Maximum daily amount of B12 one can take

Posted by haleakala @haleakala, Jun 11, 2023

I have tingling and numbness in my left foot and lower left leg. The sensations fluctuate every other day. One day, it is mild and the next day, sensations are stronger. It has been alternating daily like this since last July. My functional medicine doctor had me take a blood test for B6 and the result was very high. So, in March, I stopped taking B6 supplements as my doctor recommended and blood test has shown B6 is within normal limit. Symptoms continue.
I have read in different posts that B12 deficiency can cause neuropathy. I take supplements for nerves from my FM doctor and the total daily B12 I take is 2000 mcg. I am also partial vegetarian as I eat seafood and dairy. I have read posts from people saying that when they have taken more B12, their symptoms have cleared.
Is there an upper limit for B12 daily supplements or B12 shots? Is it possible to take too much B12 and have detrimental effects?
I will ask my doctor for a blood test.
In the meantime, can I safely increase the amount of B12 that I take? If so, is there a maximum amount to take orally?
Thank you.

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@rickhood

One thing to add: B12 shots alone may not do enough. I needed to take 5000mcg orally daily to get my levels up (the CVS chewable 5000mcg worked fine). One of my neurologists, Dr, Oaklander, said she wanted my levels to be 600-1000. They are now over 1,000 most of the time when I get tested.

BTW so far it's not helping anything and my foot neuropathy is still gradually getting worse.

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I started using resvestrarol with Q10 and grape seed. Also, added milk Thistle and I take Vitamin E, a V Complex and Vitamin D3. The resvestrarol replaced the Alpha Lipoic Acid that was upsetting my stomach. It is helping me very much, my feet are not burning any longer, Praise the Lord. I like to add that I started using support stockings at home, the lightest one, very helpful as well.

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@johnbishop

Hi @mariannelarsen, Welcome to Connect. It's great that you are doing your own research and learning as much as you can about your condition. I think all of us have been there in the I'm a mess state. What really helped me get out of it was finding Connect when I was first diagnosed with neuropathy and learning as much as I can about the condition and treatments that may provide some help or slow the progression. If you haven't already seen it, you might want to bookmark the following site and browse through the information and the videos on their webinars page here - https://www.foundationforpn.org/past-webinars/.

Which neuropathy symptom bothers you the most?

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Well I finally got an answer to my neuropathy Apparently I have Multiply Myeloma - not good I am going to an hematologist/oncologist and get some more information.

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@mariannelarsen

Well I finally got an answer to my neuropathy Apparently I have Multiply Myeloma - not good I am going to an hematologist/oncologist and get some more information.

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Who told you that cancer causes neurological disorders?

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@su8

Who told you that cancer causes neurological disorders?

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Kappa lambda light chain blood report - abnormal and neuropathy in feet. On my way at this moment to hematologist/oncologist

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@mariannelarsen

Kappa lambda light chain blood report - abnormal and neuropathy in feet. On my way at this moment to hematologist/oncologist

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I don’t have multiple myeloma. I have neuropathy in my feet and my labs were abnormal but I did research on my own and the conclusions I reached were wrong. I am sorry for any erroneous information I put I this site! I don’t know the what the neuropathy stems from - maybe it is from my vegetarianism and low B12

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@jeffrapp

Here is a quote from an article I"ll reference. The whole article is easy to read and fairly non technical: "A serum vitamin B12 level between 200 pg/mL and 900 pg/mL is considered normal, but a threshold of 300 to 350 pg/mL is recognized as a marker for a desirable status in the elderly. The laboratory diagnosis is usually based on low serum vitamin B12 levels or elevated serum methylmalonic acid and homocysteine levels. Elevated homocysteine is an important marker for vitamin B12 and/or folate deficiency. Classic deficiency symptoms such as megaloblastic anemia often fail to appear with subtle deficiencies, as they are usually late clinical signs of severe deficiency.3,4 Symptoms of vitamin B12 deficiency include anemia, neuropathy, and neuropsychiatric disorders."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2781043/#:~:text=A%20serum%20vitamin%20B12,methylmalonic%20acid%20and%20homocysteine%20levels.
I would be interested in knowing why Dr. Oaklander wanted your B12 level to be higher than normal. You might ask her to direct you to references that support that idea. Your's is only one case (although it's certainly the most important case to you!), and doesn't prove anything, but notice that even at higher than normal levels, you have noted no improvement, and the disease progression continues. It is possible that B12 has nothing to do with your form of PN.
At this point in time, PN is an extraordinarily difficult and frustrating disease. Hopefully, that will change in the future. This situation affects everyone: patients, doctors, families, etc. Do the best you can, stay informed, and try to have a positive attitude.

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I was taking injectable B12 for Anemia 3x per week. I went on the Carnivore diet and lost a lot of weight. My last blood work at the end of July had my B12 was >2000, Folate 14.3,Feritin 679, LH 17.2,Iron 178.
I wish I understood more about my blood work but time to cut back on the B12.

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My Vitamin B12 level was slightly high so I changed my multivitamin to one that wasn’t 200% of the daily RDA. Here has been no change in the neuropathy of my feet, I am a meat eater and don’t believe I have cancer. My neurologist doesn’t know what caused my neuropathy.

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@jgellert

My Vitamin B12 level was slightly high so I changed my multivitamin to one that wasn’t 200% of the daily RDA. Here has been no change in the neuropathy of my feet, I am a meat eater and don’t believe I have cancer. My neurologist doesn’t know what caused my neuropathy.

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Hi @jgellert, Welcome to Connect. It sounds like your diagnosis is similar to mine - idiopathic small fiber neuropathy. My neurologist that it could be hereditary and I do have relatives with neuropathy so I'm guessing it's a possibility. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. There are a few sites that can help you learn more about neuropathy and possible treatments that help.
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview.

How long have you had neuropathy?

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