thiamine deficiency - dry beriberi legs

Diet and Medication Induced Thiamine Deficiency – Dry Beriberi

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I am 41 years old and experiencing weird, scary, and upsetting symptoms that began a year and half ago. I have numbness in my feet that has moved up into my calf and super tight calves, ankles and feet. I have peripheral neuropathy, carpal tunnel symptoms, circulation issues without swelling and some sciatica like symptoms with achiness in my legs. I am exhausted all of the time, have no energy and symptoms of depression, but I am not depressed other than these health issues. I am overly irritable and always cold. My hair is falling out and I become dizzy when I standup from a sitting position.

In the past, I believe at some point I had insulin resistance but was never diagnosed. I did, however, have issues with my blood sugar. I was put on Metformin for 6 years, during which time I had a lot of stomach issues, nausea, and diarrhea. I was never a big drinker at all, nor did I use tobacco. I was under a ton of stress for many years though. Despite the stress, I was always healthy and worked out, ran on a treadmill, and was active. I worked as a nanny 55 hours a week.

My diet before metformin was not the greatest with lots of carbs and processed foods. I may have had a thiamine deficiency back then and but did not know about it. No one ever tested me for thiamine until recently. A lot of my symptoms started at a time where I was dealing with some heavy things, so I believe stress was definitely involved. For the past three years, I have not been on medication. Currently, I eat a low carb/keto diet and my A1c is 5.2 and insulin is 3.

Discovering Thiamine Deficiency

I started to experience these symptoms about a year and a half ago. I have tried many things to feel better and help with my symptoms and nothing has worked. Of the nutrient testing that I have had, my thiamine was low. It was 66nmol/L. The reference range was 78-185nmol/L. My vitamin D was barely above the deficiency range at 30ng/mL, my methylmalonic acid was on the low end of the range at 107nmol/L (range 87-318), and my vitamin B6 was high at 29.5ng/mL (range 2.1-21.7). Nothing was discussed regarding the other low vitamins and high B6. I was, however, told by my neurologist to take 100mg a day of vitamin B1/thiamine. She never indicated that this was the reason for my symptoms though.

I began doing my own research and found that I had all of the classic symptoms of dry beriberi – thiamine deficiency that affects the nerves. In other words, my symptoms were related to thiamine deficiency. I began supplementing with Benfotiamine 600mg a day am taking magnesium (Optimum health) at 150×2= 300 at night. My FM doctor said my magnesium was at 4.5 and they like to see it at 5.3. I also take vitamin D3/K2. My vitamin d was on the low side.

When I began supplementing with thiamine at 100mg per day and the Benfotiamine, I notice I was not as tired or fatigued. I was feeling pretty weak there, and I feel better, but the nerve issues have not changed.

Six weeks after finding out I had a thiamine deficiency, I got bloodwork from my FM doctor and my thiamine was now too high, almost as if I wasn’t absorbing it. I should mention that the second test was a plasma test while the first test was done from the serum. From what I have learned, plasma thiamine measures are less accurate. Even so, should I be worried?

My FM doctor wants to test again for Lyme disease. Beyond that, I just don’t know what else to do to resolve the nerve issues. Thank you!

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8 Comments

  1. Since your thiamine does not seem to be getting inside the cells where it is needed, you
    might consider taking one of the TTFD forms of thiamine which are able to cross into the cells and able to cross the blood brain barrier even when the thiamine transporters read not functioning properly. It seems that you may have a functional thiamine deficiency due to the B1 transporters or mitochondria not functioning properly.

    I prefer the Lipothiamine TTFD enteric coated 50 mg tablets. Allithiamine, sulbutiamine and Thiamax are additional brands /formulations of the TTFD form of thiamine.
    (TTFD = Tetrahydrofurfuryl Disulfide which is a synthetic derivative of thiamine) which bypasses low stomach acid issues and is absorbed in the small intestine. Thiamine is best absorbed in an acidic environment. Derrrick Lonsdale, MD has written articles about TTFD thiamine which are posted in this group. Just do a search in the group for TTFD thiamine. Elliott Overton has also written many articles about functional thiamine deficiency.

    • Thank you for all of this information. I am taking Bentfotamine but I was thinking maybe I should try the TTFD as well. I know Elliott Overton suggest Thiamax for TTFD.

      • Thiamine needs the other B vitamins to make enzymes. Try taking a B Complex along with Benfotiamine and magnesium.
        Get checked for Celiac Disease which causes deficiencies in Thiamine and other micronutrients.

        • Thank you for your help. I just started taking b12, upped my magnesium and riboflavin along with Benfotamine and Thiamax. All I ever was told was to take a b1 supplement at 100/day. It’s like some or most doctors do not know about deficiencies, especially thiamine. It is so frustrating. I appreciate your help. I hope this works!

      • Look into avoiding fluoride so that your thyroid can get back on track. Fluoride competes with iodine, which is needed to make thyroid hormones. When the thyroid is optimal (TSH less than 2.5 or even less), your gut will begin to absorb all that it needs, provided you eat a healthy diet. I believe most of our issues are from some degree of underactive thyroid, which leads to poor digestion, resulting in B deficiencies amongst other deficiencies etc etc. Switch to fluoride free toothpaste, stop green and black tea, and filter water with specifically a fluoride filter pitcher.

  2. I’m now on Joshua Leisk’s protocol and he addresses a lot of this. Gets around issues with blood test reliability for nutrients by using a skin spectroscopy test. If you go to ‘start here’ in the discord you’ll find the protocol (regularly updated) and videos on his work. See https://discord.gg/ZuYnSpE9. He’s also on Twitter.

  3. Great job on on managing what sounds like pre-diabetes. Most people can’t get past the addictions to food or don’t bother trying to understand blood sugar and insulin.

    Wish I had a sure fire answer for you but I’m still trying to figure it all out myself and I started 10 years ago on this health journey. I can assure you that it takes time for the body to heal and get back to optimal. I believe that the main culprits in disease, at least in the western world, stem from too many plants in our diet creating Oxalate toxicity (not to mention all the other plant toxins), seed oils which should be avoided at all costs which is almost impossible to do, not enough protein from red meat which is required for tissue repair not to mention endless other functions, and thiamine deficiency which is still the Wild West in terms of who knows what to do and how to do it. Now there is of course a plethora of chemicals and other toxins in our environment now thanks to our government being so lax on protecting its citizens, but a healthy body can typically deal with most of those.

    I think you’re on the right track and just need to give it time. Nothing beats a clean, healthy diet and good sleep along with a strong community. I’ve read just about every article on this site, the book by Lonsdale and Marrs, and scoured the internet. Elliot Overton is a wealth of information along with his thiamine guide and if you want to explore Oxalates, I recommend Sally Norton and her book “Toxic Superfoods.” Knowledge is power and conventional medicine is an utter failure unless you break a limb and/or need surgery. I wish you well. You got this!

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