It has recently been found that a number of individuals who have experienced adverse reactions to the Gardasil or Cervarix vaccines and some medications have had a blood test that indicated thiamine deficiency (TD), or its abnormal chemistry (TAC) in the body. This article reviews the methods by which TD or TAC can be detected.
Blood Thiamine – Vitamin B1 Concentrations
Measuring blood thiamine or B1 concentrations is the laboratory test that is commonly offered by doctors. It is only helpful in extreme cases and is usually in the normal range even when there is clinically demonstrable abnormal body chemistry. The reason for this is that thiamine does its work inside cells and has no effect outside them. When we get this vitamin from our natural food, it goes through a very important genetically determined process to enter our cells. There can be something wrong with this system so that even a dietary sufficiency will not be effective and the concentration in the blood will be in the “normal” range. When the B1 is inside a cell, it has to be treated by a biochemical process known as phosphorylation to become an active vitamin. Failure of this mechanism will result in a “normal” blood level but no vitamin activity. We therefore have to use a method that actually detects this “vital” activity.
Erythrocyte Transketolase: The Test of Choice for Assessing Thiamine Deficiency
Erythrocyte is the technical name for red cells. These are the cells that carry oxygen to our tissues and they contain a complex mechanism that depends on a series of biochemical processes, each of which requires an enzyme. Transketolase is one of these enzymes. Its activity can be detected by a laboratory test and measuring transketolase is the only way of showing that the activity of thiamine is normal. The reason for this is that all the enzymes in body and brain cells require one or more “cofactors” that enable the enzyme to function properly. Vitamins and some minerals are cofactors and that is why they are so important. We have long known that they have to be obtained from our diet, but the reasons given above make it clear that dietary intake may be normal and still result in poor function of the enzyme in question.
Transketolase requires two cofactors, thiamine and magnesium and the laboratory test is designed to show their deficiency or abnormal chemistry by detecting the activity of the enzyme. Because thiamine is vital to cellular energy production, its deficiency affects first the tissues that are the most active oxygen using tissues, the brain, nervous system and heart.
Method of Performing Erythrocyte Transketolase Test
First, the baseline (as it exists in the patient’s red cells) activity of the enzyme is detected by measuring the rate at which it synthesizes its product, the chemical substance next in line in the series of biochemical reactions that are referred to as a “pathway” to the final end product. This is reported as TKA and it has a normal range. In moderate thiamine deficiency the TKA can still be in the normal range but if it is low it indicates that the enzyme is not doing its job efficiently.
The next step is to repeat the test after the addition of thiamine pyrophosphate (the biologically active form of the vitamin) to the test tube reaction. If there is an acceleration of the product synthesis, it indicates that the enzyme needed its cofactor to become efficient in its job. This is reported as a “percentage increase in activity over baseline”. This is called TPPE (thiamine pyrophosphate effect); the higher the TPPE, the greater the deficiency. A “normal” range for TPPE is allowed up to 18% and this was drawn from people that were supposedly “healthy”, meaning free of symptoms.
In essence the TPPE should be zero, indicating that the enzyme is fully saturated with its cofactor. If a person is (unknowingly) sensitive to sugar, this test may be abnormal and show the effect of sugar in that individual. This is because thiamine is vitally necessary to metabolism of ALL simple sugars. That is the reason why sugar caused disease is so common in our world today.
In order to test thiamine deficiency, one must request transketolase testing. Not all labs can perform this test and so many will substitute the simple blood vitamin B1 testing. This test is insufficient for detecting thiamine deficiency for the reasons stated above. In this case, you may have to advocate on your own behalf and find the appropriate lab testing service.
Additional Labs
Since the publication of this article, the US lab performing these tests has closed. We have just learned a lab in London offers transketolase testing: Biolab Medical Unit. As we learn of additional labs offering the appropriates tests we will post them here.
Health Diagnostics and Research Institute in New Jersey also apparently will test for thiamine pyrophosphate (TPP) and erythrocyte transketolase (ETKA), but these tests are not listed on their menu and have to be requested.
In Germany – SYNLAB MVZ Leinfelden-Echterdingen GmbH
Labor Dr. Bayer
Nikolaus-Otto-Str. 6
70771 Leinfelden-Echterdingen / Germany
In Spain – Estudios Analiticos – Avenida nuevo mundo 11 (Madrid)
http://www.eaac.es
Email: info@eaac.es
Telephone: 916334223
Fax: 91 533 10 44 / 91 632 44 17
Information: Monday to Friday: 8:00 a.m. to 8:00 p.m. Saturdays: 9:00 a.m. to 10:30 a.m.
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.
Hi Dr Lonsdale. I am reading and getting a lot of good information from your books. Do you do zoom calls? Also which thiamine do you recommend? Thanks so much!
A new laboratory that performs the analysis of transketolase, in Malaga, Spain.
Hospital Vithas Malaga
Avda. Pintor Sorolla nº 2 29016 Malaga
Phone 952121100
From Monday to Wednesday.
You have to notify them days in advance, because they need a special tube, since the laboratory that does the analysis is another (I don’t know which one yet) and they collaborate together.
After searching in Spain for a laboratory that performs the analysis of transketolase activity, I have found one! In Madrid. I give you the information for whoever may need it.
Avenida nuevo mundo 11 (Madrid)
http://www.eaac.es
Email: info@eaac.es
Telephone: 916334223
Fax: 91 533 10 44 / 91 632 44 17
Information: Monday to Friday: 8:00 a.m. to 8:00 p.m. Saturdays: 9:00 a.m. to 10:30 a.m.
Hi Dr. Lonsdale,
Thanks for all your research. Quick questions: What is the best form of B1 to take? Where can I get your book so I can learn as much as I can regarding B1? Also, I started taking Benfotiamine 300mg about a week ago and I swear I am already feeling better. My big question is do you know of a connection with Thiamine deficiency and Pulmonary Arterial Hypertension?
Thank you for your time in advance. Do you do tele appointments?
Trish
Hello–
Is there any link between thiamine deficiency and subacute combined degeneration? I was diagnosed with SCD when undergoing an MRI for evaluation of neck pain/herniated discs in June. Since then, my labs have shown high B12 (“greater than 2,000”), low transcobalamin (“less than 88”), MMA 160, and homocysteine 10.3. I am getting tested for possible partial TCN2 deficiency. I am a 50-year-old woman who has been healthy all of my life, but in the past year I have noticed a deficit in fine motor skills and significant hair loss. My WBC count has always been low normal (low 3’s), but I never get sick, so the low numbers have never worried anyone. Also in the past year, my TSH has gone up from 1.2 to 2.64. Thanks very much for your time. I have been deemed a medical mystery, and would like to get to the bottom of things.
High B12 indicates thiamine deficiency
Thanks very much for getting back to me! The thiamine deficiency/high B12 makes sense, but I was curious why the transcobalamin level would be so low, and also whether there were any reports of thiamine deficiency and SCD (I can’t find any).
I will be starting low dose supplementation of B1 this week, and slowly titrate up. Thank you for your lifetime of work. I am a surgeon, and being a patient for the first time has left me very disappointed in the current state of the art of medicine.
Hello everyone! I did a blood test for vitamins and minerals prior to stumbling upon Hormone Matters. I’ve learned here that the blood test for b1 is not sensitive but mine does show that I am slightly deficient. Does it mean that there is a chance that I might not be deficient, or that my b1 deficiency is really bad?
I have been having migraines, insomnia, acne/dry skin, stomach issues, painful period, and blood pooling (both legs turn red or purple when sitting and standing) for 20+ years (now in my late 30s). Two years ago, I started eating a healthier diet and supplementing, and everything started getting out of hand. My insomnia turned very severe. I wake up after several hours, only to fall back to sleep after 2-3 hours if I am lucky. I started having tingling/numbness and pressure on the left side of my face and hearing pulses in my left ear starting this year. I get pressure in my face when I stand up. And I also started to have nasal congestion, bladder issues, and tremors in my feet. These symptoms are more severe before/after my period, so I am guessing there is also something wrong with my hormones. Before that, my symptoms have never been this serious (except for the discoloration in my legs). No one in my family has issues like mine. When I was a kid, I would often have stomach issues and was always anxious.
Currently, my brain MRI shows no tumor or MS lesions, and my doctor is suspecting small fiber neuropathy or other autoimmune diseases, so more tests need to be done. But everything that I have been experiencing points me to either vascular issues like May-Thurner/nutcracker syndrome or thiamine deficiency (particularly the blood pooling). However, I do not faint, nor do I have fatigue issues (or maybe I have been too used to it). My blood pressure is normal most of the time, although often on the lower end. There has been a year or two in the past where it would go into the 80s. Sometimes my heart rate would go up to 120-130 when I stand but my doctor ruled out POTS (because the difference in my hr isn’t significant enough and it does not happen whenever I am at the doctor’s office), even though my discoloration in legs looks exactly like the one that belongs to POTS patients.
My blood work shows vitamin D deficiency (besides slight b1 deficiency), slightly low sodium and chloride levels, but high homocysteine and methylmalonic acid. My doctor recommended weekly b12 shots for a month (my b12 levels are low but not deficient), which I have been doing. But after the second week, I feel a bit dizzy. I have just started on low doses b1, b2, and b complex and vitamin c for several days. I encountered headaches/facial pain and am wondering if it is normal when supplementing.
Hi Dr Lonsdale,
I am in my thirties and have noticed severe leg pain and joint pain after receiving my yearly required influenza shot (I work in a hospital). It impacts my ability to walk and every year it would get worse and worse. Last year in January I became bed bound with severe blood pooling and peripheral cyanosis, I was unable to walk or work for 3 months until I finally started wearing thigh high compression stockings. I then was dealing with severe tachycardia, chest pain, sob and dizziness. I was diagnosed with POTS and put on corlanor. It did not help. After receiving my covid vaccine and flu shot again this past October, I had such a severe response. My resting heart rate would not go below 100 bpm for two weeks, severe chest pain, sob and I became so confused that I crashed my car. Again, all my symptoms and circulation to my legs became worse. An ER doctor suggested I try thiamine supplementation and after a year of suffering I finally started to get better. My orthostatic heart rate improved significantly after one month of using ttfd 100 mg/day. Do you think my yearly vaccines are causing the deficiency? If so, do you know a doctor I can see that is knowledgable with thiamine deficiency and is currently practicing, I am willing to travel. This has been a really hard year for me and its been hard to find a doctor who actually knows what’s going on and I cant imagine going through this every winter.
This is yet another example of brain energy deficiency. High dose thiamine and magnesium will probably work but you must be patient. Read the many posts in Hormones Matter and buy our book, “Thiamine deficiency disease, dysautonomia and high calorie malnutrition”
You have to think differently. Any form of stress requires a defensive, energy requiring reaction. Insufficient energy results in poor adaptive response associated with a series of sensory phenomena known as symptoms.
I bought the book and am currently reading through it, thank you. I am still not 100% and need thigh high compression stockings to work and have been supplementing for 3 months now and doing IV vitamin infusions as well (noticing huge paradox reactions after). I want to get pregnant end of this year but am scared I will get hyperemesis gravida or my symptoms will worsen due to the increased demand for thiamine during pregnancy. I’m worried about fetal outcomes if my thiamine deficiency worsens. Can I continue to take 100-200 mg TTFD during pregnancy?
Typical brain energy deficiency. Go with high dose thiamine and magnesium as recommended in the numerous posts on this website. If there is “paradox” await improvement and then escalate to find the ideal dose which is indicated by either reducing or increasing dose
Hi Dr. Lonsdale, I was wondering if you could comment on the following excerpt from the Mayo clinic labs’ Thiamine (Vitamin B1), whole blood test:
“Whole blood thiamine testing is superior to currently available alternative tests for assessing thiamine status. Serum or plasma thiamine testing suffers from poor sensitivity and specificity, and less than 10% of blood thiamine is contained in plasma. Transketolase determination, once considered the most reliable means of assessing thiamine status, is now considered an inadequate method. The transketolase method is an indirect assessment. Since transketolase activity requires thiamin, decreased transketolase activity is presumed to be due to the decrease of thiamin. However, the test is somewhat nonspecific, as other factors may decrease transketolase activity. Transketolase is less sensitive than liquid chromatography-tandem mass spectrometry (LC-MS/MS), has poor precision, and specimen stability concerns.”
My take is this might be true for an ER/ICU-type application (triage), but not necessarily for one who is trying to diagnose potential energy production issues. In other words, when someone presents to an ER with symptoms suggestive of TD, this test will suit fine. However, if someone is suffering ongoing symptoms while supplementing, this test will simply show adequate (or high) thiamine levels without providing additional insight into what’s happening with the persons metabolism. Would you agree?
Whole blood testing is expensive but the Mayo Clinic has at last agreed that a simple blood test is useless. I used transketolase PLUS the TP effect for years and published results. It is very accurate if you understand the chemistry. The problem is that it is labor intensive.
Dr,
My son is on the autism spectrum and his symptoms and speech improve on b1 supplement along with magnesium but he is also deficient in Calcium (tooth decay).
How do I balance Ca and Mg?
Will milk deplete thaimine or mg? His symptoms return on taking milk (its non homogenized milk organic a2 cows milk)
I am unable to bring up thaimine levels. We are heavy rice eaters and eating rice makes him deficient (tics and loss of speech). I don’t know what to feed him without rice.
Milk contains a substance from the grass consumed by the cow and it has to be processed in the cells of the consumer by a thiamine dependent enzyme. The worsening of symptoms when he takes milk suggests that you have not solved the problem of thiamine deficiency (TD). I suspect that the tooth problem is from energy deficiency related to TD, not calcium deficiency. Increase the thiamine and see if it confirms my suggestions
Dr. Lonsdale, I specialize in using functional medicine to find actionable ways to help children with various genetic conditions. I often, but not always, find thiamine to be very helpful and find markers indicating a true thiamine deficiency. I’m working with a 7 yo girl with Pitt Hopkins syndrome who has frequent, severe breath holding spells. She also ambulates with a walker. Her organic acid test revealed an elevated lactic acid, alpha keto-glutaric acid and alpha keto-adipic acid. Naturally, these are signs of needing thiamine. She had other elevated markers like glutaric acid indicating a need for B2. My question is about her need for B1. Could her breath holding spells be a symptom of a B1 deficiency? Breath holding spells are described as part of Pitt Hopkins syndrome, but I try not to dismiss all pathology as simply due to their genetic condition or I wouldn’t be able to help any of my patients. She will be starting a thiamine supplement soon at 75 mg per day and only time will tell if it will help. Naturally, I didn’t guarantee the mother that it would help. I’m wondering if you’ve seen this symptom before in any children who experienced thiamine deficiency. Thank you for your time.
I was not familiar with Pitt Hopkins syndrome and looked it up on line. I also looked at your website and was fascinated to become aware of your service. The breath holding spells imply brainstem dysfunction which always makes me think of thiamine. My obvious question is why an abnormality of the TCF4 gene should be associated with thiamine deficiency. If there is a direct association, successful supplementation with thiamine would imply epigenetics. If it is a result of poor feeding because of the developmental delay, it would be an independent result of the genetic problem. If you assume that it is a part of the syndrome on a genetic basis, you might think of using thiamine tetrahydrofurfuryl disulfide. Its cellular penetration is much better than water soluble salts. Lipothiamine is available from Ecological Formulas in California. The tablets are enteric coated to get through the stomach acid and are each 50 mg. If thiamine deficiency has been prolonged, I am sure that you are aware of refeeding syndrome but I never saw it in children. You can titrate the dose to symptom improvement, there is no toxicity.
Hi, all. Does anyone know if there’s a lab anywhere in Canada that will test for ETKA and TPPE? Even if there is, I doubt that my doctor will agree to test me for it because she’s always dismissed my respiratory difficulties as psychosomatic. Currently, my most severe symptoms are gastrointestinal and being unable to breathe automatically but I imagine that I still have some neurological symptoms that I’m unaware of because I’ve likely had thiamine deficiency for 21 years due to having to treat myself for an eating disorder with no guidance as I’m a male and would not even be diagnosed with an eating disorder at that time. It was, to everyone I spoke to, solely a female disorder
No known lab in Canada, but you don’t need a lab. You can start thiamine in low dose and titrate the dose up according to symptom improvement. Anorexia Nervosa occurs in males. It is just less common.
Thank you. I appreciate it. I’ve been supplementing thiamine for almost 3 years, allithiamine when I can find it and thiamine HCl when I can’t. Symptom improvement has been around 70%. Hyperphagia is still my biggest obstacle. I still binge anywhere from once a week to once a month due to the constant, overwhelming hunger and the stress of desperately trying not to give in to it.
I would guess that there is a missing or damaged hormone that affects the hypothalamus. You need nutritional I/Vs
Thank you so much. Given that I have had a wealth of experience with psychiatric symptoms as well as physical symptoms, and my formal studies were in philosophy, I am interested in exploring physical and mental corollary experiences, such as my experiences with dissociation and its coincision with polyneuropathy. I had not realized I had neuropathy until I found this site but now it could not be more clear. Thank you. I will try to convince my doctor to read your book. She’s been dismissive since I first raised the possibility of thiamine deficiency.
The modern American physician is almost ALWAYS skeptical and will not listen to his/her patient. It is so adamant that it is impossible to commuicate the “truth”.
This lab in Germany also offers transkelotase testing:
Labor-lademannbogen in Hamburg.
I will not offer the direct link because I’m afraid it will be reported as spam.
Hi,
Does anyone know where i can get transketolase test in India?
No
Hi Dr Derrick Lonsdale,
Thankyou for sharing this information. Over the last 3 weeks I have had a forceful heartbeat (almost constantly) it’s worse on exertion and pounds more with even a small amount of adrenaline. It’s also been fluttering at times. Ive never had any heart/health problems before. I’ve also felt very anxious and can’t tolerate any stress. My Dr is putting it down to anxiety and has arranged an ECG. My symptoms started a few weeks after taking metronidazole for 7 days. I’m thinking it may be caused by TD after finding your website? I’ve started taking thiamin 100mg mononitrate twice daily and magnesium 150mg once daily. What are your thoughts? Do you think it could be TD? Many thanks in advance.
Metronidazole causes thiamine deficiency. You should join the metronidazole toxicity group on line because they have all been affected.
Hi,
My bofriend has severe body numbness after medicines (antipsychotics, antidepressants). We suspect b1 defiency. History of IBS and panic attack. Adverse reactions to medications and vaccines. Also took metformin (b1 depleter) + blueberries, sugar, white rice and lots of stressors to deplete it. Also was vegan.
Each day he declines and we started on magnesium and TFFD (100 mg).
We have ordered mineral complex and a b complex without folate and b12. Also Thorne basic b.
He has had severe reactions to b12, vitamin d, HBOT, any supplement. In desperation he tried a primal diet eating raw eggs and raw fish and it made him very sick. The neuropathy symptoms worsened and continue to decline after that incident. We thought it was an bacterial infection or parasite, but realize now it may have been b1 depletion along with biotin.
Two years ago he was fully functional and now he is bedridden with fatigue and have no memory. He is fully aware and intelligent but cant acess his body or his brain. He cant feel his face or hands. Dont have taste or smell. Dont have hunger and thirst etc. But no one can see something is wrong because he speaks fluently and looks normal.
Is his symptoms reversible? 1 year ago the MRI showed nothing. New result tomorrow. Is this mitochondrial disorder that can be reversed?
Are we doing the right thing with Allithiamine 100mg + magnesium 300 mg (glycinate)?
He havent dared tried supplements but when we figured b1 may be the issue he is willing to try. How long to expect result? So far he is just worse from where he started. Hard to know if it is due to paradox or just his normal decline.
Should we back off on TFFD? The multimineral contains selenium iodine and molybdenum and will arrive this week.
Quite sure b1 was the main catalyst for this vulnerability. And may explain why he keeps declining compared to other sufferers from drug induced toxicity.
Is there hope for him?
The MRI result we got today shows nothing, so hopefully this is just disfunctional cells.
List of symptoms:
No hunger
No smell
No taste
No emotions
No physical sensations, numbness and bad body mapping even though balance is excellent
Cognitive decline
During sleep the brain is more active and he can access more parts of his brain
No orgasm although erection and ejeculation works but no pleasure so no point
No pleasure from any activity, indifference
Frustration, anger and restlessness prior to going total numb emotionly
Heart palpitations when standing up too fast
Fatigue and no rest from sleeping
Bad reactions to supplements, HBOT, stress and also after ejaculation
Visual disturbances (flat vision, no 3d, things and people looks plastic)
Decreased hearing and difficult locating sounds
Can’t feel weight of objects including his own body
Not connected to body or inner world, dose not experience a thought process
But is perfectly good at communicating and speaks fluently though short term memory is affected
Dose not experience time nor space or change of enviroment or seasonal changes
He clearly has brain energy deficiency. Thiamine and magnesium are the best bets. Please read the post carefully because your questions are all answered. If not, explore the many posts on this subject.
We have read a lot of the posts, but we are worried that he has a glutatione issue because someone mentioned that and recommended him to start with selen and b2 before TFFD. Is this nessesacry? He has alreasy started with TFFD and magnesium since a couple of days back, is it okey to continue with only that? If so, should he take the magnesium together with the TFFD or seperately? We are worried that too much thiamine will create damage if he dose not have all the co factors first.
His b complex, electrolytes, b2 will arrive in a few days. Should he wait for that before continuing the TFFD? We just don’t want to create unnessecary harm.
To be clear, we also believe magnesium and thiamine are the best bet but we just want to do it in the most safe way possible to avoid any unnessecary damage. A clean MRI is hopeful and I guess that gives hope for a full recovery?
mercury and or/heavy metal toxicity
I just received ETKA results from Health Diagnostics and Research Institute. Based on all the posts here, it seems the jury is still out on whether or not this lab does the test correctly. Here are my results copied directly from the test results. Does this mean I am thiamine deficient since my results were 15.7 and not 0? If so, deficient enough for IV (which I have) or capsules which I also have? Thanks in advance.
Enzymes Unit Ref Range
ETKA* 15.7 %tpp 0.0-17.0
How can TKA and TPPE be the same thing??????. Read the post more carefully. The answers to your questions are all there!
I have spent months on this forum and I don’t know anything other than what the test indicated which I have posted above. I’m simply trying to get a yes or no, not wonder if I have a thiamine deficiency and continue to spin my wheels. Can ANYONE tell me if the below results indicate I am thiamine deficient? I know the results will post out of alignment and I did my best to make it clear. If I could post a pic of the results I would do that but don’t think it’s possible. Thanks in advance.
Enzymes—————– Unit——–Ref Range
ETKA*——-15.7——– %tpp—— 0.0-17.0
No. The trouble is that the TKA is usually normal in thiamine deficiency. It HAS to be FOLLOWED by the TPPE as a separate part of the test. Because the Mayo Clinic has stated he uselessness of this part of the test, n o lab is doing it.
Dear Dr. Lonsdale. Can elevated thiamine levels in a whole blood thiamine blood test actually indicate a deficiency? Could this mean the thiamine is staying in circulation and not getting into the cells? I do not take a thiamine or b vitamin supplement yet my labs show a level is 218.4 with the normal range being 66.5-200. Thank you. Jill Nau
I don’t think so
Dear Dr. Lonsdale,
Would you please help clear something up regarding testing? I got a test done by Health Diagnostics, which is referenced in your article as a place to get tested.
I received a result (feel free to publish in my comment) which reads:
ETKA 23.6 %tpp (Reference Range 0.0 – 17.0)
Is that the same as TPPE? I thought it was and that I am severely deficient.
Since the reference range is 0 – 17 it seemed to me this was probably the same as what your article states – ” A “normal” range for TPPE is allowed up to 18% and this was drawn from people that were supposedly “healthy”, meaning free of symptoms.”
If I am wrong and this isn’t a measurement of TPPE then can you have somebody check to see if Health Diagnostics does measure the right things and if not please remove them from your “list” of labs (granted, only two) that can provide testing? I don’t want others to waste their money.
Also, if this is not a result I can use would you please let us know exactly what would be correct and where we can get it?
Thank you.
Yes, you are quite right
How can ETKA and TPPE be the same thing????? Read the post m ore carefully. The answers are all there!
I am so glad to find hormones matter, thank you Dr Lonsdale for all your research into thiamine deficiancy.
I have seen so many Doctors for all my symptoms and not one has tested me for B1, im 53 years old, my issues started when I first started my period at age 13, I have always been under weight and i was always anxious, sweating alot, under arms, feet and palms, i had a lot of neglect as a young child due to parents divorce when i was 18 months old.
I remember going hungry at school, the only thing i had was a bottle of milk because the teachers gave us one for free.
When i was 16 years old my dad died, i was very affected and sad, I left school because i could not focus, i smoked cigarettes with my friend and occasionally smoked pot and drank wine occasionally. I was in a bomblast at the age 18, a domestic violence incidence, which i was in the same room, my friend died, her 21 year old husband put gelignite between her and him and killed her and himself. I slept in the room when that happened next to my friend who died.
I eventually married and have five children number 6 died of Sids. Me and the children suffered domestic violence and fled to saftey at a refuge.
My ex husband died this year of heart failure. June 2020
The year my daughter died was a bad year, i had an itch on my arms and on my bottom which felt like ants running under my skin it worsened by scratching at it. I put ice on it, but it continued. Doctor prescribed cortisol which helped.
This itch was all through my pregnancy, i was only given iron tablets and never took any other vitamins.
I breast fed my fourth daughter and she died when she was 3 months old. 1992. Studies reveal research – SIDS is related to thiamine deficiancy.
My conditon got worse, but had two more babies, a boy and a girl who alive today but both suffer depression and anxiety, actually all my kids have anxiety and are highly sensitive people.
My dad drank beer every day and my brother cant go without alcolhol… My dad died when he was 47 years old to blood clot bursting in the brain.
I have taken levo floxacin for a stomach bacteria, and for six years now i have suffered stomach problems, i need betaine as i have low stomach acid, i am always feeling unwell in my stomach, i have burping episodes, mostly at night and issues falling a sleep, sometimes when I dose off to sleep i feel like im floating inside my brain, like im lifting, so i sit up and change from side to side.
My specialist said i have a nerve condition and eventually you will lose all function of your right side. That was diagnosed when I was 38 years old, but i can still walk and use my right side.
I have lost a lot of weight because food makes me sick.. So right now im 54 kg, and 171cm tall.
I asked my doctor just recently for a B1 blood test, but I think now after reading , i may have beri beri?
I rang today and asked my Doctor for B1 results, she said ‘oh no michelle we just checked your iron and sugar levels’ , ‘but I asked you Doctor to check my B1 levels.. I. Replied. Now i need to go back to her again for thiamine to be tested. I dont know how my Doctor got it wrong, i specified to her about B1. Im traveling 1 hour to see her.
Do you think i may have a genetic problem, my grandson has autism, and my other grandson has behavioural issues and is seeing a paediatrician for diognosis, possibly ODD? I may have had been on a spectrum but due to child neglect i went unnoticed, i didnt like socialising with other kids, i remember having issues with learning. I was a quiet child. Very shy.
Had constant nighmares.
(self reflection)
Cant believe after all this time that not one Doctor checked my thiamine levels.
I had to research for myself, thank my LORD i found you, you are a God send..
I have restless legs, dizziness, ear infections, tininitis, i cant eat anything with sugar, i feel very sick after eating chocolate
I have taken multi vitamins and feel a bit better but when I stop i feel horrible.. I think about dying, I feel sad for not just me but everyone . I can’t watch the news, i cry a lot.
Im from Australia, NSW, who should I see? What test should i ask for?
I hope there is an answer and really hope to help my seven grandchildren.
Michelle,
What a story. From what you have written, I would bet that you have had longstanding thiamine insufficiency. The dietary issues early on would be sufficient, but the longstanding health issues, are also indicators of and exacerbate existing deficiencies, as do the medications and all of the life stressors that you have experienced. You may also have genetic issues with thiamine transport. They are very common. If you read the posts on our site and/or the book Dr. Lonsdale and I wrote, you will see that many folks treat thiamine absent the testing because 1) the typical blood tests are so poor and 2) thiamine supplementation is very safe. If you cannot get tested, you might consider supplementing on your own. We have a number of articles on this as well as all the information you need in the book. I also run a private Facebook group called: Understanding Mitochondrial Nutrients. Here we talk about the research and folks talk about their health experiences.
My pyruvate measures undetectable and lactate is in mid range to elevated on organic acid panels. The yeast/bacteria elevated markers come back everytime I successfully kill the overgrowth. I recently found homozygous PC genes, and amino markers suggesting PC Deficiency. I also have a defect in the Pentose Pathway that encourages arabinose growth.
I also read in your book describing thiamine lactic acidosis. Before I took my last lab, I did 5 days of basic yoga stretch class (an extra 2 days added to my normal 3 day routine caused muscle burn) and raised my lactate 2.5 times normal. It amazes me how TD deficiency can cause havoc induced by a just small amount of stress. A few weeks after the lab I got neuropathy. A month later my oxygen measured a bit low and anion gap is still elevated and the TD lowered my CoQ10.
My cognition suffered as well recently, I forget to pay a check at a restaurant and the waiter had to flag me down, I couldn’t remember someone giving my credit card back to me at store within less than a minute and my reflexes on my keyboard are so slow I can’t open my files on one of my computers, while everyone else in office can open files no problem.
I have many defects in the SLC thiamine/folate family, TKT, and TPK1 genes and defects in subunits E1,E2,E3 and working on a more mitto support including B2 and lipoic acid. Lab results show low function in the B1 enzymes including low NADPH, BH4 and GSH. My doctor noticed a slight improvement in active folate he said was increased by the B1.
I was wondering if patients that had additional B1 conversion/transport defects had a much harder time resolving TD and if PC Deficiency common in TD patients?
I’m taking Meyers with B1 IV’s with choline, because I am afraid of permanent nerve damage to my hands and feet and to stop the cognitive decline. Beside high dose 1 mg TTFD I’m exploring with creams and crushed B1. EF was kind enough to recently roll out a 250 cap bottle of TTFD for me, that is available to anyone that would like larger bottles than 60 or 120 caps.
You need megadoses of Lipothiamine. It does not need a thiamine transporter
I think allithiamine/lipothiamine are dangerous if a person has low GSH, GSH is required for processing allithiamine and will further deplete if these forms of thiamine are taken.
Are you willing to share the name of the genetic tests utilized to diagnose a genetic cause for a thiamine deficiency. I would like to get myself checked to see if there’s any risk for my children having the same issues I have.
Dear Dr Lonsdale,
I have had SIBO and IBS for several years and just started treating it with very strict diet /lifestyle for the past 1.5 years. At its worst I developed POTS and histamine intolerance. 5 months ago I tested borderline low in thiamine, and In the past 2 months I started to experience neuropathy in my hands and feet and my digestion system seems to have become dysfunctional. I have low appetite, and I’m not producing any stomach acid and cannot eat without 30 tablets of betaine HCL which I’ve never had before. I have had low stomach acid issues for years as a result of my SIBO with lots of hair loss but never made the connection of low thiamine until now. I have fasted for a few days and both my neuropathy and digestion get much worse each time.
I just started taking 50mg allithiamine by ecological formulas w magnesium citrate (calm drink) and 25 mg of full B complex (higher dose of B complex makes my palms burn as I eat a lot of red meat). What has boggled my mind is that my neuropathy seems to feel stronger after I take the 50 mg. Is this the paradox effect you have mentioned before? It makes me feel that I need to stop it but I can’t because the day I take 50mg allithiamine my digestion starts to function immediately ( my appetite returns and I can digest with less betaine!) Is this a side effect that is normal at the beginning of dosing? And when can I expect it subside? What should be my long term dose? Can I take more than 1 tablet at once down the road so I don’t have to take magnesium and B complex more than once a day?
I can’t find any information anywhere that says B1 supplements cause neuropathy! I suspect I have been low in thiamine all these years and due to a more restricted diet I’ve gotten worse. I also hope to get to a dose that helps heal my SIBO C / IBS as I suspect they have been caused by vagus nerve issues / dysautonomia.
Thank you so much in advance for your time in answering our questions!
Natasha from California 🙂
This is a fascinating post because it illustrates ALL the symptoms of beriberi. I will deal with each remark. 1. SIBO and IBS are typical of intestinal beriberi because of defective peristalsis. 2. POTS is one of the dysautonomias and is caused in most, if not all, cases by thiamine deficiency (TD). 3. Borderline low thiamine is an invariable finding in clinical TD. 4. Neuropathy is a constant finding in TD. 5. Indigestion and poor appetite are typical of gastrointestinal beriberi. 6. Low stomach acid was reported by early investigators of beriberi. They also found that low stomach acid was replaced by a high stomach acid before becoming normal after thiamine treatment was started. To show the complexity of this disease, in some cases a high acid was replaced by a low acid before becoming normal. This paradox was explained by the fact that TD produces an unstable autonomic system. 7. Hair loss is typical of scalp energy deficiency and, depending on age of the patient the hair will be replaced with thiamine treatment. 8. Read about “paradox” or “refeeding syndrome” as appears on Hormones Matter posts. You must persist with Allithiamine UNTIL “paradox” gives rise to improvement and you can then increase the dose according to symptomatic relief. This post is a very important one because it shows the polysymptomatic presentation of energy deficiency as it affects every cell in the body and particularly in the part of the brain that controls the autonomic nervous system. It shatters the present medical model.
Thank you so much for your reply. I feel so encouraged as I have suffered for years. I have been taking lipothiamin 50 mg for 1 week, my neuropathy in my hands got worse but remain the same, however my digestion has completely stalled. I trust this is the paradox effect, however I’m wondering if I should increase the lipothiamin to 100 mg or wait until my digestion starts to improve a little? It’s causing me terrible gastrointestinal discomfort.
I am taking it with magnesium citrate and 25 mg B complex, is that right? Lastly how will I know when I have reached the dose that works for me? I understand I can increase up to 200-300mg.
Thank you so much again.
Maintain present doses until you notice the beginning of symptomatic improvement. There is an obvious genetic factor in your story so you are now using an epigenetic treatment. I expect that you will need megadose thiamine and that is why it is so sad that there is medical ignorance. Check acam@acam.org for a holistic physician within your travel range.
Thank you so much Dr Lonsdale. Approximately how much is a mega dose? And how will I know the dose is right for me?
Unbelievable, that’s me.
What made me turn my head towards B1 was the horrible hangovers is started suffering even after normal drinking nights, like being unable to function for a few days and then neuropathy setting in. Veeery slow recovery.
After supplementig Thiamine monitrate for a few days at very low dosage (literally scraping from the tablet) I had my tingling worsen at first, but still getting the feeling something positive was happening. I got really exausted. After rubbing a relatively higher dose (maybe 25mg) on my hand palms something switched. Unfortunately my kidneys started to ache, liver also to some extent (oxalates or toxins?), but I have felt amazing since, no more cold hands, improved posture with no effort, heartburn (the good one, digestive juices!), no more dysautonomic heart symptoms. Still, I’m afraid to take monitrate again, because the kidney pain was scary. Buying some Allithiamine 50mg to see if it works better.
Dear Dr Lonsdale,
I am suffering from POTS and after diving into your work, I tested my transketolase levels.
Transketolase: 57.2 U/l (42.0 – 69.0)
TTP Effect: 11.0 % (< 20 %)
I assume thiamine deficiency as a cause of my POTS is unfortunately out of question?
However, my homocysteine is slightly above the range, folate is in the lower range. B12 was low, after supplementation in normal range. Calcium is slightly elevated (I don’t take vitamin D or any medication). DHEA-S is elevated.
Can you connect the dots? Or maybe everything is just independent?
Your opinion would be much appreciated.
Regards from Germany.
I don’t think that you are out of the woods ! The transketolase is almost always normal with TD. I believe that the TPP effect represents a gradually increasing effect and that the only truly normal TPPE is 0 meaning no acceleration of the TKA. Thus a TPPE of 10% for someone may be more significant than 20% for someone else. I would conclude that your POTS is due to B complex deficiency and that thiamine is included in the equation and MAY be a vital component. It does not alter my opinion that POTS is primarily a TD disease.
Dear Dr Lonsdale
thank you very much for your reply!
I will then just keep taking the B-complex (I’ve been taking it for 1.5 weeks now) and observe what happens. I’m optimistic now!
Hi Jana,
Do you have any updates?
Really wish there were labs in US for testing B1 (is it active form?).
Found that testing transcobalimin for better for active form of B12, think Dr Ben listed other. (my B12 labs are usually high but feel better taking B12. Had thought had symptoms of low B1 years ago, but was on a diet healing digestion (SCD , no grains), but ate too much oxalic acid (used same pathway as think sulfer,biotin,B1…) foods. Started to very slowly lower, but had huge increase in histamine reactions. Noticed sometimes when took B1 would get a histamine, sneeze or trouble breathing. Now wonder if transport issue, genetic or other. Where find a list of B1 transport snps listed? This year am wondering why urine sometimes smells of grapefruit (much better than high ammonia ).
Interesting!! Without going into the chemistry, an increase in blood B12 is caused by lack of ATP to activate it and the commonest cause is thiamine deficiency. Mild to moderate thiamine deficiency makes the brain controls of the autonomic nervous system hyperactive and a signal to histamine containing cells releases it. Hence the “histamine reaction”. Sense of smell is unreliable so the grapefruit odor might be mistaken for maple syrup (?). See the next comment here.
Dear Doctor,
I am French / Spanish and I am 63 years old.
At the age of 4, I broke my chin and probably my right temporomandibular joint while falling on a garden tool. Then I broke my left arm twice.
A few months later my first health problems appeared:
– I urinated blood (kidney stone)
– pelvic and abdominal pain appeared. Over the years the pains have spread to the whole body. Fatigue, sleep disorders and digestive were added.
Subsequently, the following diagnoses were made:
– Fibromyalgia, IBS, CFS / ME, chronic lyme, non-classical form of spondylitis
I also have :
– Moderate diabetes. All my fasting glycemia and HbA1C have always been normal. The diagnosis was made by a provoked hyperglycemia test.
– Sleep apneas
-severe osteoporosis
-arthrosis all over the spine (at the age of 19 already in the cervical spine)
– Calcium oxalate kidney stones since the age of 4 years
No treatment has improved me in a sustainable way.
In January 2000 I was tested in a specialized center on FM / CFS, the main results were:
– slight increase in the activating coefficient of vitamin B1 to 24% and vitamin B2 to 50% (without further details on the report).
– pyruvicemia slightly increased (in 2013 I had values almost double the reference range ).
– lactacidemia from effort flat (I’m not sure of my translation), I had in 2011 very high urinary lactate values.
I was given Thiamine Hcl 250 mg , 2 tablets / day and riboflavin 10 mg 2 tablets ( for1 to 2 months). Then I had an Italian product:
Biochetasi which contains: 50 mg thiamine diphosphate eter, Riboflavin 5 monophosphate 25 mg, sodium citrate, potassium citrate, B6, citric acid. I do not remember the dose and the duration of treatment (probably 1 or 2 months).
I had no improvements or aggravations with this treatment.
Since about 2 years ago, I noticed that sometimes my urine had a strange odour. I had never heard of MSUD before reading you. This morning I bought maple syrup and its odour seems to be close to that of my urine. The caramel tone is much less pronounced in my urine (may be absent), but it seems to me that there are similarities. I must mention that I take metformin and drink about 3 liters of water / day for my kidney stone problems. It must be cut down the odour
I will appreciate your opinion on my case.
And I have a question :
last month, my blood B6 ( phos. pyridoxal) was high :
142 nmol/l : ref range : 35- 110 .
Can a deficiency in Thiamine or other vitamine B induce
an increase in B6 or other vitamine B. I was not supplementing vitamins B, when i did this test
Best regards
Xavier
I will try to show you how this all fits together: 1.Calcium oxalate stones indicate magnesium deficiency. 2. Abdominal pain, fatigue,sleep disorders and whole body pain are all strong indications of brain energy deficiency. 3.Typical diagnoses described are the ones used by physicians ignorant of the energy deficiency cause.
4. Here are the clues to thiamine deficiency as the cause of energy deficit.
More than 70% diabetics are thiamine deficient.
Sleep apnea is because of oxidative inefficiency in brainstem. Thiamine deficiency is the major cause.
Osteoporosis is an energy deficit that MIGHT respond to megadose thiamine.
Pyruvic and lacticaciduria are virtually diagnostic of thiamine deficiency.
Maple syrup urine odor is a guarantee of thiamine deficiency that can easily be proved in a medical lab. Thiamine and magnesium are together essential to the function of pyruvic dehydrogenase and the dehydrogenase that is necessary for processing the amino acids, leucine,isoleucine and valine. Usually found in an inborn error of metabolism due to an inherited dehydrogenase defect, it has recently been reported in thiamine deficiency, because thiamine and magnesium are also vital to that enzyme. Metformin damages thiamine metabolism. Vitamins have to be activated by energy consumption, so the elevated B6 is probably due to thiamine deficiency.
Possible explanation: thiamine you get from diet has to be transported into body cells by one or more of genetically determined protein transporters. Their absence or deficiency seems to be rather common. I would conclude that you were already marginally but asymptomatically thiamine deficient, either from that or a legacy from your mother’s pregnancy. The injury demanded an energy dependent adaptive response that could not be met, precipitating symptomatic thiamine deficiency, your lifetime legacy.
You need megadoses of thiamine and magnesium or get our book that tells you why your life has been one long period of suffering that apparently passes over the heads of doctors. It comes from the overall resolute belief that vitamin deficiency disease is conquered and that anyone claiming that it is common in America is regarded as an idiot. Dr Marrs and I are trying to get consumers/patients to understand this because the medical profession is NOT going to change. Educate yourselves and tell your friends that there is a new/old attitude to disease that trashes the present medical model. I have spent half a lifetime in clinical research and it was one of my child patients who taught me to think differently. His case was published in a pediatric medical journal in 1969 and may have been read by just a few doctors who practice clinical medicine mainly in an office where they are introduced to the latest magic drug.
Thank you for your reply
Before visiting this site I placed the following order
at Holistic Health:
-Ultimate B Complex: B2 (R5P: 50mg), B3 (17.5mg), B6 (7.5mg), B9 (90.8mcg) B12 (750mcg), Biotin (50mcg), B5 (49.5mcg)
– Benfotiamine: 150mg
– NADH (ENADA), L-Carnitine Fumarate,
-I was already taking Orotate Mg from Swanson (40 mg elemental Mg from 654 mg magnesium orotate), 3-4 cp / day.
After reading your articles, I realize that Benfotiamine is not the right choice and that I must purchase Lipothiamine (TTFD)
1) I started last Wednesday the treatment:
-1 capsule of complex B1
-1 NADH, 2 Lcarnitine
-3 capsules of Benfotiamine
Today, I took Benfotiamine with DMSO, do you know if it can carry benfotiamine inside the brain ?
2) The B6 dosed in my blood is phos. pyridoxal, that’s P5P I guess ?
I read in Phoenix Rising that the phosphate group must be removed from the P5P in the blood so that it can be transported inside the cells.
Once inside the cell, a kinase group delivers the phosphate that makes B6 active inside the cell.
If this is correct, in my case it would be this second phase that would fail.
3) I will gradually decrease metformin, to try to stop it. I took 3 X 500 mg / day.
I have long been convinced that all my troubles are related, as you say, but I did not know how. The more I read you, the more I am convinced that the root cause of all these disorders is a thiamine deficiency.
I did not remember that I had, too, a mitral valve prolapse. It was detected in 1992 and doctors, at that time, told me that it was common and without consequences. After reading your article on the subject, I realize that it is not so simple.
This MPV would be at the origin of my chest pain (at least on the left), my fatigue, my breathlessness etc. …. I was far from imagining that it could be a consequence of a deficit in thiamine (doctors also, a priori).
Yes, MVP is myxomatous degeneration of the valve, based on cellular energy deficit.I have seen it disappear with megadose thiamin. We are complex electrochemical “machines” and if the genome is perfect (and it never is), all we require is cellular energy.
Doctor,
Some distributors (not all) indicate in their sites that a tablet of lipothiamine contains 143 mg of Calcium. Here for example:
https://www.pureformulas.com/lipothiamine-60-tablets-by-ecological-formulas.html
That’s a lot and it’s not indicated on the container.
I need to monitor my calcium intakes for my kidney stones problems. They must be sufficient, to prevent digestive aborption of oxalates, but not too high.
Currently, I take 4 tablets of lipothiamine (2X2)/ day.
576mg of additional elemental calcium is too much for me.
Do you know if this data is correct or not, since it does not appear in the container?
Not sure if you are still reading this but adding potassium bicarbonate to water made my kidney stones disappear in weeks. I used about 4g/day but people with more kidney stones might need more or longer time.
I really do not know why it’s not the standard method to deal with them, you can buy it from mineral water companies in powder form or find premium mineral waters if you like that better but it will be much lower concentration.
Chemistry is simple enough, potassium competes with calcium for oxalate, but potassiumoxalate is drastically more soluble in water so the stones are washed out. Pretty good for BP and exercise too.
I really do not understand why it’s not the standard recommendation for kidney stones or even just people with low potassium intake, trying to drink them away is a temporary solution where you wash out stored electrolytes and it becomes ineffective (and damaging) once you run low on available electrolytes.
Hello.. I had some questions regarding B1 and after reading many of the comments and replies feel that you may be able to help me. In august of 2018 out of no where was bombarded with a bunch of random symptoms that I never felt before. It started with my left arm feeling like it was asleep (tingly, heaviness, decrease in feeling), following that was both legs from the knees down with a tingly sensation, my hearing was off (its hard to explain, it almost felt as though I was a tunnel and everything I heard felt like it was really close to my ear), extreme fatigue and inability to complete tasks that were normally very easy for me, mental fogginess/inability to think, headache, very irregular/heavy menses, irritability. I feel like I could go on and on, it was a lot. Regardless, I went to the ED and had MRI’s (all were normal), and saw neurology whom initially thought I had meningitis but the workup was negative. Ultimately, they told me anxiety can cause neurological symptoms ( I am a very laid back non-anxious person). My PCP checked my B vitamins and found my B1 was <2. So they put me on oral B1 (100 mg daily, ill be honest in saying I took 200mg the first few days, I was desperate to feel better). Within about 6 days I noticed a huge improvement in my symptoms. At the time of all this I was on a gluten free diet (my son was being worked up for celiacs disease due to GI issues) and thought maybe I just was not taking in enough B1. I do not have any other risk factors to explain why my B1 would randomly be low. Once resuming a normal diet I cut back on taking the oral B1 (hoping to be getting adequate amounts in my diet). within 2-3 weeks I felt awful again with similar symptoms that happened initially in August. Again, I recently tried to cut back on the B1 oral pills (I am not a big fan of taking medicine), but the same thing happened and within 2-3 weeks the symptoms started coming back. I feel B1 deficiency is not a well known/understood topic & I have been wondering for the past year what would be causing mine to be low. Is there any further testing you would recommend? All we have been doing is monitoring my B1 level periodically. No one ever dived further into the why this is occurring. I did read in one of the comments that a diet high in sugar can deplete B1 levels quicker than a diet low in sugar. My brother has in the past had similar symptoms and has noticed a significant improvement once cutting out as much sugar as possible in his diet. I am not sure if this helps or not but I have always had issues with remembering stuff- & my mother has issues with memory as well. She was diagnosed with MS years ago but I really do not think it was a proper diagnosis. Any help would be greatly appreciated.
You have proved thiamine deficiency and there is significant family history to suggest that there is a genetic connection. When you stop the megadose, you relapse because you need to continue the thiamine for life and your son probably needs it too. Add magnesium and a well rounded multivitamin to your supplements. This is not “medicine” and there is no toxicity.
Thanks so much for replying && your input!! Is there any specific genetic testing you’d recommend? I am more so interested for the sake of my children. I feel great since following your recommendations so could careless about confirming with testing for myself but feel their pediatrician would be interested in concrete results/data.. thanks again for your help!
Dr Londsdale, I have a question as I think my mother has been suffering from dry beriberi for many years. Her thiamine whole blood test was at minimum or below minimum for the span of 12 months of testing before supplementing her with thiamine. And I have a question on thiamine supplements.
When my mother initially takes thiamine hcl supplements, she feels absolutely great. But after taking it for about 4-5 days, it becomes less effective. She has to pause for about a week before taking it again.
My question…
1. Does the body build up tolerance, resistance to oral thiamine supplements (thiamine hcl, allithiamine, sulbutamine, etc)?
2. If so, what can we do?
This is a surprising phenomenon to me but I may have an answer. Thiamine requires magnesium since they work together so try adding it as a supplement, probably about 125-250 mg/day. Perhaps the thiamine without the magnesium creates a biochemical crisis. I had a patient whose heart disease responded rapidly to thiamine but became resistant to its benefits. I did not jump to the magnesium problem at the time, but I never forgot the incident and it might just be the answer. Please let us know if this works!
Derrick Lonsdale:
Hi and thank you for writing this excellent book about Thiamine! We are a family from Norway. I have a daughter who have celiac decease and have never recovered from this since diagnosed in 2015. She is now 13 years old and not well. Lost of different symptoms and many blood tests are taken but no other diagnose. Is it possible to contact you outside this forum for some questions? It is a bit personal here I think. You can contact me at my email if you have the possibility! Best Alf
Depends on how the diagnosis was made. Gluten sensitivity is not the same as celiac disease. We need more information.
Dr. Lonsdale,
What are you thoughts on this article stating that Thiamine diphosphate is the best test? Thank you.
https://asantelab.testcatalog.org/show/TDP
Excellent test, expensive
Dr. Lonsdale,
Are you familiar with the Spectracell micro-nutrient test panel? They claim that testing white blood cells give a better picture of micro-nutrient utilization. I’m seeing with a physician who utilizes this test.
We’ve looked into the New Jersey lab listed in this article, however, since they only do the ETKA, but no the TPPE, we are hesitant to order the lab kit.
Not sure if I can put the Sprectracell link here, but I’ll try. Thank you for your work.
https://www.spectracell.com/clinicians/products/mnt/
I’m also wondering about SpectraCell testing as it’s been offered as an option by my daughter’s doctor.
It would be great to get an answer to this question.
Dear Dr Lonsdale
Thank you for all the information you provide on this website, it’s incredible.
I wondered if you are able to recommend any nutritionists in the UK specialising in thiamin deficiency treatments?
I am 57 years old, female, and have been ill for 12 years, with what seems to me on reading your web posts classic symptoms of dry beriberi. My mother (an only child) and maternal grandmother had very similar symptoms and progression to me, my sister seems to be fine. The main initial symptom for me was complete heaviness in walking, and gradual loss of muscle strength and tone in my legs, to the extent I cannot walk unaided and rely on a wheelchair out of the house and stick in the house. Symptoms came on about 18 months after a hugely stressful period in my life, divorce and moving out of family home etc. This after being incredibly fit, active, engaged with life etc.and probably falling in to the “bright” category intellectually, getting a Masters degree etc I also wonder about the role of perimenopause in the timing of symptom onset, which would have been when I was 45.
I had neurological studies done, which came back as “nothing further we can do for you” at which point I lost faith in traditional medicine and have been trying all sorts of different alternative approaches, with no improvement, just ongoing deterioration in mobility, energy levels.
7 years ago I was diagnosed with endometrial cancer, had a full hysterectomy and follow up integrative treatment here in the UK of high dose I/V Vit C and photodynamic sonodynamic therapy.
After trying various therapies for the ongoing symptoms, four years ago I consulted a nutritionist here in the UK who did a genetic test showing methylation problems, so we embarked on a program of trying to upregulate methylation. Gradually I became trapped in a spiral of increasing interventions, worsening symptoms, and rapidly increasing stress levels. To the point where I was experiencing night terrors, panic attacks, became unable to look after myself and hit a full blown breakdown. Since then,I have seen improvements from this low point but not full recovery and certainly no improvement in walking.
I have been following a low inflammation diet (just mainly organic vegetables, small amount of fruit, and egg, meat or fish protein, and some sheeps yoghurt, no grains, sugars, alcohol, nightshades) and believing that I had suffered an acute dysautonmic breakdown, working on mind body techniques to reduce the stress response.
We have also done adrenal stress tests, KPU test, Vit D and parathyroid, and an Organic Acids Test
Symptoms include
Extreme weakness and loss of power in limbs, started in feet and legs, now notice some weakness in hands
Fatigue and lethargy, loss of interest
Really extensive muscle wastage in legs
Digestive problems, including diarrhoea and gas
Really debilitating insomnia, including whole nights awake, often accompanied by strange internal buzzings and vibrations and slight palpitations
Hair loss
temperature regulation issues, sudden sweats, cold extremities and feel cold badly in winter
Blood sugar problems, although those improved significantly after removal of sugar
Anxiety and panic attacks, again improved since last crisis 3 years ago
I am happy to talk to my current nutritonist about the thiamin, and I am sure he will have an opinion and maybe able to point me towards testing etc but he seems focused at the moment on tackling mold toxicity, and adopting a ketogenic diet as the way forward for me. And I am not so sure having read so much on this website.
I could get the BioLab test done that you mention but Is there any harm in just starting to take the lipothiamin that your mention? I already take lots of supplements, including 750mg magnesium and magnesium chloride salts baths, 10,000 mcg biotin, a good multivitamin, B6 p-5-p, potassium, coconut oil, and bioidentical hormones, niacin, coq10, betaine HCL, digestive enzymes and activated charcoal.
I apologise this is so long and rambling and thank you in advance for taking the time to read. I haven’t come across anyone with symptoms such as mine, and reading so many similar stories here has made me feel less weird. Thank you to all who have shared their stories.
Many thanks
Alison
This is a typical energy breakdown. She has exaggerated sympathetic overdrive that strongly indicate lack of oxidation in brain cells. There is absolutely no harm in starting Lipothiamine although it is very likely that you will experience severe paradox that can last as long as four or five weeks. I would start with a single dose of 50 mg a day and wait for worsening of symptoms. Continue on 50 mg a day until the paradox is complete. When you start to feel better you can increase the dose and because you almost certainly have a genetic defect, push the Lipothiamine according to benefit. I have not experienced any toxicity from its use and you could go to 200 or 300 mg a day easily
Your symptoms sound like Fluoroquinilone antibiotic toxicity. Check your records and see if you had taken any. Sometimes symptoms start immediately and sometimes delayed a few months. The term is known as “floxed” by the tens of thousands of us in the USA damaged by it. Lots of info online, Facebook and YouTube. Our site is fq100.org
What hospitals or doctors specialize in thiamine in the cleveland area.
Thiamin is not a specialty. It is part of overall nutrient based treatment
Hi Dr. Lonsdale,
I am new to this website and new to thiamine in this discussion and in general. I am writing on behalf of our 27 year old son. He was diagnosed on the autistic spectrum at age 2 (PDD-NOS diagnosis at the time). He recovered quite well by the age of 5 and went through grade school, middle school and high school relatively normally. At the age of 14 1/2, he had his first gran mal seizure. He was put on tripleptal and took it…sometimes. He then had another seizure at 17 1/2 and was put on more trileptal. This seizure marked the increased onset of seizure activity which led to an eventual temporal lobectomy in April of 2013. After the surgery he has been mostly seizure free – especially in the last 1 1/2 years. Drugs prior to surgery were trileptal at ever increasing doses coupled with various other drugs which he failed including keppra and zonisamide. After surgery, he was put solely on Vimpat then added Trokendi about 9 months later and then finally Lamictal was added in June of 2016. In October of 2016, he experienced an acute onset of bilateral pain in his upper extremities. He was never able to give proper voice to his pain – it was very hard to understand what he was going through. He is a professional musician by training and was also doing menial office work at the time, so we just chalked it up to overuse. My husband is an orthopaedic surgeon, so we went about a total orthopaedic workup complete with PT focusing on his upper extremities as well as postural alignment. He also tried chiropractic and massage therapy (you can tell we have been desperate given an orthopod’s permission to have his son have chiropractic treatment!) No improvement with any type of therapy. In late November of 2017, he then experienced an acute onset of lower extremity pain while driving. He was barely able to meet us at a restaurant and has been incapacitated since then. He can walk by shuffling and most movement is painful unless at rest. He was briefly hospitalized in early December – admitted by his epileptologist – and underwent thoracic and lumber MRI’s with normal findings as well as and EMG. He was seen by a musculoskeletal neurologist (we live near an academic medical center) who had trained at the Mayo Clinic, and he recommended a referral there. His appointment isn’t until May 10, 2018. He was referred to a pain specialist for treatment. This physician requested a QSART test. His results were abnormal in that his right side had hemispherically abnormal results which then the physician said it was sympathetically mediated nerve pain. Two nerve blocks were performed with no change in pain. He has also had lab work done which was relatively normal except for low folate. We have been supplementing him with folate for the last 4-6 weeks. He is also in week four of a gluten free diet (his diet has always been poor and quite limited like many of those on the autistic spectrum). Today he is having an MRI of his brain which was my idea. My hubby and his neurologist say it is not warranted, but they’ve known me long enough to trust my intuition. I don’t know what results to hope for. I have posted his case on CrowdMed. A suggestion of Fabry’s Disease was offered. That was just last Friday, and it is now Monday. I am still wondering about this low folate and B12 and thiamine – what role, if any, could there be in this situation? I am not medical in any way but was married to my husband before medical school even started, so I have been around the block. I am a creative person at heart and am trying my best to help solve this medical mystery. Our son hasn’t been able to play music for a year and a half and can now barely walk. It breaks our heart. Please let me know if you have any advice, theories or intuition in this matter. Although this is a long post, I know it barely scratches the surface of his situation. Thank you so much for your time and consideration.
I am interested. Please offer the following information. 1.What is a QSART test and what is meant by” his right side had hemispherically abnormal results”? I am familiar with asymmetry in the ANS. 2. I have some info on “extremity pain” and may be able to offer treatment. 3. Is sugar important for his diet and does he consume any alcohol? 4. Do you know your son’s IQ ? 5.Are there symptoms of dysautonomia? 6.Has there been any mitochondrial genetic testing?
Thanks so much for your time and attention in our son’s health. I will answer your questions to the best of my abilities.
1. (I just copied and pasted this from the internet) “QSART is used to diagnose: Painful, small fiber neuropathy when nerve conduction test results are normal. Disturbances of the autonomic nervous system, which controls the sweat glands, heart, digestive system, other organs, and blood pressure.” As I understand his results, abnormal results were manifested on his right side but not on his left leading the pain physician to call it “sympathetically mediated.” Two nerve blocks were tried on the right side about 3 weeks apart. They could tell they were in the right spot because his right arm was warm for a certain amount of time (that made no sense to me, but we were looking for the change and they seemed satisfied the right area was reached – my husband was able to attend that appointment). As of this last Sunday, his neck became acutely involved as well. He also experiences some allodynia.
2. Any information or treatment offered would be enormously appreciated.
3. Sugar…he has always had a pretty limited diet, but I wouldn’t necessarily say that he is a huge sugar addict. Certainly he has enjoyed sweets since he was a child. Since his temporal lobectomy, he has been on a low-glycemic diet (as prescribed by the epileptology dietician at our local state medical center, and it is kind of a strange diet but is supposed to reduce glycemic hits to his brain) and follows it fairly well though he does not eat many fruits or vegetables. As part of that diet he is to limit sugar when not combined with a fair amount of fat, i.e. cheesecake is fine but Skittles are not. He consumes absolutely no alcohol, and the few times he has tried it it has induced seizures or auras. The same is true for marijuana.
4. I can’t say I know his IQ, but throughout school he was a decent student who is really, really bright but tends to excel in those subjects he cared about. His standardized tests scores throughout school were always in the 80s-90s percentile. He also was largely self-taught on guitar and tested out of some classes upon entering the Berklee College of Music in Boston. Despite his current situation, he is teaching himself coding and is hoping to go back to college for computer science.
5. I didn’t know what dysautonomia until just now looking it up, and I would say he definitely has some of those traits/symptoms. He has never really sweated very much (nor does his paternal grandmother nor did her mother – to the point of easily overheating), low blood pressure (which I certainly had at his age, and he is in no way an anxious person), my husband and I are quite athletic from athletic families, and he has never been interested, enjoyed or tolerated a lot of exertion, I’m not so sure about the gastric side of things since he largely lives away from us. As far as temperature control, he rarely complains about temperature but has always seemed to be warmer than cool. I just read about neurocardiogenic syncope (NCS), and he does have quite a few (if not all) of those triggers which include: dehydration, stress, alcohol consumption, very warm environments, tight clothing. When exposed to any of those triggers, he will often think it’s an aura coming on.
6. No genetic testing of any kind thus far.
He did have an MRI on Monday which was normal. He has an echocardiogram tomorrow (Friday). I’m not sure if you’ve heard about a site called CrowdMed (it’s a site where people can post mysterious medical cases and various physicians and others weigh in to see if a diagnosis can be found), and the physician who is the administrator on the case mentioned Fabry’s disease when I mentioned in the case that our son has a paternal 26 year cousin who was diagnosed with hypertrophic cardiomyopathy as he was entering medical school. As I researched it, it seems unlikely in that the disease is not passed from father to son, but only from fathers to daughters and mothers to either son or daughter. We are going ahead with the test for more information.
I know his appointment at the Mayo Clinic is nearing, but I see no reason to stop trying to figure this out. I know there is a phrase in medicine of “when hearing hoofbeats don’t look for zebras.” This makes me think his condition has something to do with his anticonvulsants and some latent malabsorption process that is causing a cascading effect of imbalance in his body that is leading to this.
Again, thank you for your time and effort in this matter. It is greatly appreciated!
It is indeed an interesting problem. I would pick out certain features. Allodynia is (to me) a strong indication of brain inefficient use of oxygen. Though it might make your husband have a fit, I have concluded that beriberi is the “great imitator” of disease, because it is the classic example of acquired mitochondrial dysfunction. The other cause of Mt disease is, of course, genetic. If hypoxia is the direct cause of allodynia, anything that interrupts oxidation will have the same effect. That is why thiamin deficiency is referred to as “pseudo-hypoxia”. As your husband knows, the posterior brain is peculiarly sensitive to thiamin deficiency and the resulting chaos is mediated through the autonomic/endocrine axis in the form of incomprehensible symptoms, i.e. dysautonomia. My diagnosis is that all his symptoms fit mitochondrial dysfunction, including his seizures and the auras. Beriberi (as a model) affects the sympathetic system at one stage of its progression and the parasympathetic at another stage and low blood pressure is a classic sign. Sometimes the diastolic can be zero. The cousin has a classic sign of “beriberi” with hypertrophic cardiomyopathy. My take is that this is a genetically determined mitochondrial disease that may require another factor (e.g.alcohol, sugar, infection, trauma) to express itself clinically. Hence, its intermittent expression, each with its residue of lasting effect. It MIGHT respond epigenetically to thiamin tetrahydrofurfuryl disulfide (TTFD). I suggest that you look this up on line and get my paper (it is available as Lipothiamine)
Thiamine tetrahydrofurfuryl disulfide: a little known therapeutic agent.
Lonsdale D.
Med Sci Monit. 2004 Sep;10(9):RA199-203. Epub 2004 Aug 20. Review.
I can’t thank you enough for your thoughts and suggestions. He is waiting for an echocardiogram just now, and I am going to spend the time researching your site. As I did a little more research, I saw that speech can be involved. He has stuttering issues that have gotten worse and worse in the last few years. We thinking get it was perhaps related to his temporal lobectomy.
Also, what kind of specialist would deal with this? An endocrinologist? Neurologist? I will definitely have more questions regarding testing, etc. I seemed to recall reading somewhere on this thread that the Mayo Clinic does not test in such a matter to potentially pick up this problem, which we would need to be aware of before heading there. Thanks again, I’ll be in touch soon.
Hi Dr. Lonsdale,
Over the weekend, my husband was able to delve into beriberi and thiamine as related to our son’s case and really thinks you have hit the nail on the head. He has spent a lot of time trying to understand the mechanisms and processes surrounding thiamine and other agents. Clearly this is a stretch for an orthopaedic surgeon who is more than twenty years out of medical school. 😉 Now our dilemma is the lack of availability of testing and how to convince any physicians of this possibility. From what I have gathered on this thread, this diagnosis goes against the grain of Western medicine in the United States, and we worry about resources to help us confront this problem.
I have read a lot of what is on this thread – all of which I certainly don’t understand – but it seems that a few different supplements need to be implemented in order to make ensure the proper process is completed. How might we go about determining this? And, are these supplements we are getting just eliminated by the body if there is more than is needed? Any thoughts you have would be greatly appreciated.
My husband did order this from Amazon last night: Ecological Formulas- Lipothiamine 60 tabs the content of which is this: Lipothiamine 60 tabsA Dietary SupplementSupplement FactsServing Size: 1 tabletServings Per Container: 60Amount Per Serving:Thiamine Tetrahydrofurfuryl Disulfide (Vit. B1) 50 mgAlpha Lipoic Acid (Thioctic Acid) 7.5 mgOther Ingredients: Dicalcium Phosphate Cellulose Derivative Magnesium Stearate Silicon DioxideDirections: Take one or two tablets daily or as directed by a physician. These tablets should be swallowed intact and not be chewedLipothiamine is a scientifically designed food supplement and represents the biologically-active form of vitamin B1. He also ordered a magnesium supplement. Here is the info on that. Integrative Therapeutics – Krebs Magnesium-Potassium Complex – Support for Healthy Heart Muscle Function – 120 Tablets. Provides well-absorbed form of potassium and magnesium to support healthy heart muscle function. Krebs Magnesium-Potassium contains potassium and magnesium in the form of Krebs cycle intermediates (citrate, fumarate, malate, succinate and alpha ketoglutarate). These organic acids are responsible for energy production within every cell of the body, including the heart. Minerals in the form of Krebs cycle intermediates are better absorbed and utilized.
From a more global point of view, my husband and I have been talking about this issue, and it seems as though this could be a watershed moment for thiamine deficiency, and we are wondering what can be done to regain testing at the very least and to raise more awareness. In addition to our nephew with hypertrophic cardiomyopathy, I have a father with Alzheimer’s, cousins with celiac, a daughter with gastrointestinal issues and depression, a nephew born with severe arthrogryposis, not to mention our son. I am just wondering if there is a thread through many of these health issues. Anyway, thank you again and again for your thoughtful efforts and input. You are way ahead of your time, which I’m sure is cold comfort to some degree.
Kind regards,
Julie
Although the chemistry is complex, thiamin stands astride the enzyme (like a gate) by which glucose is oxidized (burned) to create energy. The job of the citric acid cycle is to produce electrons. They are then processed in a biochemical “machine” that creates adenosine triphosphate (ATP). ATP stores energy and is used to drive function. Because of genetic issues and/or poor diet, there are millions of people in America with a multitude of symptoms that are being hopelessly misdiagnosed. You don’t really need complex lab work. Simply start with 1 tablet a day, wait for paradox( temporary increased symptoms) to subside and then gradually add tablets slowly until symptoms begin to disappear. It should be accompanied by magnesium (250-300 mg) and a well rounded multivitamin. I have used Lipothiamine in hundreds of cases. It is completely non toxic and can be dosed much higher to as many as 5 or 6 tablets a day. Your husband can go to pub med and research thiamin by inserting my name in his search. There is lots of information available
Also, does Biolab Medical Unit in London still perform the test? If so, perhaps we send it there.
Last time I checked, they only did the TKA first part, not the thiamin pyrophosphate stimulation effect(TPPE). That will miss all but the most severe deficiency
Dr. Lonsdale,
There is a lab in New Jersey http://www.hdri-usa.com/, which offers the following tests: Enzymes (EGOT, ETKA, ESOD, EGR, EGPx, Catalase. I just read your note to Julie about the TPPE being necessary. Am I understanding that the TPPE is separate from the EKTA?
When I called this lab in New Jersey, the woman I spoke with had no idea what I was talking about when I asked about the TPPE. I don’t think she had any knowledge of the test, and was just reading the description to me.
Thank you.
ETKA stands for “erythrocyte transketolase activity”. Transketolase is an enzyme whose activity depends on thiamine and magnesium. Measuring its product provides the baseline activity of the enzyme and it has a normal range as measured on healthy people. It can be normal if thiamine deficiency is mild to moderate. The next and essential part of the test for depicting thiamine deficiency is to repeat the reaction after the addition of thiamine pyrophosphate, the active form of the vitamin. If the activity of the enzyme increases, it is reported out as the thiamine pyrophosphate effect (TPPE) meaning that the enzyme activity was below normal until it received thiamine. It is reported out as a percentage increase over the baseline result. If the enzyme was saturated with its cofactor the TPPE would be zero meaning that there was no acceleration as a result of the addition of thiamine. The percentage increase over baseline represents a gradual transition from thiamine adequacy to deficiency. A laboratory measuring only the TKA will miss the majority of thiamine deficiency patients.
Greetings from the Mayo Clinic. It’s our second trip in two weeks. I’ll try to keep info brief. If there are any typos or misreadings it is my fault. This is what I got from nurse over the phone earlier this week: Last week tests revealed pANCA and MPO antibodies (don’t really even know what that might imply or what it means other than Googling it), and microscopically poly arteritis was seen.
Here is summation of MD’s note: “Very unusual relative to clinical symptomology. Sweat test shows unusual pattern of asymmetric truncal anhidrosis which could be related to prior sympathetic blockade or medications but could also support an autonomic ganglionopathy. Recommendation: pursue further extensive lab evaluation, a UA for urinary sediment, rheumatology consult and an autonomic reflex screen. Other labs are unremarkable except for mildly low bioavailable testosterone and low normal total testosterone level. “
We are in the midst of those tests. Do any of these results rule out thiamine deficiency? Do you still think it’s a possibility? He has been on thiamine supplements for about 10 days and seems to feel a bit less pain, but that is also the time period in which he began aquatic therapy so hard to know. Let me know your thoughts…dying to know! Thanks so much.
I sincerely believe that disease is caused by a collective effect of cellular energy deficiency. The better the brain, the more energy requirement. That is why I questioned his IQ. Years ago, I had a 12 year old epileptic boy whose medicine had been discontinued suddenly and resulted in status epilepticus. I treated him with intravenous Lipothiamine, resulting in complete relief. I knew a neurosurgeon who believed that seizures were caused by inefficient oxidation and this treatment suggested that he was right. I would like to refer you to our recently published book “Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnutrition”, available on Amazon books
My brother became very ill after working hauling frackin sand. His muscles wasted away and his lungs became weak. He was diagnosed with beriberi. He is being treated with thiamine and b12. I wonder if biotin is the missing link.
Please tell us more. We may be able to help
I read the reply from caveman 1who lived near a frackin site. He stated that he had to do 20 times normal amount of thiamine and biotin to be able to get out of a chair. He lived near frackin site. My brother waited in line everyday to deliver to frackin sites. One day he got out of truck and could not walk. He made it back to the truck and never worked again. Months went by and no one could figure out what was wrong. He went on oxygen and lost a lot of weight. One hospital thought he was an alcoholic because he was low in thiamine. We told the doctors he did not drink. He was transferred to a nursing home and they did not continue with the thiamine. We currently have him on thiamine at a different nursing home. He also has high folate and b12 and is anemic.
I am afraid that this is a fairly common example of a complete refusal to recognize and deal with severe thiamin deficiency. My comments are as follows. He may have been slightly deficient (the easiest way to thiamin deficiency is consumption of sugar) worsened by exposure to some toxic agent from fracking. Without going into the technical issues, a major clue is the increased folate and B 12 that seems to be associated with thiamin deficiency. I would suggest that you obtain Lipothiamine from Ecological Formulas and provide him with at least 200 mg a day together with 300 mg of magnesium and a well-rounded multivitamin
I just received thiamin (vitamin B1) whole blood test back and it said my value is 184. What does that mean?
The normal range for whole blood thiamin is 74-222 nmol/L so your blood level is in the normal range. Unfortunately, it is meaningless because the whole blood level can be perfectly normal when there is mild to moderate thiamin deficiency.
Hi Dr. Lonsdale,
Here are some studies which show high sulfur levels in cattle caused thiamine deficiency which resulted in polioencephalomalacia.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1681016/
https://vetmed.iastate.edu/vdpam/research/disease-topics/toxicology/sulfur-toxicity
http://www.merckvetmanual.com/nervous-system/polioencephalomalacia/overview-of-polioencephalomalacia
And here are some links showing high levels of sulfur dioxide are being sprayed across our skies.
http://stopsprayingcalifornia.com/Sulfer-Dioxide.html
https://gnosticwarrior.com/al-gore-chemtrails.html
https://en.wikipedia.org/wiki/Stratospheric_aerosol_injection_(climate_engineering)
https://chemtrailsinourskies.wordpress.com/bill-gates-involvement/
Is it possible for high levels of sulfur dioxide in the air to create a thiamine deficiency in a population of people the same way it does in cattle?
Thank you so much for your research and insights into this subject! 🙂
I don ‘t know
Hi there.
I have been sick a long time, and suspect I have a genetic thiamine transporter deficiency. I have been taking sulbutiamine for 4 days, and added in allithiamine ecoligic formulas today. I saw your patent where you gave 50mg allithiamine 2-3 times a day rectally to autistic children, and they improved a lot. The recommended dose for sulbutiamine is 400-800mg a day or more so it is multiple times more than the dose for allithiamine. This makes me wonder if allithiamine is a lot more bio available than sulbutiamine. Allithiamine is lower molar mass than sulbutiamine so may cross cell membranes easier. Logp of allithiamine is 0.9, logp for sulbutiamine is 2.7. Optimal logp for crossing of membranes is somewhere between 0-3, but maybe the lower logp for allithiamine is better because it will be more water soluble compared to sulbutiamine which is not water soluble at all. So Dr Lonsdale out of those two forms of thiamine, which one, in your opinions is the most bioavailable? And what about some of the other lipid soluble forms of thiamine mentioned in the literature.
Regards,
Sam.
In my view, the best thiamin derivative is Lipothiamin because it is enteric coated and passes through the acid environment of the stomach to the jejunum where it is absorbed. This is one of the many open thiazolium ring disulfide derivatives. The disulfide is reduced at the cell membrane, the prosthetic group is removed and the ring closes inside the cell. The reason that it is called fat soluble thiamin is solely because of this capacity to pass the active molecule through the lipid barrier of the cell membrane. It does not require a thiamin transporter. Lipothiamin comes in 50 mg tablets.
Hi Dr Lonsdale
I am taking lipothiamine from iherb since yesterday. Sometimes I crush the tab in my teeth, and let the powder dissolve under my tongue to take it sublingually. This feels a lot stronger than just swallowing it.
There is studies showing disulfide bonds do not break in stomach acid so the enteric coating seems unnecessary. The best of the best form may be the thiamine in garlic- thiamine allyl disulfide. I am getting some from a chemical manufacturer, and will try it. TTFD likely has side effects as it is not a naturally occurring molecule. This is not made clear on a lot of websites. I took sulbutiamine at 5 g a day for 4 days, and got a lot sicker. I suspect it inhibits thiamine enzymes or transporters. It is dangerous, and ineffective. The studies say it raises organ thiamine more than thiamine HCL but they must be fabricated like the ones on benfotiamine saying it raises organ levels 25 times higher than thiamine HCL. And there is a lot of nootropic websites promoting sulbutiamine. Someone is spreading deliberate misinformation. I suspect psychiatrists because so many diseases, and mental illness is caused by thiamine deficiency which is easily treated with TTFD. The type of thiamine in grains before it is refined must be a lipid soluble or some other bio available form not a salt. And the type thay add back in to fortify them must be a salt which is why thiamine deficiency is still common in the population.
I found this PubMed article titled “Widespread episodic thiamine deficiency in Northern Hemisphere wildlife.”. from December 13th, 2016. They say, “the results point towards insufficient amounts of thiamine in the food.”
https://www.ncbi.nlm.nih.gov/pubmed/27958327
Could a thiamine deficiency be what is what is causing the massive animal die offs to occur in our fish and bird populations?
If these animals are not eating sugar like most Americans , could it be pesticides or other xenoestrogens from pollution causing their depleted thiamine deficiency?
Another theory that comes to mind is chemtrails which have shown to be full of poisonous sulfur compounds. Sulfur supplements have triggered thiamine deficiency in grazing herds. Could this be a possible cause also in our air we breathe?
I’m just an independent researcher with POTS syndrome at age 34. Thiamine has helped in so many areas. Thanks for your time. God bless .
Thank you for this interesting article. I was not aware of studies in this area. I suppose that thiamin deficiency could be having a major effect. The cause may not be so much in the food supply since that really hasn’t changed for wild animals. However, it seems that many different forms of stress, including trauma, infection and toxins may be precipitating cellular thiamin deficiency and it may be that toxins developed from human activities might be primary in this respect.
Hi Dr. Lonsdale,
I came across this blog about estrogen dominance in our bodies caused by thiamine deficiency and was wondering what your opinion is about it.
https://raypeatforum.com/community/threads/vitamins-b1-b2-are-required-for-estrogen-inactivation-by-liver.6868/
A few years ago I learned about xenoestrogens in the environment caused by pesticides and plastics in our food chain. I did some supplementation with progesterone oil from Dr. Peter Eckhart and saw really good results with improvements in my sleep and anxiety and digestion .
I was wondering what your opinion is about chemicals in the environment triggering a thiamine deficiency. The study says:
“…Our results clearly demonstrate that, of the vitamins tested, riboflavin and thiamine are essential in
the metabolism of esradiol by liver slices. The inactivation of esradiol is dependent upon the concentration of these vitamins in the liver.”
http://www.jbc.org/content/154/1/79.full.pdf
Thank you for your time and help.
An interesting question! I spent several hours trying to find an answer by library research. I found a manuscript in which the abstract states “in uterine endometrium, the level of estradiol is controlled by oxidative 17beta-hydroxysteroid dehydrogenase activity which converts the bioactive hormone to the less active compound estrone” I understand that this is highly technical but what interested me was that the enzyme is classified as a dehydrogenase. Many dehydrogenase enzymes require thiamin and riboflavin, but I could not find whether this one also requires these vitamins. If it does, it would provide an answer to your question. The study was done in primates and is likely to apply to human physiology.
Dr. Lonsdale,
My mother is 93 years old, and for the last 3 years, since the divorce of my brother, she’s been depressed and having lapses of memory and digestive problems. I was wondering if thiamine could help her. I remember that you said that magnesium, a good vitamin complex and thiamine would do good for lots of people.
In doing my research after being severely effected by Lupron, I have read many studies and articles , especially those posted on Hormones Matter. Has anyone thought of coordinating a symposium for the main authors? I believe getting these people together could potentially lead to huge idea exchange with extraordinary outcomes. I would be willing to assist.
Also in my research, I was looking into the effects of the amino acid substitutions made in the Lupron, mainly how D-leucine was substituted for glycine. This seemed to be a potential link between all of the diseases and syndromes and thiamine deficiency as noted in the Hormones Matter articles.
I just found a paper, published by Stephanie Seneff and Anthony Samsel in the Journal of Biological Physics and Chemistry, called Glyphosate pathways to modern disease: Amino acid analogue of glycine in diverse protein, Feb/March 2016. They pull together information from their research and many studies that show the adverse effects of simple glycine being substituted with larger synthetic analogues. I would encourage everyone to read this article, possibly get a summary published here, and start discussions that link all our research.
We would love to do a conference. It’s been longstanding goal of mine to put such an event together. The issue is funding. Regarding Stephanie Seneff’s work – have been following her for years. Have cited her work in a number of articles and in our new book.
Dr. Marrs,
I was reading this paper and I am now wondering if there is a way to access the thiamine status by measuring the diphosphate and if this one is good enough? Please advise.
https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/42356
Westlake Labs and TMI no longer offers the transletolase test. Is there anyone that knows where the test
can be purchased?
Dear Dr Lonsdale and Dr Chandler,
I am a women from Germany (39) and stumbled upon the thimaine related stuff accidentally.
I have normal lactate/pyruvate levels and normal serum b1 levels, thats why none of my doctors ever thought of mitochondrial issues as a cause for my symptoms!
But: 2 years ago I started to have severe leg problems and I never recovered from that: permanent tingling, twitching, cramping and leg weakness. The same day this started I developped gastroparesis. Then, over time, my pregnenolone levels dropped to the point only very aged people have (and I Learned pregnenolone is made in the mitochondria). I have also high nitric oxid levels and don’t know why.
I can hardly walk because of my legs/exhaustion and I get strange sensations like feeling “poisoned and inflammed” all over and my stress response kicks in (insomnia) without even having had any stress (just trying to walk causes this cascade of symptoms). That’s how I got from being sporty/active to a women who can barely walk within 2 years.
My diet is very restricted now due to many intolerances, but it wasn’t when I developped the condition (I ate very healthy 2 years ago). I can now only eat mainly white rice, some meat and a few vegetables.
I had a look into your new book on Amazon and will buy it, because I saw you explain the thiamin/mitochondria link in great detail. But I also saw lactic acidosis is often mentioned which I clearly don’t have (at least according to my levels). Are there any experiences if my problems could be linked to thiamine deficiency? I have no lab available which tests for the transketolase. Any suggestions? My condition could easily be named “chronic fatigue syndrome”, but I feel there must be some underlying mechanism.
Thank you for reading!
This is an interesting post. The fact that you acquired the symptoms two years ago strongly suggests that this is not genetic alone, but related to an unknown stress factor or nutrition. It is interesting that your diet of white rice is exactly what produced beriberi for thousands of years in China and Japan. On the other hand a normal pyruvate and lactate tends to mitigate against thiamin deficiency. A normal blood thiamin does not preclude deficiency. It is possible that it might be magnesium deficiency, since magnesium and thiamin work together. There can be no harm in taking Lipothamine and magnesium on a clinical trial, but my suggestion is that you get a series of intravenous water-soluble vitamins.
Thank you for replying, Dr. Lonsdale!
The stress factor that preceded the sudden onset was ongoing insomnia along with a medication I was put on for sleep (quetiapine). The medication didn’t help but produced permanent cramping/twitching which resolved about 80% when I stopped it (some twitching remained).
Some months later I slowly rode my bike and noticed a weird sensation in my legs. I went off my bike and my legs collapsed. That was the point of no return, the weakness/cramping/twitching and muscle pain (like too much sport, but only after a few steps) never went away. So the sport has triggert a condition that may have been there latently before (the reaction to the low dose medication also wasn’t normal I guess). Thank you for suggesting Lipothiamine & magnesium along with watersoluble vitamins, I will try that!
Insomnia can be the first sign of thiamin deficiency
A 71-year-old man with a body mass index of 22 kg/m2 and a medical history of rheumatoid arthritis and type 2 diabetes developed a gastric cancer located in the antrum, which was diagnosed by biopsy. At the time of the cancer diagnosis, the patient’s laboratory data showed no evidence of malnutrition, nutritional deficiencies or metabolic disease, and his liver and renal function tests were within normal range. In the absence of any associated gastric lesions, the patient underwent subtotal gastrectomy with Roux-en-Y anastomosis.
On pathological examination, the surgical specimen showed poorly-differentiated, intestinal-type adenocarcinoma, clear resection margins, and vascular and perineural invasion. The cancer was staged as IIIA (pT3 N2 G3) according to the American Joint Committee on Cancer/Union Internationale Contre le Cancer (AJCC/UICC) Classification [13].
A week after the operation, the patient experienced isolated episodes of confabulation, which regressed after treatment with quetiapine and phenothiazine. He was discharged in good general condition.
Five days later, he was readmitted to hospital with recurrent episodes of vomiting and confusion. He showed no signs of malnutrition, such as hypoalbuminemia or steatorrhea. Laboratory tests showed electrolytes within normal range (n.r.), RBC 4.00 × 1012/L (n.r. 4.40–5.60 × 1012/L), and Hgb 9.2 g/dL (n.r. 13.0–17.0 g/L). Esophagogastroduodenoscopy and barium X-ray ruled out any obstruction at the site of anastomosis. Neurological examination revealed a moderate cognitive impairment with confabulation. The psychiatrist attributed the patient’s altered mental state to a maladaptive reaction to the surgical procedure. The patient was treated with paroxetine and quetiapine. His mental confusion regressed and he was discharged in good general conditions.
A month later, he relapsed with psychomotor agitation and dysphagia. Laboratory findings on admission were: RBC 3.35 × 1012/L (n.r. 4.40–5.60 × 1012/L), Hgb 8.2 g/L (n.r. 13.0–17.0 g/L), albumin 2.80 g/dL (n.r. 3.50–5.20 g/dL), folates 6.4 ng/mL (n.r. 3.1–20.5 ng/mL), Vit B12 614 pg/mL (n.r. 189–883 pg/mL), Vit D 27.4 ng/mL (n.r. 30–100 ng/mL). Skull CT showed no signs of any ischemia or intracranial lesions.
On cranial MRI performed on the second day after admission, axial T1-weighted images showed low-density alterations in the vermis, periaqueductal gray matter, mammillary bodies and thalami (Fig. 1). Diffusion-weighted imaging showed high-density changes in the same areas (Fig. 2). These MRI findings prompted to the diagnosis of WE and Vitamin B1 was administered intravenously. The patient died three months later in a state of general neoplastic cachexia, having made no neurological recovery. The family had asked a specialist in legal medicine to conduct a preliminary examination of the patient’s case to confirm or rule out any medical malpractice, but when his general conditions deteriorated due to the cancer’s diffusion, they abandoned the idea of any lawsuit against the medical practitioners involved.
Gastric surgery has been clearly associated with thiamine deficiency and Wernicke’s encephalopathy for some time now. There are dozens, if not hundreds, of articles on the topic. I found the publication of the case study of which speak.
Thiamine deficiency is also common in diabetics and in the elderly, so while he did not show evidence of malnutrition pre-surgery, he likely was, perhaps not severely, but sufficiently that the stress of a surgery alone would have precipitated his decline absent intervention, that he underwent Roux-en-Y procedure which blocks intestinal nutrient absorption, was guaranteed to place him in a deficient state. Again, that this was not immediately addressed is problematic. Why they would give him antipsychotics, makes absolutely no sense.
What is the threshold for beri beri using a thiamine blood test? My results are below the range.
“My results (of what?)are below the range”. Also, I don’t know what you mean by a “threshold” or what test was used. A thiamin blood level can be quite normal in the presence of deficiency. If the blood level is abnormally low, it is a guarantee of deficiency. Unfortunately, Ginger does not tell is anything about her symptoms.
I had a vitamin B1 blood test done. The result was 63, and the range is 70-180. I can’t find anything online that tells me if this classifies as beri beri or just a deficiency, and that was my question. I do have some symptoms of dry beri beri. I have nystagmus and dizziness, and I’m trying to figure out how much this deficiency may be contributing to that.
Ginger responds that she has “symptoms of dry beriberi” and these include nystagmus and dizziness. The fact that she has a low thiamin blood level indicates that she does have severe deficiency.She goes on to ask the question whether this “classifies as beriberi or just deficiency”. Beriberi IS the classical disease that occurs as a result of thiamin deficiency and nystagmus and dizziness are two symptoms that occur in this disease. The point that I have tried repeatedly to make on this website is that there are a huge number of symptoms from beriberi, none of which is pathognomonic (a technical word meaning that a given symptom is not exclusive to beriberi. It can occur for reasons other than beriberi). Obviously, thiamin deficiency is the CAUSE of Ginger’s symptoms.Readers should try to understand that thiamin stands in the body’s gateway to the production of energy in all our cells throughout the body. However, the brain and heart are the most metabolically active tissues and therefore require a huge amount of the available energy. Theoretically, thiamin deficiency can affect anything in the body because it is causing energy deficiency but the brain and heart are most likely to be in trouble because of their disproportionate energy requirement. I have asked Ginger to give her medical history because it needs to be emphasized that this disease does occur in America and is actually widespread in spite of overall medical skepticism.
Dear Dr Lonsdale
I have an interesting proposal to discuss with you regarding the appearance of sudden right heart failure in patients and rapid reversal by administration of thiamine. I want to discuss the nuances of this further. Can you please share your email id for me to communicate.
Regards
Parvaiz Koul
Professor of Medicine
SKIMS
Srinagar, India
As this physician knows, right-sided heart failure is typical of beriberi, the thiamin deficiency disease that has ravaged Eastern countries for centuries. A typical x-ray of a beriberi heart shows general enlargement that is more accentuated on the right side. Because beriberi is not supposed to occur in America, when this kind of heart enlargement occurs, it is usually referred to as “cardiomyopathy, probably of viral origin”. As a physician myself, I have seen many different aspects of beriberi when I was in practice. It is common because of the huge sugar intake in the American diet.
My husband has a right foot drop issue for a while, now his meningioma on the left side of the brain is removed a few days ago, his foot drop seems worse. He has an enlarged heart, pulse rate above 100, muscle shrinkage, foot and calf numbness. His tonque shifted to the left after the surgery and speech became a bit blurred.
He has been taking Keppra for 7 years for seizure control.
Is this a clear case for B1 deficiency? How much and how long should we supplement B1? I n what form? Allithiamine?
I simply don’t know.
I have a 19 year old son with Down syndrome and this population has obstructive sleep apnea. Also the APP is overexpressed in the brain. This causes copper dysregulation in the brain – and it also affects manganese which has a synergistic relation to thiamine. Also RCAN1 is overexpressed in this population and in Alzheimers Disease and it has recently been discovered that this gene is also overexpressed in diabetes II. There has been a study on the effects of RCAN1 on peripheral tissues in DS and the pancreas and spleen function is much lower, especially the pancreas. We are experimenting with lipothiamine and Benfotiamine – trying to decide which is better/more effective. I just started my son on pancreas glandular. Something is helping. He is also on whole food vitamin B and magnesium – we will be monitoring this and changing supplements as needed. Back to RCAN1…. this gene is located on the 21st chromosome. It is very important but overexpression inhibits calcineurin which is needed and studies state the that the overexpression inhibits growth of the pancreas. Just a little history on that. The health of the gut also figures in and needs to be addressed. Obstructive sleep apnea and the brain stem – I would really like to know more about that and how Dr. Lonsdale would advise testing – what to look for. I have seen comments – he has delved into this subject and feels that it can be treated. There is no doubt in my mind that there are correlations between alcoholism and Down syndrome although mechanisms differ. The cerebellum which is thiamine dependent stops growing within hours after birth in a DS mouse model. Obviously diet is paramount. I know that Dr. Lonsdale did look into TTFD and Downs syndrome years ago and there were no clear correlation of benefit. Still, thiamine deficiency is a huge problem in this population without doubt. David Watts from Trace Minerals Inc (lab that does hair mineral analysis testing) has stated that people with Down syndrome tend to be low in manganese. I concur. I would be happy to hear from Dr. Lonsdale if that is a possibility. Looking out for the benefit of all persons with Down syndrome.
Lejeunesuggested that there was deranged oxidative metabolism in Down syndrome (Lejeune, 20 years later. Hum Genet Suppl 1981; 2:91-101). I have treated sleep apnea with TTFD. The manuscript in Orthomolecular Medicine concerning the use of TTFD in Down syndrome did suggest a slight benefit. I would certainly agree with its use in your son.
Hi Derrick, Great article
I tested low on my whole blood thiamine test and also have symptoms of low b1. 73 (78-185)
I was having really fast heart rate in the 100’s before b1 supplementation and when i took benfotiamine with thiamine hcl and thiamine cocarboxylase my heart rate slowed down considerably.
But my heart rate is too slow now. At rest it is in the 40’s and sometimes dips into the 30’s. I read that thiamine supplementation can cause slow heart rate as a side effect.
Now i dont know what i should do. Have you ever seen this side effect from thiamine supplementation?
And can you give me any clues on why this happens and how to address this issue that I can discuss with my doctor. He’s clueless as to how to proceed.
Any help?
Thank you.
Thiamine does not work alone. It is a member of the B complex. I would suggest that you reduce the thiamine to100 mg a day and add B complex, plus a significant amount of magnesium. Vitamins, like everything else in the world work on the basis of Yin and Yang, not too little and not too much. You have to strike a balance and you should add in a well-rounded multivitamin
Hi, I was wondering if you know of a list of labs in the US that does the more advanced form of thiamine testing. I can’t seem to find a lab in my area that does them. Also, what form of thiamine do you recommend in supplement form? I just started taking 500 mg 2x daily of thiamine hydrochloride and it is helping me significantly with so many symptoms. Thanks so much for your help and research. 🙂
I wish! I do not know of any laboratory that does the full test. To do only the transketolase without the thiamine pyrophosphate effect is misleading and will miss a large number of true thiamine deficiencies. Taking 1000 mg of thiamine is a colossal dose and is okay until you reconstitute the normal chemistry. I would add a significant amount of B complex and eventually you will need to lower the dose of thiamine so as you strike a balance between thiamine and the rest of the B complex. You should probably do this through a nutritionist who knows the chemistry
Greetings from the snowy Canadian Rockies, Dr Lonsdale.
Both my later wife & I were poisoned by the fumes from flaring & Incineration and some venting of Fracked Oil & Gas wells upwind of our house. Being I scientific type, I started analysis of the little data I was given initially, producing first about a 200 page treatise on Phosgene (chemical name: Carbonyl Chloride, CO Cl2) ), which was the most “successful” Chemical Warfare gas used in WW1 ( 90,000 killed in France & ~1million in Russia and some in Morocco). It smells of “newly mown grass”, which I smelled with 3″ of snow on the ground and at minus 20C, on the 18th Dec 2011, when no-one was mowing anything! Odour threshold is at 1.5 to 2.5 ppm, “immediately hazardous to life” at 4 ppm so by the time you smell it, it’s just about too late.
We were driving past well site on the public road at 50 mph. I managed to stop breathing in just 2 to 3 breaths. My wife must have breathed for about 15 to 20 breaths, before I shouted at her to stop breathing and I had driven far enough past the well site to open the car windows fully in clean air. I was badly affected, as my legs collapsed when I got out of the car at home. My wife could not walk nor talk for about 1.5 to 2 hrs. Her R lung collapsed.
There is no treatment for Phosgene exposure I found out later. We did coffee enemas, but they did not reduce the terrible ling pain. I later found out that Choro-genic acid (found in coffees) given BEFORE Phosgene exposure reduces some of the damage to the lung Alveoli. My wife’s R lung collapsed fully. I had a bloody weeping wound from the inside on my fore-head 5 days after and impressive red skin lesions 5 to 6 weeks later in my chest. You could see where the ribs & Sternum stopped the passage of Toxins through the chest.
Much later in Oct 2012 to Feb 2013, I found out that the Frack Biocides, used to sterlise the Frack Fluid were Bromine based Nitriles: Di-Brom-Aceto Nitrile (DNAN) and Di-Bromo- Nitrilo-Propion-Amide (DBNPA) and Bromine based “Bronopol” plus Di Decyl- Di Methyl Ammonium Chloride (DDAC) .
The Bromine free radicals attack anything containing Sulphur in the body: Methionine, S-Adenosyl Methionine (SAMe), Cysteine, Glutathione, Taurine, Homo-Taurine and the whole family of Sulphur containing peptides and proteins.
Many of the flares and incinerators were shut in, so I was able to return to our home after about 18 months, but My wife of nearly 35 years died on 27 Feb 2013, so I am now alone.
Much later, I realised that Thiamine and Biotin also contain Sulphur, along with insulin & other compounds. Recently on 21st June 2016, there was another Flaring incident, which came in from about 3 Km away into my kitchen. My exposure was probably 15 minutes, the time it took me to recover from falling into a chair and then manage to get up, close all the doors & windows and turn on 6 high performance air filters with activated carbon, in the house.
My need for Thiamine and Biotin increased by about 20 times. this was immediate, within about 30 minutes. About 5 days later, my need for Niacin increased by more than 20 times. I found a PhD thesis from India, showing that Niacin is oxidised by Hypo-Bromous Acid, a breakdown metabolite of the compound they were testing called Brom-amine, very similar to the Frack Bromine Biocides.
I mention these compounds and mechanisms in detail , as I believe this explains the many strange complaints suffered by people world-wide from Fracking emissions. In effect everybody has concentrated on the hydrocarbons and other ordinary solvents and so on, used also in Fracking or the Benzenes, Toluenes and Xylenes etc found in petroleum.
The body has large stores of Sulphur containing proteins, so poisoning by deficiency of such compounds is slow. No-one seems to have recognised the other sulphur containing vitamins etc, which are stored in the body in a few milligrams or hundreds of microgramme levels. So not merely deficiency, but complete absence of say Thiamine or Biotin (that is Avitaminosis B1 or B7 ) can occur in just days or a few weeks from breathing these Frack emissions.
A similar situation occurs with Vitamin B12, as the Cyanide containing Frack Biocide DBAN & DBNPA will convert “active B12 in the body (Adenosyl-Cobalamin and Methyl Cobalamin ) to Cyano-Cobalamin, which is inactive in the body. But your Dr will say you have ton of B12, becasue the Serum B12 test picks up the “Cobalt Ring” structure and any analogues (Vit B12 “look-alikes”) which are recognised by the Serum B12 test, but have no useful activity in the human body.
Nitrous oxide, produced by incomplete combustion of the liquid Nitrogen Containing Frack-Fluid oxidises Vit B12 to inactive oxidised forms. The Nitrogen is used to make the Frack Fluid more “slippery” or “slick” in American oil industry parlance.
My wife died because of sheer money grubbing greed of the Oil Companies, plus stupidity of Emergency Doctors who did not know that any kind of Irritation or Inflammation causes the so-called Cancer Markers to go high. They simply would not listen that she was not in pain and did not have Cancer. So they gave her Morphine for a Cancer she did not have! Cancer markers can go high from things even like the shock to muscles from a Car Accident, or high pollution from oil wells, for example,
Dr Londsdale, you appear to know a thing or three about Beri-Beri, Biotin deficiency and Pellagra and detoxification-nutrition which also were factors in my wife’s Death. Would there be any chance of you acting in an “Expert witness” capacity in this matter? You seem not to have forgotten the great discoveries of years & decades gone by, when “vitamins” were regarded in awe, not as “Very Dangerous” as many Drs. think today..
Although I came from Canada, my Great Grandfather Built the base of the Statue of Liberty and the installations on the area around & Staten is in NY Harbour.
His father, or was it grandfather, wrote ” Hail Columbia” and designed the Great Seal of the State of New Jersey.
His Father was one of the Signatories of the “Declaration of Independence”, for the State of New Jersey. Portraits of the Signators were painted a few months later, and this stayed in my Family until about the bi-centenary, when my family gave his original Portrait to the People and Congress of the US of A. It is in the American Museum in Bath in the West coast of England, the only portrait of a Signator of the US Declaration of Independence in England to my knowledge.
Best Wishes.
From 1 CAVEMAN
Rupert, what a remarkable and tragic, but probably common story. More folks need to know about this. Would you be willing to write your experience up as an article to be published here?
I have been dealing with chronic fatigue syndrome for around 4 years now which presents me with chronic issues like chronic diarrhea, malabsorption, a host of nueroimmune problems, and food sensitivities that limit my food intake to just four foods( rice, bok choy, mustard greens, and cabbage). The fatigue is really debilatating and can last for months to where im completely bedbound.
Recently, Ive had ongoing pain, soreness, cramps and extreme weakness in my calfs bilaterally. Usually when i get muscle weakness, it tends to go away within a week to a month of continual rest, but currenty its been 3 months and its only getting worse.
Ive been seen by a neurologist and he ordered some blood test :
Abnormal blood test:
vit d 25 hidroxy- 4 ng/ ml (30-100 ng/ ml)
cpk- 1260 u/l ( 39-308) u/l
aldolase- 22.7u /l (< OR =8.1 u/l)
mma- 152nmol (87-318nmol/L)
b12 – 242 pg/ ml (193-982pg/ml)
AST- 62 U/L (0-37 U/L)
Homocysteine- 12.5 umol/L ( 3.2-10.7umol/L)
EMG and NCS showed moderate to severe damge.
Do you suppose this could be a multi factorial deficiencies that could be causing my symptoms? My neuro thinks its some kind of mitochondrial myopathy.
I have yet to test for thiamine deficiency, but am highly motivated to do so. From your extensive experience could thiamine deficiency show up like this?
The clues are vitamin D and elevated homocysteine. You need very large doses of vitamin D3 and injections of B12 and oral folate. Vitamin B12 level can be normal in the presence of deficiency. Since chronic fatigue syndrome is due to defective mitochondria, it wouldn’t do any harm to add big doses of thiamine and magnesium as well
I could not find a lab that does the transketolase activity. I stumbled upon an article written by a lab about vitamin b1. I have a very high suspicion that what has caused my current leg symptoms and tachycardia is thiamin deficiency causing dry beriberi. Here is a link to the article :
http://www.wardelab.com/19-1.html
Here is an excerpt
Severe Deficiency
Severe thiamine deficiency is called beriberi. Three main types are recognized: “dry” or neuritic, “wet” or edematous, and “infantile” or acute.
Dry Beriberi
Dry beriberi is a disease of the peripheral nervous system involving bilateral impairment of sensory, motor, and reflex functions. The neuropathy begins in the feet and legs and then extends up the body. Early signs of dry beriberi often include sensations of pins and needles and numbness in the feet. The legs, especially the calves, feel heavy and weak so that walking becomes uncomfortable. As the disease progresses, there is a marked wasting of the leg muscles and even slight pressure applied to the calves elicits severe pain. The characteristic foot and wrist drop develop and there may be complete flaccid paralysis of the lower, and occasionally upper, extremities (1).
Wet Beriberi
In wet beriberi, thiamine deficiency affects the cardiovascular system by causing arteriolar dilation throughout the circulatory system and by weakening the heart muscle. Physical signs of wet beriberi are indicative of high output cardiac failure; they include tachycardia, rapid circulation time, elevated peripheral venous pressure, and widespread edema.
Im going to get my whole blood tested for thiamin pyrophosphate , since my lab does not offer transketolase testing.
I plan to take sublingual conenzymated active b1as thiamine cocarboxylase, 25mg once a day. Would this be enough to heal my dry beriberi? My calf muscles are atrophied, my feet are completely numb, and am confined to a wheelchair due to these recent symptoms. In addition I am also experiencing pretty bad short term memory loss, increase in anxiety, heart palpitations, and bounding/increased heart rate.
I read that you mentioned sugar consumption making thiamine deficiency worse. I consume extremely large amounts of polished white rice on a daily basis due to my food sensitivities. Would this affect my thiamine status?
Thank you for any input you can provide. I really appreciate it.
Al
25mg cocarboxylase may not be enough. White rice was the primary cause of beriberi for centuries
Based on her food intake I would also suspect protein-calorie malnutrition.
Hi, I have been having a lot of the same symptoms that some people on here have mentioned. Major fatigue, trouble sleeping, brain fog, memory issues, depression, anxiety, loss of appetite, and probably other symptoms that I can not think of at the moment. I was just tested for all of the B vitamins. My B1 came back “normal”. It is 96 in a range of 70-180. The test was performed at ARUP Laboratories in Salt Lake City, Utah. It says that the test they did measures the concentration of thiamine diphosphate or TDP. It says approximately 90 percent of vitamin B1present in whole blood is TDP. Thiamine and thiamine monophosphate, which comprise the remaining 10 percent, are not measured.
My question is did this lab do the correct B1 test on my blood? I don’t see anything about them doing a TKA test. I’m questioning whether or not I should have my blood retested through a different lab or does this sound like the proper testing. I am desperate for answers as to why I feel so bad all the time. I feel like I am not the person I was once. I hardly have any energy, can’t seem to think clearly anymore, never feel like doing anything or going anywhere. I just want to feel normal again. Please help. Thanks.
Unfortunately the blood thiamine can be perfectly normal when there is thiamin deficiency. The only test is transketolase activity (TKA) together with the thiamine pyrophosphate effect (TPPE). In fact, the TKA is usually normal when the TPPE is grossly abnormal. The reason for this is that it tests the biologic activity of thiamine inside the cell where it functions. The blood thiamine is extracellular. It is the same with magnesium that works with thiamin. You cannot tell magnesium deficiency by measuring the blood level. Please read the rest of the posts in this section.
Could a B-1 deficiency in a 69 year old woman cause sudden onset confusion with loss of memory of the confused event? My mother has been dealing with the following symptoms over the last 6-8 months: hot flashes which make her “need water right away!”, light headedness, nausea, fatigue, trouble focusing. In June she had a severe episode where we had to have her rushed to the hospital due to being severely confused. She was behaving like a person with full Alzheimer’s/dementia…she didn’t talk right, didn’t know who anyone was, where she was, was combative, stripped her clothes. Hospital ran blood, said she had low sodium, gave her an IV & over a day she gradually came back to us. She has no memory of the event, she resumed regular daily life, driving, going to work 40-50hours a week, back to her normal, regular self. Then the symptoms started again, blood was routinely checked, came back normal. Today she had another episode. Not as severe, but she left work for a dr appt, then arrived home not knowing why she left work. She was panicky, feeling like she had to be somewhere but didn’t know where to go. We gave her food (she only eats salads at work & very light breakfast), then back to hospital, did blood work, sodium levels fine this time. We’ve had cat scans done, MRIs…dr’s have no idea what’s wrong with her. I should mention she had a gastric bypass 10 years ago. Could we be dealing with a B1 deficiency? We’re in Maine, is there a place here that does the test?
This is typical of recurrent mitochondrial dysfunction. Mitochondria are the “engines” of all our cells and they are highly susceptible to thiamin deficiency. I would suggest that since you cannot get the transketolase test done that she gets repeated injections of vitamin B complex with 100 mg of thiamin and the corresponding doses of B6 and B12, that you can get through your own doctor. She should also stop taking all forms of sugar and alcohol (if any). That includes cakes, cookies, candy, desserts and carbonated beverages. It is sugar that induces thiamin deficiency.
Why would thiamine supplements cause extreme headache and nausea?
I don’t know the circumstances. Record the symptoms for which the thiamin is being taken. I suspect that there is an imbalance. Vitamins all work together as a team and you might resolve the situation by adding a multivitamin and some B complex.
Hi Doctor, I had the TKA King James B1 test yrs ago. It did show I have a problem. Was taking B1 (painful) which did help. Stopped the shots last yr, going downhill. What would be the best oral B1..cream didn’t work. Can B1 shots be don’t subQ or has bpro be in muscle? Thanks so much for he help…..dealing w MS.
I am afraid that this gets more confusing. Transketolase activity (TKA) represents the baseline activity of the enzyme that is being tested. With moderate thiamine deficiency this part of the test can be completely normal. It only becomes abnormal because of either genetic influence or because of prolonged and severe deficiency. In the second part of the test the activity of the enzyme is repeated after thiamine pyrophosphate is added to the reaction. Known as the thiamine pyrophosphate effect (TPPE), if the activity of the enzyme (TKA)is increased over baseline activity it is reported as “percentage increase or acceleration over baseline activity”. What this means is that if the original baseline activity is accelerated (even though baseline TKA is in the normal range) because of the addition of thiamine pyrophosphate, it indicates that the enzyme was not fully saturated with thiamine, thus indicating thiamine deficiency. Although I have read in the medical literature that TKA is the only worthwhile test, and that TPPE is nonspecific I totally disagree. My own hard-won experience over many years has shown that the TPPE does indicate thiamine deficiency and I have seen people improve by thiamine supplementation. When this happens, the TPPE will decrease and often will fall to zero indicating that the enzyme is fully saturated with thiamine.
I don’t think there is a way to test this anymore. How would you supplement if you had this problem? What protocol would you use on yourself? B-complex? Thiamine shots and what type? Thiamine IVs? Allithiamine? Benfotiamine? Use ALL of the above? Does one start low and work up if they are already sick? How does one get thiamine into the cells? Would you be willing to contact me?
Thank you,
Cathy
The questions and comments keep piling up from desperate people. Here are answers to the majority of questions:
1. Red blood cell transketolase
Transketolase is an enzyme whose activity is essential to energy metabolism and it depends on the presence of thiamine and magnesium. The first part of the test is measuring its activity and this is referred to as transketolase activity (TKA). This baseline activity can still be normal when there is thiamine or magnesium deficiency. When the test is done it can be adapted to either thiamine or magnesium so it can be used to define deficiency of either. It is used however, exclusively for measuring thiamine deficiency. If this baseline activity is low, it indicates either a very severe deficiency or a genetically determined reason for the low activity.
The second part of the test is adding thiamine to the reaction and measuring the activity of the enzyme again. If the activity increases, it demonstrates that the enzyme needed the thiamine in order to reach its maximum activity and demonstrates clearly that the enzyme was not saturated with the needed cofactor. This is referred to as the thiamine pyrophosphate effect (TPPE). From analysis of this test on people considered to be healthy the allowable acceleration is from 0 to 18% increase over baseline. However, the absolutely normal test would be zero acceleration because it means that the enzyme is fully saturated. As the TPPE increases it represents a gradually increasing severity in deficiency. The higher the TPPE the greater the deficiency.
2. Can you take thiamine without this test?
Yes you can, particularly if you have been diagnosed with a form of dysautonomia known as postural orthostatic tachycardia syndrome (POTS).We have found that this disease, occurring after administration of Gardasil, is masking (in those cases in which the transketolase test indicated thiamine deficiency)as the thiamine deficiency disease known as beriberi. To use thiamine supplementation is safe but IT IS STILL GUESSWORK without proof!
Yes. I will send it to you. I am sorry I did not get an email reply from you and just now saw this. Please, when you read the description, let me know if it’s the right test. I am very sick. What concerns me is they do not report the results in percentages but in a range. Really hoping it is the right test.
Dr. Lonsdale; I bought two of your books and have been all over the internet looking for a protocol for taking thiamine and which form to use. Can you please explain how you would use thiamine if you needed it? My docotr is willing to do Myer’s IVs and hers has about 150mgs of thiamine but only once a week. I bought the Allithiamine but am not sure how to use it. What about the shots? How much in a shot would you use, how often, in what form? Is it safe in shots? My docotr offered shots also. Would you combine IVs, shots and Allithiamine? Which is best for vision problems? Hope I am not overlwhelming you. I have posted the test description below. Thank you, Cathy
Hello Dr. Lonsdale: I have submitted the description of the test for the lab I found and then, below that, what they require. Does this sound like the right test?
Hi Cathy,
I’d like to connect here or via email to see what kind of test you are referring to. I have found a few and would like to compare notes.
Carissa
I have been trying for a few days to find a lab that tests RBC transketolase and I think I found one. Trace Minerals Int’l Laboratory in Boulder, CO. They said they test it and when I questioned further if it was the RBC transketolase and not whole blood thiamine they sent a description of the test which looked correct but is very technical and I’m not sure. Can I forward their email to you Dr. Lonsdale so you can confirm if this is the correct test? I am very sick and need this test as do many others. Thank you.
Would you also forward it to us at Hormones Matter? If this lab has the correct test, we would like to be able to refer others there. You can use the contact form in this link: http://www.hormonesmatter.com/write-for-hormones-matter/ or if they have a website with a description of the test, please post it here. Thank you.
seems i replied in the wrong space. see above under dr. lonsdale.
Here is what I got from that lab:
Transketolase connects the pentose pathway to glycolosis, feeding excess sugar phosphates into the main carbohydrate metabolic pathways. Its presence is necessary for the production of NADPH, especially in tissues actively engage in biosyntheses, such as fatty acid synthesis by the liver and mammary glands, and for steroid synthesis by the liver and adrenal glands. Thiamine diphosphate is an essential cofactor, along with calcium. Transketolase is abundantly expressed in the mammalian cornea by stromal kerotocytes and epithelial cells and is reputed to be one of the corneal crystallins.
Transketolase activity is decreased in deficiency of thiamine, which in general is due to malnutrition. Two diseases are associated with thiamine deficiency: Beriberi and Wernicke-Korsacoff syndrome. While no mutations could be demonstrated, thee is an indication that thiamine deficiency leads to Werncike-Korsakoff syndrome only in those whose transketolase has a reduced affinity for thiamine. In this way, the activity of transketolase is greatly hindered and as a consequence, the entire pentose phosphate pathway is inhibited.
The enzyme assay is useful as a diagnostic tool in heart disease and a variety of nutritional disorders. Erythrocyte transketolase activity (ETK) us reduced in deficiency of thiamine (vitamin B1), may be used in the diagnosis of Wernicke’s encephalopathy and other B1-deficiency syndromes if the diagnosis is in doubt.
Furthermore basal ETK is a more accurate biochemical marker of infantile beriberi than the activation coefficient of the disease. Raised plasma troponin T may be additional useful indicator of infantile beriberi in infants at risk and in the absense of other evident causes.
As method we use photometry.
More information:
The test is $25
2.7ml EDTA blood
not frozen but cooled in a cold box (40 degrees)
Is the description and the sample correct for RBC transketolase?
More info that I received today:
reference range 42.0-69.0 U/L
60.0-85.0 U/L
I don’t know why they have 2 refence ranges??? And isn’t this supposed to be reported in percentages?
Hey Cathy. Did you ever find out if they did this test?
It’s me, Cathy, again.
Can one treat themselves for thiamine deficiency without “proof” except based on symptoms? Can you overdose on thiamine? Is it good to do Allithiamine, benfotiamine, and regular thiamine all at once? Plus IVs two times a week? How much thiamine in the bag? With the other Myers stuff too? I have to do something.
Can someone please help me? I am 62 years old and periodically, over the years, I have gotten sick and after taking supplements somehow come out of it. Now that I am older it is much more difficult and I believe I have a problem with B vitamins. In 2009 I had some weird symptoms that started out as numbness and tingling in my lips and fingers, intermittently, and then in my toes and feet. Then, my legs gave out once while walking and I ended up in wheelchair, vision problems, ears ringing, sensitive blood sugar where I had to wake up and eat at night (all progressed over months) severe anxiety and depression. We did a lot of therapies just to try something: Myers IVs, taking lots of supplements (including 4 B complex per day) lots of magnesium, thyroid meds, neurofeedback B12/folate shots and I came out of it but never knew what worked. Within a few months, feeling better, I stopped everything and resumed sugar. Then, slowly, in 2012 I started having problems walking, very slightly and it has progressed to I am in a wheelchair again, vision problems, severe anxiety, depression, now my ears are ringing, weakness, insomnia. I feel tortured. I never thought this would happen again. After much research I think I have thiamine deficiency. Maybe the IVs/supps helped reverse it but it never really was completely taken care of before I went off of supps and started with the darn sugar again. I am so desperate and don’t want to live like this. Does this sound like low thiamine to anyone else? In reading the older posts it seems no lab does the correct test. Has this changed? I did do some Ivs again but only 50mgs of thiamine once or twice a week. Maybe this wasn’t enough? I feel I am slipping sway. I don’t know what to do. I would happily pay for a consult with Dr. Lonsdale on what I should do. Please help me. Please.
Cathy,
I have had many of your same symptoms – though never to the extreme of being in a wheelchair. I pressed my doctor to order certain tests because I was certain something more was going on than anxiety, depression, etc. All of the regular annual exam lab work was performed. My doctor even ordered a brain MRI because many of my symptoms had the same “common denominator” – brain function, neurology, etc. (I will note that the brain MRI was THE WORST experience I have ever had. I will never, ever have another MRI. Anyone who says there are no side effects and that it is “harmless” has apparently never had a brain scan.) The results, of course, of the MRI were “normal.”
B12 and B1 came back “normal”, but my vitamin D was very low. Still, I was convinced that more was going on, even though I was in agreement that my vitamin D level would cause many of my symptoms. I was prescribed 50,000 IU vitamin D3 once weekly for 13 weeks.
As a side comment, I will add a note that I had an extreme adverse reaction to this supplement, which sent me to the ER. The morning after the first night I took this, I felt a wave going up to my brain and it felt like my brain “swelled” for a few seconds (I described it in the ER as it feeling like a mini-stroke – which I have never had but it’s what I imagined one to feel like – after which I experienced extreme lightheadedness and dizziness, inability to focus or concentrate, racing heart, excessive perspiration. As it turns out, almost all vitamin D3 supplements are made from lanolin, which comes from sheep glands. I am allergic to wool. No one – not my doctor or anyone in the ER – knew this or gave any indication that there was a connection to vitamin D with my reaction, even though I suggested it more than once. It was the only thing I had done differently, yet not one person gave it a consideration. It wasn’t until I went home afterwards and looked up the ingredients that I found out that vitamin d3 supplements are almost *always* from lanolin! A typical supplement for a woman my age is 600 iu… so 50,000 iu was an extreme amount for someone with an allergy to lanolin to take!
Back to other tests… My doctor finally relented when I pressed her to order a ferritin test. Ferritin is the storage of iron in your body. It came back also very low, even though my CBC had been “normal.” (For reference, my level is a 10. For my age, the ideal level is about 50! At the very least, it should be 20, but preferably closer to 40 or 50.)
I put “normal” above in quotes because it is important to understand the difference between normal, typical, and ideal. Labs provide a range for test results, but that doesn’t necessarily mean that your results are “normal” and it certainly doesn’t always mean your results are IDEAL.
I urge you to do plenty of research on deficiencies of vitamin D (which is actually a hormone, not a vitamin) and iron (ferritin), and also thyroid issues. Similar to a CBC not always uncovering an iron deficiency, a TSH does not give the whole story about thyroid issues. You might ask for a full thyroid panel, which is much more detailed.
It is important to note that vitamin K (preferrably K2 in the form of MK7 – read about that also) should be taken with vitamin d3 in order for your body to absorb it better. Also, vitamin C should be taken when you consume iron (if you are deficient) to best absorb it.
You might also read about the potential connection between vitamin D deficiency and MS and other auto-immune disorders. (I have fibromyalgia and one of the reasons my doctor ordered a brain MRI was to rule out MS or brain tumors. Also, read about the connection between iron and vitamin D deficiencies, as well as B12.
I’m providing links below for several places I read about a lot of health concerns, nutrition, etc. because I do not always (or even usually) agree with western medicine approaches. Dig a little deeper and be your own advocate. Your body will give you an idea of what your problems (deficiencies) are. I would also encourage you to avoid sugar since you know from your own experiences that it triggers a relapse. You might want to consider the anti-inflammatory diet on Dr. Andrew Weil’s website. I felt amazing – and I do mean amazing – after following it just for 30 days! And if you drink pop – regular or diet – STOP.
Very best wishes to you. I hope something helps you and that you identify the underlying cause of your health issues!
Kim
http://articles.mercola.com/sites/articles/archive/2009/07/14/little-known-secrets-about-optimal-iron-levels.aspx
http://articles.mercola.com/sites/articles/archive/2014/05/28/vitamin-d-deficiency-signs-symptoms.aspx
http://www.drweil.com/drw/u/PAG00361/anti-inflammatory-food-pyramid.html#_ga=1.214162071.1094172659.1457721049
http://www.healthline.com/health/ferritin#Purpose3
http://drhedberg.com/the-ferritin-test/
http://hypothyroidmom.com/
http://hypothyroidmom.com/300-hypothyroidism-symptoms-yes-really/
http://hypothyroidmom.com/top-5-reasons-doctors-fail-to-diagnose-hypothyroidism/
http://www.drweil.com/drw/u/QAA400683/Vitamin-D-Deficient.html
http://wellnessmama.com/15/harmful-effects-of-sugar/
Let me first of all comment on the post from Cathy. At the age of 62 years she has had repeated illnesses in which she suspects “that I have problems with B vitamins “. She mentions a “sensitive blood sugar” involving night eating and has experienced what she calls “anxiety and depression”. The thing that I find so depressing is that she “resumed sugar”, even though she suspected some kind of connection. Let me be clear about thiamine deficiency in a case like this. We have known since 1936 that sugar will induce thiamine deficiency and that taking sugar in the way we take it in America is producing a vast amount of illness. Unfortunately, because of the crass ignorance in the medical profession the symptoms that are generated are referred to as psychosomatic. The reason for this is that the laboratory studies, including thiamine concentration, in the blood are all normal. The idea of nutritional disease is so foreign in America that the proper lab studies to define it are not even being thought of. The trouble with this is that the symptoms are so easily reversible if they are recognized when they first occur. If the malnutrition continues to exist, the symptoms will increase in intensity and eventually will become irreversible. If we take the model of the vitamin B1 deficiency disease known as beriberi, we have known for years that it takes huge doses of thiamine to relieve symptoms. To continue to take sugar under these circumstances is obviously absurd. However, self-discipline is also a function of the brain and thiamine deficiency will affect that. Cathy should do two things: 1. Absolutely no sugar of any form whatsoever, 2. Insist from her doctor that she has severe thiamine deficiency and requires large doses of thiamine and magnesium. The reason for magnesium is that it works with thiamine.
Now let me comment on the post from Kim who records similar symptoms. Concentrations of B12 and B1 were described as normal and this is not the way to depict vitamin deficiency anyway because they can be perfectly normal in the presence of deficiency. The vitamin D was an exception. Another important bit of information was the low ferritin. This would affect mitochondrial function as well as affecting hemoglobin content and iron is an obvious nutrient. I have long been concerned over the relationship between thyroid and thiamine deficiency and what on earth is “an anti-inflammatory diet”? The only natural substance that I know of that we take as a regular part of diet is, of all things, sugar!!
Fuel plus oxygen plus catalyst equals energy
Gasoline plus oxygen plus spark plug equals energy
The principles are the same but the details are widely different. Thiamine is just like a spark plug and when it is deficient, oxygen cannot be used to create energy. The cells where this takes place die. The word hypoxia is used in medicine to describe lack of oxygen to the tissues, particularly the brain. For this reason thiamine deficiency is sometimes referred to as pseudo-hypoxia (false lack of oxygen).
Glucose is the fuel that the brain uses and it is difficult for most people to understand that sugar is dangerous. This is basically because the absorption of natural sugar, obtained strictly from fruit and vegetables, goes through an extremely complex process before glucose is derived from the sugar. Unfortunately the food industry is our enemy, it only wants our money and sweet, sweeter, sweetest sells.
Is Cathy b6 toxic?
Yes sounds like b6 toxicity cathy! I have had that and had all her same symptoms and the neuropathy us heck. I’m still trying to heal.
Is there any way to get in direct contact with Dr Lonsdale? My son has episodes of very odd behaviour linked to smelly urine and now has episodes of gulping for breath with blue lips which leads to pressured speech and what looks to us like brain inflammation.
We had the erythrocytes test done at Biolabs some years ago and it was borderline.
I have an enlarged heart and atrial fibrillation and worked out for myself that it was thiamine deficiency, and take benfotiamine and mag and other supplements. I am sure this has saved my life.
However, all attemps to get the NHS to look at me and my son to see iii there is a link are meeting with brick walls.
Can you recommend a course of action?
My son is 53 and has been diagnosed with Asperger’s although others think he has mito dysfunction, the NHS will not accept this or refer him to its expert centre,
He cannot tolerate fish oils without carnitine and does not tolerate glutathione or NAC.
He does very well on thiamine and it seems to be able to stop the panting. Mag. And MCT seem to have an effect.
He reads these comments, but just to be sure I will forward your question to him.
I contacted Christine and have received a reply which gives more details than this post. It is an extremely fascinating and interesting example of how wrong the present medical model is. The story in this man actually begins at birth and for 50 years his mother and he have struggled with the situation that seems to have generated an idea that his “psychology” was in some way inventing his symptoms. It is generally misunderstood that vomiting in the newborn of this nature often means that there is dysfunction in the part of the brain known as the brainstem, the part of the brain that connects with the spinal cord. So infancy vomiting is the first clue since a deficiency of thiamine would provoke it. Many clues followed through the intermittent illnesses that have cursed him with a diagnosis of psychosomatic disease. I asked Christine to try to describe the odor of the urine in her son and she had already jumped to the conclusion that this was the characteristic odor of maple syrup urine disease (MSUD), known to be due to a defect in an enzyme that requires thiamine. She reported that this disease had been looked for and the tests were negative. Although the disease had been thought to be purely genetically determined, it has also been described as thiamine dependent and intermittent, meaning that episodes of brain illness recur under the stress of a simple infection like a cold, mild head injury or even an inoculation. The patient may be normal or very near normal in between episodes of brain illness, each resulting in peculiar and abnormal behavior that may vary in detail. An episode of illness can occur spontaneously from an unknown stress factor or even from simple exposure to sunlight. The next major clue is a report that Christine would not have dreamed of being so important. She told me that her son had an organism in the bowel called Clostridium “200 times the normal concentration”. Certain members of this bacterial species are capable of producing an enzyme called thiaminase 1 (EC2.5.1.2). This enzyme, produced by the organism in the bowel, splits the dietary obtained thiamine molecule, rendering it biologically useless. Thiaminase disease has been described in Japan as a cause of thiamine deficiency. It has also recently been found that thiamine dependent disease can occur because of things called SNPs in a protein that is responsible for creating a transporter system in the body that enables thiamine to enter the cell. This would create what might be called genetic risk, rather than a genetically determined disease, if SNPs are present.
Conclusion: Christine has thiamine dependent heart disease that she was smart enough to spot by herself. Her son has thiamine dependent brain disease. There is enough information to suggest that her son inherited a genetic risk factor that makes the absorption of thiamine more difficult such as SNPs. You add to that the Clostridium in the bowel may be a thiaminase I producer that would also add to the sum of risk factors. This should give rise to other questions on this website because the idea looks so “out-of-the-box” that the analysis of this disease might be subject to doubt if not scorn.
Wow. Just wow. Thank you Dr. Lonsdale.
Christine, this is fascinating. Would you be willing to write up your health story and your son’s health story for a post? I think it will help so many others. You can reach me via: http://www.hormonesmatter.com/write-for-hormones-matter/
Unfortunately Bio Lab in London and Cleveland Clinic do not do the second part of the lab test that specifically addresses the thiamin deficiency issue. The first part of the test involves the baseline activity of an enzyme in red blood cells that depends on thiamin. This activity only declines with serious and prolonged deficiency and is frequently normal when the second part of the test clearly shows deficiency.
OK….facinating reading. My otherwise healthy and very active daughter received her third Gardasil shot during her freshman year of high school. Her health declined precipitously and she was diagnosed with Graves Disease (Hyperactive thyroidism) about 3 months following the shot and she developed a condition where she would faint whenever she laughed. This was diagnosed as cataplexy only after we put her symptoms together and told the doctors what she had. This was after mopnths of numersou doctors who could’t figure iot out. so, following a comprehensive sleep study she’s diagnosed with severe narcolepsy and extreme cataplexy. Her short term memory is severly affected as well. How do I get a TKA test? And once I do, what’s the best treatment? I have her now seeing a NRT Chiropractor who has increased her energy level with diet modification and suplements. I really beleive the Thiamin is the key.
Unfortunately, this is yet another example of my belief that the present medical model is catastrophically wrong.There are a number of posts on this website that indicate that Gardasil is a very dangerous vaccine, but only under certain circumstances. All the young women that have been reported to me with illness following the vaccine were all excellent athletes and students. This strongly suggests that their genomic characteristics code for a high rate of brain activity, commonly described as a high IQ. It is common sense to assume that they are at risk because they require a pristine diet in much the same way as a high powered engine in a car requires superior gasoline. Several of the girls that have come to my notice have been found to have SNP’s in their genome that provides them with a genetically determined risk. SNP’s are minor changes in the DNA sequence and do not by themselves produce disease. The vaccine appears to be a stress factor on top of these independent associations and probably explains the relatively small number of individuals affected by the vaccine. I have come to the conclusion that these affected individuals have been consuming a diet with too many empty calories, particularly those from simple carbohydrate. That is why thiamine deficiency, asymptomatic or inconsequential before vaccination, is precipitated and causes devastating disease.
I’m very interested in the transketolase test. Where can we go to have this test done? Over a year ago, my eighteen year old son, had two injections of Gardisil. Before the 2nd injection he was the top long distance cross country runner of his high school, top ten honor student.Unfortunately, 15 days after that 2nd injection he couldn’t run due to dizziness, muscle weakness, and nearly blacking out. He started failing school due to extreme fatigue, brain fog,and sleep spells(Neurologist diagnosed him with Idiopathic Hypersomnia). I’m really concerned about a possible Thiamine deficiency and POTS as explained in the articles. Where can we get the transketolase test done? We are desperate for help as the doctors here aren’t helping they just keep putting him on amphetamines and antidepressants. Please let us know. Thank You!
Well said.
Hello I’m trying to reach Dr. Lonsdale. My son Solomon Cotton was a Patient of yours. I need your help to find another lab where he can have his testing done in regards of transketolase levels and where can I find the authia cream you prescribe to Solomon. Solomon needs your help Dr. Lonsdale!
Hi, anyone know of any other labs in america that does this test. It is urgent as my family and i want to address my problems and symptoms as soon as possible. It has been 4 years since my gardasil vaccine.thank you
Unfortunately, the only lab in the US shut down recently. We have tried to cultivate other resources, but so far no luck. There is a lab in London called BioLabs that has version of the test, which may be an option for you. If you read Gabriella Chow’s story, she was faced with the same difficulty finding a lab in AUS. She ultimately, worked with a physician to begin treating the thiamine deficiency without the testing – because she couldn’t get tested. Be advised though, if you choose this route, you should do so under the care of a physician, as there are paradoxical reactions and dosage issues that must be worked out and can be dangerous if not monitored appropriately.
I have just received an e-mail that states that King James Lab (1-888-WSTLAKE) is resuming the transketolase test.
I want to make a comment on the use of transketolase in defining thiamine deficiency. The Mayo Clinic has indicated that this is a non specific test and that blood thiamin is the way to go. Unfortunately, this is nonsense. You can have a normal thiamine level in the blood and still be deficient. Measuring the activity of the transketolase enzyme in red blood cells before and after the addition of thiamin pyrophosphate, it’s biologically active form, gives a perfect method of identifying thiamin deficiency. Unfortunately, because nutritional deficiency is considered to be only of historical interest, that test is insufficiently known and has been confined to the activity of only one lab in the United States. This lab is in the process of reorganizing and the test should be available later. I have done this test thousands of times and I know very well that vitamin B1 deficiency is extremely widespread in this country. The major culprit is the enormous amount of sugar that is ingested by literally millions of people. An excess of sugar overloads the capacity of vitamin B1 to process it. It is as simple as that.
King James has stopped offering the test. Does anyone know any other place to get it?
Peggy,
A regular plasma thiaimine test will not show thiaimine deficiency. My daughter’s plasma thiamine test actually said her thaimine was normal but when we ran a Transketolase test it indicated she was severely thiaimine deficient. You can get the Transketolase test done thru King James Labs in Westlake, Ohio. Treating my daughter’s thiamine deficiency has made a big difference in her health.
There is only one lab that does transketolase. Have your doctor call 1-888-WSTLAKE for instructions on how to send the blood
My daughter had blood work done for what I thought we asked for was them to check to see if her Thiamine was low due to all the issues she is having. She asked for her transketolase be checked and they said they couldn’t do that and the are doing B1 testing only and said that is the back door way. Does that make any sense to anyone, as it does not to me. This has been going on for 8 months and every test possible and still no answers. I hate levaquin….
Her story can be read here: http://www.hormonesmatter.com/levaquin-temporal-lobe-symptoms/
Dr. Driscoll, your mention of “genetic disorders of clotting” makes me wonder if my inherited low platelet count has anything to do with my adverse reaction to Cipro (a fluoroquinolone antibiotic). As Dr. Marrs pointed out in an earlier article on HM, there are an awful lot of similarities between those suffering from an adverse reaction to fluoroquinolones and those suffering from an adverse reaction to Gardasil, Lupron, etc. If anyone has any thoughts on this potential connection, I’d love to hear them. Also something to note, Anemia was one of my many symptoms of Fluoroquinolone Toxicity.
How does this effect someone with Dihydropyrimidine dehydrogenase deficiency? Which is an is an autosomal recessive[1] metabolic disorder in which there is absent or significantly decreased activity of dihydropyrimidine dehydrogenase, an enzyme involved in the metabolism of uracil and thymine.
As far as I know, there is only one lab that does TKA and that is assessable by calling 1-888-WSTLAKE for instructions on mailing. For interpretation look up one of my articles recorded in Pub Med
Oh, I found it! The King James Medical Lab… Thank you for providing this information. May I add one other thought? I see that this vaccination can cause blood clots. A clot in the transverse sinus (most common location, I believe) or nearby sinuses, can be a cause of neurocardiogenic syncope — often confused with POTS (which is often confused with dysautonomia). My son experienced this, but it was missed by dozens of doctors. I wonder if a screening for genetic disorders of clotting may be in order if the patient presents with fainting (as opposed to dysautonomia — which affects the function of numerous organs)? I believe the distinction between “POTS”, “dysautonomia” and “cardioneurogenic syncope” is crucial in these cases.
Diana,
That is fascinating. Would you be interested in writing a post for us on clots in the transverse sinus – clotting disorders- neurocardiogenic syncope? I think we may have some cases of that, undiagnosed. The information would be most useful to our readers.
It doesn’t look like Quest Diagnostics or LabCorp offer this test. Does anyone know of a lab that can perform this test? Thank you!