling

Posted by persistentc @persistentc, Mar 14 7:53am

At a recent visit with my PCP, I asked her to run some labs. One of them, B12, came back at excessively high levels. This can cause numbness and tingling in your hands and feet! I had been told that you can never take too much B12 because anything your body doesn't need is excreted in the urine. But after doing a little searching on the internet I discovered that Methotrexate, which I take for auto-immune issues, can cause the body to retain the excess B12. I have just started infusions of Simponi to replace the use of Methotrexate. I will post again after I have been off the Methotrexate, which my rheumatologist says can't happen for a few months until the Simponi kicks in. However, I wanted others to be aware of this possible cause. As a note, the PN did not start until AFTER I began taking Methotrexate, so I am pretty hopeful this may lead to some relief in a few months!

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Mar 14 8:31am

Thanks for starting this discussion @persistentc. Sorry to hear you had the PN adverse side effects of Methotrexate. I thought I would share a reference on the topic for others.

-- Potential neurotoxicity associated with methotrexate:
https://pmc.ncbi.nlm.nih.gov/articles/PMC11315891/
Hoping you can provide an update here in a few months!

REPLY
1 reply
celia16 | @celia16 | Mar 14 2:53pm

That’s very surprising. Thanks.

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michaelsz | @michaelsz | Mar 15 7:46am

Sorry to hear of your symptoms. Is it subsequence or consequence? Perhaps it is the underlying condition for which you take methotrexate that is causing the numbness or tingling? Or is it the methotrexate that is causing that rather than the B12?

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1 reply
persistentc | @persistentc | Mar 15 8:48am
In reply to @johnbishop "Thanks for starting this discussion @persistentc. Sorry to hear you had the PN adverse side effects..." + (show)
@johnbishop

Thanks for starting this discussion @persistentc. Sorry to hear you had the PN adverse side effects of Methotrexate. I thought I would share a reference on the topic for others.

-- Potential neurotoxicity associated with methotrexate:
https://pmc.ncbi.nlm.nih.gov/articles/PMC11315891/
Hoping you can provide an update here in a few months!

Jump to this post

Thanks for the link, John. I will definitely post again to let folks know, one way or the other, if this is indeed the case.

REPLY
persistentc | @persistentc | Mar 15 9:22am
In reply to @michaelsz "Sorry to hear of your symptoms. Is it subsequence or consequence? Perhaps it is the underlying..." + (show)
@michaelsz

Sorry to hear of your symptoms. Is it subsequence or consequence? Perhaps it is the underlying condition for which you take methotrexate that is causing the numbness or tingling? Or is it the methotrexate that is causing that rather than the B12?

Jump to this post

The Methotrexate prevents the body from excreting excess B12. My B12 results were at a toxic level. The underlying condition is Axial Spondyloarthritis, previously misdiagnosed as RA until the seventh (!) rheumatologist I am now seeing thought to check to see if I have the HLA-B27 allele (I do).

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seekingsanders1957 | @seekingsanders1957 | Jul 20 8:28pm

I also started experiencing numbness & tingling in my arms & legs about a month ago. I had a B12 test taken and it came back 1535 which is significantly elevated. I was initially advised to take a B12 supplement because I am vegan. I was basically told that it was probably neuropathy after seeing a doctor. I am diabetic but my blood sugars levels have always been controlled. I think it's the elevated B12 levels, but my question is how long it will take for my B12 levels to fall back within normal ranges (days, weeks or months)? I stopped taking the B12 supplement two weeks ago, but I am still experiencing the tingling & numbness. I would appreciate any insights regarding this dilemma.

Sincerely John Sanders

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3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jul 21 8:35am
In reply to @seekingsanders1957 "I also started experiencing numbness & tingling in my arms & legs about a month ago...." + (show)
@seekingsanders1957

I also started experiencing numbness & tingling in my arms & legs about a month ago. I had a B12 test taken and it came back 1535 which is significantly elevated. I was initially advised to take a B12 supplement because I am vegan. I was basically told that it was probably neuropathy after seeing a doctor. I am diabetic but my blood sugars levels have always been controlled. I think it's the elevated B12 levels, but my question is how long it will take for my B12 levels to fall back within normal ranges (days, weeks or months)? I stopped taking the B12 supplement two weeks ago, but I am still experiencing the tingling & numbness. I would appreciate any insights regarding this dilemma.

Sincerely John Sanders

Jump to this post

Hello John @seekingsanders1957, Welcome to Connect. I'm guessing it takes several months to reduce the B12 levels. You might want to scan through the following discussion on your question here:
-- B12 too high?: https://connect.mayoclinic.org/discussion/b12-too-high/

The Linus Pauling Institute has quite a few papers on B12 absorption if you want to do a deep dive - https://lpi.oregonstate.edu/search/osu?keys=b12%20absorption

Have you discussed the high levels with your doctor?

REPLY
seekingsanders1957 | @seekingsanders1957 | Jul 21 2:35pm

Hello John,

I really appreciate the prompt response as this situation has been concerning to me because my PC physician has basically ruled it out. I definitely will take a deep dive and read the material that is available. Thanks

Sincerely John Sanders

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jankavs | @jankavs | Jul 22 11:49am
In reply to @seekingsanders1957 "I also started experiencing numbness & tingling in my arms & legs about a month ago...." + (show)
@seekingsanders1957

I also started experiencing numbness & tingling in my arms & legs about a month ago. I had a B12 test taken and it came back 1535 which is significantly elevated. I was initially advised to take a B12 supplement because I am vegan. I was basically told that it was probably neuropathy after seeing a doctor. I am diabetic but my blood sugars levels have always been controlled. I think it's the elevated B12 levels, but my question is how long it will take for my B12 levels to fall back within normal ranges (days, weeks or months)? I stopped taking the B12 supplement two weeks ago, but I am still experiencing the tingling & numbness. I would appreciate any insights regarding this dilemma.

Sincerely John Sanders

Jump to this post

I had b12 level at 2000 when I went to hospital for my symptoms that got so bad that I thought I might have had a stroke (before any diagnosis). I was told to just stop it altogether for awhile, but not told when to resume. I am vegan, so I resumed supplementation at a much lower dose about 3 months later. I now take 500 mg about 4 days per week.

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1 reply
seekingsanders1957 | @seekingsanders1957 | Jul 22 1:34pm

I appreciate your comment & similar experience insight. I have not taken the B12 in 2.5 weeks and the symptoms seem to be getting better. Less tingling & numbness in arms & legs but it's still there, hopefully it will reside altogether in the next couple of weeks. Thanks

Sincerely John Sanders

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