thiamine deficiency - Page 8

Severe Gut Dysmotility, Dysautonomia, and Malnutrition

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Severe gut dysmotility

History of Gut Pain and Epigenetic Malnutrition

I am 32 years old and have suffered from ill health all of my life. From as long as I can remember, I’ve experienced gut pain, fatigue, and hyper-sensitivity. If there was something to catch, I would catch it. I react to everything and suffer chronic gut and nerve pain.

As a young child, I had chronic abdominal pain in the lower right quadrant and would often be buckled over in pain. Doctors thought it was appendicitis so removed my appendix but the pain continued. I was chronically tired and sensitive to the cold. I would struggle to get up in the morning to go to school and would stand in the shower dousing myself in hot water for as long as I could to warm up my body. Cold hands and feet has continued into adulthood.

I was born into a family that struggled with spine, neck, head, and gut issues. I was raised on cow’s milk and barley formula as my mother was unable to breastfeed. My mother and aunt had Ehlers Danlos Syndrome. I was diagnosed with it 8 years ago. My mother has Arnold Chiari malformation, my aunt scoliosis. They were post-war children. My grandmother had spinal issues and likely was very deficient in the B Vitamins. My grandfather, aunt and mother all suffered from gut issues, my grandfather eventually dying from bowel cancer. He was sensitive to many foods, particularly FODMAP rich ones.

I had many allergies – dust mite, grass, cow’s milk etc. I suffered an adverse reaction to the MMR vaccine when I was eight – with an intense full body rash. I was bedridden with intense fatigue for two weeks. Around the same time, tests found huge numbers of the parasite dientamoeba fragilis (D fragilis) in my stool. Dientamoeba fragilis together with Blasto hominis, another intestinal parasite, have been found in large numbers in my stool ever since. Despite trying many things, I’ve never been able to get rid of them.

Increasing Food Sensitivities, Weight Loss, Amenorrhea, and Osteoporosis

By the age of ten, I was struggling with depression and increasing sensitivities to many foods – particularly gluten and dairy. The only thing that seemed to help was exercise. I played competitive soccer, did cross-country and athletics and rode my bicycle everywhere. At this time, I started becoming vegetarian, in response to my growing concern about the state of the world, animal cruelty and the environment. This meant consuming a lot of gluten and dairy based foods. As I entered puberty, my body couldn’t keep up with the energy demands of this stage of development and I began losing weight rapidly, despite eating a ton of carbs.

I was working hard at school, and have always pushed myself to succeed, but as my body became more and more unwell, I struggled with focus and concentration. My depression became worse and the world felt very bleak. Everything I ate caused pain, bloating, and fatigue. I was eating lots of pasta and cheese to try to fuel my sports but I continued to lose more and more weight. Throughout my parents had been doing everything to investigate and treat the cause of the illness, but I just kept getting more and more unwell. My weight dropped dangerously low, I developed bradycardia and I struggled to think clearly.

The years passed through adolescence and into early adulthood. Through sheer willpower and making myself eat, despite the intense pain it caused, including severe abdominal cramping, sulfur gas, burning, over-heating, swelling, headaches and more, I could get some extra weight on for a while, but it would quickly fall off again. My growth and development suffered. My bones froze in time – a bone age at 19 showed the bones thought they were 13. I had amenorrhea. I developed osteoporosis. An endoscopy showed an inflamed caecum and inflammatory spots in my sigmoid colon.

Through my teenage years and twenties, I had to follow extremely restrictive diets. I had to quit being vegetarian, as it didn’t leave anything to eat and my body clearly needed nutrients from animal foods to survive. I reacted to FODMAPs, histamines, too much fat, too many carbs – there was so little I could eat without feeling extremely unwell.

I would often experience intense nausea attacks, severe bouts of sudden pelvic pain, stomach bugs, and caught giardia several times. I got shingles at the age of 21, a strange fever induced by tick bites at 22, and viral meningitis at the age of 26.

Gut Dysmotility, Progressive Neuropathy, and Migraine

My gut was becoming lazier and lazier. At the age of 23, I wound up in emergency in extreme abdominal pain after it stopped moving altogether and my intestines became fully impacted. The pain was excruciating. Eight sachets of heavy duty laxatives did nothing to the situation. I was started on prucalopride (an enterokinetic drug) to help get it moving again. I cannot function without this drug now. When I stop taking it, my gut ceases to move altogether.

Through my twenties, I also started suffering from tingling in my arms and legs and increasing peripheral neuropathy. By the age of 27, I would experience episodes where an entire arm or leg was completely numb. Blood work showed my B12 had dropped very low. I went on B12 injections and increased food sources of B12. Things improved for a while but then the neuropathy returned. I subsequently developed Reynaud’s syndrome.

Around the same time, I started developing worsening headaches and a few years later migraines. The migraines were so bad I couldn’t move without intense vertigo and extreme nausea. I had to lie in a pitch dark room and wait it out. Some migraines were preceded by a confusional aura where I couldn’t tell what anyone was saying to me. I could understand the individual words but not when they were strung together in sentences. The vertigo continued for about 6 months.

Exercise became more painful too. Despite being fit, I would suffer from intense DOMS, headaches and nausea after running. Muscles started becoming more and more sore and painful despite taking electrolytes, being careful about my nutrition and warming up and down.

I woke up every morning feeling exhausted and sleep studies revealed I had developed sleep apnea – something I had thought wasn’t so common in women of my age and build.

Stress Fractures, Worsening Neuropathy, and Hypoxia

Earlier this year, I wound up with a bad stress injury in my hip – several stress fractures in my femoral neck despite no blow to the area and no fall – which doctors thought quite unusual for someone of my age who was running low mileage recreationally. The injury brought with it chronic nerve pain along my right side on top of worsening neuropathy.

I would wake up in the middle of the night with numb limbs. Nerves would fire spontaneously in my legs and arms. Nerves in my jaw felt constantly stimulated and my tongue would swirl uncontrollably around in my mouth. My gut stopped moving more and more frequently and I would have to take laxatives regularly to clear it out.

I had severe GI burning and was unable to eat anything other than clear broth and coconut water without pain. An endoscopy found bleeding in my sigmoid colon. My hemoglobin dropped 17 points and I struggled with breathlessness, unable to get up a flight of stairs or even walk a few hundred meters without feeling deeply exhausted.

To date, I have been diagnosed with POTS, Ehlers Danlos Syndrome, dysautonomia, gastroparesis,  severe osteoporosis of the lumbar spine, and peripheral neuropathy. This comes against the backdrop of  the gut problems experienced since childhood. These other health issues were, to no small degree if not caused, then significantly worsened by my gut issues. I have had long periods of time where I couldn’t absorb food or eat very much due to my gut problems, so I have been underweight for most of my life. As a result, I am likely deficient in many nutrients.

Current Diet, Activity, and Recent Testing

Diet

  • Breakfast: steamed greens (e.g. some combo of broccoli, beans, spinach, asparagus, etc.), 1-1.5 scrambled organic egg, 1 cup bone broth with 1 desert spoon collagen peptides + 1 desert spoon seaweed.
  • Lunch: 1 cup bone broth with 1 desert spoon collagen peptides + 1 desert spoon seaweed with 1 egg yolk stirred through OR some homemade chicken liver pate on carrot sticks instead of the egg yolk; 1 raw carrot and/or raw cucumber sticks; sometimes 1 packet of roasted nori.
  • Snacks: 1 glass homemade carrot, celery and ginger juice; some blueberries and/or a kiwi fruit.
  • Dinner: some protein (e.g. half a single piece of salmon, 8 prawns, small amount of red meat), green veggies (e.g. steamed beans, asparagus, spinach, broccoli), a starchy veggie (e.g. pumpkin, sweet potato, beetroot), sometimes some green salad.
  • After dinner: a few blueberries and/or pieces of mandarin, 30-40g vegan carob (cocoa butter, carob powder, no sugar), a cup of herbal tea.

Activity and Exercise

  • Daily: walking – approx. 12-13km over the course of a day including daily activities, as measured on Fitbit.
  • Running: 3x per week – currently at 9km total over the week; very slow 6’20” pace.
  • Yoga: 2x per week 1hr classes – beginner.
  • Physio: 3x 20-25min per week – core exercises for lower back, hips, shoulders etc as set by exercise physiologist.

Recent Testing

These tests were conducted by RN Labs and Great Plains Laboratory before I began thiamine.

Stool – GI-360

  • Klebsiella pneumoniae – very high
  • Proteobacteria – very high
  • Akkermansia muciniphila – very high
  • Escherichia spp. – very high
  • Bacteroides spp. – very high
  • Endolimax nana – very high
  • Eubacterium siraeum – very high
  • Enterobacter cloacae – high
  • Elastase – low
  • Butyrate – low
  • Clostridia – very low
  • Faecalibacterium prausnitzii – very low
  • Veillonella spp. – very low
  • Secretory IgA – very low

Urine – Organic Acid Test

Yeast and fungal markers:

  • 3-Oxoglutaric – 0.69 (<0.33) – Elevated levels of 2-Oxoglutaric suggest dietary vitamin deficiencies or supplementation with 2-ketoglutaric acid. Coenzyme A (derived from pantothenic acid), flavin adenine dinucleotide (FAD) (derived from riboflavin), and thiamine are required for conversion of 2-oxoglutaric acid to succinyl-CoA.
  • Arabinose – 70 (<29) – Urinary levels higher than the reference range may simply reflect a high dietary intake of these fruits. However, arabinitol (which converts to arabinose) is also documented to be produced by the Candida genus of yeast. When elevated in body tissues, it can link with lysine and arginine. In theory, this may block some binding sites for coenzyme pyridoxal phosphate, biotin or lipoic acid at the lysyl residue in apoenzyme proteins. This would impair enzymatic processes, such as transamination of amino acids (in spite of “normal” intake of vitamin B6). A finding of high arabinose, without dietary intake of the above-mentioned fruits, suggests a stool analysis or other tests/examinations for Candida overgrowth.
  • Tricarballylic – 2.3 (<0.44) – Tricarballylic acid is a chemical by-product released from fumonisins during passage through the GI tract. Fumonisins are fungal toxins produced primarily by F. verticillioides. Tricarballylic acid is an inhibitor of the enzyme aconitase and therefore interferes with the Krebs cycle.

Bacterial markers:

Oxalate metabolites:

  • Glyceric – 16 (0.77-7) – High glyceric levels on an organic acids test usually relates to primary hyperoxaluria type 2.
  • Oxalic – 389 (range = 6.8-101) – High oxalic with or without elevated glyceric or glycolic acids may be associated with the genetic hyperoxalurias, autism, women with vulvar pain, fibromyalgia, and may also be due to high vitamin C intake.

Glycolytic Cycle Metabolites:

  • Lactic – 51 (<48) – Elevated by a number of nonspecific influences, such as vigorous exercise, bacterial overgrowth of the GI tract, shock, poor perfusion, B-vitamin defciency, mitochondrial dysfunction or damage, and anemia, among others.

Mitochondrial Markers – Krebs Cycle Metabolites:

  • Succinic – 24 (<9.3) – The most common cause of elevated succinic acid is exposure to toxic chemicals which impairs mitochondria function.
  • Malic – 2.7 (0.06-1.8) – Higher levels of malic acid in urine indicates inefficiencies in energy production. Elevated malic acid values suggest increased need for niacin and CoQ10. When malic acid is simultaneously elevated with citric, fumaric, and alpha-ketoglutaric acids, it strongly suggests cytochrome C oxidase deficiency, indicating dysfunction in the mitochondrial energy pathways.
  • Aconitic – 6.6 (6.8-28) – Elevated in mitochondrial disorders. Aconitase metabolizes citric and aconitic acids, and is dependent on glutathione. Increased levels may indicate additional requirement for reduced glutathione.

Neurotransmitter Metabolites:

  • HVA / VMA Ratio  – 2.3 (0.16-1.8) – An elevated ratio is often the result of decreased conversion of dopamine to norepinephrine by the enzyme, dopamine beta-hydroxylase. This inhibition is commonly caused by Clostridia by-products, including HPHPA, 4-cresol, and 4-hydroxyphenylacetic acid, which are also measured in the OAT.
  • Dihydroxyphenylacetic (DOPAC) – 3.9 (0.08-3.5) – DOPAC levels may be elevated due to inhibition of dopamine beta hydroxylase (DBH) from Clostridia metabolites, the mold metabolite fusaric acid, pharmaceuticals such as disulfiram, food additives like aspartame, or to deficiencies of the DBH enzyme due to copper deficiency, vitamin C deficiency, or malic acid deficiency.
  • Quinolinic – 0.58 (0.85-3.9)

Ketone and Fatty Acid Oxidation:

  • 3-Hydroxybutyric – 5.7 (<3.1) – A moderate urinary increase in 4-hydroxybutyric acid may be due to intake of dietary supplements containing 4-hydroxybutyric acid, also known as gamma-hydroxybutyric acid. Very high levels may indicate the genetic disorder 3-methylglutaconic aciduria involving succinic semialdehyde dehydrogenase deficiency.
  • Acetoacetic – 32 (<10) – High levels of acetoacetate in blood may result from decreased availability of carbohydrates (eg, starvation, alcoholism) and/or abnormal use of carbohydrates storage (eg, uncontrolled diabetes, glycogen storage diseases).
  • Methylsuccinic – 5.7 (0.1-2.2) – Very elevated values may indicate a genetic disorder. Fatty acid oxidation defects are associated with hypoglycemia, and lethargy. Regardless of cause, intake of dietary supplements containing L- carnitine, or acetyl-L-carnitine may improve clinical symptoms.
  • Sebacic – 0.39 (<0.24) – Sebacic acid is a breakdown product of fatty acids. Higher levels can be seen when the breakdown of fats is impaired or blocked. May be associated with Vitamin B2 (aka Riboflavin) deficiency. Riboflavin is needed for fatty acid breakdown.

Nutritional Markers:

  • Vitamin B2 – 0.38 (0.04-0.36)
  • Vitamin C – 598 (10-200)

Discovering Thiamine

During this time, I was fortunate enough to learn about the work of Dr. Lonsdale and Dr. Marrs and have started talking high dose Lipothiamine. After several months, the chronic nerve pain is reducing and my gut has improved somewhat however I still struggle with pain and am very sensitive to a lot of foods.

I also have been learning more about the role of genetics and epigenetics in my condition. I am compound heterozygous for the MTHFR mutations and also have SNPs of the PEMT, NOS3, COMT, MOAB, GST genes alongside a number of other SNPs (including CYP, PONI, GAD, GGH, HTR2A, MMAB, NAT2, SLC, SULT, ALD, CBS, DHFR, MTR, TCN1, CBS, DDC, DRD and more).

I am currently taking 1000mg of Lipothiamine orally per day. If IV was possible, I would do that given my gut problems, but we have not been able to find anyone able to administer that here in Australia. In addition to the Lipothiamine, I take magnesium (800mg), liposomal Vitamin C (6000mg), glutathione (450mg), probiotics, a multivitamin, cod liver oil, B-complex, Alpha Lipoic Acid, zeolite, zinc and methylated b12 (shots occasionally and drops in between).

I follow the Auto-immune Protocol diet (including all fresh, unprocessed food, no sugar, lots of veggies and fruits, organic fish, meat, eggs, etc.), walk daily, practice yoga, meditation, daily stretching and gentle jogging a few times a week.

Improvement with Thiamine and Outstanding Questions

In recent weeks, I’ve been finding the nerve pain has significantly improved on this high dose (1000mg) of Lipothiamine however my gut symptoms are quite bad – with a lot of GI burning. I experienced this when I first started taking the Lipothiamine but it subsequently subsided so I am unsure if this is something I need to just push through or if I am on too high a dose.

I would love to hear others experience and hope that sharing mine is of use to others. I am deeply grateful to Dr. Lonsdale and Dr. Marrs for their groundbreaking work in this area and hope to do whatever I can to spread the word about this vital information so that more people can experience full health and happiness in their lives.

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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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This story was published originally on December 14, 2020.

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Progressive Deterioration of Health With Severe Nutrient Deficiency

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This is the story of my wife’s decline in health following the surgical reconstruction of a torn left hip labrum. I am writing this for my wife because her health has declined so significantly over the past 5 years that she has become medically homebound and bedridden. She is too weak and unbalanced to walk, has become intolerant to light, to foods (she can only eat 10 different foods without having a reaction), to smells, and is in constant and extreme pain. She has also developed severe skin reactions that are destroying her lower extremities. After seeing more than 50 doctors with little to offer, we are posting her story here in the hope that someone will be able to help.

Post-surgical Development of Complex Regional Pain Syndrome

Megan is a 44 year old female who was athletic, very active, and physically fit her whole life. Prior to left hip labral reconstruction on 6/20/2017, Megan did not take a single prescription. She led a very healthy lifestyle, in which she enjoyed playing tennis, doing yoga, swimming, biking, snowboarding, running, hiking, camping, and backpacking regularly. Postoperatively, she developed left foot edema, redness, allodynia, hyperalgesia, diminished proprioception, and balance, and burning pain in her left foot. Despite diligently participating in physical therapy 3 times weekly, she was not able to fade off of her crutches. She continued to have severe lower extremity pain and was diagnosed with Complex Reginal Pain Syndrome (CRPS) on 11/1/2017. In December 2017, Megan participated in an FDA-approved clinical trial of neridronic acid (bisphosphonate) infusions for CRPS without relief. She developed flu-like symptoms, which got progressively worse after each infusion, but eventually resolved.

Skin Manifestations

By January 2018, Megan started to develop lesions on her left foot. Initially, they were pinpoint to large flat lesions. Some of them were extremely itchy. Overtime, the lesions and rash spread up her ankle and shin on her left leg.

Skin and vascular manifestations of nutrient deficiency
Left foot edema and skin lesions May 2018 (left), June 2018 (right)

Over the next several months, while still attending physical therapy, Megan noted a lack of hair growth on her lower left leg, temperature discrepancies, in which the left foot was subjectively hot but objectively cooler than the right foot, blood pooling, and skin discoloration in her feet (dark red/purple) when standing, nail changes, and bilateral lower leg flushing following a warm shower. During this time, food sensitivities were also first observed – initially with beef and shrimp.

More Diagnoses But Little Help

In October 2018, Megan was evaluated by a physician at Brown Medical School, who is an expert with CRPS. He confirmed the diagnosis of CRPS (bilateral lower extremities) and in his provisional assessment of Megan, also diagnosed her with bilateral common peroneal neuralgia and bilateral foot drop. He also suspected Megan has mast cell activation syndrome (MCAS), orthostatic intolerance/dysautonomia (POTS), and hypermobile type Ehlers-Danlos Syndrome (hEDS) and was able to delineate which symptoms were consistent with CRPS and which were not. He did not attribute the blood pooling, the footdrop, flushing, lesions, rash, food intolerances and allergic-like reactions, dermographia, and other skin manifestations to CRPS. He recommended she be evaluated by another physician at the Steadman Clinic to assess for common peroneal nerve entrapment.

In October 2018, the Steadman doctor concluded that Megan did not have a common peroneal nerve entrapment. Instead, he noted irritations in the saphenous and obturator nerve distributions and diagnosed her with “bad luck”. He recommended Megan have an MRI of her lower back to ensure there is no central based pathology contributing to her bilateral symptoms. A lumbar MRI was conducted, which yielded no significant results.

Catastrophic Progression of Symptoms

All symptoms started after an orthopedic surgery on the left hip. Prior to the surgery on June 20th, 2017, there is no significant medical history. She had a clean bill of health prior to surgery – no prescriptions were taken, no known allergies. In April 2018, we learned the hospital that performed the surgery was not properly sterilizing the surgical instruments and operating rooms between surgeries, which resulted in numerous infections, injuries, and illnesses, per an investigation.

New symptoms, which have appeared in the last 24-36 months include: heavy sweating, bladder incontinence (especially after eating and some while sleeping), sudden urge to urinate, sudden urge to drink water, decreased vision, extremely dizzy, and feeling lightheaded when standing. Brain fog has been getting progressively worse. Food reactions and extreme sensitivity to stimuli have been getting progressively worse and more frequent. Menstrual cycles have been getting progressively worse – worst symptoms and highest pain are observed during the cycle. Food reactivity is more likely and worse while menstruating.

Current treatment approaches have not resulted in any lasting or significant improvement. Despite intervention, symptoms have gotten progressively worse. Megan has been medically homebound since 2019.

Large patches of skin peel, turn white, and flake off ankles, shins, and legs below the knees. Clusters of tiny “pin prick” lesions appear on tops of both feet and on legs, including thighs. There is a lace-like pattern of purple/brownish skin discoloration above the knees (Livedo Reticularis), which continues up the thighs. The lesions, rash, and discoloration have been progressing up both legs. Skin/tissue on feet appear purple, blue, red, pink, orange, discolored, and shiny in places. There is no hair growth on both legs below the knees. Toenails on both feet are thick, crumbly, extremely brittle, and yellowish/brown. There is little to no growth of toenails.

Progression of skin symptoms over time. Left- April 2022; middle and right – December 2022

Feet and legs appear less reddish and flushed when elevated, however, they quickly turn purple upon standing. The purple discoloration fades when feet are elevated. Flushing is also present after showering and with temperature changes. Edema is present in both feet, ankles, shins, calves, and knees. An extremely painful, deep “itch” is felt in both feet and lower legs. Tremors are present throughout both legs. Standing upright elicits dizziness, tachycardia, presyncope/syncope, heart palpitations, and blurry vision (especially after eating).

Bilateral footdrop is present without a known cause. As a result, walking is exceedingly difficult, and assistance is required to move throughout the house. Balance, motor planning, proprioception, coordination, and gait have all been dramatically impacted. A wheelchair/transport chair is currently being utilized for community access.

Excruciating 9/10 pain in feet and lower legs. Hyperalgesia and allodynia observed. Socks, shoes, and any other clothing/materials are no longer tolerated below the knees due to pain. Severe 8/10 “deep bone pain” in lower legs and shins. Severe 8/10 joint pain in shoulders, hips, knees, hands, fingers, ankles, and wrists. Muscle spasms and tremors (lower back/body), stiffness, and weakness in legs and arms. It is now difficult to type and to write due to pain in wrists, hands, and fingers. Lights, sounds, touch, and weather/pressure changes cause significant 7/10 pain.

Diet is currently limited to about 10 foods (has decreased over time) due to allergic-like reactions that occur immediately after and while eating foods. The severe reactions have resulted in 3 trips to the emergency room. Foods frequently cause swelling to the face, eyes, and lips, dizziness, nausea, excessive eye dripping and tearing, excessive post-nasal drip, and an extremely painful deep itch with a rash and “pinpoint” lesions to appear on legs and feet. Eating also evokes sweating, extreme fatigue, and tachycardia. Only fresh food is consumed. Leftovers are frozen immediately. The family has not been able to cook inside for over 3 years due to serious respiratory distress, reactions, and irritations to eyes, ears, and throat caused by smoke, scents, and odors. In addition to scents, there is an extremely heightened sensitivity to light and sound. Socks, shoes, and any other clothing/materials are no longer tolerated below the knees.

Nutrient Deficiencies

Over the last year, we have learned that Megan suffers from several nutrient deficiencies, including thiamine, which was measured at only <6 nmols/L in December. After stumbling upon a case story about thiamine deficiency here, it is difficult not to wonder if low thiamine was responsible for her rapid decline in health following the surgery. Many of the symptoms she developed immediately following the surgery, the muscle weakness, edema, foot drop, proprioceptive difficulties are indicative of low thiamine. Over time, she developed an intolerance to most foods, which, from what I understand, is also common with thiamine deficiency. This then spiraled into other sensitivities (light, sound, and scent, etc.) and other sets of bizarre symptoms. In fact, as I do the research, I am learning that many of her ‘diagnoses’ are not independent diseases but could actually be manifestations of the low thiamine.

Of course, as her health declined and her ability to safely tolerate foods also declined, other deficiencies likely came into play. The skin issues may be related to deficiencies in vitamin A, which we have tested, and vitamins D and K, which we have not yet tested. She is also severely deficient in vitamins B12, C, and has low iron, copper, and zinc. Each of these can contribute to a wide variety of symptoms and compound her already poor health.

  • Copper Deficiency 2/16/22
  • Ferritin Deficiency 3/8/22, 8/12/22
  • Zinc Deficiency 8/12/22
  • Vitamin C Deficiency 8/12/22
  • Vitamin A (Retinal) Deficiency 12/9/2022
  • Vitamin B1 (Thiamine) Deficiency 12/9/2022
  • Vitamin B12 (Cobalamin) Deficiency 12/9/2022

Current Symptoms

  • General: heavy fatigue, migraines, low-grade fever, flushing, swollen lymph nodes, night waking, early waking, difficulty falling asleep, and daytime sleepiness
  • Eyes: droopy eye lids, blurry vision, eye dripping, and excessive tearing
  • Ears/Nose/Throat: hoarseness, stuffiness, sore throat, postnasal drip, heightened sense of smell, sinus pressure, ear ringing and buzzing, headache, migraines, sensitivity to loud noises, sores/ulcers on the roof of mouth and tongue, swelling of face/lips/throat, and lips/throat feeling “tingly”
  • Heart: tachycardia, palpitations, swollen ankles/feet, edema, and blood “pooling” in legs
  • Respiratory: shortness of breath/breathlessness, coughing, and wheezing
  • Gastrointestinal Tract: bloating, cramping, acid reflux, alternating diarrhea and constipation, excess flatulence/gas, indigestion, nausea, and poor appetite
  • Urinary Tract: the sudden urge to urinate, and mild bladder leakage/incontinence
  • Musculoskeletal: muscle spasms, tremors, cramps, joint pain, joint stiffness, and muscle weakness
  • Skin: rashes, hives/welts, hair loss, itching, swelling, skin peeling and flaking, livedo reticularis, excessive sweating, “pinpoint” lesions, flat-reddish lesions, and dermatographia
  • Endocrine: cold intolerance, heat intolerance, urge to drink water, abnormally heavy/difficult menstrual periods, chills, and shaking
  • Neurology: difficulty concentrating, difficulty thinking, difficulty balancing, brain fog, dizziness, light-headedness, tingling, and tremors

Previous Medical History

  • Infected with Epstein-Barr/mononucleosis: 1993
  • Pityriasis Rosea in 2011
  • Infected with antibiotic resistant strep throat in 2012
  • Left hip labral tear in 2016
  • Right hip labral tear in 2016
  • Erythema ab igne (due to heating pad) in 2017
  • Left hip arthroscopy on 6/20/2017
    • Femoral osteoplasty
    • Mild acetabular rim trimming
    • Minor shaving chondroplasty
    • Acetabular labral reconstruction – transplanted labrum made from 11cm graft (cadaver tissue)
    • Capsular closure
    • Arthroscopic greater trochanteric bursectomy
    • Windowing of IT band
    • PRP injection
  • FDA Clinical Trial of Neridronic Acid for CRPS 12/2017

Current Diagnoses

  • Right hip labral tear, FAI/CAM Impingement, Bursitis, 2016
  • Complex Regional Pain Syndrome (CRPS) 11/1/2017
  • Suspected Ehlers-Danlos Hypermobile Type (hEDS) 10/1/2018
  • Suspected Histamine Intolerance/Mast Cell Activation Syndrome (MCAS) 10/1/2018
  • Bilateral Footdrop 10/1/2018
  • Bilateral Common Perineal Neuralgia 10/1/2018
  • Orthostatic Intolerance/Dysautonomia (POTS) 10/1/2018
  • Alternaria Alternata allergy 11/13/19
  • Secondary Polycythemia 1/5/2020
  • Hashimoto’s Thyroiditis 9/14/2021
  • Tinea Pedis Onychomycosis 12/2/2021 (misdiagnosed and overlooked for at least 2 years)
  • Elevated Leukotriene 2/16/22
  • Dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS) 9/6/2022

Current Medications

(updated 1/15/23)

Morning

(Before breakfast)

 Evening

(Before dinner)

 Late Evening

(Before bed)
Naltrexone (LDN) 4.5 mg Vitamin C 1000 mg Metoprolol 12.5 mg
Singulair (Montelukast) 10 mg Zinc (sulfate) 25 mg Neurontin (Gabapentin) 300 mg
Aspirin (NSAID) 81 mg Copper 2 mg Vitamin B1 (Thiamine) 100 mg*
Tagamet (Cimetidine) 200 mg Iron 50 mg Topical Terbinafine Cream (PRN)
Zrytec (Cetirizine) 10 mg Tagamet (Cimetidine) 200 mg  
Synthroid (Levothyroxine) 50 mcg Zrytec (Cetirizine) 10 mg  
Quercetin 500 mg Quercetin 500 mg
Neurontin (Gabapentin) 300 mg Vitamin B1 (Thiamine) 100 mg*  
Vitamin B1 (Thiamine) 100 mg*  

*Vitamin B1 (Thiamine) started 12/23/22

Previous Medications

Short-term Prednisone (following ER Trip) provided significant relief of pain, skin rash, lesions, reduced swelling, and allowed more foods to be tolerated. Produced significant improvement of symptoms.

  • Ketotifen – This medication was introduced and then discontinued due to potential side effects and lack of progress. Megan was taking 1 mg
  • Cromolyn – This medication caused mouth ulcers (white spots) to occur, and it was discontinued. A nebulized form was prescribed but given without instructions as to how to introduce.
  • Xifaxan – 10-day antibiotic course completed on 7/18/22 without improvement

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 Sydney Rae on Unsplash.

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The Red Thread and Thiamine

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There is a saying in China about a Red Thread connecting people who are destined to meet and/or help one another in a profound way no matter how far apart they may be. Our adopted daughter Abby is that red thread. Abby was abandoned and found on the day our oldest daughter, Kayla, turned thirteen. It was at this time Kayla’s health issues were becoming worse. Although we didn’t know exactly what was amiss, we knew that something was wrong. In our efforts to help Abby, our family’s health issues were brought into stark relief. It seems that all of us have suffered from longstanding thiamine insufficiency. Even though my two daughters were born worlds apart, that red thread connects us. We published Abby’s story last week in the hopes that it might help someone else. Here is Kayla’s story.

Unhealthy Beginnings for My Beautiful Daughter: IVF and Induction

Common sayings like ‘you are what you eat’ can be haunting, leading to guilt when we see our children suffer the consequences of our own ill health, especially during pregnancy. My gut was messed up and had been for a very long time before becoming pregnant. I was likely deficient in thiamine and other nutrients and perhaps that is why I struggled to get pregnant in the first place. Sometimes gut dysfunction is obvious, as with constipation or diarrhea, but more often it manifests itself in other ways. That was me. I had/have Ehlers Danlos Syndrome (EDS) and most likely also, Mast Cell Activation Syndrome (MCAS) and Postural Orthostatic Tachycardia syndrome (POTS). I did not know any of this though before pregnancy and have only recently, after hours upon hours of research, come to learn how my health impacted my daughter’s health.

Kayla was our first hard-fought-for child. We were married 10 years and had undergone numerous fertility treatments before we finally achieved a successful IVF. Looking back, I realize that I was not healthy prior to or during my pregnancy, even so it was mostly an uneventful pregnancy with little to no typical unpleasantries. I had low progesterone early on that required progesterone injections and suppositories, but after 13 weeks everything stabilized. I had a high blood pressure reading at only one routine visit in my 39th week. The doctor decided to induce. We didn’t question it at the time, but later did. At the hospital, he administered Pitocin, a synthetic oxytocin, without any nurses in the room and left.  The nurses later commented that they were surprised, since my blood pressure was back in the normal range upon admission. Pitocin is just one of my regrets. Why was my body not triggering labor? Gut dysbiosis? Maybe/possibly/probably or maybe she just wasn’t ready to come out.

A Truly Gifted Child

Kayla was an extremely bright child. She wanted to learn chess at four years old. By age 9, I stopped playing with her because she always won. She gave her math brilliant-grandfather a run for his money.  She was homeschooled through 9th grade followed by private and then public school. She was a straight ‘A’ student, participated in various athletics (swim, track, dance, horse riding, etc.) and mastered two musical instruments by the end of high school. Kayla ranked in the top 5th percentile nationally and did well in first semester of college, but little did we know how precarious her health had become. Perhaps because of her intelligence and achievements, many of her health issues and difficulties were disregarded by physicians. On the surface, she looks well. She is very high functioning, but she has been plagued with an assortment of complicated and largely unrecognized health and neurological issues since birth. During her first semester of college, a series of stressors brought her health crashing down and she is only now beginning to recover. Part of her recovery has been diet, part involves thiamine, but we are still missing some pieces, which is why we are publishing her story.

Early Childhood Symptoms and Triggers

Her early childhood was marked by early bouts of bronchitis necessitating antibiotics. She suffered croup through age 7 years and seasonal allergies through her teens for which she used Claritin regularly. Nighttime enuresis was a problem until we removed gluten from her diet when she was 12 years old. Similarly, her speech was often and seemingly randomly slurred. She received speech therapy through the school to no avail. In 2018, we removed dairy from her diet and the slurring disappeared. It appears that just as a gluten reaction triggered her nighttime enuresis, the ingestion of dairy was some sort of trigger for her slurred speech. I should note, before learning this, we experimented with probiotics, fish oils, digestive and pancreatic enzymes, and a variety of other supplements off and on for years with no noticeable or lasting changes. Her younger years were marked also by body temperature dysregulation, i.e., hot in the winter, cold in the summer. Finally, most things, not all, came easy to her. She had extreme strengths and weaknesses with her strengths often masking her weaknesses. Noticed by many of her extracurricular teachers hard things seemed easy, and easy things hard. Her brain craved complexity.

Vaccinations, Cyclic Fevers, and Green Drinks

In her preteen years, she received numerous vaccinations (required and strongly recommended) prior to our trip to China to adopt her sister. Shortly after, she began to develop worsening mood swings, anxiety, depression, brain fog and has experienced dizzy spells off and on since then.

When her menses began, she bled heavy for three straight weeks. Her doctor put her on birth control pills to stop it; again, a symptomatic treatment. She was borderline to severely anemic and often had PMS and painful periods.

During her teen years, she had repeat and unexplained fevers. She was sick with high fever/flu-like symptoms for three days every four weeks for three years. She’d get sick like clockwork! She would become weak, sleep a LOT, as if she were in a coma. Her doctor was stumped. I had been reading a lot about the use of systemic enzymes used by German doctors. The book by Karen DeFelice mentioned viruses often have a cyclical pattern. So we used high doses of ViraStop2x according to her protocol for a 3-week “holding spell” and it was gone. No more cyclical episodes.

In trying to get healthier, she began “green drinks” (spinach/fruit) 5-6x week. Six months later she was very sick: anemic again, double ear infection, abnormal EEG with heart palpitations, chest pain, and shortness of breath. The cardiologist had put her on a heart monitor for three days, but the results were normal. Perhaps oxalates? I began learning more about oxalates and we began eating less of these foods overall. I’m grasping at straws…

The Red Thread and Thiamine

In 2018, we learned about TTFD/thiamine and began taking Sulbutiamine. My younger daughter, Abby, has improved immensely. In fact, my entire family now uses thiamine and we all feel much better. Before taking thiamine, we all used to be so tired after spending a day at the beach and everyone would need to nap. Now, after supplementing with thiamine for a while, everyone still has high energy levels after these trips. Except for Kayla. Her results with thiamine have been mixed. There seems to be more at play. Perhaps she requires a higher dosage of thiamine or maybe additional nutrients are needed.

Her recent labs for CBC/CMP, thyroid, A1C, vitamin D are all normal. Manganese is low and prostaglandin F2 is elevated. There is some indication of malabsorption based on her bloodwork.  Recently, an Organic Acids Test indicated normal oxalates, low dopamine and serotonin, and extremely high ketones/fatty acids. She has had high folate levels in the past, but at present are normal. Her B12 levels at present are elevated.

In 2019, she began having occasional extremely painful periods where she would be on-the-bathroom floor curled in the fetal position until Ibuprofen kicks in. Her skin is often very pale. Her doctor is not concerned about the increasingly painful menses or the ketones/fatty acid elevations.

My frustration as a parent is that because most of my child’s bloodwork is normal, the doctors write-off her symptoms as stress-related and recommend things like yoga, meditation or saunas or some fluff. Not that these things are bad, but there is something more at work here and no one seems interested in figuring it out. I am bothered that when they do see markers of inflammation or malabsorption they ignore them or really don’t know what to make of it.

Environmental Causes Of Ill-health and Longstanding Thiamine Insufficiency

Over the course of these last years, I have come to realize how important diet and environment are to health. When the pond is poisoned, sadly the tadpoles are hit first, are hit the hardest and display the affects most noticeably. Our youngest child was hit hard. Her circumstances prior to adoption were not conducive to health and she has had many struggles to overcome those early stressors and nutrient deficiencies. Likewise, owing to my ill-health prior to and during my pregnancy and the subsequent western medical treatments, Kayla struggles too. The pond was poisoned for both of them. All lifeforms that drink from a poisoned pond will manifest problems at some point, in some way. Perhaps if we had known about thiamine when they were younger, their problems wouldn’t have manifested the way they did.

Fortunately, Kayla has always eaten healthy, and has been active and athletic throughout her life. As an adult, she experiments with the removal of foods for periods of time to see if things improve, such as grains or cow’s milk and she is cooking creatively. She has been sugar-free for over a year. She takes vitamins and minerals and Sulbutiamine. She recently switched to Lipothiamine and Allithiamine and is now slowly increasing it to see if her dizziness will abate at some point.

I would trade all of her past accolades to have her in better health. We don’t know where her road will lead. Healing is multi-dimensional and someday we hope to look back at today with those oft used words “remember when…”.

Michelangelo was nearing 90 when he said “I am still learning.”  I hope to be too.

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 first on August 31, 2020. 

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Is TTFD toxic

Is TTFD Toxic?

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Quick Thoughts: Hyperemesis and Early Thiamine Deficiency

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hyperemesis thiamine

A while back, I published an article about expanding the symptoms considered to be associated with thiamine deficiency. Conventionally, we tend to look only at the end stage results of long term thiamine deficiency as being the indicators of disease, forgetting that to get to this stage there was a prodrome, which, except in rare cases, proceeds across many months, if not years. Even with a severely thiamine restricted diet, it can be weeks to months before the more traditionally recognized neurological or cardiovascular symptoms manifest. A series of studies conducted in early 1940s found that among the most common early symptom of thiamine deficiency was GI dysfunction ranging from nausea, vomiting, and constipation, to severe food intolerances and complete anorexia. The prominence of vomiting in this scenario got me thinking about hyperemesis, the severe and near continuous vomiting experienced by some women during pregnancy, but also, about the exploding numbers of illnesses that involve GI dysmotility and dysbiosis. From IBS to SIBO, gastroparesis to constipation and really everything in between, could they also be a consequence of insufficient thiamine? According to the research, yes. Indeed, these non-pregnant cases of GI dysfunction, easily fall under the umbrella of gastrointestinal beriberi – thiamine deficiency that manifests in GI system, sometimes months before the onset of the more traditional cardiovascular or neurological forms.

Pregnancy, Vomiting, and Thiamine

With pregnancy, we know that the energy demands upon the mom are enormous, which means that given its role in energy metabolism, thiamine demands are enormous as well. Some older research estimates the demand for thiamine increases by at least 5X that of a non-pregnant woman. Other research, which I seem to have lost the reference for, posited the demand increased by a factor of 10. Personally, I believe the demand and need for thiamine and other nutrients during pregnancy is higher yet.

The RDA for thiamine during pregnancy is 1.4mg per day, just a fraction over the RDA for non-pregnant women (1.1mg). A quick scan of prenatal vitamins shows that most include from 1.5mg – 3mg of thiamine, woefully below the estimated need of 5-10X non-pregnant levels. That discrepancy alone could cause problems in women who may have been borderline thiamine deficient pre-pregnancy. The pregnancy itself would tip her over into deficiency territory. This then could very easily lead to increased vomiting, which then would further hamper the intake and absorption of thiamine, exacerbating the deficiency, and cause more vomiting; a cycle that becomes especially dangerous to both mom and the baby as time progresses.

While it is easy to see how thiamine deficiency is a common consequence of hyperemesis, it is possible that it is also a contributing cause. Dr. Lonsdale and others have long asserted a role for thiamine deficiency as a causative contributor to hyperemesis. Just based upon the estimated need versus the availability in prenatals and diet, especially once vomiting has begun, this makes sense. Importantly, these types of symptoms have been observed across many case studies unrelated to pregnancy, so much so that gastrointestinal beriberi is a legitimate, though woefully under-recognized form of thiamine deficiency disease. As mentioned previously, the symptoms include GI distress in the form of vomiting, gastroparesis (delayed stomach emptying, which results in vomiting), disturbed GI dysmotility, either too much or too little, and dysbiosis. All of this is documented to be attributable to insufficient thiamine in non-pregnant people. Is it so difficult to see that pregnancy too could elicit or exacerbate gastrointestinal beriberi?

But Wait, What About Carnitine and CoQ10?

If you follow my work, a few years back I mapped one of the causes of hyperemesis to a carnitine deficiency. Carnitine is critical to the metabolism of fatty acids, and its deficiency along with another mitochondrial co-factor, CoQ10, have been linked to a condition called Cyclic Vomiting Syndrome (CVS). Supplementation with l-carnitine and CoQ10 appears to resolve the vomiting with CVS. After publishing that paper, anecdotal reports came back suggesting that l-carnitine and CoQ10 was useful in preventing and resolving hyperemesis. I believe that it is still involved in many cases, but it is possible that thiamine is involved as well and it may be a contributing factor to the carnitine deficiency. Thiamine, in addition to its role in key enzymes involved in carbohydrate and protein metabolism, is also involved in fatty acid metabolism and positionally, it sits a step above carnitine.

Here we have a few options beyond the traditional and largely ineffective anti-emetic medications given to women with hyperemesis; options that I would argue are significantly safer and healthier for mom and baby and likely far more effective. If thiamine and/or l-carnitine deficiency are at the root of hyperemesis, correcting those deficiencies early should give women a much easier and healthier pregnancy.

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 article was published originally on May 24, 2021. 

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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).

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 Jonny Lindner from Pixabay.

This article was first published on July 1, 2019.    

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Is TTFD toxic

Is TTFD Toxic?

I regularly receive correspondence from people asking whether thiamine tetrahydrofurfuryl disulfide (abbreviated TTFD), a thiamine (vitamin B1) derivative, is toxic

What Is Thiamine to Energy Metabolism?

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Thiamine -key to energy metabolism

What Is Energy?

Energy is an invisible force. The aggregate of energy in any physical system is a constant quantity, transformable in countless ways but never increased or diminished. In the human body, chemical energy is produced by the combination of oxygen with glucose. This reaction is known as oxidation. The chemical energy is transduced to electrical energy in the process of energy conservation. This might be thought of as the “engine” of the brain/body cells. We have to start thinking that it is electrical energy that drives the human body.

The production of chemical energy is exactly the same in principle as the burning of any fuel but the details are quite different. The energy is captured and stored in an electronic form as a substance known as adenosine triphosphate (ATP) that acts as an energy currency. The chemical changes in food substances are induced by a series of enzymes, each of which combine together to form a chain of chemical reactions that might be thought of as preparing food for its ultimate breakdown and oxidation.

Each of these enzymes requires a chemical “friend”, known as a cofactor. One of the most important enzymes, the one that actually enables the oxidation of glucose, requires thiamine and magnesium as its cofactors. Chemical energy cannot be produced without thiamine and magnesium, although it also requires other “colleagues”, since all vitamins are essential. A whole series of essential minerals are also necessary, so it is not too difficult to understand that all these ingredients must be obtained by nutrition. The body cannot make vitamins or essential minerals. There is also some evidence that thiamine may have a part to play in converting chemical energy to electrical energy. Thus, it may be the ultimate defining factor in the energy that drives function. If that is true, its deficiency would play a vital role in every disease.

Energy Consumption

Few people are aware that our lives depend on energy production and its efficient consumption. A car has to have an engine that produces the energy. This is passed through a transmission that enables the car to function. In a similar manner, we have discussed how energy is produced. It is consumed in a series of energy requiring chemical reactions, each of which requires an enzyme with its appropriate cofactor[s]. This series of reactions can be likened to a transmission, consuming the energy provided from ATP and enabling the human body to function. If energy is consumed faster than it can be synthesized, or energy cannot be produced fast enough to meet demand, it is not too difficult to see that an insufficient supply of energy, a gap between supply and demand, would produce a fundamental change in function. This lack of function in the brain and body organs presents as a disease. The symptoms are merely warning the affected individual that something is wrong. The underlying cause of the energy deficiency has to be ascertained in order to interpret how the symptoms are generated.

Why Focus On Thiamine?

We have already pointed out that thiamine does not work on its own. It operates in what might be regarded as a “team relationship”. But it has also been determined as the defining cause of beriberi, a disease that has affected millions for thousands of years. Any team made up of humans requires a captain and although this is not a perfect analogy, we can regard thiamine as “captain” of an energy producing team. This is mainly due to its necessity for oxidation of glucose, by far and away the most important fuel for the brain, nervous system and heart. Thus, although beriberi is regarded as a disease of those organs, it can affect every cell in the body and the distribution of deficiency within that body can affect the presentation of the symptoms.

Thiamine exists only in naturally occurring foods and it is now easy to see that its deficiency, arising from an inadequate ingestion of those foods, results in slowing of energy production. Because the brain, nervous system and heart are the most energy requiring tissues in the body, beriberi produces a huge number of problems primarily affecting those organs. These changes in function generate what we call symptoms. Lack of energy affects the “transmission”, giving rise to symptoms arising from functional changes in the organs thus subserved. However, it must be pointed out that an enzyme/cofactor abnormality in the “transmission” can also interrupt normal function.

In fact, because of inefficient energy production, the symptoms caused by thiamine deficiency occur in so many human diseases that it can be regarded as the great imitator of all human disease. We now know that nutritional inadequacy is not the only way to develop beriberi. Genetic changes in the ability of thiamine to combine with its enzyme, or changes in the enzyme itself, produce the same symptoms as nutritional inadequacy. It has greatly enlarged our perspective towards the causes of human disease. Thiamine has a role in the processing of protein, fat and carbohydrate, the essential ingredients of food.

Generation Of Symptoms

Here is the diagnostic problem. The earliest effects of thiamine deficiency are felt in the hindbrain that controls the automatic brain/body signaling mechanism known as the autonomic nervous system (ANS). The ANS also signals the glands in the endocrine system, each of which is able to release a cellular messenger. A hormone may not be produced in the gland because of energy failure, thus breaking down the essential governance of the body by the brain. Hypoxia (lack of oxygen) or pseudo-hypoxia (thiamine deficiency produces cellular changes like those from hypoxia) is a potentially dangerous situation affecting the brain and a fight-or-flight reflex may be generated. This, as most people know, is a protective reflex that prepares us for either killing the enemy or fleeing and it can be initiated by any form of perceived danger. Thus, thiamine deficiency may initiate this reflex repeatedly in someone that seeks medical advice for it. Not recognizing its underlying cause, it is diagnosed as “panic attacks”. Panic attacks are usually treated by psychologists and psychiatrists with some form of tranquilizer because of the anxiety expressed by the patient.

It is easy to understand how it is seen as psychological, although the sensation of anxiety is initiated in the brain as part of the fight-or-flight reflex and will disappear with thiamine restoration. It may be worse than that: because the heart is affected by the autonomic nervous system, there may be a complaint of heart palpitations in association with the panic attacks and the heart might be considered the seat of the disease, to be treated by a cardiologist. The defining signal from the ANS is ignored or not recognized. Because it is purely a functional change, the routine laboratory tests are normal and the symptoms are therefore considered to be psychological, or psychosomatic. The irony is that when the physician tells the patient “it is all in your head”, he is completely correct but not recognizing that it is a biochemical functional change and that it has nothing to do with Freudian psychology.

A Sense Of Pleasure

We have known for many years that dietary sugar precipitates thiamine deficiency. A friend of mine had become well aware that alcohol, in any form, or sugar, will automatically give him a migraine headache. He still will take ice cream and suffer the consequences. I have had patients tell me that they have given up this and that “but I can’t give up sugar: it is the only pleasure that I ever get”. They still came back to me to treat the symptoms. We have come to understand that we have no self-responsibility for our own health. If we get sick, it is just bad luck and the wonders of modern medicine can achieve a cure. The trouble is that a mild degree of thiamine deficiency might produce symptoms that will make it more difficult to make the necessary decisions for our own well-being. Let me give some examples of symptoms that are typically related to this and are not being recognized:

  • Occasional headache, heartburn or abdominal pain
  • Occasional diarrhea or constipation
  • Allergies
  • Fatigue
  • Emotional lability
  • Insomnia
  • Nightmares
  • Pins and needles
  • Hair loss
  • Palpitations of the heart
  • Persistent cough for no apparent reason
  • Voracious, or loss of appetite

The point is that thiamine governs the energy synthesis that is essential to our total function and it can affect virtually any group of cells in the body. However, the brain, heart and nervous system, particularly the autonomic (automatic) nervous system (ANS) are the most energy requiring organs and are likely to be most affected.

Since the brain sends signals to every organ in the body via the ANS, a distortion of the signaling mechanism can make it appear that the organ receiving the signal is at fault. For example, the heart may accelerate because of a signal from the brain, not because the heart itself is at fault. Hence heart palpitations are often treated as heart disease when a mild degree of thiamine deficiency in the brain is responsible.

We have known for many years that sugar in all its different forms can and will precipitate mild thiamine deficiency. It is probably the reason why sugar is considered to be a frequent cause of trouble. If thiamine deficiency is mild, any form of minor stress may precipitate a much more serious form of the deficiency. An attack by an infecting organism is a source of stress imposed on the affected person and requires a boost of energy consumption. Therefore the illness that follows can be regarded as a “war” between the attacking disease producing organism and the brain/body that has to mobilize a defense. Either death, recovery, or a “stalemate” might be the expected outcome. If this is the truth, then any disease will respond to the ingestion of nutrients, particularly thiamine. It strongly suggests that Holistic or Alternative medicine could add a huge benefit to health preservation or the treatment of disease.

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This article was published originally on August 25, 2020.

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Is TTFD toxic

Is TTFD Toxic?

I regularly receive correspondence from people asking whether thiamine tetrahydrofurfuryl disulfide (abbreviated TTFD), a thiamine (vitamin B1) derivative, is toxic

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.

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Image by Gordon Johnson from Pixabay.

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

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Thiamine Deficiency Gaining Recognition: New Book

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new thiamine book

In the 5 years since Dr. Lonsdale and I published our book: Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition (and 50 years since Dr. Lonsdale first began working with thiamine) recognition of the role of thiamine in health and disease have increased steadily year over year. Sales of the book double each year. Admittedly, the numbers were low and remain low in comparison to other popular topics, but the increase in awareness is heartening. Unfortunately, much of this awareness has not reached the medical profession. We regularly see reports in the medical literature boasting recognition of ‘rare’ cases of thiamine deficiency diseases like beriberi and Wernicke’s. If only physicians knew how common these conditions were and that they are only rare because we are not looking. Insufficient thiamine is Hiding in Plain Sight.

A New Book

In 2020, a UK physician by the name of Jo Dixon published a new book on thiamine deficiency, a personal account of her declining health, her discovery of thiamine, and her efforts to get treatment and spread the word. The book, called The Missing Link in Dementia, A Memoir, documents her journey. Unfortunately, she neither mentions thiamine in the title, the description, or even in the text until halfway through. One would not know the book is about thiamine until one reads it or unless it is recommended, so I will recommend it here. This would be a great starter book for someone beginning their health journey.

She has a second book listed on Amazon, Swimming in Circles that I have not read, but I suspect it details thiamine deficiency in fish in other animal populations.

While I would have preferred her to mention thiamine deficiency in the title or introduction, I found the book quite telling of the lengths one has to go to uncover this deficiency, even as a physician. Her case, unfortunately, is highly typical of what we see in patients everywhere. She had longstanding bowel dysfunction, which limited her ability to eat and maintain nutritional status. She led a busy life as a physician and mother of four children, which put pressure on thiamine stability. Even so, she functioned quite well for a long time. It wasn’t until her health took a severe turn for the worse that thiamine deficiency was recognized. Like others who develop issues with thiamine, she was forced to diagnose herself. No other physician, and she saw many, could provide any answers to her declining health. She had to figure it out herself. She was also forced to treat herself. Fortunately for her, she convinced a physician friend to provide IV thiamine, a protocol that was not accepted by her hospital and one she could not readily provide to other patients when she identified their deficiencies.

All of this is typical. We believe that thiamine deficiency was solved and thus any cases that do appear must be rare (to a tee, most case reports include ‘rare’ in the title or introduction). In reality, they are only rare because we do not look for them. We believe falsely that thiamine deficiency emerges acutely, and while it does in some cases, mostly it sits in the background, quietly and insidiously destroying one’s health. We have cases of high functioning individuals whose health begins to decline and whose thiamine levels are tested as low and should merit treatment but ignored for years as not being pertinent. And those are the lucky ones. Most physicians refuse to test for thiamine.

Thiamine deficiency is easily treatable if recognized early. It becomes more complicated as the years pass, and it is impossible if we never bother to look.

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, and like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

Photo by Alif Caesar Rizqi Pratama on Unsplash.

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Is TTFD toxic

Is TTFD Toxic?

I regularly receive correspondence from people asking whether thiamine tetrahydrofurfuryl disulfide (abbreviated TTFD), a thiamine (vitamin B1) derivative, is toxic

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