B1(Thiamine) levels checked if you have nerve problems with cancer

Posted by lorirenee1 @lorirenee1, Feb 27 12:50pm

Hi, I had breast cancer 3 years ago, and within 2 weeks of my lumpectomy, I developed severe nerve pain in my feet. I have been to 2 neurologists,, pain doc, physical therapy, and nothing helped pain. No medicine helped. I happened to talk to a lady in the Mayo Neuropathy group, who takes a very bio available version of vitamin b1, called Benfotiamine, which is thiamine. Within 48 hours, my pain vanished. I researched Benfotiamine extensively, and found that cancer can create low thiamine levels that can create damage to your nerves in various ways. I checked all my lab tests, and not one of my doctors checked vitamin B1, thiamine. Do not take a regular B1 vitamin. You must take Benfotiamine and Amazon sells it, with amazing reviews for nerve problems. Benfotiamine is widely used in England and Germany, but not much at all in USA, where I live in Illinois. It can take easily one month to help you, if your thiamine is low. Be sure to take at least 600 mg. daily, but you can take up to 1,000 mg. daily. It has made me a pain free person. I am overjoyed, and hope to help someone here. Lori Renee 1

I have neuropathy in some of my fingers and feet since chemotherapy in the Fall of 2018. After 1 1/2 years the nurse in the breast center at Mayo suggested acupuncture. It has really helped especially if I can get a treatment every other week. Wondered why it as not recommend earlier.

At my 2 year follow-up I asked for my B12 levels to be checked. They were about as low as they could be. Probably one reason why I was always so fatigued and thus had no energy nor desire to do anything. Happy to report that after taking 500 mg of B12 for about a month now I am feeling more like myself. In following up to your post why aren’t tests for these vitamins (and others) routine for cancer patients? I will be asking for my B1 level to be checked at my next follow-up. Thank you so much for the heads up! We indeed need to be the advocates for our own health.

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@mugs24cancer

I have neuropathy in some of my fingers and feet since chemotherapy in the Fall of 2018. After 1 1/2 years the nurse in the breast center at Mayo suggested acupuncture. It has really helped especially if I can get a treatment every other week. Wondered why it as not recommend earlier.

At my 2 year follow-up I asked for my B12 levels to be checked. They were about as low as they could be. Probably one reason why I was always so fatigued and thus had no energy nor desire to do anything. Happy to report that after taking 500 mg of B12 for about a month now I am feeling more like myself. In following up to your post why aren’t tests for these vitamins (and others) routine for cancer patients? I will be asking for my B1 level to be checked at my next follow-up. Thank you so much for the heads up! We indeed need to be the advocates for our own health.

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Acupuncture helps some people with neuropathy, and not others. Seems like each of us are so different. I am so glad the B12 helped you feel more like yourself. My B12 was borderline on the low side, and i had B12 shots for months, but it did not help at all. I just don't think B1 is part of neuropathy treatment in the USA very much. Taking Benfotiamine was a true miracle for me. Within about 48 hours of taking it, my pain is gone for many hours on end, and usually only bothers me just a bit at night. A true miracle. Yes, I do think every cancer patient should check their B1, thiamine levels. The literature about low thiamine and its connection to cancer is out there!! I was flabbergasted that not one of my docs checked my B1. It was only due to a sweet lady on Mayo Connect Neuropathy group, that I discovered this miracle. I have my life back again. Best of luck, Mugs!!!! LoriRenee1

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