As a result of my participation in Hormones Matter, I receive quite a few emails that record histories of patients who have often languished with inexplicable symptoms, sometimes for years. I am going to record two histories here without identifying any possibility of the involved patients being recognized.
Patient number 1: Cyclic Vomiting, Hyper-salivation, Sensory and Neurological Issues
This is the story of a boy who had what was described as “chronic cyclic vomiting from 11 months until 24 months of age, sometimes 3 to 4 times a day”. Food refusal with chronic vomiting and severe weight loss (failure to gain) was described. His diet was recorded as consisting basically of chicken/beef and vegetables. Frequent use of Paracetamol for ear infections with fever was described. As an infant he experienced hyper-salivation, bad enough for wearing a bib 24/7. Extreme sensory issues were mentioned but were not specified. Dilated pupils from a very young age***, neurological issues with confusion, memory problems, speech difficulty and heart racing/palpitations were mentioned together with eye tracking difficulties. A high concentration of arsenic had been found, presumably in urine, although this was not specified. Candida, a form of yeast, had evidently been a frequent infection. He was reported to have Hashimoto (a thyroid dysfunction) and a high blood glucose ***. He exhibited complete lack of coordination, always “appearing drunk”, talking gibberish and repetitive behavior.
Discussion of Symptoms: Patient 1
Sometimes known as winter vomiting, the cause of this relatively common condition is said to be unknown. Recurrent vomiting is one of the symptoms recognized for centuries in the thiamine ( vitamin B1) deficiency disease, beriberi. I had several patients with cyclic vomiting, described in our book (Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnutrition) that responded to thiamine treatment.
Appetite is governed in the lower brain by several hormones, explaining why a voracious appetite and food refusal could both be a signature of thiamine deficiency, depending on severity and chronicity of the deficiency.
Severe weight and stature increase (failure to thrive), is a signature finding in familial dysautonomia, a genetically determined disease. Thiamine deficiency also causes dysautonomia. I reported a patient with eosinophilic esophagitis whose dysautonomia resulted in failure to thrive. With thiamine treatment his weight and height increased dramatically (see: Eosinophilic Esophagitis May Be a Sugar Sensitive Disease).
Extremely common in children, this and jaundice of the newborn are both now known to be the result of inefficient oxygen utilization. Thiamine deficiency is an outstanding cause.
The salivary glands are under the control of the lower brain and this fits with thiamine deficiency.
Extreme Sensory Issues
This is the result of inefficient oxidative metabolism in brain and has been a well known problem in thiamine deficiency beriberi. It is interesting that diabetics are sometimes pulled over and accused of drinking because of erratic driving and subsequent “drunken” behavior. I strongly suspect that this is a thiamine deficiency affect, because thiamine metabolism has recently been found to be closely related to metabolism in diabetes.
Permanently Dilated Pupils ***
This is a cardinal sign of sympathetic nervous system overdrive, fitting in with the diagnosis of dysautonomia.
Neurological Issues: Confusion, Memory, Speech, and Eye Tracking Problems
All of this is the result of inefficient oxidative metabolism in brain.
This is the term for a fast heart rhythm and is a cardinal sign of dysautonomic sympathetic nervous system overdrive.
Pressure-treated wood in the United States contains a significant amount of arsenic and is generally touted as being the source for children using playgrounds. This is much more significant than arsenic in drinking water. Arsenic damages oxidative metabolism and could be contributive to the effects of thiamine deficiency.
Candida is a common form of yeast that infects humans. It dislikes oxygen: consequently this infection is much more likely to occur in people whose oxygen metabolism is inefficient.
High Blood Glucose***
Of course, this means that the patient has some form of diabetes. Both type I and type II diabetes are now known to have thiamine deficiency as part of the syndrome. Alzheimer’s disease may be diabetes type III. Thiamine is absolutely vital in glucose metabolism.
Pattern Suggests Pyruvate Dehydrogenase Complex Disease
Pyruvate dehydrogenase is an enzyme that demands thiamine and magnesium in order to function properly. I would be willing to bet that this boy would be responsive to high doses of Lipothiamine and should be studied in detail by a physician who understands the possibility of inborn errors of metabolism. Note the two starred items above. The observation of permanently dilated pupils indicates excessive activity of the sympathetic branch of the autonomic nervous system. The high blood glucose is a sure indicator that thiamine metabolism is involved, even if there is insulin deficiency.
Patient number 2: ROHHAD
This is a little girl, age not specified. She was described as a patient with ROHHAD. This stands for “rapid onset weight gain, hypothalamic dysfunction and autonomic dysregulation”. The parent described this as “a very rare syndrome and only 150 cases have been recorded worldwide”. Children with this diagnosis are said to have similar symptoms. Most of them have central and obstructive sleep apnea. Many depend on CPAP. This child requires it only during sleeping but many other kids have tracheostomy and all are living on CPAP day and night.
Symptoms of patient 2: Sweaty Palms, Cold Intolerance, Tachycardia and More
At my request, the parent observed that there was no family history of alcoholism or smoking. The mother had been thinking of thiamine deficiency because of the child’s autonomic dysfunction. I have noticed that alcoholism and sugar sensitivity appear to be closely related genetically.
She has palm sweating. Father has blepharospasm (spasm of the eyelids) frequently, lasting for weeks at a time. She also has tachycardia (fast heart rate), excessive vomiting, cold intolerance with persistent cold extremities, peripheral neuropathy, binocular diplopia, double vision, gastrointestinal dysmotility, mood swings, and low pain perception are all symptoms of dysautonomia, the commonest cause being thiamine deficiency. Fortunately the family is working with a physician who had started thiamine treatment for this child. The parent closed with the remarks that “since she started TTFD she is having a fast heart rate at 140 beats a minute and low oxygen saturation with restless sleep. I decreased TTFD from 250 mg to 50 mg but my opinion is that she became more stable with oxygen saturation and pulse rate”.
Discussion of Symptoms: Patient 2
Rapid weight gain, hypothalamic dysfunction, dysautonomia and sleep apnea are all included in this syndrome. I must point out that the word “syndrome” is always used for a collection of symptoms whose cause is unknown. In fact, all can be caused by thiamine deficiency.
Sweating is a result of sympathetic nervous system overdrive. She also has tachycardia, excessive vomiting, cold intolerance, peripheral neuropathy and double vision. Various forms of peripheral neuropathy are cardinal symptom in thiamine deficiency.
The intestine is innervated by the vagus nerve which originates in the brain. This nerve uses a neurotransmitter known as acetylcholine, highly dependent on energy metabolism and therefore also dependent on thiamine. Japanese physicians have used thiamine derivatives for years to treat postoperative intestinal paralysis.
I learned the hard way about mood swings in children when I found that the dominant cause was poor diet resulting in thiamine deficiency.
Low Pain Perception
Decreases in pain perception are described in familial dysautonomia, a genetically determined condition. Thiamine deficiency results in dysautonomia and may well be responsible for low pain perception.
Points of Consideration: Polysymptomatic Disease and Thiamine Deficiency
Both these children have fallen into diagnostic cracks. It seems only to be the persistence of struggling parents that do their own research and persist in trying to find an adequate explanation that addresses the plight of these children. To me, the problem is obvious. Polysymptomatic disease that affects so many body systems can only be explained by some form of energy deficiency, dependent on oxidative metabolism. Thiamine deficiency, arising from both genetic and nutritional abnormalities is a common cause. It could be a simple thiamine deficiency from diet but this is unlikely in the case of these two children who may have a genetically determined condition that is responsive to megadose thiamine.
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For this form of B1 your dosage was probably WAY too high. I would (have) start out at 50mg daily and slowly work your way up to 100mg or 150mg. For this form you do not need higher doses. It causes detox so it was probably detoxing much too much for your body to handle. I have had to work up to 100mg but even that can cause some detox issues for me. Try 50mg of allithiamine and stay there for some time and see how you feel.
Dr Lonsdale, I believe me and my kids tend to run low on B1. I have been on benfothiamine for several years and then switched to allithiamine. Personally, I am seeing great gains in mood and energy on allithiamine. I started my kids on that but it seemed to flare yeast for them, I assume because it is sulfur based. I pulled it and now supplement them with benfothiamine and sulbutiamine for them. I feel that I am seeing good gains with this.What are your thoughts on allithiamine vs sulbutiamine.
P.S. I have been researching your work and feel b1 is a huge issue for us. I so appreciate your research on B1.
Ashley, if it ‘flared yeast’ in your kids ‘because it is sulfur based’, then it would flare yeast in you and everyone. Sulfur is ESSENTIAL, and not the bad-guy that Amy Yasko and others make it out to be.
I’d suggest reading the work of Rosemary Waring for more details.
You have to stick to the known facts. I repeat: all the thiamine salts and its derivatives have only one biologic action–to deliver thiamin to cells. Their variability is based on their method of delivery. To use them, some personal research is necessary. Unfortunately very few doctors have done this because the majority of American doctors irresolutely believe that any form of vitamin deficiency simply cannot occur. Hence, the patient has a multitude of symptoms that give rise to doctor shopping, including every specialist. Orthodox diagnosis of “organic disease” requires confirmation from a series of lab tests. If these are negative, the patient “does not have a real disease” and the symptoms are called psychosomatic. If the patient tells the doctor that he/she has read that the symptoms are from beriberi, the nicest doctor might measure the circulating blood level of thiamin. Finding it to be normal the patient is told that the diagnosis of beriberi is wrong. The doctor might meet with a colleague and together they have a good laugh. The fact is that the blood level of thiamin is almost invariably normal, even with moderately severe beriberi. I have written well over a hundred papers in the medical press and there are reports from other countries, but until there is a general acceptance of the truth and doctors start doing their own research, patients who have had benefit by doing their own research are on their own. Nutrition is not sufficiently emphasized in medical school, a complete travesty when you consider its vital importance. In the meantime, I decided to identify the symptoms as well as I could and try to get long suffering patients to go it on their own. This forum is hopefully a temporary means of this kind of communication but I have the greatest regard for Dr Marrs in establishing and editing it.
It sounds like you had a paradox effect, which I had one in a different form the first day I went on 600 mg but then went away.
When it comes to OM medicine there is no definitive dosing or formulation that can meet the exact same requirement for every patient because everyone is biochemically unique I have taken high dose HCL with improvement, my parents self treated shingles and restless legs successfully on Benfotiamine and Dr. Berg nutritional yeast which include synthetic B1 but their requirements are less than mine. While I carry their genetic error, my symptoms are much worse, so I choose to primarily use TTFD more often because it does not require a transporter that I lack. I tend to develop a tolerance to supplements if I take the same one every day, so I rotate a couple formulations, I use at least 600 mg daily of TTFD without ill effects. I also take Myers Cocktails IV’s and with an added 100 mg dose of HCL I can really feel a difference at 200 mg, as opposed to 100 mg.
The doctor treating me for TD founded OM medicine with Linus Pauling and has fifty years of experience in the field. He has the upmost respect for Dr. Lonsdale’s research and he himself uses TTFD in his own supplement formulation. Trial and error is a part of OM medicine, and it can require patience. It’s really common sense though, if you don’t feel good, just stop taking it or titrate upwards and see what happens with incremental dosing. It seems that you found something that works for you now which is great, however I would caution high dose thiamine in any form may shift other nutrients in the wrong direction, even if you feel better.
I would like to delete the above comment as I stated but leave this new one please;
Dr Lonsdale- I took sulbutiamine high dose for 4 days, and got sicker. Then I took 300mg a day TTFD for 4 days, and got sicker. Then a few hours ago I took 500mg thiamine HCL, and feel calmer, and clearer minded already. The only conclusion I can come to is the disulfide thiamine analogs do NOT have b1 activity, are harmful, and that the studies on them saying they have b1 activity are a massive lie going back decades. I am very disappointed you are pushing TTFD as you seemed like a rational doctor. Thiamine allyl disulfide may work as it is naturally occurring but all the analogs are dangerous, and ineffective. I look forward to hearing your response to this.
“A little knowledge is a dangerous thing”