A desperate mother sent me an email about her 23-year-old son and it was easy to recognize that this young man had full-blown beriberi. You may or may not know that beriberi is well known as a vitamin B1 deficiency disease. Because the medical profession is convinced that this disease never occurs in America, it is usually not recognized for what it is. He had seen many physicians without success. I want to record the majority of his symptoms to show that they are surprisingly common and are usually ascribed to a “more modern” diagnosis. I have christened beriberi as the “great imitator” and I am sure that the reader will readily recognize the common nature of these symptoms, presented below in the form of a Table. It is important also to understand that these symptoms can occur for other reasons, but thiamine deficiency is widespread.
|panic attacks||loss of balance|
|blurred vision||cluster headaches|
|hair loss||jaundice at birth|
|poor intestinal motility||bloating|
|severe calf pain||joint pains|
|cold extremities||chemical sensitivity|
|POTS||severe pain sensitivity|
I want now to describe some of the features reported by this mother that were extremely important major clues. She described her son, when in good health, as 6’2”, 175 pounds, extremely athletic with “amazing hand-eye coordination and finishing college with high honors”.
As a result of his undiagnosed illness, his weight had dropped to 133 pounds. Because thiamine governs energy metabolism, an intelligent brain consumes a great deal. Of course, compromised energy production can occur for reasons other than thiamine deficiency. But there were very strong clues for beriberi. The mother described how her son
“…went out drinking with friends. The next day he could barely sit up in the car or stand. We were all commenting on why he was having such an extreme hangover”.
Alcohol would certainly exaggerate an existing thiamine deficiency. It is a well-known association. The symptoms were intermittent, rising and falling “for no apparent reason”. For example, she said that he was
“able to play sports, then lose his balance, become weak and complain of blurred vision”.
The reason for this is because the physical activity was demanding energy that could not be supplied because of the thiamine deficiency. He had jaundice at birth, now known to be because of inefficient oxygen utilization. This would indicate poor maternal diet in pregnancy or a genetic mechanism involving thiamine absorption. So-called panic attacks are common in the modern world and are absolute indicators of poor oxygen utilization in the brain. Under these conditions the reflex known as fight-or-flight would be initiated and this is what is being called panic attacks. The blurred vision would go along with this too.
Beriberi is a Form of Dysautonomia
We have two nervous systems. One maintains what we call willpower and is known as the voluntary system. The other one is known as autonomic and is entirely automatic and outside willpower. This system controls all the organs within the body. It explains why there are so many symptoms involving many parts of the body. This is because of the loss of signaling power between the organs and the brain. A lot of energy is required to run this system and explains why the autonomic nervous system is affected in beriberi. POTS is one variety of dysautonomia. This young man craved salt and that too is a form of dysautonomia is known as cerebral salt wasting syndrome, explaining the natural craving.
Is there a help from the laboratory?
The answer to this is no, as long as physicians refuse to recognize that beriberi is common in America. This unfortunate young man was diagnosed almost certainly as psychosomatic. The disease has a very long morbidity with symptoms shifting up and down according to the state of energy metabolism on a day-to-day, week-to-week and month-to-month basis. The laboratory has to look for it because the standard tests done only provide distant clues. It is the absence of the abnormal results that make it easy to conclude that this is “a psychologic disease”. For example, it was reported that this young man had an elevated vitamin B12 and a mildly elevated CRP. I cannot give the complex details here, but both are peculiarly related to energy metabolism and require understanding in order to fit them into the pattern of diagnostic clues. I have reported these facts elsewhere.
What is the hope of normal health in this person?
It stands to reason that the first thing is proper diagnosis and a knowledge of the widespread symptomatology, including their fluctuation. As long as he continues to take alcohol and sugar, he will never get his health back even if he supplements with thiamine. He is in danger of developing the classical brain disease known as Wernicke’s Encephalopathy. This state of the disease almost certainly involves cellular damage that cannot be repaired. It is therefore very urgent to understand the self-responsibility that is required. He has to learn that alcohol is potentially lethal for him. There is undoubtedly a genetic relationship between alcoholism and sugar craving and it is probably true that a search for the genetic relationship would at least be helpful in understanding the nature of this disease.
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Dear Dr Lonsdale
First of all, thank you for your incredible accomplishments in researching thiamine and other micro nutrient deficiency! I have been reading on here for a few months and am studying your book.
I could write a long article or many which I will at some point.
. “As long as he continues to take alcohol and sugar, he will never get his health back even if he supplements with thiamine”
I completely stopped alcohol some months ago.
When you say “sugar” are you meaning refined sugar? Could you please elaborate what types of sugars you are referring to?
I tend to reduce or avoid refined sugars, but I consume a lot of fruit.
I find your work fascinating and very useful for myself. For the first time I was able to clearly understand what is going on and how to treat myself!
Thank you very kindly!
Dear Dr Lonsdale
I searched through the library of articles on this website and found the answer to my question.
Fruit is the only way that we should be consuming sugar. Its absorption and processing is modified by fiber. Mother Nature always has the answer,
Thank you very much for your clarification!!
I truly wish that I had found this site many years ago. I spent a literal fortune over many years in direct and indirect health related costs! Your work is a true treasure of health information from a very different perspective, a perspective i very much agree with. I read on here and study your book whenever possible. My health is improving very substantially and I am fully recovering because of your life’s work!
A TRUE LEGACY!!
I want to help spread the word…
Please do spread he word. There are millions who are affected. I look forward to seeing a post from you.
I can relate to all of you. Two months ago I started having issues with blood pooling in my hands. I was checked in hospital for bad circulation and there was nothing to see. I did my own test and found my bioactive levels of B1, B2 and Biotin were low. B1 24,5 EDTA ug/l > 39,8. B2 47,8 > 85,4. Biotin 1097 >1250. Coq10 1,31 >1,70. I also did a heavy metal test which showed elevated levels of arsenic and mercury.
My doctor(private doctor – my regular GP has given up) suggested we go for IV of b-complex. I’ve had two infusions and I don’t feel they done any difference. My symptoms are getting worse. The last week I’ve been having shortness of breath, pressure to the chest, pooling of blood in hands and feet, swelling of legs, swelling of the abdomen, cramps in the lower legs at night.
I’m 44 years old. 180cm and weigh around 63kgs. I used to weigh 80 kgs. I can’t gain weight. In January I could run 7k. I can’t run across the street now. I also have a history of bad digestion the last 7 years. SIBO and LIBO.
I just got some fulvic acid to try. Hope that will help with mineral absorption. I have Allithiamine but I feel bad whenever I take it. Lightheaded, pressure to the chest. I’ve taken it at 50mg with magnesium and B2 and other supplements but it doesn’t help. I cant figure if my electrolytes are messed up. I’ve taken ELOTRANS a couple of times and feel that is has helped but yesterday was the worse day for my circulatory issues. Don’t know if the electrolyte drink made it worse.
Somebody mentioned in a Facebook post I should raise my glutathione levels. I am at a loss about what to do and how to proceed. My doctor wants to give me another round of IV b-complex today which I am scared to take…
I will try to answer your questions. You tell us about a high concentration of mercury and arsenic, heavy metals that will precipitate thiamin deficiency. You describe swelling of the legs and abdomen, characteristic of thiamine deficiency. You talk about leg cramps typical of magnesium deficiency and you describe weight loss, typical of energy loss that you also describe. Bad digestion and SIBO both go along with thiamine deficiency. You say you feel bad when you take Allithiamine, but you have not evidently surveyed the problem of paradox which is posted on this website. Here is my recommendation: start taking low-dose thiamine, say 10 mg and keep this dose up on a daily basis in spite of worsening of symptoms. This is called paradox or refeeding syndrome, and wait until the paradoxical increase in symptoms modifies. You can then start escalating the dose, titrating it to the improvement in symptoms. There is no maximum dose and there is no toxicity. As improvement occurs, add in magnesium and B-Complex. Please be aware that this is an entirely new form of treatment and we are using thiamin as a drug. It has little to do with vitamin replacement. A lot of patience is required: because you have no idea how long you have been deficient.
Hi Dr. Lonsdale!
I’ve just bought your book after reading the above post. Reading through your articles for the last several days, I’m simply amazed that you’re in your mid 90s still with an incredible brilliant mind! I know now for 100% certain that I’ve been thiamine deficient for the last 20 years or so and my health has suffered greatly. I never suspected that I could be deficient in any vitamin because I’ve always taken the best form of mega multivitamins and shelves of supplements for years, including all forms of Magnesium, K, trace minerals, etc etc. I used to be very athletic and had an incredible memory so noticing the difference in the degradation of my health and my brain’s capacity since my mid 30’s is sadly obvious. I recently prayed to God that my memory be restored (or at least not get worse) after having a particular difficulty with my French (re)learning and piano sessions and I somehow landed on your site. I’ve been taking Allithiamine for the last few days and what I notice clearly different from Benfotimine is that it’s giving me a non-stop splitting headache which I see as a good paradoxical reaction from reading your posts. I was on Benfotimine 300mg x2/day for a week prior to that but stopped for now because it was causing diarrhea although it was helping with rest of my peripheral symptoms. I’ve been tracking my food consumption and glucose for years and noticing for the first time that my AM fasting glucose is in the low 90’s instead of pre-diabetes level. I’m so glad that I’ve resisted my PCP for almost a decade wanting to put me on Metformin and I fought that with strict low-carb diet and of course I’ve removed sugar for many years to no avail. Now I feel a sense of hope after monitoring the improvement of various symptoms. I have a few questions for you though –
1. To what do you attribute your mental health? Would you please share what supplements you personally take daily? I bought your book to gain additional insight but would love to hear your response. I’m surrounded by many people in their 70-90 with PhDs with once brilliant minds but their mental capacity are nowhere near yours.
2. With those who have lost some brain function for a while, have you seen people gaining it back after thiamine supplementation? I’m hoping my painful headache means there’s some shifting of catabolic/anabolic for an ultimate gain. Is it possible for the lost memory capacity be restored?
3. I’m going to titrate up the dosage of Allithaimine of which I’m on 50mg per day now. Next week will increase to 100 mg, etc. until 200-300mg. Will I need to be on it indefinitely for the rest of my life? What would be an ideal maintenance dosage after the noticed benefits abate or plateau?
I ordered your books this summer and found them to be the most important in my journey. Thank you!
Two months ago I wrote about my air hunger, which went away after I mega dosed B1 but some more symptoms are showing up since I stopped mega dosing. My doctor emailed a list of supplements, and wanted me on a small dose then off for a month except for one week until, and plans 35 mg 6-12 months until we meet in Sept.
I’m 53, and have had health issues since childhood. I was docile and low energy child, I remember my teacher had my hearing tested but it was never followed up on, I suppose this is when my ADD was showing up. In high school hormones imbalances from processed foods and chronic fatique started showing, I took antibiotics for acne. In 20’s, more antibiotics for strep, then yeast infections. At 35 I was on effexor for several years. A psychiatrist Dx with high frequency loss in my early 40’s.
At 46, Dx with hashis, my antibodies were 60, and half the doctors said yes you have it, they other half said no. Antibodies are steady at 600, new doc says I might not have even have hashis. I tried Armour and it lifted my brain fog for a day and I saw vivid colors, then I got horrible side effects. Thyroid docs kept telling me to raise the grains even though my TSH goes too low, My shoulders are starting to curve. DHEA worked one week and then stopped working. I’m on estrodial/progesterone but I believe the HRT was fuel for the small fibroid. It grew to the size of a grapefruit in 3 years. B12 is always elevated in my Lab Corp labs.
At 47, I was in DC the week of hurricane Katrina, went sight seeing in storm and felt normal. After I flew home, I lost my motor control. I was bed ridden for a month and broke a dish after I didn’t have the strengh to put away. I recovered fully after just resting. A few years later I began walking slow for no reason, accupuncture helped recover. At 50, I had wicked calf cramps and leg and edema in face and legs but ceased.
In Feb, I had fibroid ablated. My bowels worked after I recovered from surgery then shut down after two months. I have IBS but I think I have gastroparesis. In Mar, I began taking ozone baths for a 3 months once a week (w/o functioning SOD enzymes) and I think the heat and oxidation caused air hunger and POTS in August. I’ve had insomnia for 10 years, it started when there when a bar was playing music too loud for about 6 months, then hot flashes, nocturnal itching on fingers, poor urine at night and day, dry mouth and now body heat. Being tested for MCAD and other related syndromes, GI thinks I have EoE. Lipids elevated for several years and I’m paleo. My handwriting lost form.
The root is – I grew up on white rice – I’m Chinese. Mom is 81 high energy, low IQ, no chronic disease, her side has bad Alzheimers. Dad is 83 high energy, high IQ, sugar addict, moody, sleep issues. His dad had diabetes (in China it was a treat to get an extra bowl). Two ADD brothers are high energy, one had TC cancer at 42. I have ++SLC19A3, DHFR/MSH, FOLR2, SLC6A2 +-MTHFR 1298, SLC19A1 and a bunch of other bad ones. I look healthy, but people teased me all my life saying I have a blank stare.
Since last Friday night I’ve been faint getting up from bed and sitting, my bpm raises by 30. After 6 days, I mega dosed 500 mg of B1 and magnesium and the dizziness and constipation went away in 24 hours. Having diarrhea though.
I’m getting results I need from mega dosing B1 to function normal, but this is in conflict with the low and slow plan reconstituting with no immediate results.
D-Ribose gave me an abundant amount of energy that was life changing. The energy I enjoyed for once, left my system by the fourth week and I can’t get it to work again. Genova labs from last August show I have no Mitochondria dysfunction. I’m in ketosis. Creatinine is 6.5 Pryuvic 17, and Lactic Acid 3.0. I had 6 Meyers cocktails this summer and they didn’t make me feel any better. I’m getting RBC tests run to see whats active, but trying to finesse treatments while waiting and getting accupuncture 3x’s a week.
I eat meat, vegetables and fruit. stopped eating chocolate, but do I stop eating low sugar fruits too?
Could a B1 tolerance develope?
I suspect my supplements and hormones may not work because of the B1 deficiency and under methylation?
Are there consequences with mega dosing B1, when folate snps occur?
Sometimes I think I have wet and dry beri beri or maybe Wernickes?
Should I see a cardiologist or neruologist at this point?
Thoughts the blank stare, losing motor function, loss of high frequency hearing?
You have classic beriberi. When you got such a result from “megadose B1”, why on earth did you cease using it? Resume your B1 and continue on a daily basis, and add magnesium.
My doctor felt I was having a paradox reaction, due to diarrhea in bed, after the initial dose of 600 mg. He recommended lower dosing, but I went immediately back on 600 mg. There was no way I could function with POTS. Luckily my doctor used to know you and respects whatever you say and let me increase dosing.
Once reintroducing 600 mg, it created an intense lucid dream, it felt like I was flying out of bed. POTS was gone in six weeks. Increasing cough and leg cramping reduced by 90%. A1C is below pre diabetes range for the first time in five years. Blurry vision gone. My doctor advised that my brain fog would lift eventually, and sure enough the fog started lifting after only five months. Now dosing 1,000 mg at seven months the fog is still lifting, I notice things I didn’t “see” before and have more energy to do things I didn’t have the energy to do in the past.
Through further testing – ETKA, methylation and citric acid cycle panels and reviewing snps, my MD is able to target what’s missing, what’s working and what’s being blocked. Low SOD, catalase and B1 were contributing to the cascade of recent symptoms. I will never do ozone therapies again, even after I increase the enzymes. The partial ETKA proved the need for an increase in B1, another lab shows the mega dosing is also depleting CoQ10, biotin and B5.
My lipids and hormones still need work but I feel better so much better off high dose T3. For 20 years I had been throwing money away trying to activate up 30 supplements a day without success. The RDA wasn’t enough and past labs mislead me to believe my B1 levels were normal when it wasn’t.
Over the summer I went to a handful of specialists and not one MD was willing to respect or show any intellectual curiosity to learn more about TD, even after all their hypothesis and testing was negative. As an adjunct to the supplementation, I kept going to a master Chinese acupuncturist, who also diagnosed me with TD by just touching my pulse and listening to my symptoms. With regular treatments he was able to relieve chronic joint and GI distress. I told him I was willing to try herbs, but he said all I need to do is continue taking B vitamins instead.
With a regime effectively for the first time, it’s an exciting experience to know my body can heal naturally through nutrition and bodywork. Forever grateful to these informative blog posts and the help of the doctors.
This is a very important post. Thank you Karen. You gave me the most important clue and I want to talk about it for this post. She reports that she has a defect in a gene known as SLC 19 A3. This codes for a protein that is a transporter of thiamin and folate. The genius of the body is the manufacture of proteins, some of which act as enzymes, some as transporters and many other things. The vitamin has to be attached to a transporter for delivery into the cell and the absence of this particular transporter is now known to be the cause of biotin/thiamin basal ganglia disease. Basal ganglia are important gadgets in the brain. This disease is responsive to thiamin and biotin. Biotin is one of the B vitamins. There are two things that Karen needs to do. 1. Obtain Lipothiamin, a form of thiamin that does not require the transporter. 2. Since your doctor appears to be aware of your problem, ask him to look up some information on this disease which is responsive to biotin and thiamin. What interests me even more is that Karen was raised on white rice, the food that has been known to cause beriberi for thousands of years. She also has “ketosis” which means that she has been burning fats instead of carbohydrate. My curiosity is stimulated. I question whether the multiple gene abnormalities that Karen describes were inherited or whether it was a combination of inherited risk coupled with high calorie malnutrition in the form of white rice.By reading this explanation of great complexity, the reader should come to the conclusion that our present state of medical care is a shambles. The many symptoms that have been generated in Karen are absolutely typical of energy deficiency and thiamin deficiency seems to be a major cause of disease
Thanks for pointing out the cause of basal ganglia disease, I do have issues with teeth grinding and OCD runs through family. The doctor was initially concerned that my folate might get used up with mega dosing but it was the biotin, which I am definitely increasing and will continue follow research with the doctor.
Thanks for the post. The story above is very similar to mine and I appreciate you socializing the issue. I can relate to the waxing and waning of symptoms over days and weeks. I now have salt cravings, POTS/dysautonomia symptoms, fatigue, panic attacks, etc. I was 5’11’ 160 lbs before I became ill 3 years ago. I now weight 124 lbs. I shared some of my story in the comments field of the article Navigating Thiamine Supplements. I am trying to find a way out of this mess. I hope that Thiamine replenishment is the answer, but as stated previously, I continue to feel like I am flying blind due to lack of knowledge.
Unfortunately, you are flying blind! This is because the physicians that you have been to have two biases.
1. They absolutely refuse to believe that thiamin deficiency occurs in America in spite of the huge intake of sugar, carbonated beverages, alcohol, chocolate etc. We have known for years that this excess of carbohydrate junk induces thiamin deficiency.
2. They do not recognize the polysymptomatic nature that results from energy deficiency. The customary laboratory studies, with some exceptions, are normal and they conclude that the symptoms are generated by the patient’s imagination and called psychosomatic.
I advise you to look up my books on Amazon by typing in my name, Derrick Lonsdale. You will find the latest one very technical and much more expensive than “A Nutritional Approach to a Revised Model for Medicine”, written for the general reader.