discovering thiamine deficiency

Connecting the Symptom Dots: Discovering My Thiamine Deficiency

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As a registered dietitian nutritionist (RDN), I was surprised to find out that I had a thiamine deficiency in December 2015. My diet wasn’t perfect, but it was close. I never imagined I’d spend so much time trying to treat my own deficiency, but it’s been over a year the first lab work showed the deficiency and I’m still struggling with it. I’ve been asked to share my symptoms and experiences, so I’ll start back around the initial diagnosis.

Let me preface my story by sharing some information about myself. I’m a 46 year old female and I’ve always considered myself fairly healthy. I’m active, and I complete a minimum of 12,000 steps/day and often much more. That includes some form of aerobic activity daily. I’ve dealt with some annoying health problems, but nothing I considered major. I’ve had issues with insomnia, depression, nerve problems, migraines, hypoglycemia and GI distress (mostly diarrhea) for years or decades. I’ve also had some discomfort on the left side of my chest, on and off, which goes unexplained. I’ve seen many different types of doctors, including cardiologists, neurologists, gastroenterologists, psychiatrists, sleep specialists, endocrinologists, allergists, etc. Also, I have very early visual symptoms of glaucoma, but my doctor said there aren’t any signs of disease in my eye. No familial history of glaucoma, and I’ve never been diagnosed with diabetes. Separately, all of these symptoms seemed minor. Only within the last few years or so, did I begin to wonder if there was some sort of connection.

In the fall of 2014, I started a post-bachelors program in dietetics. I had returned to school almost two decades after completing my bachelors, and the road to this program was a long one. My insomnia seemed to be severe the night before exams. Sleep eluded me, even with the prescription sleeping pills. Anxiety, right? It never occurred to me that it was something else. After all, I’ve had insomnia issues for at least a decade. Sometime during the semester, I had seen a neurologist for some nerve testing. I had numbness and tingling in my feet, hands and arms. It would wake me up at night. I began seeing a doctor of osteopathy for manipulations to help with the nerve problems, too. Also, I had noticed some garbled speech and numbness in my tongue, but thought I was imagining it.

During finals week in December, my insomnia became severe. My physician prescribed Xanax, but I hated the way it made me feel. I felt my anxiety actually increased.  Even after finals were over, sleep eluded me. I was piecing 3-5 hours of sleep together, if that. I had trouble eating a full meal and was losing weight. In addition, I was having discomfort on the left side of my chest, something that I had experienced in the past but was yet unexplained. All of this was attributed to anxiety. By the end of December, my physician prescribed a daily anti-anxiety medication. This medication made me nauseous and I had diarrhea. Of course, these symptoms didn’t help the weight loss. At no time did my physician do any lab work while this was happening. I was so miserable that I emailed my advisor to inquire about dropping out of the dietetics program. Fortunately, she wouldn’t entertain the idea and encouraged me to continue, noting that I could take an Incomplete if necessary.

By February of 2015, I was down to 103 pounds, (I’m 5’ 4” and 130 pounds currently). I was dragging myself to school. I had lost a lot of muscle mass, and couldn’t sit for long in class because of the lack of muscle. My face looked quite thin and my temples were hollowed out. In March 2015, I was weaned off the medications and began taking 7.5 mg Remeron, and Ambien as needed. The Remeron helped my appetite and I began regaining weight and strength. With the support of my professors, I was able to complete the semester, and even maintained a high grade point average!

Early in the fall semester, I listened to a lecture by an RDN who is an integrative and functional medicine certified practitioner (IFMCP). Based on her lecture, I knew my instincts about an underlying connection to all of my symptoms was correct. In November 2015, I had an appointment with that RDN. She recommended some blood work, which my primary care physician (PCP) reluctantly agreed to do. It was a lot of blood work, and fortunately my insurance covered it. There were many positive or problematic results, but among them was low thiamine (whole blood) at 29ug/L, a positive ANA test, TPO 693, as well as magnesium and ferritin were in the low normal range. After further autoimmune testing, it was determined that I have Hashimoto’s disease, too.

The low thiamine level could explain many of my symptoms, including, insomnia, nerve issues, migraines, precordial pain, weight loss and problems processing carbohydrate. The question is why was my thiamine level low? I had always thought my diet was relatively healthful. For years, I watched my added sugar intake because of trouble with hypoglycemia. My fiber, protein and water intake seemed adequate. I’m very careful with my fat intake because I had a cholecystectomy in 2009 and still have problems with lipid digestion. I rarely drank alcohol because of the hypoglycemia and insomnia. The only other beverage I consumed was tea, usually 1-3 cups per day. Furthermore, because of my hypoglycemia, I ate mostly whole grains and very little gluten, if any.

In January 2016, I began taking a B vitamin complex, magnesium, lipothiamine and some other supplements, including Ortho-Digestzyme to aid in lipid digestion. I made changes to my diet, including dairy free and gluten free. I began seeing some health improvements. Eventually, I added yogurt and cheese back into my diet, but remained gluten free. I was having fewer migraines and began sleeping without Ambien. That spring I was taken off the lipothiamine, but continued the B vitamin complex and magnesium. I graduated from the dietetics program in May 2016, something I feared wouldn’t happen only one year earlier.

At the end of October 2016, I had an infection (perhaps, due to an insect bite) on my outer ear which wouldn’t go away. My PCP prescribed a cephalosporin antibiotic for 10 days. Towards the end of November and into December, I was having increased nerve issues, occasional insomnia, mild apathy and anxiety, which was strange given I had nothing to be anxious about. Also, I had the same chest discomfort again. My thiamine level was tested and it was low at 32 ug/L. I was taking the B vitamin complex and magnesium all along, so my PCP was unsure what to do. I’ve since learned that some antibiotics, like the one I took, can deplete thiamine.  I saw the RDN again and began taking lipothiamine again on 12/23/2016. I was taking 50 mg, twice a do with magnesium, in addition to the B vitamin complex.

My PCP planned to retest in a month to see if it was working. However, on January 20, 2017, I had an emergency appendectomy. During the surgery, I was given a cephalosporin antibiotic, but it was only during the surgery, not afterwards. It should be noted that I only missed one day of supplements because of the surgery. By the end of the first week, I strongly suspected my thiamine level had bottomed out, because my symptoms of anxiety, insomnia, nerve pain, etc., reminded me of what happened two years earlier. During that week, I was taking 50 mg lipothiamine twice a day, 200 mg magnesium and a potent multivitamin. Personally, I think the antibiotic, surgical procedure and recovery, and resulting diarrhea contributed to the low thiamine despite supplementation. I almost went to the ER in hopes that they’d give me a thiamine injection or IV, but decided to wait until Monday to see my PCP. Her suggestion was that I continue my supplements, then we’d retest in a month. One month later, my thiamine level was low still at 32 ug/L. My PCP said she isn’t comfortable giving intramuscular thiamine injections and suggested I see a gastroenterologist. I mentioned information I found on Hormones Matter, but I don’t believe my PCP was interested in reading the material.  I feel like I’m being bounced around from one doctor to another. I’m going to see the gastroenterologist, whom I’ve seen before but I’m not hopeful that she’ll be able to help. I saw a neurologist recently, who was very kind and listened intently, but could only suggest an MRI and a DO, who “might” be able to help me, but that DO’s office is 1.5 hours away. Next week, I’ll go back to the cardiologist for a check-up because of the ongoing discomfort on the left side of my chest.

For now, I’m sleeping at least 6 hours a night, which feels like a lot to someone who’s experienced severe insomnia. My hypoglycemia is under control. I’m not sure if that’s because of the thiamine supplementation, the gluten free diet or both. The last time I had gluten, I experienced both mild insomnia and hypoglycemia, but again, my thiamine was likely low too. I feel I still have occasional memory issues, but maybe that’s age related. Also, the numbness and tingling in my extremities continues. Migraines occur much less and are less severe, usually. The mild vision problems linger, as well.

The RDN I’m seeing is uncomfortable with me taking more than 100 mg lipothiamine per day. At this time, she is recommending supplements to treat continued GI inflammation too.  Here is my current regimen: 100 mg lipothiamine/day, 200 mg magnesium/day, multivitamin 1/day (RDN wants me to take 2/day), 28 mg iron w/vitamin C, sodium butyrate 600mg 4/day, NAC 600mg 2/day, Ortho-Digestzyme 2 capsules before each meal to help with lipid absorption, and about 4000 IU vit D3.

Unfortunately, I feel I’m just one missed dose of my supplements away from problems all the time now. I’m not sure how to find a physician who can help me solve this ongoing thiamine problem and don’t know where to turn next. Again, I’m going to see a gastroenterologist and cardiologist this month, but feel it may be more of the same. My father died at 45 years old of cardiovascular disease. I know thiamine deficiency can lead to cardiovascular problems too, which is why I’m going back to the cardiologist.

Any suggestions are welcomed!

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  1. Hi,
    You mention you have hashimotos. I have hashimotos too and take thyroxine for the low thyroid. None of tis is medical advice. which you need to get from a doctor; this is just my personal experience. A friend and I who also has hashimotos have both noticed that small changes to the amount of thyroxine you are taking can make a huge difference. It is amazing how many symptoms can be linked to the thyroid . It took both of us a while to find the right doctor and the right dosage of thyroid medication, and it can change , which is why both of us are tested for thryoid levels every three months. The difference in taking the right dose of thyroid meds can be incredible. Also ,the brand name, not the generic thyroid med is far more effective for me and our pharmacist says this can be common for many people for some reason. Wishing you good health!

  2. I’m in my early 50’s. Struggled for decades with low energy and poor focus during the day, followed by insomnia at night.

    At age 51, I also started experiencing burning sensations and pins/needles in my feet. Research revealed this can be a nerve disorder called Beri-Beri that is treated with thiamine. Learned also that consumers of carbs, coffee and alcohol (three of my favorite things) deplete their thiamine levels quickly.

    Decided to supplement with B1 500mg to see if it made a difference. The change was remarkable. My daytime energy and focus improved significantly. The foot burning/pins/needles went away. When I added a magnesium supplement at night (thiamine requires magnesium to activate at the cellular level), my sleep improved as well.

    I started taking B1 500 mg twice/day, once at breakfast and another at lunch. Big improvement in energy levels overall.

    I’m now experimenting with benfotiamine, the synthetic form of B1 that is more bioavailable. Taking 300 mg in the morning seems to get me through the entire day. When I took 300 mg benfotiamine in the morning followed by 500 mg of B1 at lunch, my energy levels became extremely high and it actually caused insomnia. Cutting back to just the 300 mg of benfotiamine in the morning seems to have solved that problem.

    I’d love to engage my doctor on this subject. But so few doctors know/care about nutrition. You have to think for yourself and be willing to experiment a little to see what works.

  3. A bit late but, pretty sure you were not getting enough thiamine, which is totally acceptable and tolerable at 600 mg/day. I’ve been taking two 150 mg caps of benfotiamine twice daily for less than a week and starting to feel great! I hope you’re getting enough thiamine now!

  4. Sway test guy!! It’s the cure you need to lean or sway test everything ! You stupid doctors won’t heal you they don’t know anything they let me be horribly sick to point of wanting to kill myself until I finally was able to sway test that I had a gene disorder and my white blood cells weren’t going through the nerve some facts like they should too battle the mini growths and tumors in my body..
    . Just put the vitamin like a single vitamin up to you and sway test if you’re moving forward it means you need it if you move back that means you don’t.. simple as that. Go to health food store with good quality vitamins and do every single one of them and enzymes and see what you need and what you don’t need and ask your body how many of them do you need.
    When I had severe severe adrenal problems I would throw up horrible diarrhea and be screaming with anxiety and they thought I was insane they wanted me to see a psychologist but all I needed to take was for 500 mg of vitamin B1 throughout the day that would keep it at Bay.. and then I finally found out I was missing a gene that suppressed damaged cells from growing into tumors in my body and anyways I healed that as well. YouTube it but half of people on YouTube are dramatic and crazy and they make it hard it’s not that hard you simply just sway test it is an answer of yes or no. Best of luck!

  5. 100 mg of thiamine is nothing. You need at least 1000 mg or even more when you are deficient. There are some studies where people were given 5000 mg a day.

  6. Also consider that 1 to 3 cups of tea a day that you mentioned. Tannins block thiamine uptake. You may also find with research that some people have defects in their thiamine uptake or processing and need large doses, I am seeing doses that far exceed 50mg per day as needed by some people to feel healthy. The fact that you supplemented with thiamine and still came up low on it in testing is IMO writing on the wall that you are not getting enough thiamine for whatever reason. Thiamine is needed for SOOOO many things throughout the body and could account for all of your issues.

  7. This WILL HELP;

    1. Increase magnesium to 400mg/day (which form do you take? You should take magnesium citrate or better). 200mg/day is really really low, let alone for someone who is already deficient.
    2. Change from liposomal thiamin to regular thiamin HCl 100mg/day. It’s very cheap but effective and rapidly absorbed. Liposomal thiamin is a nice thought but the problem is it relies on fat absorption and if that isnt 100% right you’re sabotaging yourself.
    3. Take your supplements on empty stomach.
    4. Stop the vitamin D supplement until your magnesium is corrected! Vit D uses up magnesium bigtime.
    5. Do not eat/drink anything containing CALCIUM 2hours before and after you take your magnesium and thiamin, as calcium binds to them and lowers their absorption bigtime.

    Good luck!

    • Lipothiamine is not fat soluble. It does not rely on fat absorption and it is not stored in the liver. The “fat soluble” tag that many attach to lipothiamine is a misnomer. It means that lipothiamine does not require a protein transporter to enter the cell. Thiamine has always been a water soluble vitamin. There is no such thing as a fat soluble vitamin B1 the same way we think of vitamins A or D, as examples.


    ORDER YOUR OWN REGULAR THIAMIN (Thiamine Hcl i guess), in CAPSULE form not tablet(hard to digest/break into free thiamin), take 100-200mg a day.
    (Reason for this is your liposomal thiamin relies on your FAT absorption, it might just be you have trouble absorbing fats, so just order the regular thiamin please.)

    Finally, try INCREASING YOUR MAGNESIUM FROM 200mg/day to 400mg/day, as 200mg is very very low, especially for someone already deficient!

    I’m more than certain this will help you, when you find relief, be grateful to the Most High Almighty and He will grant you further improvement in health.

  9. Your story sounds like mine. I just wanted to pass on some resources that I am researching now.
    Watch videos from Elliot Overton at EO Nutrition–Very smart and knowledgable about B vitamins and diet.
    Also search videos on B vitamins from Dr. James Berg. Again very smart. Hope this helps.

  10. I thank each and every one of you who posted information. I believe I have Thiamine deficiency driving my fatigue, parathesia, depression. I am MTHFR compound heterozygous 667 and 1298. I need methylated b-12 injections and take every three days. My b-12 lab results are always extremely HIGH. I read within one of the posts that this would be from a thiamine deficiency. I have found so much information that I intended to study Lisa’s story, her protocol, and all responses to glean all of this great information. Then I will take it to my functional practitioner who is a miracle worker. She will help me discover all that I need to get my energy back. I have such an energy drop and depression some times it is horrible. However, I have no diseases, no maladies but allergies, and am as healthy as a 20 year old, and I am a senior. I run, do cardio, weight lifting, but still that total lack of endurance, fatigue, and ultimate depression. Again, thank you everyone for sharing. Jan Marie

  11. Hey there I would try to take b1 in pair with other nutrients that will raise your GABA levels and help lower GLUTAMATE. I suffered from extreme insomnia(sleep maybe 3xweek) bipolar rapid cycle, and severe anxiety. This is what I use. And it works. I seriously hate taking all this as it’s a lot but it saved my life. I take the following below with a histamine blocker and some melatonin and is the only thing that works– no other meds no matter how strong can get me to sleep.

    Zinc picolinate
    Magnesium glycinate
    L theanine
    Lemon balm
    Sunflower lecithan
    Ascorbate acid
    Manganese– usually try to get from diet like cinnamon

    Zinc, glycine, p5p, taurine together all help CREATE and maintain GABA.

    Ltheanine and passionflower directly raise GABA and can be felt immediately.

    Lemon balm prevents GLUTAMINE from turning to glutamate so helps the “shunt” and increases GABA indirectly.

    Taurine helps block glutamate damage and also helps stomach acid for nutrient absorption.

    **B1,b2, manganese, biotin, & pantothenic acid are all cofactors that help ACTIVATE the p5p for the GABA conversion**

    Sunflower lecithan helps the absorption of nutrients, stabilizes cell membranes, and supports the vagus nerve so the bacteria in your microbiome communicate properly with your brain. (Bacteria in gut create neurotransmitters like GABA)

    Hope this helps!! Just give it a try, I use NOW brand as it is cheap and works pretty well cuz it’s so much to take all of this.

    I also take L rhamnosus to raise my gaba and help my anxiety. for any questions(:

    • Hi
      Am curious about if react to some of those items, that maybe high already in GABA.
      Have reacted to sunflower lecithin, lemon balm, taurine. Do feel better with B2 usually B1. Have you checked out Dr Reid’s unglutamate diet?

  12. Have you looked into the state of your LIVER? I’m in your same exact situation. Fat malabsorption problems point to a sluggish Liver (or possibly fatty liver, like mine). I realized it’s not enough to supplement with B1, I needed to find the SOURCE of all my problems. In my case, it’s most probably my fatty liver. I found the book on liver health by the Medical Medium and abandoned a paleo, and most recently a Keto diet in favour of a raw quasi-vegan diet (with supplemental iron, magnesium, calcium, b complex and liquid b12). It’s helping a lot! I’m also doing Ozone renal insufflation which is meant to cleanse the liver. I highly encourage you to look at the liver for answers.

  13. Increased thyroid hormones can cause a thiamine deficiency. Also, as stated below, foods can inhibit thiamine.

    “Several food products contain anti-thiamine factors (eg, thiaminases and thiamine antagonists) that inactivate thiamine. The thiaminase heat-labile enzyme is found in raw or fermented fish, shellfish, and some bacteria. These foods have anti-thiamine activity when consumed without heat treatment. Heat-stable thiamine antagonists occur in several plants, ferns, tea, and betel nut. They include polyphenols that are
    found in blueberries, red currants, red beets, brussel sprouts, red cabbage, betel nuts, coffee, and tea. They react with thiamine to yield the nonabsorbable thiamine disulfide. Tannins, a major component of fermented tea leaves, have antithiamine activity, which can be abolished by ascorbic acid, tartaric acid, and citric acid, all present in many vegetables and fruits.16 To decrease the influence of anti-thiamine factors and increase thiamine bioavailability, it is recommended to delay the
    consumption of tea or other tannin-containing products after a meal,to consume foods high in ascorbic acid, and to heat products containing thiaminase before consumption. ” Also, “A carbohydrate-rich diet coupled with low thiamine intake can
    precipitate thiamine deficiency.”

  14. Our youngest is low in thiamine and is greatly benefitting from topical application of TTFD (either Allthiamine or Sulbutiamine) in oils (i.e., magnesium oil, coconut oil). A few drops of essential oils, lavender, can mask the smell. Perhaps that would bypass any possible absorption problems.

  15. If you have done 23&me, check your SLC genes. I have several SNPs that affect Thiamine & biotin. ( I take 300 bentofiamine, and 700 mg Thiamine HCl) Also, Gitelmans is on an SLC gene, it causes mineral loss, I am a salt loser. Hope this helps.

  16. Dr. Lonsdale and Dr. Marrs,

    I wrote the story above. Last year, I ran my 23 & Me genetic raw data through MTHFR Support. I only recently realized that I am homozygous for a few G6PD SNPS, and the more I read, the more I understand this can affect women, not just men as once though.

    As I began looking my G6PD genes on MTHFR Support, I realized that first 2 genes are part of thiamine degradation and the Pentose Phosphate Shunt! I can’t help but wonder if this is part of the connection to my lifelong thiamine deficiency. I think its worth investigating and I’m hopeful my new integrative and functional medicine DO will be willing to help.

    I don’t recall if you had presented anything in your book about G6PD. When I looked back at it today, I didn’t see anything in the index. Any case studies or insights into this?

    Thank you for your time.

    • umm – it sounds like you may need B12 injections. I just read through the article very quickly as your symptoms/setbacks you encountered sound all too familiar —- so I may have missed the part where someone looked into your B12 levels. My eyebrows raised at the bit about your setback after surgery — if you were given nitrous oxide for your surgery it might help explain the problems after surgery. It deactivates B12 (I really don’t know the mechanism). I know what works for one person doesn’t necessarily work for another. I discovered I had a serious B12 deficiency along with all of the B vitamins, especially B1. so have been taking B1 and Magnesium along with the B12 injections. My research and experience this year has taught me that to heal one deficiency I needed to heal the several I had together.

      Well good luck

      • Thanks for the recommendation; it may help others. B12 is not the answer here. The problem is definitely thiamine deficiency. In fact, according to Dr. Lonsdale, when thiamine is deficient, B12 & folate levels are usually elevated. My thiamine levels were depleted after surgery, due to the trauma (the body requires much more to heal) and the antibiotics.

        For anyone getting B12 injections (or any nutrient injection), be sure the injection does not contain aluminum, which is a neuro-toxin. Aluminum is common in nutrient injection solutions.

        Thank you.

        • Usually doesn’t mean Always!
          Are you aware that gluten-free products (which are generally either highly processed or unfortified) are liable to precipitate a thiamin deficiency just the way polished rice and alcohol bring on beri beri?

        • But did you ever have your B12 or MMA levels checked? While it may be true that B12 and folate “are usually elevated’, it’s worth it to keep in mind that was only anecdotal evidence based on a dozen or so patients.

          And vice versa, if you’re taking thiamine (which seemed to be a LOW dose), then your B12 and folate would come down. Numbness, tingling, pain, and especially weight loss are also signs of both folate and especially B12 deficiency.

      • B12 deficiency can kill you. I don’t know why doctors don’t check all of their patient’s B12 levels at least once a year. I self diagnosed my B12 deficiency after no one could tell me why my toes had gone numb and I was constantly tired and dizzy. I eat meat regularly so it was determined that my body doesn’t produce intrinsic factor which is required to allow your body to absorb the B12 molecule and thereby make use of it. I have been receiving B12 shots for about 5 years now and I feel So Much Better! It makes me so sad to think I could’ve been feeling better much sooner if any of my doctors had thought to check for a vitamin deficiency. All doctor’s want to do now is prescribe anti anxiety medicine and get you out the door quickly.

        • ” All doctor’s want to do now is prescribe anti anxiety medicine and get you out the door quickly.” True statement!

    • You can try activated B1.
      And have you ever looked into an OAT test?
      Or a bloodtest to test active b vitamins.

      You can look into b2 in active form of FAD and FMN – those need iodine, selenite and molybdenum., to become active, through t4 T3.
      You mentioned hashimoto, Iodine en selenite are related to thyroid right

      Now MTRR recycles oxidated methylb12 in the methionine cycle.
      MTRR needs FAD.

      So with thyroid problems there is a chance to develop a sort of functional B2 and thus functional B12 problem.

      Google b12oils and the related we pages or understanding b12 on fb.

  17. I noticed that you said you drink tea, I only have a minute to reply, I have been researching for years for life threatening reasons. I came across a article that stated that tea can interfere with the absorption of B-1. I wish I could tell you where I found the link but I can’t. When I have more time I will see if I can find it and post it for you. I do know that B-1 deficiency can cause severe life threatening results and have literally reversed the effects from them. Also the problems with your glucose are directly related to B-1 deficiency.

  18. If you are/were having intestinal inflammation, especially with weight loss would consider glutamine. Maybe this was part of your enzyme supplement. Apologize if you already know this. My child had ulcerative colitis, glutamine seemed essential in her return to her previously good health. Glutamine is a conditionally essential amino acid, which we learned about from Dr. Google, none of the other doctors either knew anything nor mentioned anything about this. Even though she dropped from 50th to 2nd percentile for weight, and did not grow for 1.5 years in 4th and 5th grade. So one would imagine doctors would be concerned about her conditional “glutamine” status. She was cachetic and losing blood, besides being stunted. She has fully recovered we expect in part from our feeding her inflammed and starved enterocytes of her intestines with conditionally essential glutamine. She certainly met the condition.

  19. I have POTs and am constantly reading what will help me get out of this mess. B1 depends on Magnesium. Have you checked your magnesium RBC? 200mg is not very much….I’m up to 700mg now plus Magnesium chloride foot baths 3x week. The Magnesium advocacy group on Facebook r experts in balancing your minerals. I have learned so much from them.

    • Hi Lesley,

      Thanks for the info! Yes, I’ve had my magnesium checked. I, too, do Magnesium baths. I’ll check out the FB group you mentioned. Thanks again. All info is appreciated.

    • Agree, 100%. 200mg magnesium is a very low amount. No wonder the health issues. I know this article is old. I hope she figured the need for more magnesium before now. The Facebook group, MAG, made a huge difference to me.

  20. Thank you to everyone for all of these great suggestions! I’m sorry I haven’t had time to respond to each one individually, but all are appreciated. I didn’t think to mention in my writing that I’ve been tested for Celiac disease, both via blood (3x) & biopsy (2x) over the years and it’s been negative for Celiac. Thiamine deficiency was the cause of the weight loss. All of my other B vitamins are in line, including B12 and Folate. I don’t have diabetes and don’t take Metformin, so no link there. I will be joining FB so I can look into some of the groups mentioned. Again, thank you all for taking the time to respond.

      • I actually agree with adding in B12 even though serum levels are high. Have you actually checked methylmalonic acid or holotranscobalamin levels? Have you looked at functional B12 deficiency. It is very possible that your elevated serum B12 is basically haptocorrin, not functional holotranscibalamin. Look at Lawrence Solomon work on neuropathy and B12 where a significant percentage of patients responded even though their B12 didn’t look to be low. Look up functional B12 deficiency. We are coming in the opposite direction where my oldest must take B12 to decrease symptoms, and if they stops for a short while, they spiral again. I believe this is due to a thiamin deficiency. Please consider trialling a sublingual B12 for a short time.

      • Me too. B12 deficiency blunts the villi (personally I believe a number of those diagnosed with celiac, but have negative blood tests are likely functionally deficient in B12 affecting thiamin absorption. Additionally, B12 deficiency mitochondria potentially making less ATP which is needed to make TPP. Also, there is some evidence that hypoxia decreases the production of TCN2 and that Thiamine deficiency also stabilizes HIF-1 (i.e. basically makes the body think it hypoxia). Also, this is a rat study but will likely interest you.

  21. Hello L. Perry,
    Your story is very moving to me. I also have suffered quite a lot from thiamine deficiency. I have learned so much about the roots of my illnesses from two facebook groups: Trying Low Oxalates and Peeling Back the Onion layers. I suggest that you try joining them and using the search bars to find previous conversation threads for terms like “thiamine transporter defects”, “Dr. Derrick Lonsdale”, “Anti-thiamine factors” and any other thiamine related terms you can think of. She has lead some fascinating threads lately. Come join us in trying to learn more about thiamine and how we can manage and heal from its deficiencies.

  22. Have you done genetic test (23&me can give you raw data) to look at look at your SNP’s? It will give you huge clues as to what your body can and cannot handle. For instance, I have one of the MTHFR genes, COMT, CBS so my pathways are challenging, in that I don’t produce enough glutathione to easily rid toxins from my body, I don’t absorb vit B well and need to use the active form of methylated b12, can’t digest grapefruit, etc. It also tells me which drug families do/don’t work with my personal chemistry.
    I really feel the genetic piece is missing from “personalized” medicine and health care. We are all biologically different, and not a one size fits all cure. And without the genetics knowledge, especially those of us with more silent illnesses (autoimmune, cfs/fibromyalgia, etc.) we spend valuable time and money chasing the wrong tail. There is a certain order to healing (fix the gut, heal co-infections, detox metals, etc.) that done out of order don’t build upon each other and can take you back to square one.Even many functional doctors don’t have the genetics piece to work with and refer you out to someone whose had the training. Perhaps check out Dr Ben Lynch, Angela Griffiths, MTHFR support, Aperion health in NC, Amy Yasko. I think it will give you some great insight. Hope its beneficial to your continued healing.

    • Jodi,
      Just curious what doctor you go to for your methylation issues if you don’t mind sharing?

  23. I have recently found out that I am thiamine difficient also. When I looked at the symptoms I realized that I probably have been on and off most of my adult life and severely difficient for over a decade. I have also been heavily medicated for symptoms that were from several nutrient deficiencies. When trying to dig for clues as to why, I ran my 23andme through “Stirling app” and discovered a plethora of issues. This is as far as I’ve gotten, I wish I had more for you. Benfotiamine actually helps briefly. I need to find some direction as well.

  24. Dr. Isabella Wentz has a book out, Hashimotos thyroiditis: Find the root cause, in which she talks about using high doses of thiamine, for one thing. She uses 500 milligrams a day, no dairy and gluten free. She has a lot more to say of course, but a main take away is that Hashish is an autoimmune disease, and all autoimmune diseases have a root cause. She helps you by listing tests you should have and she gives you a protocol to follow that is good for any autoimmune disease. The mud le wasting and diarrhea remind me of myself 7 years ago. Finally an astute doctor at a walk in clinic tested me for Celiac disease, with a simple Ttg blood test. It was over 200, so a gastroenterologists did a biopsy to confirm Celiac disease. It took over two years before I felt better, but definitely improved a bit each month. I didn’t give up dairy, and apparently most gluten sensitive people should. I still have time going in my feet, but now that I have started thiamine, I hope to resolve that too. My insomnia resolved long ago.
    One last thing, many people heal faster on a grain free diet until their gut heals. Once gluten has damaged the gut, the part that heals last is the part that digests starch and dairy. Dr. Aleso Fasano who is an expert in gluten intolerance has much information on this, if you Google it.

  25. Dear L,

    My attention was called to read your post by a friend. I read it in dismay with respect to doctors as you wrote that your “primary care physician (PCP) reluctantly agreed to do” is just so typical–and more often than not, it is a battle to get a PCP to agree to any blood test. I would like to note a few things–some of which were already noted above by others in their comments.

    Firstly, Thiamine deficiency is one of the many B vitamins (B1 is thiamin but there is B2, B3, B5, B6, B9, and B12) all of which must work together to get the benefit of any B vitamin. I also found this out the hard way and one would think that a healthcare professional–you a nutritional expert and me with a doctorate in neuroscience related issues) would know better! But we don’t until we start doing our own homework and dig deep. I would like to share my experience–not to compete with yours but to help the readers understand the importance of what you wrote when people have different symptoms that signal the same condition.

    When I was 19 years old (now 63), I had a major nervous breakdown with the kind of anxiety you describe with fight-or-flight so strong I could not even live in my own apartment without open windows (even in the winter). It got to the point that I was taking hot and cold showers one night to get this “whatever thing” out of me when my then fiance now husband took me to the ER. I was given Valium (diazepam) and sent home with the direction of getting a blood test the next time I see my doctor–this was in another country. The blood test showed that my B12 was near zero so I was placed on B12 IV for three months several times a week. I sort of made a recovery enough to live but the anxiety and other symptoms you refer to, continued all my life.

    I was taking B12 supplements, B12 multi vitamins, everything I could. Other than having amazingly neon-colored urine, there was no change.

    Then last year I got my DNA report from 23andMe (this is not an advertisement for their services) and I discovered that I am an MTHFR C667T “mutant” and hence I have methylation issues! Kaboom! There is the explanation.

    Now testing methylation doesn’t need a genetic test. Blood tests of homocysteine (folate methylation), a test for all B vitamins, and carnitine (a metabolism aid helping with fatty acids) could all have helped you figure things out. The problem is that unless you ask for the test specifically, no doctor ever thinks of giving you one and when you do get the test, you MUST ask for the actual numbers since many doctors don’t understand the test results. The believe that as long as you are within the set ranges or above (as many in the case of B12) all is well. No, all is not well!

    As example: B12 usually has a range of between 200 and 900 (lab dependent. Is 201 or 899 normal? What about 199 or 1000? Each of these is not only not normal but means a different thing!

    Now to cut to the chase with B1 (Thiamin): if you are deficient in any B vitamin (or have too much in any), you have an absorption and/or a methylation problem. Taking a supplement that is synthetic in B vitamin will not help you absorb it if you have a methylation issue or if grains (those amazingly misunderstood intestinal absorption killers) block the absorption.

    My first recommendation is to reevaluate what you know about grains because what they teach about grains in med school or in nutritional education is quite wrong. Humans cannot absorb grain and hence they build bulk. Building bulk is a far cry from absorbing and so whatever nutrition is added to grains is also wasted since not only can they not absorb in the grain, grains also prevent protein synthesis and thus most of the vitamins and mineral cannot absorb.

    Next consider the choices of taking each B vitamin in active methylated form separately. It is not possible to place all B vitamins in bioavailable form in one pill. Here is the list I compiled to take and since I am taking these my urine stopped being neon yellow–indicating that I actually absorb them–my anxiety level is gone, my brain works like never before, my energy level is amazing as well. The changes are truly amazing:

    B1: Thiamin HCL (sublingual)
    B2: Flavin mononucleotide
    B5: Pantothetic Acid
    B6: pyridoxal 5-phosphate
    B9: Folate as L-5-Methyltetrahydrofolate
    B12: Methylcobalamin (sublingual)

    I excluded B3 (Niacin) on purpose. B3 supplements are known to cause type II diabetes so don’t go there. A final note: I ordered all these except for some reason B5 fell off the map. I took the rest and my urine was still neon. Once I discovered the missing B5 and added that as well, my urine changed immediately and now all is superb!

    In conclusion: these struggles that often lead to life-long disabling problems can be resolved and solved by a simple blood test. I know many doctors are resisting to offer blood tests if they don’t think that their patients exhibit the type of symptoms that are in their “cook book of diseases,” though the better qualified MDs will go beyond what those books tell them and try to diagnose rather than read their memories of long when still in med school.

    All the best to you and a fast recovery,

  26. PA/B12 Deficiency group on fb are a wealth of knowledge, I’d def start there. I hope you’re taking K2 with your d3. Co factors are so important. Keep going, don’t give up!

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