dysautonomia - Page 3

The Appalling State of American Health

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Mental Illness As Brain Energy Deficiency

The February 3 issue of Time magazine had an entry entitled “When Every Day is a Mental Health Day”. The Blue Cross Blue Shield Association reportedly found that in people between the ages of 24 and 39 in 2020, depression is the fastest-growing health condition. Fainting attacks, known as syncope, reportedly occur in 15-39% of the general population when they suddenly stand up from a chair.

It was also reported from Kaiser Permanente that “depression is a leading cause of illness among young people and anxiety is on the rise. Suicide ranks third as a cause of death for 15 to 19 year olds”. It is interesting that a picture of a young woman is shown whose anxiety level is described as medium-high. Her favorite pick-me-ups are described as “hugs, candy, conversation”. This is the cryptic message that invokes the methods which she uses to calm herself in the face of stress. Yes indeed, it is true that candy is often used as a kind of solace for the misfortune of stress.

I will show that far from helping an individual to adapt to stress, candy is often the underlying cause of the depression and anxiety that represents maladaptation to the stresses of daily life.

Stress: Anything That Demands a Physical or Mental Response

I turn to the work of Hans Selye who proposed that human diseases were the “diseases of adaptation”. Hans Selye was a Hungarian medical student. He was in a class where the professor was bringing patients into the classroom to describe the disease that was diagnosed in each of these individuals. Selye was not listening to the professor. He was engaged in looking at the facial expressions of each of the patients as they were brought in. He came to the conclusion that the facial expression was similar from patient to patient, irrespective of the disease that was being described, that they were all suffering from the stress of the disease, irrespective of its diagnostic category. He immigrated to Canada and set up an institution in Montréal to study the effects of stress. Of course, he was unable to study this in humans so he inflicted physical trauma to rats by the thousand and did laboratory studies to show the effects. He found that the laboratory showed changes in the blood that were similar to those found in human beings afflicted with chronic illness. He formulated his findings under the heading of “the General Adaptation Syndrome” and labeled human disease as “the diseases of adaptation”. The remarkable conclusion was that the resistance to whatever was responsible for causing the disease (stress) required huge amounts of energy in the brain for the process of adaptation. I am suggesting that the vulnerability of the American population is because so many people are unable to adapt to the everyday incidents encountered in just living.

This of course makes a world of sense because infections, trauma and prolonged mental pressures such as ugly divorce or business assignments (stress) are known to initiate disease and sometimes even death. At the time of Selye little was known about the way that the body manufactures the energy derived from food so his conclusion was the mark of genius.  He actually did recognize his own genius and firmly believed that he would be the central figure in 21st century medicine. I believe that he could have been right but his work has been largely ignored for at least two reasons. The cruelty to animals got him into trouble with the antivivisection league and the pharmaceutical industry captured the field.

Energy and Illness

We now know a great deal about the way this energy is produced and consumed in the body to produce function. The conclusions of Selye now make perfect sense in analyzing the cause of human disease. The only change that I would make would be to call human diseases “the diseases of maladaptation” because  Selye pointed out that succumbing to stress was nothing more than the failure of energy production in adapting to whatever form of stress was being imposed. In order to understand this, you have to remember that infection, trauma, and problems involving mental work all come under the dominant heading of stress and that they all demand consumption of mental energy in the solution by adaptation.

Thus, we can begin to see that disease, irrespective of diagnosis, is nothing more than a combination of genetic risk coupled with a failure to meet the energy demands required. The initiation can be represented by the integrative action of one or more of three interlocking circles labelled Genetics/ Sress/Nutrition. There is now evidence that most genetically determined disease, including cancer, does not usually produce disease on its own. For example, diabetes is genetically determined but does not develop until middle age and often following a “stress event” such as an infection, trauma or a prolonged and nasty divorce. We have to recognize that the body’s ability to manufacture sufficient energy to meet whatever stress is imposed comes from the quality of the food. A relatively new science is called epigenetics and is the study of how our genes can be affected by nutrition and lifestyle.

I know that I am repeating myself (for emphasis) when I write that the ability to adapt to any form of physical or mental stress depends on brain/body energy and that if bad news, injury, infection or a nasty divorce, has to be faced in the modern world, Selye would point to the need for brain energy in meeting and adapting to that stress. Of course, if we are healthy, the adaptation is automatic and we don’t even think about it. In short, we adapt. That has given rise to the idea of “good, and bad, stress”. However, if a person becomes sick at such a time we are most unlikely to think of it as mild to moderate brain energy deficiency. Without this, the brain “complains by initiating symptoms”. In other words, individuals developing mental disease have biochemical deviations in their ability to adapt. Depression and anxiety are merely examples of the way in which the brain shows energy failure, the result of simply being alive. Note that depression and anxiety are perfectly normal as we adapt to the appropriate stimulus. They are abnormal when they exist chronically for no apparent reason or stimulus. The underlying mechanism has been exaggerated and is a reflection of abnormal brain function.

The January 2020 issue of National Geographic magazine states that “stress plays a major role in many illnesses that kill us. It also drives unhealthy eating, poor sleep, alcohol and drug misuse, and other bad habits. Modern medicine really sucks (their word) at preventing chronic disease”. In the same issue, “food allergies have become so widespread that many schools restrict what kind of lunch kids can bring from home for fear of setting off a classmate’s allergic reaction. Oddly enough, allergy is a brain sensitivity, resulting in abnormal organ action, so it is in reality brain related. For example, a woman who was known to be allergic to rose pollen enters a room where there is a bowl of roses. She succumbs to an attack of asthma that requires hospitalization, only to find later that the roses were artificial. The point is that the asthma could be initiated by more than one sensory input.

In the United States 5.6 million children suffer from food allergies. This translates to two or three in every classroom”. I will illustrate the unifying concept of energy deficiency by discussing a number of diagnoses in which the medical literature supports it.

Energy and Brain Autonomic Function: Parkinson’s and Alzheimer’s Diseases

The classic prototype for dysautonomia is beriberi, the vitamin B1 deficiency disease. Although this is not by any means the only cause of energy deficiency in the brain, it acts as a model for clinical expression. To put it as simply as possible, it represents an unbalanced ratio between calories ingested and the density of the micronutrients contained in the food source that catalyze the complex mechanisms of energy production. For example and contrast, the diet in Okinawa, Japan, that boasts a high concentration of centenarians, is nutritionally dense, meaning that it contains the vitamins and essential minerals that enable the calories to be burned (oxidized). It is also calorically poor, while in the US it is the reverse and where chronic disease is common. It has been shown in animal studies that a calorie poor diet correlates with the prolongation of youthful activity and even life itself.

In this presentation, I will try to show that brain energy deficiency is the major cause of disease. Because the controls of the autonomic nervous system in the lower part of the brain are quickly affected by energy deficiency, (the commonest cause in America is TD) it is not surprising that dysautonomia is common and occurs as part of other diagnostic categories. What I mean by that is that many diseases have been described in the medical literature associated with dysautonomia. For example, Parkinson’s and Alzheimer’s diseases are in a group of conditions that have a causative relationship. Both are associated with dysautonomia.

Megadose thiamine treatment has been reported to be successful in Parkinson’s disease.This information comes from a physician in Italy and it amply supports the concept that this chronic disease is caused by brain energy deficiency. The importance of the word megadose means that thiamine is not simply replacing a dietary vitamin deficiency. It is being used as a drug. The multiple actions of thiamine are all known to be essential in energy synthesis. If two diseases such as Parkinson’s and Alzheimer’s have a common cause, you might well be asking how is it that they are different in character? I think that this is an extremely important point. The disease in the brain depends on the distribution of the deficiency and hence the function of the affected cells. There is always symptom overlap in the two diseases. Variations in the presentation of disease can be extraordinarily variable.

Panic Disorder, Autonomic Dysregulation, and Energy

Supposedly psychological in nature, it is really a sympathetically initiated fight-or-flight reflex, originating because of brain oxygen, or oxidation, deficiency. The association between panic disorder and cardiovascular disease has been extensively studied. Some of these studies have shown anxiety disorder co-existing with or increasing the risk of heart disease. Heart disease almost always occurs in vitamin B1 deficiency beriberi, because the heart functions continuously throughout life and requires a continuous supply of energy. But heart disease occasionally does not occur, depending on the severity and the cellular distribution of the deficiency.

Recent interest has focused on whether some modern heart disease is caused by energy deficiency. What is confusing to people is that tachycardia (accelerated heart), occurring for no specific reason, is caused by an erratic signal from the brain via the autonomic nervous system. If the heart muscle is also deficient, the autonomic signal may result (for example) in atrial fibrillation. The treatment would therefore be energy stimulus in both brain and heart. This is why beriberi, the disease that is the well accepted result of vitamin B1 deficiency, causes defective function in the controls of the autonomic nervous system and the heart as the commonest result of this disease.

It also raises eyebrows when I say that beriberi is common in America, but is unfortunately not recognized by physicians whose overall philosophy is that “any sort of vitamin deficiency simply never occurs in America because of vitamin enrichment of foods by the food industry”. The trouble with that philosophy is that the extraordinary ingestion of empty calories in this population overwhelms the vitamin dependent machinery that oxidizes the calories. The best analogy that I can offer is a choked car engine. The input of gasoline must match the capacity of the spark plug to initiate gasoline ignition.

Overall, results suggest that rates of epilepsy are elevated among individuals with panic disorder and that panic attacks are elevated among individuals with epilepsy. An article reviewing the causes of epilepsy includes recent reports on the effects of inefficient cellular use of oxygen as a causative factor. Hyperventilation (over breathing) occurred in 25% of a group of patients with a relatively common form of dysautonomia (POTS) associated with fainting attacks. The authors hypothesized that the hyperventilation in this condition arises because of brain hypoxia.

This is supported by the fact that people prone to panic disorder are known to develop one of their attacks when situated on the top of a mountain. One of my patients was an elderly lady who indulged in square dancing once every two weeks. Invariably she would develop a feverish illness lasting several days after returning home. Without going into the complex details I was able to conclude that her energy requirement was increased by the physical effort required for square dancing. Because her energy synthesis mechanism was depleted from thiamine deficiency, these episodes of fever were exactly similar to the condition called mountain sickness. With megadose thiamine she was able to continue her square dancing without suffering these repeated illnesses. This patient’s problem could not have been addressed by the orthodox assumption that each episode of illness was due to an infection; Because of a rigid concept that these recurrent episodes were only the result of an infection, we tend to forget that the “illness” is really an exhibition of the complex mechanisms of defense organized by the brain. Lacking in a full complement of energy, its organizational capacity is depleted.

Many examples of manuscripts appearing in the medical literature describe the presence of multiple diseases occurring in a single patient. We suggest that this stretches credibility because we cannot predict the incidence of one disease in a person, let alone the incidence of two or three at the same time. Rather we should be seeking a single causative factor to explain all the symptoms. In the reports of multiple conditions occurring in one individual, one of them is invariably described as dysautonomia, strongly suggesting that the cause in common is brain energy deficiency affecting the controlling mechanisms.

Energy Deficiency and Health Across Generations

Mental illness, including depression, anxiety and bipolar disorder, accounts for a significant proportion of global disability and poses a substantial social, economic and health burden. Treatment is presently dominated by pharmacotherapy that averts less than half of the disease burden and is purely treatment of symptoms.  In the January 2020 issue of the National Geographic under the heading of “A World of Pain”, a case is described of a pregnancy in which the patient called Karen “begins bleeding profusely so is taken to the operating room, where doctors perform a hysterectomy. After the operation, she suffers multiple organ failure and has a cardiac arrest from which she does not recover. Karen dies of pre-eclampsia”. This is a high blood pressure disorder that is unfortunately all too common in pregnancy. I recently learned from a book written by an American Ob/Gyn specialist that this kind of tragedy could be completely prevented by the initiation of a megadose of thiamine routinely given daily during the pregnancy. It is indeed stunning to claim that pregnancy complications are all manifestations of beriberi and that this cheap and simple ingestion can prevent all pregnancy complications, a fact that most people would find hard to believe.

But this also makes sense. The food that the mother ingests must be able to provide the energy, not only for herself but for the rapidly growing infant that she has to support. It is no surprise to me that dietary indiscretion by the mother, such as the use of alcohol and the lunacy of smoking, provides a legacy to her yet unborn child that adds to the burden of child development both before and after birth. It is now well known that sudden death syndrome in infants can be a legacy of the pregnancy. Breast milk thiamine deficiency has long been known to be responsible for sudden death in a breast fed infant and breast fed infants are associated with a higher risk of autism in our modern world.

What about other nutrient deficiencies as a cause of disease? People suffering from depression, schizophrenia and dementia often have measurably lower levels of serum folate compared to people not experiencing psychiatric disorder. Even the use of methyl folate, an important part of the chemistry of folate, as a stand-alone monotherapy has been observed to exert antidepressant properties. Earlier in this presentation, I mentioned that sugar was the cause of anxiety, not a treatment for it. The fact is that the processing of sugar is extremely complex and can initiate energy deficiency in the brain. Obviously, energy deficiency represents a threat to the organism and so there is an automatic initiation of the sympathetic nervous system that results in the fight-or-flight reflex. In other words, under these circumstances the initiation of this reflex is because the sugar has caused thiamine deficient pseudo-hypoxia. The obvious safety measure, automatically governed by the brain, is to alert the organism to the perceived danger, however that interpretation or brain misinterpretation might arise.

Brain Energy Deficiency and Violence

There is a link between mental illness and firearm violence, reported to be a significant and preventable public health crisis. Hypoxia and hypercapnia (too much carbon dioxide in the blood from inadequate breathing) excite the sympathetic branch of the autonomic nervous system. Excitation of this system generates the fight-or-flight reflex that is associated with aggression. Pseudohypoxia (imitates true hypoxia) is caused in the brain by thiamine deficiency. Therefore, there should be a serious look at the diet history of gun violence perpetrators.

Early Diet and Behavior

Many years ago, when I was in practice as a pediatrician, I saw many children who were brought because of emotional disease such as hyperactivity, learning disability, unusual temper tantrums and sleep problems. The current and false explanation for this was poor parenting, but on discussion with the parents I found that in almost every case the parenting was perfectly healthy. The diet of these children was appalling, however, very high in empty calories, particularly as those from sweets and I began to keep records of the dietary mayhem that was so common. In many cases I measured the intake of carbonated beverages in gallons per week. When I instructed the parents concerning an appropriate diet for their children, the emotional symptoms disappeared. This was so impressive and the children’s response to drugs so unpredictable, I decided to practice what has become known as Alternative Complementary Medicine. Please note that complementary is spelled with an ‘e’ not an ‘i’ and it indicates that it strives to take the best of orthodox medicine and complement it with the use of nutrients that represent the elements essential to energy metabolism. The two physician organizations that have developed are the American College of Advancement in Medicine (ACAM) and the International College of Integrative Medicine (ICIM).

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Photo by karatara: https://www.pexels.com/photo/male-statue-decor-931317/.

This article was published originally on February 24, 2020. 

Recovery From Alcohol Induced Gastric Beriberi and Dysautonomia

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Early Alcoholism: A Precursor to Thiamine Deficiency and Dysautonomia

When I was in my 20’s, I was an alcoholic student in a Nordic country. I was a perpetual student enrolling every year, but getting very little done. I mostly read and drank. I stopped drinking in 2015 because it was too tiring to be drunk all the time. Stopping wasn’t difficult. I didn’t get any joy of alcohol anymore anyway. I became fit, resumed studies, and graduated in 2018. I went on a vegetable-based low carb diet and took B vitamins thinking I might need them after years of drinking. I felt fine. I was a little overweight but not too much. I also took a handful of basic vitamins and magnesium, in addition to the B complex. I had four years of a pretty healthy life before everything fell apart and I developed a variety of dysautonomia symptoms related to thiamine deficiency.

The Emergence of Dysautonomia

In February 2020, I became ill with a myriad of symptoms. I had costochondritis. (Defined as “an inflammation of the connective tissue where the ribs attach to the breastbone .Characterized by dull to sharp pain at the front of the chest wall that may radiate to the back or abdomen.”) I had constipation to the point of impaction, I couldn’t regulate my temperature, and kept shivering under several blankets. I wasn’t able to swallow properly because food got stuck in my throat.

In March the Covid-panic was at its worst and I sat tight at home, thinking I’d just need to weather it out rather than make an appointment with my doctor and risk getting Covid. During this time, I had constant vertigo and had to hug the walls of my house as I moved around. Vertigo made me motion sick.

In May things looked up, the panic had changed into hopeful masking. The state I lived in hadn’t gotten its first wave yet and so I made an appointment with my doctor. I left with motion sickness medicines and routine labs done, which showed nothing remarkable. I was able to recover from the costochondritis and constipation. I was using laxatives now regularly. It didn’t bother me after the agony of an impacted colon.

I was now having fulltime dysautonomia, with hypothermia and vertigo being the most prominent symptoms. I still had difficulty swallowing but it was something I decided was psychosomatic because of the stress. I just ate very carefully and avoided things that would make me choke.

Stumbling Onto Thiamine Deficiency

I ran into Hormones Matter blog after joining a reddit group r/dysautonomia. One poster kept repeatedly posting “thiamine deficiency” to people describing their symptoms and quoting parts of Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnutrition by Lonsdale & Marrs. I bought the book and read it.

I went to see my doctor again, telling her that I wasn’t recovering. I asked to get whole blood B1 tested, she refused saying I don’t look like I had beriberi, with a chuckle. That hurt. Pictures of beriberi patients are invariably people who are emaciated to the point of starvation. I am still slightly overweight.

I began high dose thiamine in October 2020 on my own.

I started taking Allithiamine and later Thiamax. I tolerated the TTFD (thiamine tetrahydrofurfuryl disulfide, a thiamine derivative used in the formulations for Allithiamine and Thiamax) fabulously. I titrated the dose per symptoms until I felt fine. I was startled how high I needed to go. At times in December, I was at 400-500 mg TTFD per day + 300 mg of benfotiamine during the night. I would notice the effect wearing off in 4 hours and needed to re-dose because all the symptoms came back.

My Experience with Thiamine Supplementation

My experience with TTFD was head clarity and enormous sense of wellbeing. Benfotiamine made my temperature regulating issues go away and gave me good sleep. I was often having bouts of hypothermia when ill and shivering under blankets. Benfotiamine helped in this more than TTFD.

TTFD solved the constipation and swallowing issues, which would support the vagal lesion theory. Lonsdale describes gastroparesis and dysphagia as a “central lesion” in the GI tract affected by beriberi. I noticed the effect of feeling GI peristalsis kick start and make a sort of “chugging” motion after I took TTFD. If I ate steak, I made sure to take TTFD before because it made my swallowing effortless. Previously, I always had choking hazard because bits of meat would get stuck in my throat and I had to flush them down with water.

I took other B vitamins individually to supplement. The amounts were the same as most B complexes. I took 300 mg of magnesium taurate through the day and 1/2 teaspoon of potassium chloride in water through the day as well. I began taking 150 mcg of molybdenum and 200 mcg of selenium. I took one drop of iodine a day too. I listened to Elliot Overton’s talks about TTFD.

Titrating the Supplements Down After Recovery

Over the spring, I was able to reduce TTFD, going down about 50mg a month, most months. If I felt symptoms coming back – the coldness, vertigo – I decided I wasn’t ready for nipping more off and resumed the previous months’ dose where I felt fine. I have been off of TTFD now since June and completely symptom free from my dysautonomia, constipation, vertigo, swallowing difficulties, continuous nausea – all since April.

I’m still intolerant to many supplements, but I can take Thorne’s Basic B to keep covering the B’s. I still take magnesium and potassium with the B complex, occasionally molybdenum and selenium in small doses. Iodine, if I remember. I don’t know if they contributed any, but they may have.

I must mention that years past when I took Basic B, I felt nothing. Now, I feel a bit energized after taking it and I have a bowel movement. This is similar to my experience with TTFD. I believe that TTFD has enabled me to uptake the regular thiamine HCL, and that for some reason with my history of heavy drinking and bad nutrition, my early beriberi-affected system was not able to transport thiamine HCL that was in the B complex. However, now it feels like it does. I will try to get the other nutrients from food.

What I did not do:

  • megadose any other B vitamin
  • address any oxalate issue
  • make any dietary changes. I kept eating the same low carb I always ate
  • address any histamine issue

I did not do any of those because I was making progress with TTFD and B complex with the usual minerals.

My illness wasn’t long compared to others that I have read about. That may be also why recovery was swift. I also had a pretty good nutritional status to begin with, with magnesium and potassium on board – and probably no other vitamin deficiencies. This is my story. I am forever grateful for Drs. Lonsdale and Marrs for the book and this website.

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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.

Solving the Medically Unsolvable: Gene, Nutrient, and Diet Interactions With Dysautonomia

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Years of Pain, Fatigue, and Weird Symptoms

I have had chronic fatigue syndrome, excessive Non-REM (NREM) dreaming, mood issues and muscle pain 24/7 for as long as I can remember. I have been to more than 100 health practitioners of various flavors, from the conventional doctors and specialists, to herbalists, energy medicine doctors, hypnotists and acupuncturists as well as taking pretty much every test available. Most tests were frustratingly normal. I had deficiencies in iron and B12 at various times but that came right after being diagnosed with Celiac Disease and starting a strictly gluten free diet.

Still, the fatigue and 24/7 pain persisted, and with the start of menopause, new symptoms emerged. I experienced periods of vertigo, brain fog, unexplained cold sensations in my chest, and after taking bioidentical progesterone for a few days I experienced daily dizziness and eventually got diagnosed with postural hypotension when the cardiologist measured a drop in systolic blood pressure of more than 30 upon standing. This daily dizziness continued for more than three years.

I tried all of the usual dietary interventions as well as the low oxalate diet, the anti-candida diet, the Failsafe diet and other elimination diets. All failed to make a dent in symptoms. The only time I noticed an improvement was when, after several bouts of gastroenteritis, I was forced to subsist on dry gluten free bread, a whey protein based meal substitute drink and skinless chicken. People commented that my skin looked good and I had improved energy, however, over time I returned to my normal diet and the benefits gradually disappeared.

Resolving the Dizziness, Brain Fog, Dysautonomia / POTS with B Vitamins and Diet

For more than three years, I have had daily dizziness pretty much all day as a symptom of dysautonomia/postural hypotension. An OAT test showed low thiamine and I had high hopes that thiamine would be the magic ticket that would get me out of dizzy brain fog hell. Thiamine and a reduced sugar diet did help a lot with energy, mood and general well-being, but unfortunately the reductions in postural hypotension were minor.

I experimented with supplements and lifestyle changes. I increased my meditation time, and did gratitude journaling and worked on taking in the good and rewiring my brain. This helped me better manage the stress of chronic illness and reduced some of my symptoms of depression and agitation.

I also found improvements in taking thiamine and riboflavin (B2) 3-4x a day along with high doses of the other B vitamins once a day. But, again the daily dizziness and brain fog persisted.

My big breakthrough came when I discovered that I had been taking the wrong form of niacin. I had been taking niacin and inositol hexanicotinate for the last three years, but it wasn’t until I returned to taking niacinamide that the symptoms dysautonomia dialed down. I started with a 50mg dose and by the end of the day I noticed that I had been less dizzy. I gradually increased the dose to the full 500mg and the symptoms kept reducing. I also got my brain back! No longer was I feeling constantly brain fogged, sluggish and mentally confused. Now that the niacinamide had my blood circulating properly and fueled my biochemistry things started working. My thyroid numbers had always been on the cusp of hyperthyroidism, yet I had a sluggish metabolism. Within a week, I noticed that with no other dietary changes my post-menopausal muffin top had reduced, my energy increased, and my skin was looking better.

The Missing Pieces: HACL1 and Phytanic Acid

I had high hopes that I would be able to completely eliminate the symptoms of dysautonomia, however, there is still some lingering dizziness. Over the last few weeks, I have been experimenting and have noticed two interesting associations.

The first, is sugar intake. Additional fruit or anything high in sugar increases my symptoms of postural hypotension. This could be linked to thiamine or niacin.

The second, is a reaction to foods high in phytanic acid. I first learned about the HACL1 gene from the Hormones Matter blog and I quickly realized that this made sense of the fact that I reacted to both A1 and A2 cheeses and yogurts as well as butter, but am fine on whey protein. I also react to oily fish and red meats but I am fine with pork and chicken. I live in New Zealand where all of our lamb and beef are grass fed, so all of our dairy products and red meat are higher in phytanic acid than the same products from grain fed animals.

In the past, I had noticed that any of these foods that are high in phytanic acid trigger feelings of rage and anger. There seems to be a threshold, so I can do an elimination diet and reintroduce butter and be fine, but over time, I believe that they phytanic acid accumulates and then the symptoms appear. Once I reach the threshold, I “hulk out” within minutes of eating beef, lamb, fat containing dairy products and oily fish. I have also had similar reactions in the past when I ate sugar or drank alcohol. I had in the past noticed that my dysautonomia was worse with all of these things. It would appear that thiamine is required to process all of these things, either directly in the case of sugar and alcohol or through the HACL1 gene for the other foods. This suggests that my body struggles to maintain thiamine levels and get the thiamine to where it is needed.

 

HACL1 rs17485390 (C) TT
HACL1 rs6784844 (T) CT
HACL1 rs6797119 (T) CT
HACL1 rs7648958 (A) AG

Feeling confident after increasing my niacinamide to 1,000mg spaced throughout the day, I reintroduced foods high in phytanic acid and the dizziness increased fairly quickly. I am now sticking to a low phytanic acid with only occasional red meat, fish or butter. (Yogurt and cheese are gone for good and maybe the other foods will need to be completely eliminated too.)

I found an old test that showed that my urinary l-lysine was low. After more research, I discovered that lysine helps maintain tryptophan activity and reduces the draw on niacin in the body. My tryptophan levels were normal on both urinary and blood tests but perhaps a lysine deficiency was indirectly affecting my niacin levels. After an initial dose of lysine I felt almost euphoric. This effect quickly leveled off. I am wondering if, after decades of fatigue, my body likes homeostasis and is counteracting the effects of nutrients that I clearly need. This has happened in the past with medications. After a few doses, they are basically rendered useless. This applies to antihistamines, psychotropics, painkillers, and so on.

Possible Secondary Pellagra

Is it possible that I have secondary pellagra? I initially dismissed the idea of pellagra as the symptoms seemed more severe than mine. My dermatitis was minor compared to the pictures online, I had an explanation for the dizziness (diagnosis of dysautonomia), the diarrhea has been an issue on and off, so it didn’t seem significant, and my mental confusion didn’t seem enough to qualify as dementia and yet I can now see that I did have the 3 Ds of pellagra despite adequate niacin intake. I don’t eat corn and rarely eat grains and have a diet high in niacin but I had many of the symptoms of pellagra including sensitivity to light, dermatitis, diarrhea, dizziness, feeling cold all the time, brain fog and mental confusion, difficulty falling asleep and weakness.

Interestingly, some of these symptoms overlap with thiamine deficiency symptoms and I feel very sure that I have had severe thiamine deficiency because I have also had tingling sensations and muscle pain, as well as a history of high intake of sugar, carbs and alcohol and a very positive response to thiamine and benfotiamine.

Going Forward: More Questions

My plan is to continue with my supplements and a low sugar diet and low phytanic acid foods. I am hopeful that this will completely eliminate the dysautonomia and leave me free to work on my other symptoms. My brain function is good when the dizziness is kept at bay and I feel more optimistic and happy and have a small but noticeable uptick in energy and strength.

Although I have made huge strides in my health, I am left with some lingering questions:

  1. I have been on high doses of many B vitamins for years and yet it seems that my body still craves them. Could years of undiagnosed Celiac Disease have affected the enzymes that take vitamins and converts them to the active form and transports them into organs and tissues? Is it realistic for this to still be happening after eight years of being gluten free?
  2. The literature glosses over the conversion from niacin to niacinamide as something that the body can easily do, however, I have taken high doses of niacin and inositol hexanicotinate without benefit and eat a diet rich in niacin foods without getting the benefits that I got from small doses of niacinamide. Is it possible that some people have challenges converting niacin to niacinamide? I have yet to find any research to support this other than a study suggesting that niacinamide is twice as effective as niacin. However, I was taking triple the dose of niacin with no benefits. I believe that my body is inefficient at converting niacin to niacinamide. If anyone knows of a specific illness that may cause this I would be interested in learning more.
  3. Is my reaction to phytanic acid foods due to a deficiency in thiamine (despite taking very large doses for years) or is there another reason that my body appears not to tolerate phytanic acid foods?
  4. Are there still more vitamin or amino deficiencies that I am yet to discover? In the future I will probably do another OAT or Nutreval to see whether my levels have improved but for now I want to let my body get used to the lower phytanic acid levels and see if things settle.
  5. My body seems to like homeostasis. For the first couple of days that I took niacinamide I noticed that I felt very warm, but I have returned to feeling cold all of the time. The dizziness has improved and it had almost disappeared but then crept back in. Could this be due to more vitamin or amino deficiencies that I am yet to discover, problems with my enzymes or is there some sort of ANS wiring issue that is better addressed by neural retraining?
  6. Sleep is another big issue for me and until I consistently sleep well without excessive NREM dreaming it is possible that these other issues will not fully resolve, but progress is exciting and I am hopeful that the last puzzle pieces will fall into place.

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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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Hope for Cyclic Vomiting Syndrome

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Two days ago, I helped my twelve year old daughter pack for two weeks of overnight camp. We followed the suggested packing list that the camp provided, and when we got near the bottom of the list I realized there was one important thing that was not there that she needed—her medication and supplements. My daughter has had cyclic vomiting syndrome (CVS) since she was two years old, a disease that causes her to have frequent episodes of severe nausea, vomiting, and abdominal pain.

She has bravely managed this debilitating disease for 10 years. She has been going to camp for four years already, and every year she has had a vomiting episode at camp—one year while she was out on a canoe trip, and one year starting early in the morning on the day she was supposed to leave. When she was younger she used to have episodes like clockwork every two months, and as she got older, her episodes became less predictable, and more responsive to events in her life such as stress, fatigue, or even excitement. She would sometimes have three episodes within one month, and other times go for as long as three months without an episode. On average she would have one to two episodes per month.

This year, for the first time, she has had only two episodes of vomiting in the last seven months. This dramatic change occurred after she started a new regimen of dietary supplements—L-carnitine and Coenzyme Q10. We decided to try using these supplements after learning about research that suggests that CVS may be caused partly or completely by mitochondrial dysfunction. More information about the connection between CVS and mitochondrial dysfunction can be found here. L-carnitine and Coenzyme Q10 assist the mitochondria with energy production and thus, help compensate for mitochondrial dysfunction and potentially improve symptoms in CVS patients. These supplements may also help improve symptoms in other disorders linked to mitochondrial dysfunction such as migraine, irritable bowel syndrome, fibromyalgia, and medication adverse reactions.

Results from small clinical studies on the use of these supplements for cyclic vomiting syndrome have been very promising. A retrospective chart review study found that using these two supplements, along with a dietary protocol of fasting avoidance (having three meals and three snacks per day), was able to decrease the occurrence of, or completely resolve, the CVS episodes in many patients. The supplements were also shown to be safe and well tolerated, with few side effects.

My daughter noticed an immediate improvement in her symptoms. She had almost daily morning nausea even when not having a vomiting episode, and this disappeared almost right away. She started asking for breakfast, when previously I’d always had to try to convince her to eat at least half a piece of toast. She now will often eat either three eggs and two pieces of toast, or a big plate of dinner leftovers for breakfast. She also has a better appetite throughout the day. I don’t think I ever heard her say the words “I’m hungry” until this past year, when she was 12 years old. Previously quite underweight, in the past 7 months she has literally gained as much weight as she gained in the previous 7 years.

The first 2 months on the supplements she had no vomiting episodes. Then she ran out of her supplements while my husband and I were away, and within 2 days she was having a vomiting episode. Then over the last 5 months she has had one more episode, after a period of extreme stress. This represents a huge decrease in episode frequency for her. When we got to packing her medications and supplements for camp, I packed her supplements with careful instructions for the doctor as to the dosage, and the fact that she has to take them every day to prevent episodes, as we saw earlier this year what happens when she stops them even briefly. I then started looking around the house for her Zofran pills (a strong prescription anti-emetic), which was what we would usually use to try to stop her vomiting when she was having an episode. I have always sent them to camp with the instructions that they are to be used if she starts vomiting. I couldn’t find the Zofran anywhere—it had been so long since we had needed it. I called the pharmacy, but they didn’t have any in stock. I found one emergency pill stashed in my purse and I packed that, but I have a feeling that this could be her first year enjoying camp with no interruptions due to illness.

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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Postscript: This article was published originally in July of 2014. We are happy to report that after years of suffering from CVS, Philippa’s daughter remains largely episode free with relapses only when she misses her supplements or changes her routine. For more on cyclic vomiting syndrome search our archive. 

Image by 🆓 Use at your Ease 👌🏼 from Pixabay.

Two New Cases of Beriberi-like Syndromes: Thiamine Deficiency in Modern Medicine

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As a result of my participation in Hormones Matter, I receive quite a few emails that record histories of patients who have often languished with inexplicable symptoms, sometimes for years. I am going to record two histories here without identifying any possibility of the involved patients being recognized.

Patient number 1: Cyclic Vomiting, Hyper-salivation, Sensory and Neurological Issues

This is the story of a boy who had what was described as “chronic cyclic vomiting from 11 months until 24 months of age, sometimes 3 to 4 times a day”. Food refusal with chronic vomiting and severe weight loss (failure to gain) was described. His diet was recorded as consisting basically of chicken/beef and vegetables. Frequent use of Paracetamol for ear infections with fever was described. As an infant he experienced hyper-salivation, bad enough for wearing a bib 24/7. Extreme sensory issues were mentioned but were not specified. Dilated pupils from a very young age***, neurological issues with confusion, memory problems, speech difficulty and heart racing/palpitations were mentioned together with eye tracking difficulties. A high concentration of arsenic had been found, presumably in urine, although this was not specified. Candida, a form of yeast, had evidently been a frequent infection. He was reported to have Hashimoto (a thyroid dysfunction) and a high blood glucose ***. He exhibited complete lack of coordination, always “appearing drunk”, talking gibberish and repetitive behavior.

Discussion of Symptoms: Patient 1

Cyclic Vomiting

Sometimes known as winter vomiting, the cause of this relatively common condition is said to be unknown. Recurrent vomiting is one of the symptoms recognized for centuries in the thiamine ( vitamin B1) deficiency disease, beriberi. I had several patients with cyclic vomiting, described in our book (Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnutrition) that responded to thiamine treatment.

Food Refusal

Appetite is governed in the lower brain by several hormones, explaining why a voracious appetite and food refusal could both be a signature of thiamine deficiency, depending on severity and chronicity of the deficiency.

Weight Loss

Severe weight and stature increase (failure to thrive), is a signature finding in familial dysautonomia, a genetically determined disease. Thiamine deficiency also causes dysautonomia. I reported a patient with eosinophilic esophagitis whose dysautonomia resulted in failure to thrive. With thiamine treatment his weight and height increased dramatically (see: Eosinophilic Esophagitis May Be a Sugar Sensitive Disease).

Ear Infections

Extremely common in children, this and jaundice of the newborn are both now known to be the result of inefficient oxygen utilization. Thiamine deficiency is an outstanding cause.

Excessive Salivation

The salivary glands are under the control of the lower brain and this fits with thiamine deficiency.

Extreme Sensory Issues

This is the result of inefficient oxidative metabolism in brain and has been a well known problem in thiamine deficiency beriberi. It is interesting that diabetics are sometimes pulled over and accused of drinking because of erratic driving and subsequent “drunken” behavior. I strongly suspect that this is a thiamine deficiency affect, because thiamine metabolism has recently been found to be closely related to metabolism in diabetes.

Permanently Dilated Pupils ***

This is a cardinal sign of sympathetic nervous system overdrive, fitting in with the diagnosis of dysautonomia.

Neurological Issues: Confusion, Memory, Speech, and Eye Tracking Problems

All of this is the result of inefficient oxidative metabolism in brain.

Tachycardia

This is the term for a fast heart rhythm and is a cardinal sign of dysautonomic sympathetic nervous system overdrive.

Urinary Arsenic

Pressure-treated wood in the United States contains a significant amount of arsenic and is generally touted as being the source for children using playgrounds. This is much more significant than arsenic in drinking water. Arsenic damages oxidative metabolism and could be contributive to the effects of thiamine deficiency.

Candida Infections

Candida is a common form of yeast that infects humans. It dislikes oxygen: consequently this infection is much more likely to occur in people whose oxygen metabolism is inefficient.

High Blood Glucose***

Of course, this means that the patient has some form of diabetes. Both type I and type II diabetes are now known to have thiamine deficiency as part of the syndrome. Alzheimer’s disease may be diabetes type III. Thiamine is absolutely vital in glucose metabolism.

Pattern Suggests Pyruvate Dehydrogenase Complex Disease

Pyruvate dehydrogenase is an enzyme that demands thiamine and magnesium in order to function properly. I would be willing to bet that this boy would be responsive to high doses of Lipothiamine and should be studied in detail by a physician who understands the possibility of inborn errors of metabolism. Note the two starred items above. The observation of permanently dilated pupils indicates excessive activity of the sympathetic branch of the autonomic nervous system. The high blood glucose is a sure indicator that thiamine metabolism is involved, even if there is insulin deficiency.

Patient number 2: ROHHAD

This is a little girl, age not specified. She was described as a patient with ROHHAD. This stands for “rapid onset weight gain, hypothalamic dysfunction and autonomic dysregulation”. The parent described this as “a very rare syndrome and only 150 cases have been recorded worldwide”. Children with this diagnosis are said to have similar symptoms. Most of them have central and obstructive sleep apnea. Many depend on CPAP. This child requires it only during sleeping but many other kids have tracheostomy and all are living on CPAP day and night.

Symptoms of patient 2: Sweaty Palms, Cold Intolerance, Tachycardia and More

At my request, the parent observed that there was no family history of alcoholism or smoking. The mother had been thinking of thiamine deficiency because of the child’s autonomic dysfunction. I have noticed that alcoholism and sugar sensitivity appear to be closely related genetically.

She has palm sweating. Father has blepharospasm (spasm of the eyelids) frequently, lasting for weeks at a time. She also has tachycardia (fast heart rate), excessive vomiting, cold intolerance with persistent cold extremities, peripheral neuropathy, binocular diplopia, double vision, gastrointestinal dysmotility, mood swings, and low pain perception are all symptoms of dysautonomia, the commonest cause being thiamine deficiency. Fortunately the family is working with a physician who had started thiamine treatment for this child. The parent closed with the remarks that “since she started TTFD she is having a fast heart rate at 140 beats a minute and low oxygen saturation with restless sleep. I decreased TTFD from 250 mg to 50 mg but my opinion is that she became more stable with oxygen saturation and pulse rate”.

Discussion of Symptoms: Patient 2

ROHHAD

Rapid weight gain, hypothalamic dysfunction, dysautonomia and sleep apnea are all included in this syndrome. I must point out that the word “syndrome” is always used for a collection of symptoms whose cause is unknown. In fact, all can be caused by thiamine deficiency.

Palm Sweating

Sweating is a result of sympathetic nervous system overdrive. She also has tachycardia, excessive vomiting, cold intolerance, peripheral neuropathy and double vision. Various forms of peripheral neuropathy are cardinal symptom in thiamine deficiency.

Gastrointestinal Dysmotility

The intestine is innervated by the vagus nerve which originates in the brain. This nerve uses a neurotransmitter known as acetylcholine, highly dependent on energy metabolism and therefore also dependent on thiamine. Japanese physicians have used thiamine derivatives for years to treat postoperative intestinal paralysis.

Mood Swings

I learned the hard way about mood swings in children when I found that the dominant cause was poor diet resulting in thiamine deficiency.

Low Pain Perception

Decreases in pain perception are described in familial dysautonomia, a genetically determined condition. Thiamine deficiency results in dysautonomia and may well be responsible for low pain perception.

Points of Consideration: Polysymptomatic Disease and Thiamine Deficiency

Both these children have fallen into diagnostic cracks. It seems only to be the persistence of struggling parents that do their own research and persist in trying to find an adequate explanation that addresses the plight of these children. To me, the problem is obvious. Polysymptomatic disease that affects so many body systems can only be explained by some form of energy deficiency, dependent on oxidative metabolism. Thiamine deficiency, arising from both genetic and nutritional abnormalities is a common cause. It could be a simple thiamine deficiency from diet but this is unlikely in the case of these two children who may have a genetically determined condition that is responsive to megadose thiamine.

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It Wasn’t By Choice: Dysautonomia

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It was just another sunny Malibu, California day back in April of 2006. My daughter and I had finished visiting Grandpa, and were on the road in front of Pepperdine University, where the sea gulls float in the air amidst the robust sea breeze. The smell of salt water permeated everything, and one could almost hear the crash of the waves, over and over again. My father had Alzheimer’s disease, so we were “regulars” at the Home. It was about 10 miles away, and we were headed home. POOF! In less than an instant of time, my truck was facing oncoming traffic as I heard a huge CRUNCH! Behind me, another truck was totaled in one large SMASH!

No one stopped. Blank, faceless people drove their cars to avoid hitting us, swerving to avoid hitting us. It was 2 pm on a Tuesday; they had nowhere to go.

I panicked and did the one thing that you are not supposed to do: get out of your car. I had to check on my daughter, my 3-year old baby, who was strapped tightly to her car seat. I was obsessive about that. I tried to stop the faceless drivers then, to help me get off the road, but they all drove by, glazed eyes. They had nowhere to go.

Our baby was fine. The driver had leaned over to stop her Chinese food from falling off the passenger seat, and lost control of her car as she pressed the gas instead of the brakes. There were no skid marks on the ground, and I never hit my head. We were ‘centrifuged’ and my brain suffered a torsion spin injury. We didn’t learn that for years. I felt fine on the scene. I watched the tow trucks take the other two cars away, wondering why they weren’t taking mine away, too. The rear axle was broken. The lady had been driving at a speed of about 90 mph.

People often stop me here and ask, “Did you get any money? Did you sue her?” Perplexed, I still fail to see the reasoning. So what if I got $70,000. I couldn’t walk; I couldn’t talk. For most of the nine years thereafter, I was bedridden.

Dysautonomia Diagnosis

I was confined to a wheelchair and couldn’t fit down a restaurant aisle. I couldn’t look at the shelves of yarn or I would throw up. The doctors thought I was malingering, until a cardiologist performed the Tilt Table Test and diagnosed me with dysautonomia. I was imbalanced and ataxic, and self-diagnosed a vertebral artery dissection. I went to Neurorehabilitation for weeks, and getting out of bed felt like I was a tremendous rock with no inertia, trying to move. Later, with the traumatic brain injury (TBI), I developed and self-diagnosed diabetes insipidus (DI), before I died of kidney failure. Even in the hospitals, the doctors asked me if I wanted valium, told me I was “too young to be a drug addict,” and asked me if I had a “psychiatric history.” The nurses would tell me to “just be a patient,” and then tell me “it’s a good thing you’re a doctor” when they tried to give me a beta-blocker to slow down my heart rate. My heart rate goes down to 35 beats/min every night. Slowing it down even more could have killed me during my sleep.

I lived on an IV PICC line for almost 4 years. What an oxymoron for an anesthesiologist to be constantly changing her own IV at home. It was a hard time. I got myself off the IV, by going down from 60 ml/hr to 59 ml/hr and so on. Finally, we pulled it out. The doctors did not realize that it could not stay in forever or I would die of an infection.

What I Learned: Fighting for Myself, Educating Others

What is the bottom line that I learned from all of this, being a doctor myself? Arguing with other doctors and surgeons for years? This is it: Women have to be knowledgeable about their own health. I had to fight for my diagnoses, each one of them, even the dysautonomia. It didn’t matter that I was a physician, my symptoms were downplayed and often ignored. Medications were offered that would have killed me. I had to fight. I had to become the expert in my own health. This was not an easy task when I was gravely ill but the choice was clear: fight back or die.

Eventually, I reached a point where I could at least write. My Stanford, USC, and Perelman University of Pennsylvania School of Medicine brain overflowed with medical information.

I did think straight on paper and in my own time (despite the doctors best attempts to convince me otherwise). So, in my trapped-in form of disarray, I learned about menopause, hormone replacement therapy (HRT), and common women’s health issues. I made it my mission to educate girls and women. Recently, I completed my fifth book, Archives of the Vagina: A Journey through Time. It starts from a girls’ First Period, and continues with thoughts Aristotle had on menstruation, other men who contributed to women’s age of consent for sexual intercourse. I pass it on to you as my life’s work to help women worldwide. If you are ill now, keep fighting.

Become the expert in your own health. Find your voice and when you can, help others find theirs too.

We Need Your Help

Hormones Matter needs funding now. Our research funding was cut recently and because of our commitment to independent health research and journalism unbiased by commercial interests we allow minimal advertising on the site. That means all funding must come from you, our readers. Don’t let Hormones Matter die.

Yes, I’d like to support Hormones Matter.

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This post was published originally on Hormones Matter on March 9, 2015.

Just Released: Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition

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Together with Dr. Lonsdale, I am proud to announce the release of our new book: Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.

If you have followed our blog, Hormones Matter, for any amount of time, you’ll know that we spend a lot time writing about mitochondrial distress. Mitochondria are the engines that fuel our cells and sit at the nexus of health and disease. Healthy mitochondria do much to stave off disease, allowing the body to survive all manner of modern stressors, from illness to toxicant exposures, and everything in between. Unhealthy mitochondria, on the other hand, can set into motion a series of reactions leading to complex, multisystem illnesses that modern medicine often has no earthly idea how to treat. This book is about those illnesses and the mitochondrial cascades that allow their existence.

We cover the chemistry of illness from the mitochondria upwards through the autonomic system, to the symptoms and back again. It is a chemistry that we seem to have forgotten in recent years, a chemistry we like to ignore when it contradicts our presumptions about pharmaceutical medicine and diet, and a chemistry that kicks us in the butt when we deny its importance. The chemistry is complicated on its surface, but a deeper dive reveals what Dr. Lonsdale refers to as ‘the exquisite simplicity‘ of health and disease. This book will teach you that chemistry and much more.

Why Thiamine? Why Now?

Thiamine takes center stage in this book, not because it is a magic vitamin that cures all, but because it sits atop the mitochondrial energy pathways. It is a gatekeeper of sorts, determining if or how other downstream mitochondrial functions proceed. For some inexplicable reason, amid all the research on the importance of other nutrients, we seem to have forgotten thiamine. Over and over again, we are presented with cases on Hormones Matter of overt thiamine deficiency, and yet, rarely do physicians consider it. More often than not, it is the patients or their caregivers that figure it out.

Why don’t we consider one of the most fundamental units of health? The short answer, if we are honest with ourselves, pharmacology and surgery are far sexier than nutrition. Unfortunately, however, disease processes do not develop because of drug deficiencies or a lack of surgical prowess. In the Western world, they develop in large part because of nutrient deficiencies within the context of high calorie malnutrition and in conjunction with other stressors. Understanding the chemistry that decides health or disease is critical to achieving health. A key component of that chemistry involves thiamine. This book details how to recognize, evaluate, treat, and understand thiamine deficiency. It is a complicated topic, but written for a broad audience.

Buy Now and Receive a Discount

For a limited time, the publisher is offering a 30% discount off of the list price and free shipping if the book is ordered from their site. Just click the link below enter the promotional code ATR30 at checkout.

Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition

The discount does not apply to Amazon orders.

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Adverse Reactions, Hashimoto’s Thyroiditis, Gait, Balance and Tremors

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One of the things I most love about social media and health research is the opportunity to identify patterns of illness across different patient groups. Here is an example of finding research from one patient group, ThyroidChange, that likely spans many others (Gardasil injured, post Lupron Hashimoto’s, and Fluoroquinolone reactions – to name but a few) and offers clues to a perplexing array of symptoms. The research, is about a little known association between movement and balance disorders and Hashimoto’s thyroiditis: Ataxia associated with Hashimoto’s disease: progressive non-familial adult onset cerebellar degeneration with autoimmune thyroiditis.  Some background.

Hashimoto’s Disease

Hashimoto’s is the most common causes of hypothyroidism afflicting women at a rate of 10 to 1 compared to men. It is an autoimmune disorder in which antibodies attack the thyroid gland and destroy its ability to maintain normal thyroid hormone concentrations. The most common symptoms include: fatigue, muscle pain, weight gain, depression, cognitive difficulties, cold intolerance, leg swelling, constipation, dry skin. If left untreated, goiter – a swollen thyroid gland, appears. If left untreated for an extended period, cardiomyopathy (swelling of the heart muscle), pleural (lung) and pericardial (heart) effusion (fluid), coma and other dangerous conditions develop.

Hashimoto’s and Cerebellar Degeneration

A little known risk in Hashimoto’s is cerebellar degeneration. The cerebellum is the cauliflower looking section at the base of the brain that controls motor coordination – the ability to perform coordinated tasks such as walking, focusing on a visual stimuli and reaching for objects in space. The walking and balance disturbances associated with cerebellar damage or degeneration have a very distinct look, a wide gait, with an inability to walk heel to toe. Cerebellar ataxia looks like this:

In recent years, cerebellar involvement in attention and mood regulation have also been noted. The physicians reporting the Hashimoto’s – ataxia connection present case studies of six patients with Hashimoto’s disease, presumably controlled with medication and a progressive and striking shrinkage of the cerebellum (see report for MRI images) along with progressively debilitating ataxia (walking and balance difficulties) and tremors. Here’s where it becomes interesting.

Hashimoto’s: Medication Adverse Reaction and Misdiagnosis

Hashimoto’s disease is prevalent in our research into medication adverse reactions for Gardasil and Cervarix and Lupron, with some indications it may develop post Fluoroquinolone injury as well. The symptoms are difficult to distinguish from other neurological and neuromuscular diseases such as chronic fatigue syndrome, fibromyalgia, multiple sclerosis and an array of psychiatric conditions, and so Hashimoto’s often goes undiagnosed or is misdiagnosed and mistreated for some time.

Hashimoto’s, Demyelination and Cerebellar Damage

In some of the more severe adverse reactions to medications and vaccines that would lead to Hashimoto’s, the tell tale cerebellar gait disturbances have been noted and documented, along with a specific type of tremor (discussed below).

Research from other groups shows a strong relationship between thyroid function and myelin/demylenation patterns in nerve fibers in animals. Specifically, insufficient T3 concentrations demyelinates nerve axons, while T3 supplementation elicits myelin regrowth. Myelin is the white sheathing, the insulation that protects nerves and improves the electrical conduction of messages in sensory, motor and other neurons. Like co-axial cable in electrical wiring, when the protective sheathing is lost, electrical conductance is disrupted. The early symptoms of a demyelinating disease neuromuscular pain, weakness, sometimes tremors. These can be misdiagnosed as multiple sclerosis, fibromyalgia, chronic pain, when in reality, the culprit is a diseased thyroid gland.

Back to the Cerebellum

The cerebellum is a focal point of white matter axons – myelinated sensory and motor nerves. The cerebellum is where input becomes coordinated into motor movements or movement patterns. White matter damage in the cerebellum causes cerebellar ataxia, the movement and balance disorders displayed above. Hashimoto’s elicits white matter disintegration. Adverse reactions to medications and vaccines can elicit autoimmune Hashimoto’s disease. See the connection?

The Thiamine – Gut Connection

It gets even more interesting when we add another component of systemic medication adverse reactions – nutritional malabsorption, specifically thiamine deficiency. Almost across the board, patients with medication or vaccine adverse reactions report gut disturbances, from leaky gut, to gastroparesis, constipation, pain and a myriad of other GI issues that make eating and then absorbing nutrients difficult. Gut issues are common in thyroid disease too.

As we learn more, and as individuals are tested, severe nutrient deficiencies are noted, in vitamin D, Vitamin B1, B12, Vitamin A, sometimes magnesium, copper and zine. We’ve recently learned of the connections between Vitamin B1 or thiamine deficiency and a set of conditions affecting the autonomic nervous system called dsyautonomia or Postural Orthostatic Tachycardia Syndrome (POTS) linked to thiamine deficiency in the post Gardasil and Cervarix injury group. It may be linked to other injured groups as well, but we do not know yet.

Thiamine and Cell Survival

Thiamine or vitamin B1, is necessary for cellular energy. It is a required co-factor in several enzymatic processes, including glucose metabolism and interestingly enough, myelin production (the Hashimoto’s – cerebellar connection). We can get thiamine only from diet. When diet suffers as in the case of chronic alcoholism, where most of the research on this topic is focused, or when nutritional uptake is impaired, thiamine deficiency ensues. Thiamine deficiency can elicit cell death by three mechanisms:

  1. Mitochondrial dysfunction (reduced energy access) and cell death by necrosis
  2. Programmed cell death – apoptosis
  3. Oxidative stress – the increase in free radicals or decrease in ability to clear them

Thiamine deficiency in and of itself can elicit a host of serious health symptoms. The cell death and disruption of cellular energy balance can be significant and lead to a totally disrupted autonomic system.

Thiamine and Myelin Growth

Add to those symptoms, the fact that thiamine is involved in the growth myelin sheathing around nerves, and we have a whole host of additional neuromuscular symptoms masking as fibromyalgia, multiple sclerosis, chronic fatigue. Like with MS, limb and body tremors are noted in dysautonomic syndromes such as POTS. (Video of POTS tremors, note the uniqueness of the POTS tremor and the similarity between it and the foot tremor shown above along with cerebellar ataxia).

Let thiamine deficiency continue unchecked for period and we get brain damage, as white matter – the myelin disintegrates in the brainstem, the cerebellum and likely continues elsewhere. One of the most prominent areas of damage in thiamine deficiency, is the cerebellum, and hence, the cerebellar ataxia (movement disorders) noted in chronic alcoholics who are thiamine deficient, but also observed post medication or vaccine adverse reaction.

The Double Whammy on Myelin and Cerebellar Function

In the case medication or vaccine adverse reactions, particularly those that reach the systemic level, we have a double whammy on myelin disintegration: from a diseased thyroid gland and a diseased gut. Hashimoto’s and the reduction of thyroid hormones, particularly T3, impairs nerve conduction by shifting from a constant and healthy remyelinating pattern to one of demyelination, while the lack of thiamine further impairs myelin regrowth, because it is a needed co-factor. Both deficiencies affect peripheral nerves, but both also hit the brainstem, the cerebellum and likely other areas within the brain.

Take Home Points

The science of adverse reactions is new and evolving and much of what I am reporting here remains speculative. However, it has become abundantly clear through our research that to address medication adverse reactions or vaccine adverse reactions in a simplistic fashion, by region, or in an organ specific manner, is to miss the broader implications of the compensatory disease processes that ensue. Moreover, to look for symptoms of adverse reactions simply by the drug’s mechanism of action and/or by the standard outcome variables listed in adverse event reporting systems, again misses the complexity of the human physiological response to what the body is perceiving as a toxin. I believe that the entire framework for understanding the body’s negative response to a medication must be shifted to a much broader, multi-system, and indeed, multidisciplinary approach. In the mean time, we will continue to collect data on adverse reactions and offer our readers points of consideration in their quests for healing. I should note, that finding these connections is entirely contingent on the input our community of patients and health activists, both via the personal health stories that so many of you have been willing to share and the data we collect through our research. You know more about your health and illness than we do.

What we Know So Far – Tests to Consider

If you have had an adverse reaction to a medication or vaccine and neuromuscular difficulties, like pain, numbness, motor coordination problems, tremors etc., consider testing for Hashimoto’s thyroiditis. Also, consider thyroid testing when fatigue, depression, mood lability (switching moods), constipation, attentional and focus difficulties are present. In fact, I would consider thyroid testing, specifically for autoimmune thyroid disease like Hashimoto’s, as one of the first disease processes to rule out.

If you have had an adverse reaction to a medication that includes gut disturbances, consider the possibility that you are deficient in key micronutrients such as Vitamin D, the B’s, Vitamin A, magnesium, copper, zinc. And given the modern diet, consider that you were probably borderline deficient even before experiencing the adverse reaction. These nutrients are critically important to health and healing (and no, I do not have an association with vitamin companies or testing companies). Some tests for these nutrients are more accurate than others, so be sure to do your homework first.

If you have symptoms associated with autonomic systems dysregulation such as those associated with POTS, dysautonomia and its various permutations, consider thiamine testing, especially, transkelotase testing.

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If you have experienced a reaction to a medication or vaccine, please share your story in a blog post. Write for us.

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Postscript: This article was published originally on Hormones Matter on October 15, 2013.