Connecting the Symptom Dots: Discovering My Thiamine Deficiency

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discovering thiamine deficiency
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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19 Comments

  1. 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.

  2. 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.

  3. 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.

    1. 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.

  4. 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.

  5. 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.

  6. 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.

  7. 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.

  8. 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.

  9. 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,
    Angela

  10. 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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