thiamine deficiency

Beriberi is Alive and Well in America

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Readers of this website must surely be aware that the American medical profession completely resists the possibility of vitamin deficiency as a cause of any disease in America. This is so deeply ingrained that anybody claiming such a diagnosis is considered a fool. This seems to be particularly addressed to the classic vitamin B1 deficiency disease, long known as beriberi. It is unfortunate that we use a Chinese word that, translated to English means: I can’t. I can’t. It is the expression of the profound associated fatigue. There is good reason for denial of its modern existence. It has always been common in countries where rice has been the dietary staple. It existed unrecognized for centuries. In fact, the incredible intricacies of this complex disease took many years to unravel, much of which was performed in China and Japan where there was an obvious interest. It was a series of important historical events that led to its final solution and the history is fascinating. I really think that it is an example of the proverb “those that forget history are condemned to repeat it”. For example, groups of factory workers developed their first symptoms of the disease together after an exposure to sunlight. “Epidemics” of the disease occurred in the summer months. It was only natural that the investigators at that time had concluded that beriberi was an infectious disease. Their search for the responsible micro-organism was a futile endeavor.

The explanation can only be provided from modern knowledge. We now know that ultraviolet light imposes a stress on the human body, requiring mobilization of energy in order to meet it. For example, a car requires more energy to climb a hill. The hill is an analogy for “stress”. The groups of workers described above were in a state of mild deficiency of the vitamin and the stress of the sunlight precipitated full-blown disease, simply because of lack of extra energy required to adapt to the stress. Thus, any form of stress has to be considered in relationship to genetic risk and nutrition if and when the symptoms of beriberi are precipitated.

With this preamble, let me describe some of the clinical experiences that I have been exposed to. First of all, I was lucky enough to be able to think about health and disease in my position in a multi-specialty clinic. I came to the realization that the human body is a wonderful “machine” where the coordination of 70 to 100 trillion live units called cells, depends on chemical energy that has to be transduced to electric energy in order to carry out cellular function. Not only that, I had recognized something that is taken for granted today, that brain cells have an extravagant use of energy. The case that precipitated my lifelong interest in thiamine (vitamin B1) was a six-year-old child who had intermittent brain disease that had confounded all the studies and tests applied in the search for a solution. To put it simply, it was a biochemical approach that showed that he and his brother had a genetically determined condition that, for the most part, allowed them to pursue a relatively normal childhood life. However, each episode of spontaneously resolving brain disease left a little bit more permanent damage. The disease was invariably precipitated by an exposure to a form of stress, represented by a simple viral infection, on one occasion by a mild head injury, and even after an inoculation.

With the help of John Blass M.D. who was working at the National Institutes of Health, we were able to prove that these boys represented the first example of what came to be known as vitamin dependency. In order to prevent brain disease, both of these children required enormous doses of thiamine, but if they were affected by any form of stress such as a viral infection, the daily dose of the vitamin would have to be doubled or tripled in order to prevent a brain disease episode. I came to understand that under these circumstances I was using thiamine as a drug and that it was not a matter of simple vitamin replacement. It was an early example of epigenetics, the relatively new science concerning the way nutrition and lifestyle affect our genes.

You have to understand a very simple idea: thiamine and magnesium are known as “cofactors” to a series of enzymes that represent the machinery of energy production. Both the cofactors are derived from nutrition and have to be bound to their enzymes by a genetically determined mechanism. Not only that: thiamine has to bind to a protein known as a thiamine transporter. The transporter is also genetically determined and conveys thiamine into the cell. All of this takes place in thousands of minute organelles called mitochondria. I refer to these organelles as the “engines” of our cells. That is why glucose can be compared with gasoline in a car engine. Like an excess of gasoline chokes the engine, an excess of glucose chokes mitochondria. Thiamine and magnesium can be compared to a spark plug that ignites the gasoline. Perhaps the reader can begin to understand that this vitamin deficiency disease can literally develop any symptom anywhere in the body according to the distribution of the deficiency and its degree. The brain, heart and nervous system are the most oxygen demanding organs so it is not surprising that they are the first to be involved in thiamine deficiency.

Additional Cases of Thiamine Deficiency

My colleagues knew of my interest and although I was a pediatrician I was asked to comment on the following case. A 67-year-old anesthesiologist at a hospital in Columbus, Ohio came down one day with “a heart attack”. He was subjected to catheterization of the heart that was found to be completely normal. Meanwhile, his son was a medical student and having researched his father’s symptoms, he claimed that the disease was beriberi. The patient was referred to Cleveland Clinic and I was asked to comment on the situation. I found that when he went to his garage to drive to the hospital he would be afflicted by a series of dry heaves. This alone would immediately call to question the possibility of thiamine deficiency. He would give the anesthetic for a series of cases, after which he would go to the pediatric ward and cut himself a large piece of chocolate cake. On returning home, he was too tired to eat dinner and would go to bed, only to repeat the performance the next day. He returned to Columbus with the advice that the patient’s son was correct. I never received a follow-up and don’t know how he was treated but I later heard that he had died. I suspect that he was, in fact, given thiamine in too large a dose that overwhelmed his fragile metabolism.

My next experience was with a brilliant pathologist who was well known in the specialty. She told me that she had extreme fatigue. In fact, a few days previously she had been driving to work but felt so ill that she had turned round and gone home. I discovered that she had a chocolate box in every room in the house. As she went around from room to room she would consume one of the chocolates in each box. I advised her to stop doing this and take a supplement of thiamine, whereupon she rapidly recovered. Note that this was purely a hedonistic urge and had nothing to do with her three meals a day routine.

Ondine’s Curse

A mythological character was a water nymph who supposedly lived in a puddle. She fell in love with a mortal who jilted her and she cursed him with the loss of automatic breathing when he was asleep. There is a disease known as “Ondine’Curse” where this form of breathing ceases, usually at night and the patient dies. So one day I was having lunch with one of the Ear Nose Throat surgeons who knew of my interest. He had seen a woman in the intensive care unit who had stopped breathing and he was called to put in a tracheostomy. He suggested that I should view the case. She was under the care of a rheumatologist and she had had a history of periods of unconsciousness as well as joint pain. In using my knowledge of chemistry, I was able to show that she had thiamine deficiency and began treatment with thiamine.

During her clinical recovery she developed a profound anemia which proved to be due to a deficiency of folate. The importance of this is that her brain was affected by thiamine deficiency but when she was treated with the vitamin, her energy dependent metabolism increased. This exposed a previously adequate sufficiency of folate related to her slow metabolism. The increasingly efficient metabolism stimulated by thiamine required more folate to meet the new demand. She was a chronic smoker that had contributed to the metabolic changes in brain function that precipitated a disease that had gone unrecognized for years. I remember visiting the rheumatologist to ask her whether we could conference the patient to expose this information. She obviously thought that it was an absurd idea and refused to consider a meeting of physicians for further discussion. I learned something else from this patient. She was discharged from the hospital taking supplements of thiamine and folate. When she returned for review, the paralysis in her legs was worse and she had developed a rash on her arms that may occur occasionally in association with deficiency of vitamin B12. It has long been known that B12 and/or folate deficiency could individually be responsible for pernicious anemia (PA). However it had also been known that folate supplementation could not be given on its own for folate deficient PA. It had to be given with vitamin B12 and I had forgotten this. I gave her an injection of vitamin B12 and over the next few days she had some fever and muscle pain but the rash disappeared and she felt better.

The Complexity of Treating Vitamin Deficiencies

I provide these details to show that an understanding of vitamin deficiency disease introduces complexities that require study. When she began receiving thiamine and became clinically worse, it would be easy to blame it as a “side effect” that required administration of the vitamin to be stopped. A physician must first of all have enough knowledge to suspect the possibility and then apply the necessary tests. Obviously, if the collective psychology refuses to accept that possibility, the complaints of the patient, together with the clinical observations of the physician, will be treated symptomatically without a full recognition of the underlying cause. My exposure to a case for which I had no medical responsibility provides an example, for I was merely a visitor. I heard from her that she had been diagnosed with heart disease. She went on to say that her heart rate had dropped to 30 beats a minute, an extraordinarily dangerous situation for which she had received the drug atropine. Atropine blocks the nerve mechanism into the heart, thus controlling the danger symptomatically. She had then been given a diuretic drug and she went through an agonizing 24 hours of almost continual urination. It was clear to me that this was a dramatic exposure of thiamine deficiency heart and nerve disease. She had in fact “wet beriberi”. It has been referred to as “wet” because of the profound collection of fluid in the body and that had been treated symptomatically with the diuretic. The point that I am trying to make is that although the patient had been treated successfully with drugs, the underlying cause had not been recognized. These are uncommon cases, but I am claiming that they are the end-point of years of nutritional and medical neglect and yes, medical ignorance.

Because thiamine deficiency has its major effect in the lower part of the brain, the earliest effects are those of a deregulated autonomic nervous system (ANS). The reader will remember that the ANS conducts the traffic of body organs under the command of the brain. It consists of two basic systems, one of which stimulates action and is called sympathetic. The other one stimulates rest and is known as the parasympathetic. An early symptom of thiamine deficiency is an overdrive in the parasympathetic system, whereas at a later stage of the disease there is usually an overdrive of the sympathetic system. Accepting this factor, it can easily be seen that the patient described above, whose heart rate was drastically slowed, had been endangered because one of the nerves to the heart had carried an overdrive of parasympathetic activity. This, accompanied by a huge collection of fluid in the body, was characteristic enough to look further for the ultimate diagnosis.

Common Presentations of Thiamine Deficiency: The Walking Sick

Looking back at the history of finding the solution to this disease, it is known to have a long morbidity and a low mortality but with a long life of chronic illness gradually leading to some form of mental or physical crippling. In the elderly patient it is often attributed solely to aging. In the 1940s an experiment was carried out in a group of human subjects who were provided with a moderately deficient thiamine diet. Their symptoms were characteristic of those that are presently regarded by most physicians today as psychosomatic. They were irritable, quarrelsome and experienced heart palpitations, headaches, loss of appetite, insomnia, diarrhea or constipation, chronic fatigue and/or intolerance to heat and cold. The vast majority of patients that I treated when I was in practice had a polysymptomatic presentation of this nature, many of whom had been doctor shopping without relief. I was dealing with what I call the “walking sick”, a large group of patients that are haunting the offices of physicians throughout America. Sometimes they had been given a named diagnosis but had not benefited from drug treatment.

The behavioral characteristics of children, particularly those with ADD or ADHD, are dietary in origin, often coupled with some form of genetic risk, not the least of which is superior intelligence. They are being treated symptomatically, but I offer the possibility that failing to recognize these symptoms as nutritional in character may be a failure to recognize them as the forerunner of chronic neurological or heart disease. It is a reflection of high calorie food ingestion overwhelming the action of non-caloric nutrients that enable the necessary synthesis of cellular energy for function, particularly in the brain. In our book “Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition”, we note that our present culture is cursed with a hedonistic ingestion of high calorie malnutrition, responsible for much loss of health. In fact, I have suggested that it is the equivalent of what happened to the ancient Romans whose wine tasted sweet because of lead infiltration from the glaze used in their wine containing jars. They did not know that they were suffering lead poisoning. We don’t seem to grasp the danger of sugar. Each symptom, as it appears, is treated symptomatically with a medication. Rarely is there an interest by the physician concerning diet, particularly the ingestion of empty calories consumed socially. Given the challenge of hedonism, it seems to be part of life joy, particularly in the elderly, to indulge in all the dietary aspects of sweet, sweeter and sweetest. However, it is inappropriate to fail in recognizing the symptoms that might or might not develop as a result. If one or more of the many symptoms is recognized and the patient informed, it is then his/her choice to make the necessary changes.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Photo: Seated Youth by Wilhelm Lehmbruck 1917. Edited. Wilhelm Lehmbruck, PDM-owner, via Wikimedia Commons.

This article was published originally on April 11, 2019.

Rest in peace Derrick Lonsdale, May 2024. 

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An Over Medicated and Chronically Ill Millennial

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Frequent Infections, Antibiotics, and Asthma

As I’ve reflected on my current health challenges, I’ve come to the realization that I need to head back in time to my earliest years. Like many kids born in the early 90s, I was the first to receive a slew of vaccinations that were previously never given to children. I suffered from frequent “earaches” that led to multiple courses of antibiotics before kindergarten, and by the time I reached middle school, I was taking yearly courses of antibiotics for all sorts of things: colds, sinus infections, acne. It was around this time that I was also diagnosed with exercise induced asthma. I remember almost passing out in a lacrosse practice in 7th grade, and before I knew it, I was put on Advair (daily inhaled steroid) and was hitting the albuterol 2 or 3 times before a workout. My allergies also raged during this time.

Anxiety and Doctor Prescribed Benzodiazepine

I started getting increasingly anxious in early high school. I remember getting what I now know are symptoms of a panic attack in late middle school. Though part of this was due to the fact that I was hiding my sexuality (and hiding it well), I also realize that I had been slamming my adolescent body with drugs, vaccinations and the standard high sugar American diet for 14 years at that point.

My anxiety caused sleeping issues and I was placed on Ambien when I was 16. When I was withdrawn from that, the anxiety got worse (I know now it was Ambien withdrawal), and I was finally sent over to a psychiatrist. After listening to my description of panic attacks, she placed me on Klonopin, one of the most potent benzodiazepines on the market that should never be used for more than a few weeks. She told me to take up to four a day (an insane dose) and that like a diabetic, I needed GABA enhancement, and I would have to take these for the rest of my life.

At 17, I was buzzing on a benzodiazepine every day. I remember that it actually felt quite good and erased all worry. But then I began to experience one of the most terrifying side effects of long-term benzodiazepine dependence: I was getting dementia! I couldn’t remember things for tests or quizzes no matter how hard I studied. When I brought this up to the psychiatrist, she assured me that a little amnesia was a common benzodiazepine side effect, but that the benefits outweighed this. Essentially, giving a teenager dementia outweighed him having anxiety.

Benzodiazepine Withdrawal and Repeat Concussions

When I decided I needed to come off the benzodiazepine after taking it for a year, her instructions were to taper over one week and then jump. Now, this was 2010, and the internet was alive and well at that point. Upon doing just a little bit of research, I knew this woman was insane. All recommendations were that benzodiazepines needed to be tapered over the course of many weeks if not many months. I found a benzo support group online that became my lifeline for the next 4 months as I gradually weaned myself off the drug with the support of my parents and a new primary care doctor. Throughout this time, the one drug that I actually credit with saving me is marijuana. Without it, I’m not sure I would have done as well as I did getting off the drugs and then staying off of them.

I went right off to college that fall, which in retrospect was a miracle. I struggled a lot that first year. I was experiencing post acute withdrawal syndrome (PAWS) from the benzodiazepine and almost flunked out. I gradually improved but was still dependent on nightly marijuana to go to bed. In 2014, I finally stopped smoking weed and was 100% drug free.

That summer, I ended up getting my first concussion, though I suspect I had many others growing up as I played soccer and lacrosse. As if one wasn’t bad enough, I somehow ended up getting another the next summer in 2015 when I was at the beach and hit my head on a car door. I was later told by a neurologist that once you have a concussion, it becomes significantly easier to get a second, and then a third, and so on.

I had long suffered minor symptoms from benzodiazepine withdrawal that never went away, like tinnitus in my ears, an inability to take GABA drugs without reactivating withdrawal symptoms, and other neurologic symptoms that always made me feel “different.” The concussions added to this complex situation and I would have what I can only describe as seizures during times of stress or intense workout. It felt like my brain had electric current running through it.

Around this time, I also received the first injection for the Gardasil vaccine. I never followed up with the rest of them because of how off I felt that the first few days after getting it. Only recently have I learned about the severe damage that Gardasil can cause.

By 2016, I had been doing a paleo/plant-based diet and felt generally well, but the symptoms from both benzo withdrawal and my concussions persisted. In 2017, I started using CBD oil, and I found that it relieved a lot of the symptoms. It calmed my brain down significantly. I also began using Truvada (HIV medication) during this time as PreP. The one issue that never went away throughout all of this was my anxiety and panic. I was prone to situational panic attacks that felt like my fight/flight system was in total chaos.

A Complete Crash with Tinidazole

Despite feeling okay in 2018 and most of 2019, my whole world was turned upside down again in the fall of 2019. I contracted some sort of stomach bug that wasn’t going away, and my doctor placed me on a drug called Tinidazole, the sister drug of Metronidazole (Flagyl). I haven’t felt the same since that day.

The symptoms came on almost immediately. Dizziness, depression, increased anxiety, neuropathy in my hands and arms. I became convinced that I had ALS because my hands weren’t working right. It was also unlike me to ever assume something as terrible as a fatal diagnosis, but my brain was in total disarray.

Two weeks after taking the Tinidazole, I had to go back on antibiotics for wisdom teeth removal. Immediately after the surgery, I went into one of the most horrendous panic attacks of my life, in part because I had been injected with novocaine about 20 times. I had to be wheeled out of the doctor’s office because the panic had been so bad. Looking back now, there is a similar case study in Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.

Things only got worse. By the end of the penicillin, my body was in a total spiral. I began having daily panic attacks that I can’t even describe. My body temperature was low, my fight/flight system was in disarray, I was depressed, I couldn’t think clearly. There were nights when I wouldn’t sleep at all and be in total fight or flight mode. I now know that I was going through Tinidazole toxicity that had gradually gotten worse over a few weeks. Combined with the penicillin, it was a recipe for disaster.

The strangest symptom that has come out of this experience is hypoglycemia. My blood sugar is tanking to dangerously low levels during the day unless I am extremely diligent about eating. There have been a few times that I have almost blacked out. This isn’t a common symptom of Metronidazole/Tinidazole toxicity, but I don’t know where else it could have come from.

Where I Am Now

I’ve improved a bit, but I’m still having symptoms like dizziness, hypoglycemia, altered mental state, neuropathy and a total dysfunction of my fight/flight system.

Looking back at my long and complicated history, I’ve discovered a few things in my research:

  • Early and frequent antibiotic use is linked to anxiety and depression
  • I ate A LOT of sugar throughout my life and my thiamine stores were probably always being hit hard and my mitochondria have probably been fighting this battle my life
  • The benzodiazepine and Ambien have caused deep alterations to my nervous system/GABA receptors that became less noticeable with time but will never fully heal
  • Concussions cause a cascade of effects that damage mitochondria function and lead to other semi-permanent neurological issues
  • Truvada (PreP) also harms mitochondria
  • Tinidazole plummets your thiamine

Thiamine Deficiency and Problems With Paradox

I’d like to start Dr. Lonsdale’s protocol for high-dose thiamine, but I encounter painfully difficult paradox symptoms. I have tried to start with a low dose (less than 10 mg) twice now, and always end up having to stop because it gets so bad. The “heart attack” and “seizure” symptoms are simply too frightening and I’m not sure what’s actually going on in both my brain and heart. I’d like to find a functional doctor that could possibly work with me to measure what’s going on when I take thiamine.

I’m also in the process of working with doctors to run tests on my hypoglycemia issues.

The only other thing I’ve considered is a fecal transplant. Since I’ve been on so many antibiotics, I’m convinced that some of my issues may stem from altered gut microbiota.

Lots of people see improvement from Metronidazole/Tinidazole toxicity over the course of 6-12 months. But unless I can take action, I suspect my thiamine issue will remain.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

This story was published originally on March 11, 2020.

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Hyperglycemia and Low Thiamine: Gateways to Modern Disease

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Thiamine deficiency, hyperglycemia gateway to disease

In Thiamine Deficiency in Modern Medical Practice and Threats to Thiamine Sufficiency in the 21st Century, I introduced the concept that thiamine deficiency underlies many common conditions plaguing modern healthcare and identified exposures and mechanisms threatening thiamine stability. In this document, I will tackle the pattern of metabolic changes associated with the modern dietary practices leading to thiamine insufficiency, and resulting in, and sustaining hyperglycemia.

Hyperglycemia Through a Different Lens

Hyperglycemia, and the metabolic dysfunction it initiates, is a worldwide problem that has reached epidemic proportions. Due in part to overconsumption of sugary foods and in part to decrements in mitochondrial capacity that drive cravings for sugars, hyperglycemia fuels the metabolic derangements underlying obesity, type 2 diabetes, cardiovascular disease, and more recently, research suggests Alzheimer’s disease as well. These interconnected disease processes represent the top leading contributors to morbidity and mortality.

Conventional wisdom attributes these disease processes to over-nutrition and the solutions that follow involve the restriction of calories and/or the medical manipulation of the pathways initiated by hyperglycemia. Admittedly, excess caloric intake is a component, but this nomenclature suggests an overly simplified concept of nutrition; one where all that matters is calories consumed relative to calories burned. This view obfuscates the role of micronutrients in the conversion of these calories/foods into adenosine triphosphate (ATP), the energy source for all cells. It ignores the fact that the aberrant cascades so commonly associated with hyperglycemia, are merely adaptive responses to the lack of micronutrient availability and consequent reduction in ATP. Finally, through this lens, the entirety of the blame for overeating is placed upon the individual.

In reality, while the initial choices that precipitated the hyperglycemia may have been the individual’s responsibility, once these patterns become entrenched molecularly, the resulting decline in ATP drives the cravings for high-calorie foods to compensate. In a very real way, these patients are starving despite sufficient or even excessive caloric intake. It is high-calorie malnutrition, but malnutrition nevertheless. Viewed from perspective, hyperglycemia is not a disease of excess, per se, but rather, one of deficiency. As such, the opportunities for treatment are expanded beyond the typical trend to reduce, block, or otherwise override a particular pathway, and shifted towards a rebalancing of metabolic health. Here, the question is not so much which pathways should be blocked to stave off the associated deleterious effects of hyperglycemia, but rather, what does the patient need to more effectively metabolize foods into energy? What is missing from his/her diet that will reduce the body’s drive for sugars as its primary energy source? In other words, what does he or she need to be healthy?

To answer those questions, one has to look more closely towards bioenergetics and ask what micronutrients are needed to convert consumed foods into ATP and whether or not the patient’s diet provides those nutrients. Research suggests that the energy metabolism enzymes from the cytosol through the mitochondria require at least 22 micronutrients to utilize the macronutrients from consumed foods to produce ATP. Many of these micronutrients are in short supply with high carbohydrate diets (see Threats for details). Thiamine is top among them, and because of its gateway role in energy metabolism, thiamine insufficiency is a significant contributor to the disease processes currently attributed to hyperglycemia.

Thiamine, Sugar, and Energy Metabolism

Thiamine is a required and rate-limiting co-factor to five enzymes involved in energy metabolism, including those at the entry points for the glucose, fatty acid, and amino acid pathways (transketolase, pyruvate dehydrogenase complex [PDH], 2-Hydroxyacyl-CoA lyase [HACL], and branched-chain alpha-keto acid dehydrogenase [BCKAD] and alpha ketoglutarate dehydrogenase [a-KDGH]. Insufficient thiamine leads to poor glucose handling resulting in hyperglycemia. It also induces poor protein and fatty acid metabolism resulting in the elevated branch-chain amino acids and dyslipidemias common to patients with hyperglycemic metabolic syndrome.

Conversely, high carbohydrate diets increase the demand for thiamine, which, if left unchecked, ultimately leads to thiamine deficiency, hyperglycemia, disturbed protein, and fatty acid metabolism. In healthy, thiamine-sufficient adults, high carbohydrate consumption results in a significant reduction of mean plasma thiamine concentrations in just over three weeks. Over the longer term, a high carbohydrate diet initiates many changes in thiamine and energy metabolism that ultimately result in reduced thiamine availability, higher circulating glucose, and poor energy metabolism. Thus, whether by cause or consequence, low thiamine and hyperglycemia are inextricably intertwined. One eventually leads to the other.

Altered Metabolism and Mechanisms of Damage

Under normal glycemic conditions and where thiamine is sufficient, excess sugars from glycolysis are shuttled through the pentose phosphate pathway via the thiamine-dependent enzymes transketolase to PDH and onward through the mitochondria. Under conditions of high carbohydrate intake/low thiamine, however, these sugars are diverted away from the primary metabolic pathways used for ATP production, inducing a net decline in ATP, and away from the synthesis of ribonucleotides and NADPH, substrates for RNA/DNA, and fatty acid metabolism and ROS detoxification respectively, to secondary metabolic pathways, specifically, the polyol/sorbitol, hexosamine, diacylglycerol/PKC, advanced glycation end product (AGE) pathways. Research suggests the upregulation of these pathways underlie the macro-and microvascular cell damage attributed to hyperglycemia, related cardiovascular and neural damage, while the decrements in ATP drive the general metabolic dysfunction associated with obesity and a host of other inflammatory conditions.

The high carbohydrate/low thiamine diet disturbs amino acid and fatty acid metabolism as well. Elevated branched-chain amino acids (BCAA) are common with hyperglycemia. Indeed, elevated BCAA may predict impending diabetes. Underlying the elevated BCCA is impaired catabolism due to a genetic or environmentally triggered defect in the BCKAD enzyme. BCKAD is dependent upon thiamine and elevated BCCAs are a manifestation of deranged energy metabolism precipitated by thiamine insufficiency. Genetic aberrations of BKCAD display similarly elevated BCAA, though typically much earlier, and respond favorably to thiamine supplementation.

With chronic hyperglycemia, the increased branched-chain keto acids, a secondary effect of poor BCAA catabolism, lead to excess short and medium-chain acylcarnitines. Surplus acylcarnitines increase the flux of fatty acids through the b-oxidation pathway beyond its capacity. This results in incomplete fatty acid metabolism, the dyslipidemias noted with hyperglycemia, and the formation of the pro-inflammatory diacylglycerol and ceramides that reinforce insulin resistance.

All of this, of course, comes against the backdrop of declining ATP capacity. Under conditions of insufficient thiamine/hyperglycemia, ATP production may be reduced up to 70% depending upon the severity and chronicity of disordered metabolism, the organ or tissue in question, and the model used to test. Decrements in the brain and heart, because of their high energy demands are the most severe, while reductions in the GI system and musculature present most noticeably in the early stages. Fatigue, weakness, and GI disturbances are among the earliest and most common unrecognized symptoms of the initial stages of insufficient thiamine.

Correcting Metabolic Dysfunction With Micronutrients

Ideally, ill-health would precipitate dietary changes, but in the case of hyperglycemia, particularly when it is chronic, the altered metabolic pathways and reduced capacity to synthesize ATP from consumed foods make this prospect difficult to impossible for some. Based upon thiamine’s role in this process, a more amenable approach might be to address thiamine and other micronutrient deficiencies first. Research from multiple disciplines demonstrates the remarkable improvement in metabolic capacity with thiamine repletion suggesting that simply replenishing this and other micronutrients may slow or reverse the progression of disease in these populations. Below are a few of the hundreds of studies published on this topic.

  • Thiamine reduced or reversed hyperglycemia-related activation of the secondary glucose pathways (polyol/sorbitol, hexosamine, diacylglycerol/PKC, AGE) via upregulation of the PDH enzyme. It improved cardiac contractility, reduced cardiac fibrosis and decreased the expression of the mRNA-associated proteins (thrombospondin, fibronectins, plasminogen activator inhibitor 1, and connective tissue growth factor), and prevented obesity in the overfed arm of an experiment using streptozotocin-induced diabetes in rats.
  • In streptozotocin (STZ)-induced diabetic rats, high-dose thiamine and benfotiamine (a synthetic S-acyl derivative of thiamine) therapy increased transketolase and PDH activity increasing ribose-5-phosphate and reduced microalbuminuria and proteinuria by 70-80%. PKC, AGE, and oxidative stress were all reduced significantly.
  • In STZ-induced diabetic/leptin mutant type rats, benfotiamine improved heart function and prevented hyperglycemia-induced, left ventricular end-diastolic pressure increase and chamber dilatation in both models.
  • Benfotiamine administration 150mg thiamine daily thiamine significantly reduced blood glucose within a month, in a randomized, placebo-control trial of 24 drug naïve T2D diabetics.
  • In a three-month randomized placebo controlled trial, 50 T2D patients in the experimental arm were given 3X 100mg thiamine per day. Thiamine therapy significantly improved microalbuminuria, glycated hemoglobin, while decreasing PCK levels. Markers of oxidative stress and fibrinolysis were non-significant.
  • After 45 days of benfotiamine and vitamin B6 supplementation, 19 of the 22 patients enrolled in the study saw statically significant reductions in pain, symptom scores, neurophysiological and biological markers of diabetic neuropathy.
  • A 6 month randomized trial with 60 T2D with medication-controlled blood sugar and 26 age – and BMI-matched controls found that 100mg thiamine daily, significantly corrected lipid profiles and creatinine levels.
  • One time administration of 100mg IV thiamine, improved endothelium-dependent vasodilatation in 10 patients with TD2 during an acute glucose tolerance test.
  • One week of IV thiamine administration at 200mg/day in six patients with heart failure (HF) and who were also receiving diuretics (diuretics deplete thiamine) improved left ventricular ejection fraction (LVEF) in four of those patients from 24% to 37%.
  • A randomized, double-blind, placebo controlled study of HF patients on diuretic treatment found that 300mg/day oral thiamine improved LVEF significantly.

Thiamine Insufficiency Versus Deficiency

Among the more common misperceptions about thiamine is that deficiency is delineated by laboratory testing. While this is true for severe deficiency and when the appropriate laboratory tests are utilized, far too often, the insufficiency syndromes that present months to decades before frank deficiency is detected, are missed completely. This owes in part to the variability of testing methodologies and in part to the very framework from which we determine sufficiency and deficiency. Thiamine testing, like the tests for many micronutrients, carries a high false-negative rate and fails to consider the nature of micronutrient deficiency relative to need. The next paper in this series will addressing testing methods.

As outlined above and in the Threats document, several environmental variables increase the demand for nutrients, a diet high in carbohydrates is top among them. The increased demand will not necessarily or immediately test positive for deficiency. Rather, it will present symptomatically and must be suspected based upon the symptoms of deranged energy metabolism. In these cases, thiamine supplementation is done to support and correct reduced enzyme activity so that consumed foods may be more efficiently metabolized and converted into ATP. This then reduces the use of the less efficient and generally deleterious secondary metabolic cascades linked to the constellation of negative health effects associated with hyperglycemia.

Consider Thiamine

Thiamine is a safe, non-toxic, essential nutrient that has become increasingly difficult to maintain in the face of modern dietary practices and chemical exposures. Thiamine sufficiency is fundamental to energy metabolism, mitochondrial capacity, and thus, health. Consider thiamine in your practice.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

Image created using Canva AI.

This article was published originally on May 2, 2024.

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High Dose Thiamine Healed My Fatigue. How Do I Navigate Pregnancy?

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thiamine fatigue pregnancy

Downward Spiral, Upward Hope, Asking Advice

The year 2020 marked a big change for a lot of people. For me, it meant a downward spiral into intense fatigue, brain fog, and heart palpitations. Healing came in increments over the next three years until I found thiamine, which expedited my healing in six months. Now, I am considering pregnancy, but I need your advice. How do I navigate taking megadoses of supplements while growing a baby? How do I know when my healing journey is “complete,” and does that mean my supplement regimen ought to change? Any and all comments are welcome!

How It Started

It was early 2020 when I returned from a vacation from Thailand and got a stomach bug somewhere along the way home. I rested in bed a couple of days and mostly recovered, but had a lingering burning sensation in my stomach for the next month or so. I then noticed my stool started to smell strange and I experienced bloating after some meals. I went to the gastroenterologist, and within a month they had done an endoscopy and discovered erosive gastritis. I was put on a proton-pump inhibitor (PPI) and sucralfate to coat my stomach.

Two weeks on these medications and I felt immense brain fog and extreme fatigue, so much so that I felt like I would fall over in my chair at work. The fatigue hit me like a ton of bricks– I slept throughout the night and forced myself to take naps, and nothing helped shake the overwhelming fatigue. I took a few weeks off of work and tried to rehab myself at home, eating as much healthy food as possible (I was tracking 3,000 calories a day, which I felt I must need to get healthy again). I tracked all of my nutrients in an app and made sure I hit (and exceeded) the RDA for every nutrient (with the help of supplements). Still, things were not improving much, and I couldn’t even walk one stretch of the block without being utterly exhausted. It was during this time off of work where I felt so helpless and drained in every sense that I remember thinking, “this is what the beginning of dying feels like.” It scared me. But I honestly did not know what to do or where to turn.

A picture from July 2021 after a short hike. I felt horrible and my husband felt great :).

I knew the medications were not making me healthier (even if they made my stomach feel better), so I went off of them cold-turkey. The burning in my stomach became quite severe due to the rebound effect of getting off a PPI, but I pushed through, knowing that I needed my body to heal on its own.

The next three years brought incremental improvements, but still much suffering. Intense brain fog, insatiable fatigue that heightened post-exertion, and dysautonomic symptoms plagued me daily. I was waiting for a big break that seemed like it might never come. Little did I know, my time was coming in the spring of 2023.

How It Really Started

It would be easy to blame a stomach bug for all of my problems, but I now know that my nutrient stores have been taxed and depleted over many instances in my life. Here is a snippet of what led me to the crash:

– Childhood: Ear infections (antibiotics), chronic stomach aches, sugar consumption

– Adolescence: Traumatic brain injury (brain sheer, 3 days coma), mononucleosis, asthma

– Young adulthood: chronic UTIs (i.e., chronic antibiotics (including 3 separate Bactrim prescriptions and anti-fungals (fluconazole) afterward), several deaths in the close family (emotionally taxing), monthly naproxen for menstrual cramps, developed gluten sensitivity, shortness of breath (air hungry).

The stomach bug was simply the straw that broke the camel’s back. All of the stressors in my life (physical, emotional, etc.) depleted my body until it couldn’t retain a guise of “healthy” anymore.

My First (Unknowing) Megadose

Throughout the entirety of 2020, I experienced bloating and IBS symptoms. I managed the symptoms well enough with a low FODMAP diet, but one tiny piece of garlic, onion, etc. and I was ruined. I knew I wasn’t healed with this diet, but I didn’t really know how to heal, especially hearing that IBS is something you have to live with for the rest of your life. This scared me, but I wanted to see what answers may be out there.

I came across a study that claimed that the vast majority of participants taking a multivitamin, B-100 complex, and vitamin D3 were cured of their IBS within three months. It seemed like a miraculous and promising study, so I decided to try it myself. Lo and behold, around the three month mark, I was able to incorporate high FODMAP foods without experiencing bloating (it took a stretch of a few weeks to fully incorporate these foods as my body was adjusting).

Back then, I thought it was the vitamin B5 that was responsible for ridding me of bloating symptoms. Vitamin B5 is closely linked to gut health. Looking back now, I have a strong notion that I was helped due to the thiamine content in the B-100 + multivitamin. I megadosed without knowing it. And unfortunately, after about 4 months, I stopped taking the B-100.

My Second (Reluctant) Megadose

I visited a naturopath in the spring of 2021 to try to get more answers. I still had brain fog and fatigue, and had also developed a regular heart palpitation every ~15 minutes, which coincidentally happened after my second round of a certain vaccine. The naturopath prescribed many supplements, one of which was 150 mg of iron per day. I was shocked by this and thought that was wayyyy too much and was scared I would get iron overload, but he assured me that with my ferritin levels at a 9, it was desperately needed.

Within a week of supplementing with iron, I felt a big boost in energy and felt I had found the answer that I had been waiting for. While it did help, I reached a threshold of improvement that did not change despite continued supplementation with iron for over 1.5 years. The iron supplements did help with my heart palpitations, but I still had brain fog and fatigue. On a scale of 1-10, with 1 being my lowest point in the summer of 2020, iron brought me to about a 4.

My Third (Homecoming) Megadose

So time went on and I tried every supplement under the sun. I focused on vitamins and mitochondrial nutrients such as L-carnitine, alpha lipoic acid, CoQ10, and others, and I was able to live a life that looked kind of normal. But it didn’t feel normal. I was obsessed with finding the answer(s) to this dark cloud that had been engulfing me the past few years.

Until one day, just six months ago, in late April of 2023, a recommended video popped up on my YouTube homepage that changed my life. The video was from a smart lad named Elliot Overton talking about thiamine deficiency.

You probably know how the story goes.

I started with benfotiamine, because I could get it at the store, while I waited for my TTFD to arrive in the mail. I kept trying to press how much I could tolerate without too much headache/fatigue/brain fog, and I honestly can’t remember if I noticed an improvement in those first few days. Once my TTFD arrived though, within two days of supplementing I felt a rushing wave of beautiful relief come over me.

Finally. Finally! My answer had come. I wasn’t immediately better, but I knew improvement was on its way. It wasn’t long before I came across Hormones Matter, which brought me so much useful information! I began sleeping better. My dreams were more vivid. I was able to sweat more easily, something I didn’t know I had lost until it returned. The volume was turned down on my anxiety and breathing deeply was easier.

It took some adjusting and playing around with dosing to find out what would help me. At first, I could only consistently tolerate one 50 mg TTFD pill every-other day, or I would get a racing heart and worsened fatigue. I also noticed that after about a week of taking TTFD, I would start to feel drained, as if it wasn’t giving me that feeling of relief anymore. So what worked for me was to cycle TTFD, thiamine HCL, and sulbutiamine for one week each. That kept my feelings of “relief” heightened. I pretty much abandoned benfotiamine because, well, I had other stuff that was working and I didn’t want to change my routine.

Within about a month, I was able to take one TTFD per day. As time went on, I kept bumping up all of my doses for each type of thiamine. I would basically take a day to test how much I could handle, then try to sustain that higher new dose. By the end of July, I was taking 5-6 TTFD and 10-ish thiamine HCL (100mg each). I am not exactly sure with the doses. I believe I only made it up to 400 mg of sulbutiamine. At a certain point mid-summer, I dropped the sulbutiamine because it seemed to be making me feel depressed, even though it helped when I first began taking it. I also dropped the thiamine HCL. I felt that TTFD was more powerful and so I stuck with it. I no longer experienced a drop in “relief” symptoms and was able to take TTFD only without any adverse effects.

Somewhere between then and now I have worked myself up to 12-14 TTFD per day (600-700 mg). I have very little brain fog or fatigue and can work out without being drained the next several days. I feel pretty darn good most of the time. Of course, there are ebbs and flows, but overall, I am doing well.

In addition to the thiamine, I have been taking lots of support nutrients too, such as magnesium, multivitamin/B complex, selenium, molybdenum. Another major helper for energy has been 10-15 grams of creatine monohydrate per day. I eat a whole-foods diet with no added sugars.

My Fourth (Aha!) Megadose

Recently, I came across information by Linus Pauling, a Nobel Prize and Peace-Prize winner who championed high-dose vitamin C therapy for minor and major illnesses. I caught a cold around this same time, started high-dose vitamin C therapy, and was absolutely sold with the idea, as none of my symptoms really developed into much at all. While I’m not convinced of taking megadoses of vitamin C every single day, I am certain it is helpful during times of sickness.

Then I read about Orthomolecular Medicine, which uses high-dose vitamins for treating diseases (chronic, communicable, genetic), and it all made sense! I felt as though I had uncovered a secret to the world! I wouldn’t have believed it had I not experienced the “miracles” of megadosing first-hand, but now I realize that most, if not all, diseases can be treated with the right dose of specific nutrients for the right amount of time. I also realize that those doses are higher doses than what we think! And higher still! Yeah– even higher. And longer– yes, keep taking them. I don’t mean to oversimplify people’s illnesses, but rather to illustrate the power of high-dose vitamin therapy.

Then Versus Now

My healing journey is not quite over. I have tested positive for antinuclear antibodies since 2020, and my latest test (October 24, 2023) still tested positive (qualitative only). Finding out these results was a little disheartening, as I really thought my results would be negative. I have had less energy and some mild dysautonomic symptoms since receiving those results, which either means a) the power of suggestion has really gotten to me or b) I switched to thiamine HCL around the same time and it is not as effective as TTFD.  I am leaning towards the latter, but I wanted to give HCL more of a shot because the amount of TTFD I’m taking per day is getting expensive! And as a more recent update, the last two days I’ve tried Benfotiamine, which I have been very pleased with— my energy seems to be much better than with thiamine HCL.

I also just started alpha-GPC as a new supplement.

Here is some physical evidence that I am healing:

In one of my textbooks, I found that a B-vitamin deficiency (doesn’t say which B vitamin) causes a smooth tongue.

tongue vitamin B deficiency
Figure 1. Textbook images of vitamin B deficiency affecting the tongue.

I took a picture of my tongue in October 2020, and the second picture in October 2023. Notice the more prominent fuzzy (white/gray) projections in the second picture. These projections are quite blunted in the first picture.

Vitamin deficiencies and the tongue
Figure 2. Photographs of my tongue. Left: October 2020. Right: October 2023. The most prominent changes are on the sides and at the back of the tongue (more “fuzzy”). I believe these changes are in large part due to thiamine.

Hope for The Future

My husband and I are excited about the possibility of getting pregnant, especially now that I am feeling so much better. Having a child has been a long-time dream of mine, and while I was struggling with my health, I wasn’t sure if that dream could come to fruition. So now being in the place I’m in, I’m thrilled that we can think about having a child. I’ve had to tap the brakes on my excitement, because I don’t want to potentially cause any harm to a growing baby due to my megadosing of thiamine. So, I have a couple of questions.

Asking Advice:

  1. Does anyone have any research, personal, or hearsay information regarding the safety of megadose thiamine during pregnancy? If so, did the type matter (TTFD, thiamine HCL, Benfotiamine)?
  2. What is the maximum dose you reached for TTFD/thiamine HCL/Benfotiamine?
  3. Have any of you had any experience with weaning off of thiamine or stopping cold-turkey? I have gone a few days here and there without supplementing with no issue, but not longer than that. If so, was your health maintained, or was there a maintenance dose that sustained you?
  4. How did you know it was time to stop/decrease thiamine (if at all)?

Closing Thoughts

I just want to extend my heartfelt empathy for all of you who may be experiencing health struggles. Before these past few years, I sometimes had the arrogant thought that people could just be healthy if they avoided sugar and exercised. I thought their health struggles were their “fault”, to an extent, but I now recognize the complexity of health and the desperation in trying to find it once it is lost. I understand what suffering is and the feeling that there is no escape. I understand the feeling that no one truly knows what you are going through, even though they extend love and patience with you. I get it, and it sucks so much that this has to be a part of the human experience—but I have also experienced hope. A real hope. A hope that delivers what it promised. I could not have known even a day before taking thiamine that my time of deliverance had come. So please do not give up hope. Your day is coming.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

Photo by Tim Mossholder on Unsplash.

This story was published originally on November 7, 2023.

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Sleep Requires Energy

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sleep requires energy

It is widely believed that almost no calories are used during sleep. That is incorrect: while the body rests during sleep and energy consumption is not high, it is a long way from zero. A convenient way to measure energy use is known as the “metabolic equivalent” (ME). This is defined as the rate of energy used by a person sitting and awake, the “resting metabolic rate”.  A person riding a bicycle may be using five MEs; a runner, nine or more. A sleeping person uses about 0.9 MEs, so we burn calories when we are asleep about 90% as fast as while sitting on the couch watching television.

Energy conservation is important in sleep, but it’s expenditure is still required. It has been proposed that sleep is a physiological adaptation to conserve energy but little research has examined this proposed function. In one study, the effects of sleep, sleep deprivation and recovery sleep on the whole-body, total daily energy expenditure was examined in seven healthy participants aged 22+/-5 years.  The findings provided support for the hypothesis that sleep conserves energy and that sleep deprivation increases total daily energy expenditure. I read somewhere that an enthusiastic young astronomer decided that sleep was unnecessary and used his telescope for 13 nights without sleeping during the day. He became extremely ill, thus showing the importance of sleep in survival. The recognition that sleep is one of the foundations of athletic performance is vital.

Research in the general population has highlighted the importance of sleep on neurophysiology, cognitive function and mood. In a post on Hormones Matter, we reported several young people who had a post Gardasil vaccination crippling condition that turned out to be due to thiamine deficiency. All of them had been exceptional athletes and students before the vaccination. We concluded that the brain energy requirement for exceptional people put them at greater risk of succumbing to stress if their capacity for MEs was limited, either for genetic or nutritional reasons. We assumed that their thiamine deficiency before vaccination was marginal and either asymptomatic or producing trivial symptoms ascribed to other “medically more acceptable” causes.  The stress of the vaccination required an energy dependent adaptive response that precipitated fully symptomatic thiamine deficiency.  You might say that they were “weighed in the balance and found wanting” as the proverb says.

The Stages of Sleep

Sleep is a complicated process. The first sensation is known as “sleep latency” and registers the time taken from eye closure to falling asleep. The sleep cycle is then divided into five stages, each cycle lasting approximately 90-120 minutes. Stage one is known as light sleep. In stage 2 the brain is resting the parts used when awake. Stages 3 and 4 are deeply restorative. Stage V is known as rapid eye movement (REM) sleep and may be the most important part. Movement of the eyes behind closed lids is observed. The autonomic nervous system is activated for unknown reasons. It is in this stage when we dream and most sleep disorders occur.

Circadian Rhythm

The word circadian means “about 24 hours”. The circadian clock is a complex, highly specialized network in the brain that regulates its day/night metabolism and is a key for metabolic health. It is modulated by behavioral patterns, physical activity, food intake, sleep loss and sleep disorders. Disruption of this clock is associated with a variety of mental and physical illnesses and an increasing prevalence of obesity, thus illustrating that it is dependent on energy balance (production/consumption). Reduced sleep quality and duration lead to decreased glucose tolerance and insulin sensitivity, thus increasing the risk of developing type 2 diabetes. In other words there is a close link between circadian rhythm and available energy . I have seen patients who were unable to take the night shift at work because they were unable to adapt. The increase in obesity has been paralleled by a decline in sleep duration but the potential mechanisms linking energy balance and the sleep/wake cycle are not well understood. An experiment was reported in 12 healthy normal weight men. Caloric restriction significantly increased the duration of deep (stage 4) sleep, an effect that was entirely reversed upon free feeding.

Sleep Apnea

This condition is fairly common in the United States and is probably generally fairly well-known by most people. The patient stops breathing during sleep and may repeatedly awaken with a start. The disease was discovered because a woman reported that her husband kept waking up with a start because “he was affected by an evil spirit”. Fortunately, the physician took her seriously and it led to the studies that determined its cause. Many patients with, or at risk of, cardiovascular disease have sleep disordered breathing (SDB). These can be either obstructive because of intermittent collapse of the upper airway, or central because of episodic loss of respiratory drive. SDB is associated with sleep disturbance, hypoxemia, hemodynamic changes and sympathetic activation. Brainstem dysfunction combined with heart disease is the hallmark of the thiamine deficiency disease, beriberi.

What that means is that there are two types of sleep apnea. In the obstructive type, the tongue falls back into the pharynx and blocks the airway. In the one where there is loss of respiratory drive, the centers in the brain stem are compromised. It is these centers that completely take over the control of breathing when we are unconscious as in sleep. If their supervisory mechanisms fail, breathing ceases. Carbon dioxide concentration increases and stimulates the brain controls that restart breathing. Occasionally these mechanisms are so sick that breathing does not restart. Hence a form of  nocturnal sudden death follows. When we are awake we can override these centers and control our breathing voluntarily. Obesity and obstructive sleep apnea have a reciprocal relationship depending on the regulation of energy balance. When I was in practice I treated several patients with sleep apnea using large doses of thiamine. Because of this I hypothesized that the association of dysautonomia with so many different diagnoses is because of loss of oxidative efficiency and subsequent disorganization of controls that are mediated through the limbic system and brainstem. I came to the conclusion that energy deficiency in the brain was the core issue.

I recently had a letter from the parents of a then five-year-old child who came under my care 35 years ago. She has a genetically determined disorder that affects energy balance and I had treated her by dietary restriction and providing non-caloric nutrients. They informed me that she was doing very well. The condition is known as Prader Willi syndrome, a terminology that indicates that nothing was known about its cause when it was initially described. Today, 10 studies have provided evidence that total energy, resting energy,  sleep energy and activity energy expenditure are all lower in individuals with this syndrome. Dietary discipline and nutritional supplementation had paid off.

An Explanatory Analogy

You may think that comparing the human body with an automobile is manifestly absurd, but the principles that I will use in the analogy are simple.

Fuel

First of all, both use fuel: gasoline is the fuel for a car, but it must be calibrated to the design of the engine, giving rise to the gasoline choices at the pump. Although different forms of human food may be compared to gasoline choices, the primary fuel for our cells is glucose and this is particularly true for the brain. Glucose, a carbohydrate, can be synthesized in the body from other components in the diet and different diets are sometimes used therapeutically. Unlike the car, the human body must derive its “spark plug”  from the food and is the basic reason why organic, naturally occurring, food is a necessity. The food industry cannot imitate or replace it.

Engine

The engine in a car burns gasoline to create energy. It requires spark plugs to ignite the gasoline and waste gases are eliminated through an exhaust pipe.

Every cell in the human body has an “engine”. Without going into details this is known as the Krebs cycle (named after its discoverer). Its objective is to produce energy and glucose has to be “ignited” (oxidized). The oxidation process, while releasing energy, gives rise to carbon dioxide (the “ash”) that is eliminated in the breath. Energy is stored in an eletrochemical form known as adenosine triphosphate (ATP).The nearest parallel would be a battery. It releases an electrical form of energy that is then used for function. Whether we like to recognize it or not, we are electrochemical machines and the only way that we can preserve or retrieve health is by furnishing the complex of ingredients that enable food to be converted into energy.

To continue the analogy, when you put your car in the garage and turn off the ignition the car is technically “dead”. Obviously, we are unable to do that with the human body, but let us make a simple comparison. Supposing for some reason it was desirable to keep the car “alive” when it was in the garage. The engine would continue to run and it would be consuming fuel. Because the body requires energy to remain alive, the “engines” have to continue running, even when we are asleep. This does make sense for the consumption of energy when we are asleep———it keeps us alive !

Transmission

The energy developed from burning gasoline has to be transmitted to the wheels in order to produce the normal function of the car, which is the ability to move. The transmission is a series of levers that are interconnected.

The same is true in the human body, but it is biochemical in nature. A series of energy consuming enzymes use the protein, fat and carbohydrate to build the diversity of tissues that make up the body. Throughout life, cells are destroyed and replaced, so this is a continuous process of energy consumption and repair. Every physical movement, every thought and emotion, consumes energy. Like the transmission in the car, the energy produced by the citric acid cycle engine is consumed in every movement of the body, every thought occurring in the brain and every emotion.

Chassis

The body of a car is just a container on wheels designed to carry around human beings. Its sole function is to move and until we have driverless cars a human being must be the driver.

In comparison, the body of a human being is merely a chassis that carries the brain around. It might be said that the brain can be compared with the car driver and every function of the body is under the command of the brain. Another analogy that I have used is an orchestra where the brain is the conductor and the organs are banks of instruments in which the cells come under the command of the conductor.

Putting It All Together

The 2019 Nobel prize has just been awarded to three scientists who have discovered how our body cells respond to low concentrations of oxygen (hypoxia). The reaction of medical scientists is very positive since this discovery will certainly be applied to the treatment of many diseases. Apparently scientists are already trying to find drugs that will influence this effect. For example, it has long been known that hypoxia will introduce inflammation. My forecast is that the use of nutrients will often correct the genetics by epigenetic mechanisms and this is already under way.

I found the Nobel prize extremely interesting because of a little-known phenomenon that was described by the early investigators of the vitamin B1 deficiency disease, beriberi. They had found in this disease that the arterial concentration of oxygen was low while the venous concentration was relatively high. Arterial blood carries oxygen from the lung to all the tissues of the body. It has to be unloaded into the cells that then use it to produce energy. The venous blood then returns to the lung to be loaded again with oxygen. A relatively low arterial oxygen reflects an inadequate loading at the lung tissues, while a relatively high venous oxygen indicates poor utilization by the cells to which it is delivered. This means that thiamine (vitamin B1) is an essential catalyst in the delivery of oxygen to the tissues. Its deficiency induces gene expression similar to that observed in hypoxia and has been referred to as a cause of pseudo-hypoxia (false hypoxia).

The heading of this article is that sleep requires energy, but I am making the case that being alive and well simply means that oxygen is being consumed efficiently, as long as the “blueprint” of DNA is healthy. It strongly suggests that hypoxia and/or pseudo -hypoxia are the underlying causes of disease and may explain why thiamine and its derivative are such important therapeutic agents.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

Image by freestockcenter on Freepik.

This article was published originally on October 14, 2019. 

Rest in peace Derrick Lonsdale, May 2024.

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Energy Loss as a Cause of Disease

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medical revolution

I graduated from London University in 1948 and retired at the age of 88 years in 2012, so I have seen some remarkable changes in the practice of medicine. I have entered many reports on this website, detailing what should be a medical revolution. One of the best professional associations that I have ever made has been with Dr. Chandler Marrs, the editor of Hormones Matter. Both of us have tried hard for years now to explain the details of our experience, hoping to reach those many individuals who are being misdiagnosed and treated extremely badly. My recent experience has come from retiring in an excellent retirement home.

I am surrounded by people of my age, many of whom are taking numerous medications to treat their symptoms. The most recent example was in a gentleman who has been in and out of hospital several times with a set of symptoms whose origins are clearly due to cellular energy deficiency. When approaching him as a friend and asking him how he is faring, he told me that his list of symptoms remains as a medical mystery. In addition, two women, with whom I had become acquainted, had symptoms that were similar to his. One of them passed away without a diagnosis and the other one is presently being treated symptomatically. The reader might well ask the obvious question as to what happens if I should state an opinion. The answer is very simple; the offered explanation would fall on deaf ears. Unfortunately, this is eminently predictable and is the major reason why innovation that contradicts the medical standards of the day is regarded as heresy throughout history. Of course, “new” concepts must be backed by evidence to become accepted. We are trying to provide the evidence on this website for defective cellular energy as a major cause of disease.

Heresy in Medicine

I am pretty sure that I may have recorded the story of Dr. Semmelweiss on this website but it is a story so poignant that it is well worth repeating. It is a story that illustrates the difficulty of introducing innovation in medicine, or indeed anything new. Semmelweiss was a German Hungarian physician who lived before the discovery of microorganisms. He presided over an obstetrics ward in which there were perhaps 10 beds on one side of the room and 10 beds on the other. The physicians of the day would come in and deliver their patients without washing their hands or changing their clothes. It is difficult for some people to comprehend the total lack of any form of hygiene that doctors practiced before microorganisms were discovered. Semmelweiss observed that the physicians would often come into the ward directly from the morgue and concluded that they must be bringing something in on their hands that caused the patient to die from child-bed fever, as it was then called. From this observation, he organized the first controlled experiment in medicine. He directed the physicians on one side of the ward to wash their hands in chlorinated lime before they delivered the patient. The physicians operating on the other side of the ward carried on in the same old way.

The results were dramatic as we would expect today. Child-bed fever was reduced by 85% when the physicians washed their hands. The medical profession, including his colleagues, said that “because Semmelweiss could not explain what was on the hands of the physicians, his explanation was unscientific”.  It is important to note that they simply ignored the obvious benefit. He was discharged from his job and excluded from the hospital. He died as a pauper in a mental hospital.

The major point is that the concepts of the medical profession of the day were completely wrong,  He had clashed with the current medical model that was then accepted by mainstream medicine as “the truth”.  If we apply this lesson to today’s model of medicine, it is impossible not to wonder if the outstanding principle of the use of pharmaceutical drugs in medical practice is fundamentally wrong. Is treating symptoms without addressing their underlying cause scientifically justified? A glance at the Physicians’ Desk Reference that supplies information on the many prescription drugs available might put off the reader’s use of a prescription. For each drug there is a short description of its use, often with an admission that its action is only partly understood. Then follows a page or two describing its side effects. Does this not suggest that the use of pharmaceuticals to treat symptoms causes more problems than it solves? Are we approaching another Semmelweiss moment in medical history?

Envisioning an Alternative Approach

I envision the profession of medicine as like a traveler, hoping that the road leads to the best solution in the treatment of disease. For my analogy the traveler comes upon a fork in the road with a signpost. One sign says “Kill the Enemy“, (referring to the discovery of infecting microorganisms) and our traveler takes that road because the sign for the other fork is blank. “Kill the enemy” became the first paradigm (a model accepted by all) in medicine. We had to find means of killing bacteria, viruses, cancer cells or any other attacking agent and many years were spent in trying to find ways and means of doing this without killing the patient. The information was hard won and a lot of patients suffered untold hardship and even death until the discovery of penicillin. This in itself “proved that the correct fork in the road had been chosen”. As we know, this discovery led to the antibiotic era, but even these drugs are running into new problems.

To continue the analogy, our traveler goes back to the fork in the road and finds that the other sign has now been filled in. It reads “Assist the Defenses” and I believe that it should represent a new paradigm. Louis Pasteur and his colleagues discovered the disease producing microorganisms, but on his deathbed he is purported to have said “I was wrong, it is the terrain that matters”.  He meant that the terrain represented the defensive functions of the body that should be assisted.  Perhaps he formulated what I believe must be the second paradigm in medicine.

The Second Paradigm

How should we approach the introduction of this concept? It seems to me that the problem is that few people are aware of the basic principles of body function so I must provide another analogy that I have used before in Hormones Matter. The human body can be compared with a symphony orchestra in which part of the brain represents the conductor. The organs represent the banks of instrumentalists that make up the orchestra. Like the instrumentalists who, although they are experts in their own right, still have to obey the conductor, the cooperative function of all our cells must obey the automated signals from the brain to play the symphony of health. Each of us comes with a “blueprint” that is our inheritance and although we are all the same in principle, we are all uniquely different because of accidental or inherited variations in the “blueprint”. The autonomic (automatic) nervous system, controlled by the lower part of the brain, coordinates the function of organs in the body, behaving like a computer. It receives sensory information, enabling it to receive from and send signals to those organs, thus collectively playing the symphony. The endocrine system consists of a group of glands that produce hormones. Their function, also under the command of the brain, is to release the hormones that travel in the bloodstream to the organs and are thus signaling agents.

The voluntary nervous system, controlled by the upper part of the brain, gives us what we call willpower. The voluntary and autonomic systems are completely separate but have many connections, so some of the reflex activity conducted by the autonomic system can be influenced and overridden by an act of will. Perhaps the best example is the fight-or-flight reflex that is activated by a sense of danger but can be modified voluntarily. For example, the reflex response to an insult might result in violence if it is not modified by the voluntary system. Assuming that the blueprint provides all the machinery of survival, all it requires is energy.

The Production and Consumption of Energy

We cannot survive without food and water. There is, however, an overall tendency to ignore the appropriate nature of the food, in spite of the fact that it provides the fuel that gives us energy. Taste is the dominating influence, driving sales for the food industry without an appropriate consideration of calorie/micronutrient balance. It is clear that “vitamin enrichment” has hoodwinked us. Chemical energy is liberated from oxidation of fuel (food), but it must be transduced in the body to an electrical form of energy that enables us to function. The electrocardiogram and the electroencephalogram are both tools that identify the electrical nature of this function. The human body is well equipped with an enormously complex system of defense but its complexity requires energy that has to be increased when a person is under any form of physical (trauma, infection, severe weather etc) or mental (divorce, grief, business deadlines etc) stress. It is very important to think of stress as a “force” to which we have to adapt. The lower part of the brain, acting like a computer must automatically organize the complex defense machinery, including the immune system, so its energy requirement exceeds that required by the rest of the body and must be automatically increased to meet the required response to stress. What we call the “illness” (fever, swollen glands, inflammation, etc.) is evidence that the brain has gone into action to generate a defense. In fact, war is declared and the result is recovery, death, or prolonged chronicity where the attacker has not been completely defeated. A nutritionally deprived individual cannot muster the energy to initiate defensive action and may explain why stalemate or the stress of vaccination can be evidence of failure to adapt.

Of all the aspects of health maintenance, exercise, appropriate rest, socialization and fulfilling job assignment, perhaps nothing is more important than the nature of the food. Genetics, stress and nutrition are visualized as the “three circles of health“. I want to illustrate this relationship by retelling an incident that we reported in “Hormones Matter” a few years ago. The mother of an 18-year-old girl reported by email that her daughter had received the HPV vaccination (to increase immunity against the virus associated with cancer of the cervix) four years previously. Throughout the four years she had been more or less crippled by a condition known as postural orthostatic tachycardia syndrome (POTS). She had been seen by many physicians without any success. Her mother did her own research work and had come to the conclusion that her daughter had the vitamin B1 deficiency disease known as beriberi and she wished to prove it. A blood test clearly showed that she was correct. Because of this, several young people who had also suffered from POTS following the HPV vaccination were also found to be thiamine deficient. One young woman who had not received the vaccination also had POTS and was found to be thiamine deficient. One of the observations that had puzzled the parents of these young people was that, without exception, each of them had been recognized as an exceptionally good athlete and student before they had received the vaccine. We deduced from this that a superior brain was more likely to consume  more energy than someone less well endowed, thus increasing the risk of poor  nutrition and the ability to adapt to a potentially powerful stressor.

Although proof is not possible, we have accumulated a lot of evidence that has enabled us to hypothesize that the vaccination acted as a nonspecific form of stress in people who were marginally thiamine deficient, but asymptomatic before receiving the vaccine. For the youngster who had not received the vaccine, but who had succumbed to POTS, poor nutrition alone, with or without genetic risk, had to be blamed. Genetics, stress and nutrition are visualized as the “three circles of health“.

The Medical Revolution

We are proposing that energy loss is the major cause of disease and that it results commonly from a less than ideal diet or dysfunctional mitochondria. Failing in the balanced need of the caloric content and the  necessary non-caloric vitamins and minerals for efficient oxidation, the result of poor diet is energy deficiency. There is considerable evidence that thiamine plays a vital part in both the production of chemical energy (ATP) and its conversion to electrical energy for bodily function. We have concluded, also from evidence, that genes may or may not usually cause disease on their own. Either nutrition or overwhelming stress may be variable factors that create genetic risk. The prevailing addiction to sugar creates a variable degree of thiamine deficiency by the catatorulin effect. We further hypothesize that a mild to moderate thiamine deficiency leads to a gradual decay in the efficiency of the critical enzyme(s), insufficiently supported by the cofactor(s). Attributing the easily reversible symptoms to other causes and allowing them to continue, leads to chronic disease. This may or may not respond to pharmacological doses of cofactor, used to resuscitate the associated enzyme(s).

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This article was first published on July 1, 2019.    

Rest in peace Derrick Lonsdale, May 2024. 

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Thiamine for Fibromyalgia, CFS/ME, Chronic Lyme, and SIBO-C

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thiamine chronic illness

The Road to Thiamine

In August 2020, I was at my wits end. I had developed gastroparesis in March 2020, after 10 days of metronidazole (Flagyl), for a H. Pylori infection and SIBO-C symptoms. After seven days, I developed the symptoms usually associated with the intake of this drug – nausea, confusion, anxiety, paranoid thinking and mild gastroparesis symptoms. I no longer had bowel movements initiated by my body and had to use enemas twice a week. This state continued and worsened until the end of July 2020, when I also had a surgery for stage 4 endometriosis.

I managed to stay alive those months by eating an elemental diet (90%) and a few bits of solid food such as white rice, goat cheese, or lean meat. After the surgery, however, my gastroparesis got worse. I contacted my family doctor at the end of August and told her that I could no longer eat any solid food without severe nausea and that I need to be in a hospital to be fed intravenously or with a gastric tube. She agreed that my situation demanded immediate attention and she wrote me the referral for an inpatient hospital admission.

I was lucky though that at that exact time, I stumbled upon the low oxalate diet mentioned by a member of a Facebook group. I joined the Trying Low Oxalate (TLO) group on Facebook and read what researcher Susan Owens wrote about oxalates. I started implementing it and realized that small portions of low oxalate food every 2-3 hours were accepted by my body. In a few weeks my gastroparesis symptoms were reduced and my belly pain diminished.

From the Low-Oxalate Diet to Discovering Beriberi Disease

At some point in September 2020, while researching oxalates, I found Elliot Overton’s videos on oxalates and I listened to them. I also read his articles on this website where he talks about allithiamine, a thiamine supplement that contains something called TTFD, as being something radically different in terms of its unparalleled effects on the human body. I was skeptical, because I had spent about 20,000 euro on supplements in the previous four years, each of them being promoted as health-inducing by big names in the field of chronic Lyme disease, MTHFR, CFS/ME, SIBO and so on, while their effects on my health were only partial and temporary at best.

I decided that this would be the last supplement I’d buy. The worse would be losing 40 euros and I had already spent too much on worthless treatments. I took 150 mg allithiamine + magnesium + B2 + B3 for 3 weeks and I was less tired, could move more around the house, and overall was feeling much better, even my extreme light sensitivity was subsiding. Then I stopped taking it, not sure it was doing anything. That’s when I knew that it had worked and that I needed it badly. I took the same dosage for another 2 weeks. The next three weeks I had to wait to receive it from the USA, and I was again completely bed ridden.

However, I used this time to read most of Dr. Derrick Lonsdale’s book on thiamine deficiency. I became convinced that I had dry beriberi and that most of my neurological symptoms were caused by thiamine deficiency. I also noticed that the dosage is highly individual and some individuals needed very high doses of thiamine per day in order to function.

I now understood, why 2015 was the year I became bedridden for most than 90% of the time: I spent 6 months in a very hot Asian country, as part of my master degree studies. The energy requirement to deal with the hot weather and the demanding job depleted my already low thiamine levels. At that time, I was on my way to diabetes as well. I had fasting blood sugar levels of 120 mg/dl. I could no longer assimilate/use carbs in the quantities my body required (70% of the daily caloric intake) and I was always hungry and always thirsty. Looking back on my childhood and my ever-declining health from 2008 onwards, it was clear to me that I had problems with thiamine.

The Astonishing Effects of Thiamine

In December 2020, I increased my thiamine dosage to 300 mg per day and I was astonished at the changes I experienced – an 80% reduction across all my symptoms and some even completely disappear.

Mid-January, I decided to increase my allithiamine dosage to 450-600 mg because I felt like my improvements were stagnating. I also noticed that during the days I was more physically active (meaning: I cooked food for longer that 10-15 minutes, my energy levels were higher when I was taking more allithiamine and I didn’t experience the typical post-exertional malaise I was used to in the past). I also noticed that taking allithiamine alone in high doses doesn’t work so well and that the active B complex capsules and the B3 I was taking did have an important part to play in how I felt.

In the beginning of February, I was craving sugars so badly, that I gave in and bought a cake for my birthday. I ate two slices and discovered that my mental confusion, the brain fog and generally poor cognitive skills improved “overnight”. I was astonished, since I had been led to believe that “carbs are bad”, “sugar is bad” and “gluten is bad” and that the problem was with the food itself rather than with my body missing some vital nutrients. I didn’t experience any side effects from the gluten either, even though my food intolerance test shows a mild reaction to gluten containing cereals.

By February 20th, this high-dose allithiamine ‘protocol’ and the ability to eat carbs again, eliminated all of my symptoms of SIBO-C/IBS-D/slow transit constipation, endometriosis, CFS/ME, fibromyalgia, constant complicated migraine with aura, severe food intolerances, including a reversal of my poor cognitive skills. I was able to discuss highly philosophical concepts again, for one hour, without suffering from headaches and insomnia.

Early Metabolic and Mitochondrial Myopathies

On February 21st, I decided to go for a walk. I walked in total that day 500 meters AND walked up four flights of stairs, because I live on the 4th floor without an elevator. By the end of that day, my disease returned and I became bedridden again. I could not believe it. This was the only thing I did differently. I just walked slowly.

And so I searched the internet for “genetic muscle disease”, because my sister shares the same pattern of symptoms. A new world opened before my eyes. I found out that in the medical literature, exercise intolerance, post-exertional malaise and chronic fatigue are well known facts and are described in conditions known as “myopathies”. That there are several causes for myopathy and that they can be acquired (vitamin D or B1 deficiency, toxic substances impacting the mitochondria, vaccines and so on) or inherited. It was also interesting to find out that while doctors manifestly despise and disbelieve CFS/ME symptoms, they are not utterly unknown and unheard of or the product of “sick” minds.

When I read this paper, although old and maybe not completely accurate in the diagnostics, I understood everything about my health issues.

I remembered my mother telling me that my pediatrician said he suspected muscular dystrophy when I was one years old, because I could not gain weight. I weighed only 7 kg at the age of one year, but he wasn’t convinced and so no tests were done in communist Romania. In addition to being overly thin, throughout my childhood, I always had this “limit” that I couldn’t go past when walking uphill or if I ran up a few flights of stairs, no matter how fit and in shape I was. Otherwise, I would develop muscle weakness such that my muscles felt like jelly. I would become completely out of breath, which I now know is air hunger. I couldn’t climb slightly steeper slopes without stopping 2/3 of the way up. My heart would beat very hard and very fast. I would feel like I was out of air and collapse. I first experienced this at the age of 5-6 and these symptoms have been the main feature of my physical distress since.

Because of these symptoms, I have led a predominantly sedentary lifestyle with occasional physical activity, never daily, apart from sitting in a chair at school. I didn’t play with classmates for more than 5 minutes. I couldn’t participate in physical education classes. Any prolonged daily physical activity led to general weakness, muscle cramps, prolonged muscle “fever”, and so I avoided them.

Now, I know why. Since reading this article, I was able to present my entire medical history to a neurologist and my symptoms were instantly recognized as those of an inherited mitochondrial or metabolic myopathy. I am currently waiting for the results of the genetic tests ordered by the neurologist, which will make it possible to get the right types of treatments when in a medical setting.

Before Thiamine: A Long History of Unexplained Health Issues

In addition to the problems with gaining weight and inability to be active, I had enuresis until 9 years old, along with frequent dental infections, and otitis. I had pain in my throat every winter, all winter and low blood pressure all the time. At 14 years of age, I weighed about 43-45 kg. I remained at that weight until age 27. I had a skeletal appearance. I also had, and continue to have, very flexible joints. For example, my right thumb is stuck at 90 degrees, which I have to press in the middle to release. I can feel the bone repositioning and going into the joint. This happens at least once a week.

My diet was ovo-lacto-vegetarian diet, with 70% of the calories coming from carbohydrates from when I was able to eat until 2015. In 2015, I could no longer process carbohydrate due to severe thiamine deficiency.

Since the age of 18, I have had quasi-constant back pain in the thoracic area. I have stretch marks on thighs, but have had no sudden weight gain/loss. Among the various diagnoses I had received before the age of 18 years old:

  • Idiopathic scoliosis – age 18. No treatment.
  • Iron deficiency anemia – at 18. Treatment with iron-containing supplements. No result.
  • Frequent treatments for infections (antibiotics)
  • Fasting hypoglycemia (until 2015).

The Fibromyalgia Pit

In 2008, my “fibromyalgia” symptoms began, although looking back at my history, many of these symptoms were there all along. I made a big change in my physical activity levels and this began my 12 year decline in health. In 2008, I started my philosophy studies at the university and decided to get more “in shape” by walking daily to and from the university. A total of 6 km per day.

  • Constant fatigue, no energy.
  • Worsened back pain.
  • Weak leg muscles at the end of the day.
  • Frequent nightmares from which I could never wake up. I felt like I couldn’t find my way out of sleep. After waking up, I would sit down and after 10 minutes I found that my head had fallen on my chest and I had fallen asleep involuntarily, suddenly.
  • Sensations of waves of vibrations passing through me from head to toe, followed by the sensation of violent “coming out” of the body and out-of-body experiences.
  • Heightened menstrual symptoms.
  • Fairly frequent headaches.

Over the summer, I recovered completely as I resumed my predominantly sedentary lifestyle. Then, in the fall, I began walking to and from university again, and my symptoms just got worse. This cycle continued for the next few years. My symptom list expanded to include:

  • Migrating joint pains.
  • Frequent knee tendinitis.
  • Pain in the heels.
  • Generalized pain, muscles, joints, bones.
  • Frequent headaches.
  • Sleep disturbance with insomnia beginning at 2-3am every night.
  • Frequent thirst, increased water intake (3-4 l/day).
  • Frequent urination, especially at night (woken 2-3 times).
  • Bumping my hands on doors/door frames.
  • Unstable ankles.
  • Painful “dry” rubbing sensation in hip/femur joint.
  • Prolonged angry spells.
  • Memory problems (gaps).
  • Difficulty learning new languages.

I underwent a number of tests including, blood tests, X-ray + MRI of the spine, and a neurological consultation. All that came back was high cholesterol (180 LDL, 60 HDL), low calcium, iron deficiency anemia, scoliosis, and hypoglycemia. No treatment was offered.

From February 2010-August 2010 I had a scholarship in Portugal. Philology studies interrupted. I was using public transport to go to classes, which were about only 3 hours a day. I required bed rest outside classes with only the occasional walk. I had a complete remission of all symptoms in July 2010 when I returned home and resumed my sedentary lifestyle. This was the last complete remission.

From August 2010 – December 2010, I resumed day courses at both universities and resumed the walking.

All of my symptoms were aggravated enough that by December I was bedridden. I stopped attending classes due to back pain in sitting position. I wrote two dissertations lying in bed. Once again, I sought medical advice and had a number of tests and consultations with specialists. I was diagnosed with peripheral polyneuropathy and “stress intolerance”, fibromyalgia. The treatment offered included:

  • Medical gymnastics: aerobics, yoga and meditation presumably to get me in shape and calm me down.
  • Calcium and iron supplementation, gabapentin, and low-dose mirtazapine.

The physical activity worsened symptoms, as it always does. The mirtazapine improved my sleep. I took it for 2 weeks and then stopped because I was gaining weight extremely fast.

From 2011 – October 2012, I was almost completely bedridden. I had to take a year off because I couldn’t learn anything, my head hurt if I tried.  The physical symptoms improved after about a year, as did the deep and total fatigue. I tried to get my driver’s license in 2012, but failed. I couldn’t remember the maneuvers and the order in which to perform them. I couldn’t concentrate consistently on what was happening on the road. There was too much information to process very quickly.

From 2012-2015, I was getting my master’s in France. This aggravated all of my symptoms of exertion, both physical and intellectual. In 2013, I underwent general anesthesia for a laparoscopic surgery due to endometriosis, after which something changed in my body and I never fully recovered to previous levels of health. I took another year break between the two years of master’s studies. I couldn’t learn anymore. Symptoms relieved a bit by this break. After three months in Thailand for a mandatory internship, in one of the most polluted cities in the world, I got sick and developed persistent headache, with very severe cognitive difficulties. At this point, 90% of my time was spent in bed.

A general anesthetic in the autumn of 2015 for a nose tumor biopsy was the “coup de grâce”. Since then, I only partially recovered a few hours after a fluid infusion in the emergency ward and a magnesium infusion during a hospital stay in Charites Berlin in 2016. Other improvements: daily infusions of 1-2 hours with vitamins or ceftriaxone.

How I Feel Since Discovering Thiamine

In order to recover from the crash I experienced in February, I increased my B1 (TTFD) intake mid-March and made sure I was eating carbs every three hours, including during the night. I need about 70% of my total caloric intake to come from carbs.

I am currently taking 1200 mg B1 as TTFD, divided in 4 doses, 600-1200 mg magnesium, 500 mg B2/riboflavin, 3 capsules of an active, methylated B vitamin complex, 80-200 mg Nicotinamide 3X per day and 1-2 capsules of a multi-mineral and a multi-vitamin. I make sure I eat enough proteins, especially from pork meat, because it contains high amounts of BCAAs and helps me rebuild muscles.

I walked again the last week of April 2021, 500m in one day, because of a doctor’s appointment. I did not experience a crash that day or the following days. I did not have to spend weeks recovering from very light physical activity.

I can now use my eye muscles again, and read or talk with people online. I can cook one hour every day without worsening my condition.

After 5 years of constant insomnia, only slightly and temporarily alleviated by supplements, I can finally sleep 7.5 hours every night again. I no longer wake up 4-5 times a night.

My wounds are healing and my skin is no longer extremely dry and cracked.

My endometriosis, SIBO-C, gastroparesis, food intolerances, “fibromyalgia” pain, muscle pain due to hypermobility, are all gone.

And to think that all of this was possible because of vitamin B1 or thiamine, in the form of TTFD and that I almost didn’t buy it, because I no longer believed in that ONE supplement that would help me!

I will always be grateful for the work Dr. Derrick Lonsdale, MD, researcher Chandler Marrs, PhD and Elliot Overton, Dip CNM CFMP, have done so far in understanding, treating and educating others about chronic illnesses. More than anything, more than any physical improvement I experienced so far thanks to their work, what I gained was truth. Truth about a missing link, multiple diseases being present at one time and about why I have been sick my entire life.

Physical Symptoms and Diagnoses Prior to Taking Thiamine

  • Fibromyalgia and polyneuropathy diagnostic and mild, intermittent IBS-C since 2010;
  • Endometriosis symptoms aggravating every year, two surgeries, stage 4 endometriosis in 2020;
  • Surgeries under general anesthesia severely worsened my illness and set my energy levels even lower than they were before;
  • CFS/ME symptoms, hyperglycemia/pre-diabetes, constant 2-3 hours of insomnia per night and constant 24/7 headache since 2015, following an infection and during my stay in a very hot climate;
  • POTS, Dysautonomia, Post Exertional Malaise Symptoms from minor activities, starting with 2016;
  • Increased food intolerances (gluten, dairy, sugar/sweets, histamine, FODMAPs, oxalates, Sulphur-rich foods), to the point of eating only 6 foods since 2018;
  • Chronic Lyme disease diagnostic based on positive ELISA and WB test for IgM, three months in a row, in 2017;
  • Weight gain and inability to lose weight after heavy antibiotic treatment, skin dryness, cracking, wounds not healing even for 1.5 years, intolerance to B vitamins and hormonal preparations, since 2017;
  • Complicated migraine symptoms and aura, light intolerance, SIBO-C and IBS-D, slow intestinal transit, following a 4 month period of intermittent fasting that made me lose 14 kg, living in bed with a sleep mask on my eyes 24/7, severe muscle weakness, since 2018;
  • Two weeks recovery time after taking a 10 minute shower;
  • Gastroparesis, living on an elemental diet, in 2020;
  • All my symptoms worsened monthly, before and during my period.

Treatments Tried Prior to Thiamine

Gluten, dairy, sugar/sweets, FODMAPs, histamine, oxalate, Sulphur-rich foods/supplements free diets; AIP, SCD, Wahl’s protocol, candida diets; high dose I.V. vitamins and antibiotics, oral vitamins and antibiotics, liver supplements and herbs, natural antibiotics (S. Buhner’s protocol), MTHFR supplements, alkalizing diet, essential oils, MCAS/MCAD treatment, SIBO/dysbiosis diets and protocols, insomnia supplements, and any other combination of supplements touted as helpful for such symptoms.

And this is just what I remember top of my head. Their effect was, at best: preventing further deterioration of my body, but healing was not present.

Additional Literature

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

Image by Gordon Johnson from Pixabay.

This case story was published originally on May 11, 2021. 

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Diet and Medication Induced Thiamine Deficiency – Dry Beriberi

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thiamine deficiency - dry beriberi legs

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!

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

Image by Daniel Reche from Pixabay.

This story was published originally on October 5, 2023.

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