I recently received notification concerning a “review” posted on HerbCustomer, a commercial website that has been active since February 26, 2010. This so-called “review” was posted on January 16, 2018 by iHerbCustomer entitled “Dangerous allithiamine derivative with no thiamine activity”. The email was posted as well. This person made a potentially libelous statement by referring to me as lying about this thiamine derivative. Its commercial name is Lipothiamine. Its chemical name is thiamine tetrahydrofurfuryl disulfide (TTFD) and this post is to refute the accusations that are made public by this individual.
History of Thiamine Research
Thiamine is the chemical name for vitamin B1 and its deficiency in the diet has long been known as the cause of beriberi. This disease has been known for thousands of years but its underlying cause was only discovered in the closing years of the 19th century. Since beriberi was commonest in the rice consuming cultures, it is not surprising that the major research came from Japan. In the middle of the last century a group of university-based scientists was convened and they wrote a book (Review of the Japanese Literature on Beriberi and Thiamine). This was translated into English, ostensibly because these scientists wished to let people in the West know and understand the pernicious nature of disease resulting from thiamine deficiency. I was fortunate enough to receive a copy of this book from one of the scientists involved. The information in this post is derived from it. Because they were scientists and were well aware of the clinical effects of beriberi, their studies were very extensive. They knew that thiamine existed in garlic and much of their experimentation focused on studies of the garlic bulb. They discovered that there was a natural mechanism in garlic that created a derivative of thiamine and called it allithiamine. Note that this is a naturally occurring substance and the term should be entirely restricted to it.
On a number of occasions I have seen thiamine derivatives being called “The alithiamines” and one commercial product is called Allithiamine with a capital a. The name was given to this naturally occurring product because garlic is a member of the allium species of plants. It can be found in other members of the allium species. Because the Japanese scientists already knew a great deal about the clinical expressions caused by thiamine deficiency, they originally thought that this new derivative might have lost its vitamin dependent activity. They went on to test it in animal studies and found that it had a much greater biologic effect than the original thiamine from which it was derived. They found that it was extremely important that allithiamine was a thiamine disulfide derivative (disulfides are important in human physiology) and they synthesized many different types of thiamine disulfide as well as many non-disulfide derivatives, carefully testing each one for their biologic activity.
What is TTFD?
Without going into the biochemical details, what we now know is that thiamine tetrahydrofurfuryl disulfide (TTFD, Lipothiamine) is, for a number of reasons, the best of the bunch of synthetically produced derivatives and has exciting possibilities in therapy. For example, it has been shown from animal studies that Benfotiamine, a non-disulfide derivative, does not get into the brain whereas TTFD enables absorption of thiamine into the brain where it stimulates energy synthesis. When we take in thiamine, occurring only in our naturally formed food, it is biologically inert. It has to be “activated” within the body that possesses genetically determined mechanisms for its absorption and activation. To cut a technically difficult explanation, let me state that TTFD bypasses this process. It enables thiamine to split away from its disulfide attachment and enter the cells where its activity is required. The concentration achieved in the target cells is much greater than that achieved by the administration of the thiamine from which it was derived.
The Japanese scientists studied the effect of cyanide in mice and found that thiamine propyl disulfide (TPD), a forerunner of TTFD, gave significant protection from the lethal effect of this poison, an incredible discovery that alone should raise eyebrows. They studied this effect and were able to show its mechanism. They also found that it would protect animals from the effect of carbon tetrachloride, a poison that affects the liver. It is using its vitamin actions in a therapeutic manner.
Being myself a consultant pediatrician in a prestigious medical institution, I was able to obtain an independent investigator license (IND) from the Federal Drug Administration, and obtained TTFD from Takeda Chemical Industries in Osaka, Japan, the makers of this product. TTFD is a prescription item in Japan, sold under the commercial name of Alinamin. I have read several publications, showing that it reverses fatigue in both animal and human studies. I was able to study the value of this incredible substance in literally hundreds, if not thousands of patients. Far from being toxic, as this person claims, I never saw a single item that suggested toxicity. Its therapeutic potential is largely untapped in America. This is because the current medical model does not recognize that defective energy metabolism, genetic errors and the nature of stress are the interrelated components whose variable effects in combination are the cause of disease. Do not mistake the use of the word stress, a word that is so commonly used inappropriately. An infection and any form of physical or mental trauma represent a form of stress. It is the ability or the inability to meet the required energy demand to resist that stress that matters in the preservation of health.
Clinical Benefits of TTFD
It is important to understand that the beneficial activity of TTFD is exactly the same as the thiamine from which it is derived. It is the mechanism of its introduction to cells, particularly those in the brain, that enable it to have such an effect on energy metabolism. Because of its strategic position in the cell, thiamine is of vast importance in oxidative metabolism in the complex mechanisms of energy production. There are at least two methods by which thiamine deficiency can be induced. The commonest one is an excess of sugar and fat that overwhelms the capacity of thiamine to conduct the mechanisms involved in energy synthesis. The discovery that thiamine has a part to play in fat metabolism is quite recent. The other one is because of genetic errors involving its biochemical action. However, we now know from a relatively new science called epigenetics that some mistakes in DNA can be overcome by the use of an appropriate nutritional substance like thiamine. The completely non-toxic use of TTFD depends merely on its ability to introduce thiamine into the cells of the body that require its magic. Under these circumstances, the big doses of thiamine are acting like a pharmaceutical by stimulating the missing action. We are not dealing with simple vitamin replacement. This should represent a new era in medicine when nutrient biochemistry takes its place in patient care.
Conclusion
The person that wrote this criticism fails to understand that TTFD and other thiamine derivatives represent a new basic principle of therapy. It recognizes that healing is a function of the body, not the activity of a so-called “healer”. All it requires is the foundation substances needed for repair and sufficient energy to use them. It demands a dramatic change in thinking about health and disease. If you understand the principles involved, it forces the conclusion that the word “cure” is a pipe dream. The only form of pharmaceutical drug that matters is one that safely kills an attacking microbe. Almost all the rest of them merely relieve symptoms and have no effect on the ultimate outcome.
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Hi Dr Marrs, i am suffering from classic dry beriberi symptoms. I have severe shooting burning nerve pain in limbs and tingling paresthesia all over body. My symptoms gets worse after eating food specially carbohydrates. All of my symptoms started 3 months ago and i am taking benfotiamine since 1 month which significantly improved my nerve pain. I am from India and TTFD is not available here. Please help me as i have consulted several neurologists and general physicians but they are unaware of my condition and they don’t believe that i have beriberi. I am 35 years old and I feel that i am dying everyday and sometimes lose hope that i will ever recover again. Please help me, i tried to contact you multiple times but no luck. You are the only one who can help me to recover from my condition
Hello, it is confusing to me because there are research papers where benfotiamine does not achieve concentration in the brain and others where it is concentrated and has a therapeutic effect, such as the recent work by Gary E. Gibson (Benfotiamine and Cognitive Decline in Alzheimer’s Disease:
Results of a Randomized Placebo-Controlled Phase IIa Clinical
trial); instead the following work by Marie-Laure Volvertt (Benfotiamine, a synthetic S-acyl thiamine derivative, has different
mechanisms of action and a different pharmacological profile than
lipid-soluble thiamine disulfide derivatives), negates detectable concentrations of benfotiamine in the brain. Could explain? Thank you so much
Hi, does anyone know how on earth you can get a child to take Allithiamine who cannot swallow capsules/tabs. The powder is just vile and cannot be hidden in any foods, especially not with a child who has ASD.
I brought the Allithiamine cream to try instead but it is equally problematic, having to keep it outside in garage inside two sealed bags and the whole garage still stinks of the stuff. Cannot use it on weekdays when they are at school and can only use at weekends if they are not going out but then the whole house smells repulsive.
I understand that benfotiamine does not taste as bad, can be disguised in other foods and can be used with children. It is not the same formulation but seems to work quite well. There are some chewable and sublingual forms of thiamine hcl and mononitrate on Amazon that may work as well.
I am suffering from classic symptoms of dry beriberi with body wide tingling paresthesia and shooting burning nerve pain in the limbs. My symptoms gets worse after eating carbohydrates rich meals. I am taking benfotiamine which has significantly relieved my symptoms but all those symptoms are still present although with somewhat lesser intensity. It has been 1 month since taking benfotiamine and my symptoms are since 3 months. I have consulted multiple neurologists and general physicians, but seems they don’t know anything about its treatment and management. Even they don’t recognise my problem is from b1 deficiency. What should i do please help me, seems like i am dying everyday. I am only 35 years old and i had ibs d problem since 2 years, seems that contributed to thiamine deficiency. I am from India and here TTFD is not available.
Firstly, reduce your carbohydrate intake. Second, make sure you are getting the other nutrients, the other B vitamins, and sufficient minerals, especially magnesium. You can track your food intake on the free app called Cronometer, if it is available there and the app will calculate your nutrient intake. That way you can adjust accordingly. Other nutrient deficiencies commonly occur with thiamine deficiency. If Benfotiamine is helping, keep taking it. It is possible you need a higher dose, some people do. It is also likely though, that healing the damage done from lack of thiamine will take time to unwind. Recovery from chronic TD can takes months to a year. It is gradual.
Thankyou so much Dr Marrs for guiding me. You are the only one who knows so much about this dry beriberi condition. I am from India and i have consulted more than 10 neurologists but all of them didn’t even know little about this condition, i was very hopeless. Is worsening of nerve symptoms after eating carbohydrates a significant diagnostic clue for thiamine deficiency. Does this improve gradually or i will be intolerant for rest of my life.
It is a clue and it should improve over time, but you may need to cut back on carbs for a while. Alternatively, if you were to take some additional thiamine and magnesium with the meal, perhaps that might help. I do not know, but it may be worth a try.
Thank you so much Dr Marrs, now i will add magnesium and thiamine with meal also. I have already reduced the carbs intake since a month. Hope everything improves by the time. 🙏
Hi Dr Marrs, since past 1 week new symptoms started appearing in my dry beriberi condition. I have severe body wide muscle cramps and i feel severe anxiety, altered mental state approx 1 to 2 hours after taking carbs. This symptom is so debilitating that i started having fear to carbs. What should i do and what does this indicates, please help me i am in serious trouble. 🙏
Without your full case story, it is difficult to know. It could be that you need more thiamine, additional vitamin/mineral cofactors, more phosphate or fewer carbs. The cramps could be related to low calcium. The anxiety may also be related to that. With the time delay relative to the carbs, you could have rebound low blood sugar as well.
Please Dr. Marrs, give me little of your time, it could save my life. As no doctors here able to help me and i am slowly dying everyday. I have all the blood reports and i can share you and tell you about my case history. My email id is suryavanshi216@gmail.com. Whatsapp no: +918960497010. I have also sent you request on facebook. Your little time could save my life as I am in very troublesome situation. 🙏
I am not a physician. I am sorry. If you write up your case story/narrative, I can publish it. Perhaps I or others can offer some insight then, but I cannot provide medical advice.
Hello,
Would the coenzymate form (cocarboxylase) be an alternative for TTFD? How does cocarboxylase work as compared to TTFD?
Thank you.
Hello, and thank you Dr Lonsdale for sharing your research.
Can you (or one the knowledgeable readers here) comment on whether taking Thiamine Mononitrate would be worthwhile for someone that can’t readily obtain TTFD?
If so, what is a suggested dose for 75lb 12yo girl that is dealing with SPD / PANDAS?
No. Look up the many posts on Hormones Matter
Hi Dr. Lonsdale,
It’s amazing how generous you are to address everyone’s posts….May you have the strength to continue!
I have been suffering with unexplained shooting pain in my feet. It started when I would just be lying in bed and I would experience excruciating pain. That started subsiding and now I have terrible pain in my feet as I get out of bed and throughout the day. I get pain on the top, side, and bottom of my feet everytime in a different place. I recently read that coffee consumption can make me B1 deficient. Since I drink 5-6 cups a day, do you think the two can be connected? Should I give TTFD a try??
Thank you.
Hi did you try it. I have similar pains and general fatigue. I get poor sleep for complex reasons and found benfotiamine did help but the brand that worked best for me is sold out everywhere. Was thinking of trying ttfd for brain fog as well. Would like to know if you tried the product. And if so which brand?
Thank you foctor for this helpful article. I want to start ttfd protocol to treat korsakoff syndrome. I will start with 50mg ttfd +50mg hcl what should be the co factirs I should add and at which dosage please?
Starting at 50 mg await “paradox (see post)”. Then increase dose slowly, titrating to symptom relief to find the “ideal dose”. Increase beyond the ideal dose will bring back symptoms and the dose should be reduced, not increased
Dear Dr Lonsdale.
Do you have an explanation for this? If I think about it logically:
Say you need 100mg TTFD per day which enables your ANS to function correctly.
If you take more than the necessary 100mg per day, surely the body uses the first 100mg so the ANS works correctly and the health issues are solved. Then any excess TTFD is just treated as ‘too much thiamine’ and the only symptoms would be symptoms of too much thiamine.
I don’t understand how taking say 300mg means the excess 200mg essentially blocks the benefits of the first 100mg.
Thanks
Dear Dr. Marrs and Dr. Lonsdale,
Thank you for bringing health sciences into the 21st century.
I have progressive Spinocerebellar Ataxia which has progressed for the last 4 decades. I have been in a wheelchair for the last 5 years. I also have CHF.
About six years ago I was in the large professional building of my PCP for my physical. At that time when I walked it was very slow using a cane and I would hold onto my wife’s arm as she slowly pulled me forward. Suddenly, my ataxia was completely gone and I walked normal and even pulling my wife. This lasted for about 5 seconds and stunned me and my wife. To me this was a sign that I can beat the ataxia.
I first heard about the neuro benefits in an article by Bill Sardi. I bought some 300mg Benfotiamine and in 3 days the pins and needles in my feet stopped. I also began taking high dose HCL. I understand that Benfotiamine keeps the peripheral nervous system and myelin sheath healthy, while HCL, and now TTFD keeps the more important CNS healthy.
Do you agree that it might be a good idea to take Benfo and TTFD together for a more complete and optimal nervous system and health?
Your research has been a Blessing to us, thank you!
Hi Mrs.Marks. I was wondering if the magnesium, b complex and thiamine made a difference in your sons hypersensitive hearing?
Dear Dr Lonsdale, I just wanted to write and say thankyou for your work.
After reading your articles a couple of years ago, I contacted you, with an enquiry for my son who was having many symptoms including trouble sleeping, was highly emotional, had a constant runny nose and asthma. We started him on a small dose of allithiamine, gradually increasing the amount up to 400mg per day, in divided doses, and he’s experienced a huge difference. His runny nose disappeared, his asthma became only occasional, and easily managed with ventolin, his emotions settled and his sleep, while still not always the best, definitely improved. Over the past few weeks we have been unable to purchase the allithiamine from our regular supplier, and he has really been missing it – all his problems are back – as he said – at least we can now see it’s obvious how much it helps him. Although I had initially hoped to “cure” him of his issues, I’m very grateful to find a supplement that he can take that keeps it all under control. The current lack of it, has magnified it’s benefits that we usually now take for granted. Thankyou again for bringing it to my attention through your work and articles on this site.
Thank you. Please do not be afraid of titrating the dose of Allithiamine to the alleviation of symptoms. It is non toxic.
Dear Dr. Londsale,
I greatly appreciate your great contribution in helping ASD children in their recovery paths. Please, in your experience did you ever see or hear about “major” side effects (such as regression or worsen of the ASD condition) in relation to the use of TTFD Authia cream? Your comment and advices will be much helpful. In advance thanks. Greg.
I never saw the slightest appearance of toxicity. All the autistic children responded in variable degree and it is clearly obvious that ASD is a nutritionally caused disease of which everyone should be ashamed. I saw many children with different projections of emotional disease, all produced by the use of sugar to please the child. It can’t be said too often——–sugar is a “time bomb”. There is much evidence that the taste signal to the “pleasure appreciating zone” in brain causes an imbalance in the chemical balance of brain function. Our social functions are dominated by a “pretty” assortment of “sweets” that would make a better adornment for women’s hats than a food.
Yes and not only nutrional, as my Asperger’s – and lack of b1 – obviously came from pre-natal exposure to lab alcohols (with an S as it was more than just ethanol, it was from chromatography).
Strangely my dad also seem to have had it, so there must be some genetic tendency too… And in link to B1? He passed away last year after 10 years degenerating and so tired.
I had already guessed B1 but was not listened to, and did not know about the right dosage to ramp up. I am testing it for myself now… I take 2 thiamax a day + some benfothiamine I had. It seems enough to be more awake, and I sleep not enough. I am trying to add melatonine…
Hi!
Because this is a lipid-soluble vitamin, is there any chance there will be a toxic buildup in the liver? It seems like you believe there is very low probability, but my doctors are questioning my dosage (along with my suspected diagnosis, given healthy blood tests otherwise). I have POTS, what seems like lactic acid buildup, severe fatigue and muscle weakness, nausea when even relatively hungry, sleep issues, poor appetite, etc. Have had a bad history with sugar, carbs, and more recently this year caffeine. Off all of those now (whole food diet), POTS symptoms and sleep have noticeably improved in the last few days. Been doing 500mg/750mg of benfotiamine on/off for the last 4 days – getting ttfd soon. I’m not sure how to know if I’m supplementing too much or not enough. Some muscles still feel like they burn, but it’s hard to tell if that’s from beriberi or basic use now that I’ve been deconditioned because of this.
24 year old, otherwise healthy male. Used to play sports and lift weights prior to quarantine. 140lbs.
Thank you!
These forms are not fat soluble in the traditional sense. It is a bit of a misnomer. They are formulations that can cross the lipid barriers via some molecular shifting of sorts. Here is a good explainer on the differences between the formulations of thiamine. https://www.youtube.com/watch?v=Fx6MQpOYu44&t=13s
As far as dosage, there are no set optimal dosing protocols that work for everyone. It is a matter of finding what works best for you that includes both dose and formulation. When treating longstanding issues it is not necessarily a matter of treating a deficiency per se, although that certainly is a part of it, but of manipulating often defunct enzymes into action and that is why higher doses are often required. I would urge you to be consistent and track symptoms relative to changes in dose/formulation and diet. Inconsistency and changing things up frequently makes it difficult to determine what is working and what is not. I would also suggest that if you plan to increase or change formulations, you do so gradually, allowing your body to adapt to the new chemistry. It sounds like you are on the right track, however.
Do you have any recommendations for someone who experiences symptoms of high potassium when starting Allithiamine? Is the low and slow approach with Allithiamine the only way to “combat” the symptoms/work through the paradox?
Oddly enough, thiamine deficiency can give rise to a high or a low potassium at different stages of the disease. Paradox is still a mystery. My own observation is that it occurs when long standing deficiency has existed but results in improvement after a variable period of continuance. There is a new post by Overton with a very different explanation, but it does not explain why a variable period of continuance leads to improvement. This question applies to many other questions posted on Hormones Matter. You may find your answer by exploring other posts on this site.
Dear Dr. Lonsdale,
Thank you for this extremely informative post. I developed tinnitus a couple months ago from apparent damage to my ears from years of living in NYC/taking the loud subway, and the sudden intense stress of the pandemic didn’t help. I began b12 supplements which seem to have helped lower the volume of my tinnitus, and have read that Thiamine might help as well. I am a 34 year old woman with no other underlying health conditions that I am aware of, except that I do go through periods of craving pork, which makes me think I am deficient in Thiamine. Should I supplement, and at what dosage?
Thank you,
Steph
I don’t know!
Hi. Why don’t you give the thiamine a try?
It can’t hurt.
So fascinating!
If one has lots of brain stem symptoms and tries 50mg of allithiamine and gets really bad brain sxs – an exacerbation of the problem – what things might you be thinking about?
(NOT looking for personal medical advice. Just thinking generally that actually a big reaction to a small dose might mean that the body really needs it but has to start extra slowly.)
Yes!
Does Thiamine Hcl cross the blood brain barrier?
Th HCL is a thiamine salt. It separates from the HCl and the thiamine crosses the BBB
Dear Dr. Lonsdale,
I am patient with suspect amyotrofic lateral sclerosis (ALS). I have done a lot of medical examination and i found that i am low in B1. I am thinking to try high dose thiamine therapy but i would like to know your opinion…
Which kind of Thiamine and in which dose is best to use? I read also about Dr. Constanti protocol…he used high dose of thiamine HCL…aprox.3grams per day. I went throuh your page and you reccomend Allithiamine/Lipothiamine. I currently use Allithiamine 200mg per day devided in 2 daily doses after breakfast and after lunch for 2 weaks. Should I increase the dosage and what is the maximum I can use? Is the Allithiamine/Lipothiamine dose comparable in miligrams with the same miligrams of thiamine HCL?
I am MTHFR A1298C heterozygot (minor mutation) and I am thinking if my body will be able to transport Thiamine HCL directly to the cells due to the methylation problems.
Thank you very much for you replay.
I suggest Lipothiamine in a dose of as much as 600 mg.
I am interested in your work on hypoxia as a cause of seizures, role of thiamine. My 14 yo son has recurrent myoclonic and tonic/clonic, uncontrolled with numerous medications/combos. He has significant hypoxia during and after the seizure. He’s talking with slurred speech following seizure with Sp02 at 84%. I give him oxygen as soon as I can get it on him. Dr. now talking about vagal stimulator. Tired of seeing my child turn blue and struggle, can you direct me to additional information so I can better understand your theory? Thank you kindly.
Years ago, I was confronted with a 12 year old patient whose medicine had been stopped. He went into the dangerous state of status epilepticus. I had some IV TTFD and I used it on him. He quickly stopped the seizuring and next day he was seizure free receiving TTFD by mouth. There is good evidence that some seizures, if not all, are caused by lack of oxidation in brain. Thiamine is the chemical catalyst that enables oxygen to be consumed in the body, particularly in brain.
Dear Mr Lonsdale,
Thank you kindly for the time you have given to answer these Posts. I have greatly enjoyed reading your articles.
I am a (normally) healthy, athletic male from New Zealand. I have had IBS over the years, & in recent years this has developed, (perhaps in part due to my own efforts to treat), into “SIBO” or a range of other symptoms & maladies such as “histamine intolerance”, various food intolerances, headaches, nausea, fatigue, bloating, weight loss & so on. Traditional medical avenues have not amounted to any resolution. I have recently been reading many studies on the subject & have come to suspect nerve/mitochondria type damage, with the lack of motility causing an ongoing cycle of the above mentioned suffering.
I loved reading your post on this subject.
I have 2 questions 1)Recommended dosage? 2)Dependency – in your experience, would I become dependent, & would TTFD need to be taken for life, or in the right conditions, if the body returns to strong health, could I start to get enough from food?
Asa an aside, have you ever looked into HRW (Hydrogen Rich Water)? Seems to be another therapy easily scoffed at, however the research out of Japan seems quite compelling in terms of the way it potently activates the body’s antioxidant systems…………..
Thank you
Regards
Ephraim
You are NOT healthy with IBS, itself a strong indicator of energy deficit. All the other symptoms are from he same cause. You can take TTFD for ever at a dose that abolishes symptoms. The problem is probably genetic: you consume more energy than you produce. TTFD stimulates energy production epigenetically
Dr. Lonsdale,
Why is there Ammonium Hydroxide in the TTFD? Is this safe for people with elevated ammonia levels?
Thanks for all you do!
My dad (77) took metronidazole from a dentist just before lockdown.
What followed was a spiralling decline – worsened heart failure (had been stable & drug free for a year), edema, diarrhoea. When I got to him some weeks later I linked the metronidazole to thiamine loss thanks to this website. I’m very grateful.
He improved noticeably on thiamine hcl 500mg & magnesium but then had to be admitted to hospital with dangerously high potassium levels.
The hospital stabilised his kidneys and heart but – horrifyingly – also gave him Ciproflaxin (we were unable to visit hospital due to lockdown and I was told on the phone they were using other antibiotics) I have managed to get him home but he is now extremely frail, his heart & kidneys very weak and has visible signs of neurological damage & terrible agitation. These do lessen with a thiamine dose alongside magnesium..
Lipothiamine arrived today…
My question is – do I need to be even more cautious to go slow with the dose as he is so frail? or, as he is so close to death’s door and we have nothing to lose, should I go higher in order to best save him?
Many thanks Julia
O the tragedy of modern medicine!. Thiamine deficiency can result in a high or low potassium at different levels of TD. He has been through the “medical mill” so I am sure that he is fragile. I would push the Lipothiamine.. Start with 5o mg and titrate its escalation daily according to symptoms
Thank you so much for your reply Dr Lonsdale. It is heartening to receive. I shall do that. Thanks, Julia
My potassium was abnormally low when I suffered from metronidazole toxicity (aka, metronidazole-induced thiamine deficiency disease). It improved with an IV of potassium and prescription potassium supplements but–of course–the symptoms I had weren’t from low potassium; it was just one symptom of dozens of other ones.
Potassium deficiency and excess are both cardinal lab findings at different stages of an ongoing thiamin deficiency
Can you father handle yogurt? It sounds like he needs very strong probiotic yogurt (Nancy’s is a start, although home made is best), and prebiotics such as Inulin very badly, to help his gut heal.
Dr Lonsdale thank you for your work and giving so many details and taking the time to respond to everyone. I have a question regarding supplementation I think could be quite useful for many.
Since magnesium is so useful to take with thiamine, and given TTFD significant benefits come from in the brain your work has shown, do you recommend Magnesium L-Threonate to be taken with it since it’s the only magnesium form that crosses the blood brain barrier?
What is a pretty generalized dosage for TTFD, 50mg twice a day for a month starting out then 50mg a day long term? Any other nutrients/supplements you recommend?
Given your passion and work on energy metabolism do you have any thoughts on succinic acid and supplementing it? It sounds amazing but I never hear anyone talking about it. Thank you
This comment is a direct reminder that advising health measures by an expert on line is no substitute for a hands on physician whose knowledge of the electrochemical functions of the human body is the sole of his/her practice. Unfortunately it may be an extremely long time for this to be the method of treatment. Now to try to answer the question. Magnesium salts are merely to get the magnesium into the body and it is the ion that does the job. Succinic acid is an intermediate substance in the citric acid cycle, the powerhouse of energy production and if it is supplemented its excessive presence will contribute to ROS (Reactive Oxygen Species). It is advertised as a supplement on line !! Oxygen metabolism is the core of energy production and if it is insufficient it will be harmful. But if it is in excess, it is also harmful. That is why we have oxidants in the body that enable is use and antioxidants to mop up ROS. It is a balancing act. We now know that jaundice in the newborn and ear infections that come later are evidence of ROS production, so Linus Pauling was right on key when he told us that vitamin C treated colds. There is a group of physicians that are using vitamin C and thiamine in Covid-19 patients and (well, what do you know !)——————saving lives !!! It all sounds so strange and even like “figments of someone’s imagination” but science has moved on in the description of matter, energy, Einstein and the universe. Why not in medicine?
I had jaundice as a new born and continual ear infections as a toddler with multiple antibiotic rounds. I have always been very underweight and so is my mother. Now I have SIBO in my 30s. I don’t understand your comment. Can you please break it down in simpler terms?
Jaundice in the newborn and repeated ear infections were both the first sign of energy deficiency, probably inherited from your energy deficient mother. The almost certain cause is chronic, long term thiamine deficiency. Your SIBO is likely to be gastrointestinal beriberi, the classic thiamine deficiency disease. Your underweight mother is probably still thiamine deficient.
I’m about to buy TTFD also known as Allitiamine after taking benfotiamine for 2 years and repeatedly falling into symptoms of neurological thiamine deficiency. When I use a brand that includes 10mg of regular along with the benfotiamine my symptoms improve taking three 250mg capsules a day but get worse if I buy a brand that doesn’t include the 10mg of regular thiamine.
I found this article after researching tonight the different forms of thiamine and reading on NCBI that the benfo form doesn’t cross the blood brain barrier. Comments here are siting other articles that say it does. But from my personal experience I don’t believe it does, at least without regular thiamine added. But this TTFD form crosses the BBB as does one called Sulbutiamine which I think is derived or synthesized from this TTFD/Allithiamine.
Dragonfly, would the 250mg benfotiamine + 10mg thiamine tablet you were taking be the Life Extension brand? Interesting that 10mg of thiamine had an effect where 250mg of benfotiamine didn’t. Did you see a similar benefit from large doses of thiamine HCl?
Hi Dr Lonsdale, in reading that PubMed study you mentioned that said that Benfotiamine doesn’t cross the blood-brain barrier I noticed this other paper:
“Powerful beneficial effects of benfotiamine on cognitive impairment and beta-amyloid deposition in amyloid precursor protein/presenilin-1 transgenic mice.”
https://www.ncbi.nlm.nih.gov/pubmed/20385653
The abstract says “both benfotiamine and fursultiamine were effective in increasing the levels of free thiamine in the brain” however only benfotiamine was able to reduce amyloid plaque and tau and enhance cognition (in mice at least. Great news if you’re a mouse!)
So now I’m confused. One paper says benfotiamine doesn’t cross the BBB, the other one says it does (or some form of thiamine does when you take benfotiamine). In your clinical experience have you observed clear superiority of allithiamine over benfotiamine eg a patient taking benfotiamine shows marked improvement upon switching to allithiamine.
I am currently taking Life Extension Mega Benfotiamine – 10mg thiamine as thiamine HCl & 250mg benfotiamine – to prevent diabetic complications. This costs me $Aus1.21/gram, delivered to my door. Allithiamine would cost me $Aus6.26/gram – over 5 times as much. So unless 50mg of allithiamine is as effective as 250mg of benfotiamine it would have to offer significantly more benefits to justify switching.
I only reported research. Whether it states the truth requires the test of time. There is a clinical study going on at Cornell using Benfotiamine in Alzheimer disease. I had an IND for TTFD and never prescribed Benfotiamine
Bettendorff, a well known researcher in studies of thiamine, did a study on mice, After administration of benfotiamine,he said that there was plenty of thiamine in heart and liver but could not find it in brain. Thiamine could be found in brain after administration of thiamine disulfide. The Japanese investigators reported that the thiamine disulfides (Lipothiamine, Allithiamine) had a better cell penetrating power than the S acyl group (Benfotiamine). This does not decry the use of either one or the other. It simply means that they should be used according to the clinical nature of the problem. Since most of the clinical effects of thiamine deficiency are brain related, I back the disulfides. The whole problem comes from the fact that thiamine, used as a drug, produces its effects by stimulating energy production and is therefore capable of treating many different diseases. If you study ALL the thiamine related posts on this website you will begin to become aware that this represents a medical revolution of vast and far reaching importance. I did 20 years of clinical research in the 60s and 70s. From 1982 until I retired at the age of 88, I used the results of the research to treat patients in a holistic practice. I published my results in many medical journals. The present state of medicine needs to be updated and that needs physicians to go to the medical library. Also, they have to have an open mind and not throw away a journal paper as “nonsense”. Unfortunately the pharmaceutical world “rules the roost” and the change will probably have to come from the demand of enough people that have had their symptoms recognized and benefited from nutraceutical treatment.
Dear Doctor,
I live in Mexico and was diagnosed with Wernicke Encephaly a little over a year ago. I never received the thiamine IM that is protocol in the states. They put me on 100 mg. of thiamine which is very “old school”. Initially I upped the thiamine to 500mg. but then I found benfotiamine online. I had to order it from the states and I have been taking it for exactly two months. (two capsules a day) I feel a slight improvement along with PT but I have not given up hope and feel there might be something else out there to help. Do you suppose this TTFD would be better than the benfotiamine? I have a 3 month supply left but am willing to try something else. The doctors here know less about my condition than I do. The original neurologist who diagnosed me, did this with an MRI. Any advice or input is appreciated. I would like to talk to more people out there who have Wernicke’s and see how they deal with it. Thank you very much.
Dear Ann,
My heart goes out to you regarding what you’ve been through with Wernicke’s encephalopathy. I would definitely try allithiamine. In my experience with WE symptoms, benfotiamine and thiamine hydrochloride (unless IV or injection) were of little use in comparison to allithiamine. Would you be willing to share your experience with WE and how you are faring now? I am six months in with what I now know to be beriberi, and due to a lack of recognition that I was dealing with thiamine deficiency, the situation grew dangerously worse two weeks ago. I am still very sick and fighting to stabilize, although things are much better than even a few days ago.
Wishing you the best in your healing process!
I’ve recently come across the work of these two brilliant authors and so much of it makes sense about thiamine.
I just wanted to comment to those who are sulphur (not sulpha) sensitive, that this can be caused from a molybdenum (Moly-B) deficiency. I’m not sure if this is addressed in the book. Years ago, I took 2 teaspoons of organic MSM everyday and it had some very good benefits such as clearing up cell receptors, utilizing nutrients and other compounds more effectively and most positively greatly increasing my vein strength. Over the years I quite taking MSM and my veins went back to being quite tiny and horrible (phlebotomists dread me). Long story short, I’ve been trying to get back on MSM and it’s been horrible (mainly headache, and not a detox headache). I came across the info regarding moly-b and started adding it in a few days ago. My headache is diminishing, other things are happening with digestion. I’ll load for a week or two before trying MSM again.
There is information that MSM (and other sulphurs) cause moly-b deficiency. Beware though, too much moly-b can have horrible effects. Everything needs balance.
I just can’t help but wonder if those who are experiencing the paradox effect if they are deficient in Moly-B?
What are the horrible effects of too much molybdenum?
I had duodenal by-pass surgery (roux-en-y duodenojejunostomi) 6 years ago because of an obstruction. Do you think I can reverse a probably quite severe thiamine deficiency by oral TTFD supplementation, or is injections my only chance?
You can use Lipothiamine. Start on 50 mg/day and wait out paradox (see post on HM). Then titrate the dose to symptoms. READ the posts.
Dear Doctor Lonsdale
January 2019 by illness began, literally it seemed overnight. I was tired and run down but still worked a full 9 hour day, walking 7km each evening after work. One night i woke up with stomach virus or food poisoning i don ‘t know which, and my spiral started. I had started to get burning in my feet which later progressed to my calfs, leg cramping, extreme weakness, brain cloudiness, headaches and dizziness, diarrhea, stomach pain, I thought I had a terrible virus. This has not resolved since. I have almost every test, scope, colonoscopy, stool testing, blood test, ct scan. All normal with the exception of Vitamin B12 somewhat low at 176. There have been time that I have not been able to keep any food down for weeks at a time, I have lost 30 pounds in the last 4 month. Recently I have tried to take Allithiamine, and Vtiamin B12 I experience even worse dizziness and crawling sensation, with severe brain fog, it almost feels like my brain is burning at the back of my head. My Gastroenterology last visit ended with him suggesting I see a psychiatrist. Please advise, i am desperate for help.
You are on the right track by using vitamin B1 and B12. I am afraid that you are experiencing extreme paradox (there is a significant amount of material on this subject on this form). The trouble with taking vitamins that are badly needed, the first impact is that the symptoms get worse. It is not side effects as is traditional with drugs. You are trying to get from a stage of catabolic to anabolic metabolism and the symptoms that you are trying to treat come back in spades. This paradox may last as long as a month or so You should keep the low-dose of thiamine and B12 until the paradox gives rise to an improvement. You can then exacerbate the dose by titrating to the symptom improvement
I had similar issue,saw doctors was put on PPI’s and was eventually diagnosed with Candida and SIBO. Still fighting it off as my functional doctor says I have issues with my migrating motor complex. I’m hoping this website might be the guide to figuring out why my migrating motor complex is dysfunctional.
When is the best time to take allithiamine, it gives me alot of dizziness brain fog
Why would allithiamine cause brain fog shortly after ingestion?
Also worth noting for I’ll share a tidbit for others—80-90% of the time I’ve taken this after dinner/closer to bedtime I’ve slept horribly, waking up many times, like 12+ times. I didn’t realize the correlation as there is an ebb and flow with it with what I believe to be additional factor, other nutrients I’ve taken in during the day, where I am in my menstrual cycle (levels of varying hormones in my body that day) etc. The reason I had not taken during day was due to the brain fog as well as in the past having negative reactions to supplements so I would sleep them off so to speak.
Thanks!
Becky, please see the post on paradox! Unfortunately it is necessary to adjust your thinking when reading posts on this website. Post after post discusses energy deficiency, particularly in brain cells, as the cause of disease. It represents a new model for the causation of disease. The organs in the body are under the command of the brain for activating and deactivating their function. Energy deficiency in the brain distorts its normal function. causing symptoms that are commonly interpreted as “psychological”. This then affects the function of ALL body organs. Their activity relies on signals to and from the brain through the autonomic (automatic) nervous system to each and every body organ. Energy failure in the brain leads to loss of the necessary signaling process and the failure of an organ is then referred to as “organic disease”. Note that the cause of the organ failure is not in the organ: it is in the brain. That is why many different conditions of the body are really conditions of the brain with the underlying cause being energy failure of the brain. This demands a totally different way of thinking about disease and makes sugar a common villain in our culture because of its destructive effect on thiamine metabolism. Thiamine is vital to brain function because it is the key to energy production. The lower part of the brain that controls the complex functions of the autonomic nervous system is inordinately sensitive to thiamine deficiency. It is this concept that allowed me to treat a 12-year old child with Juvenile Rheumatoid Arthritis using thiamine as the therapeutic agent. This case is described in our book (Lonsdale D, Marrs C. Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnurition) available on Amazon books.
I have recently tried to take Allithimine, I have lots of dizziness, tingling in my head and legs, and brain fog, I almost get a crawling sensation. I have had bouts of severe diarrhea, extreme stomach pain, and nausea so bad upon waking, dry heaves. I was on a 5 day course of Flagyl which made everything so much worse. This all began after a severe stomach virus in January, I have had extensive testing and all doctors say my blood tests are pristine, other than vitamin B12 at 176. I have had scope, colonoscopy, stool sampling, everything test normal. Yet I still remain very ill, with stomach flu like symptoms, the most debilitating the sick dizzy feeling in my head especially about 40 minutes after eating. I am trying to take vitamin B12 but it seems to cause more dizziness and the allithiamine make me even cloudier, please advise. I remain very ill, with no apparent reason and my doctor has suggested I see a psychiatrist, which is so frustrating as prior to the onset in January I walked 7km every day, now I can hardly walk across a room without feeling as though I am going to topple over.
Desperate for help.
Your B12 level should be 350 ng/mL or above. B12 deficiency can cause a very wide variety of neurological and psychiatric symptoms, so that may be the root cause of your health problems.
Oral and sublingual B12 won’t be enough. The people at the HealthUnlocked Pernicious Anemia Society forum (https://healthunlocked.com/pasoc) will help you get started with testing and treatment.
I had mystery health problems for years, but have recovered thanks to B12.
Thank you Guys for all this discussion .A collegue of mine lifelong sufferer of G A D disorder seems to have benifited hugely from an organisation called The walsh institute n c t v 17 &podca 132 & all their vids on you tube .They treat “endogenous mental disorders with lab tests & targetted nutrients “not so much parkinsons ” .Anyway for those out there they have a lot on biochemical suitability of folates and “methylation ” etc , on some individuals if they have brain fog etc like dr lonsdale their hearts look to be in the right place “5 0 1 charity in U S and a network of trained doctors round the world
Becky, there is no toxicity from Allithiamine. You are experiencing paradox that you can learn about by hiding the post on this website that explains it. With long term deficiency the brain is in the state of catabolic metabolism and if you try to switch it to anabolic metabolism too quickly it will exacerbate the existing symptoms. Continue with a low dose and the paradox may continue for as long as a month or so.
Dear Dr. Longsdale
Your work clicks very much with my own experience in my health, as a round of metrodinazole sent me in a spiral of problems.
Since starting loading on benfotiamine, i experienced a few days of increased muscle/nerve spasms, followed with a slow but consistent improvment of nerve/muscle symptoms.
The only problem is that the more time I take benfotiamine, the more I get gut unconfort/fatigue/adrenal stress. I attribute this to the fact that thiamine is removing methylation blocks/ repairing vagal nerve. Also, in my methylation cycle, methionine is high while SAMe is low, which is an indication of low ATP, hence low thiamine. So taking thiamine increases methylation and this is what could be driving up my inflamation (and bile flow).
Or because I am CBS heterozygous, and I could be diverting the transulfuration pathway towards sulfur.
Your opinion?
I beleive that b6 is a supplement that one should be careful with in the context of a cbs gene mutation. Not b1. In your position and withbtye number of people you see, I would love to know if you can make a study on cbs + people. That would be of great use to many people.
Metronidazole has a structure that is the same as that of thiamine and substitutes for thiamine in body cells, thus inducing a novel form of thiamine deficiency. You are experiencing paradoxical symptomatic worsening and you must persist until paradox gives rise to symptomatic improvement. I don ‘t think that the heterozygous CBS matters
Hi,
I’ve been on 500mg benfotiamine for a couple of years as a part of a well-designrd, closely monitored, comprehensive oral nutrient program, and recently went to 750mg when testing still said I was slightly low in B1.
Everyone online keeps telling me how awful benfotiamine is as it doesn’t get to the brain and that I should be on allithiamine/lipothiamine instead. I have no cognitive issues.
I’m willing to give allithiamine a try, but all I can find is the Ecological Formulas product which only comes in 50mg capsules. Is there an equivalence in dosing for benfotiamine vs allithiamine? It doesn’t make sense to me to take 15 capsules of allithiamine to get adequate B1. I’m leery of dropping my dose when I function fine on what I take currently.
I know the benfotiamine is high, but I am using high doses of several other nutrients, so it’s in line.
Thank you!
Your answer makes me think about iodine deficiency. At one time bread bakers used iodine to help with texture and browning. Then (1930??) they found bromine/bromide was cheaper, so they substituted. Because the structure is so similar, it tricks the iodine receptors. They take in the bromine/bromide and so cannot take in iodine. I believe this had to do with how common goiters became. Then iodine was added to some salt. But probably not enough iodine was added to solve the problems caused by low iodine. (someone please correct this if it is wrong or needs more info)
I think that the replacement of iodine with bromine took place later, maybe in the 1970’s. The problem with iodine deficiency took place earlier and had to do with deficient soils in many areas (including the Midwest, where there was a “Goiter belt”).
But yes, bromine and fluoride are also halogens and compete with iodine on the receptors of the thyroid.
Hi Fadi,
Can I contact you please?
This is very confusing. I had to look up the info on FRMPD4 and I see no connection at all with D-lactic acidosis, but it has been associated with autism. FRMPD4 codes for several proteins and is X linked, meaning that it is maternally inherited. Thiamin deficiency results in L-lactic acidosis and the only disease associated with D-lactic acid is “short bowel syndrome”, the result of surgical bowel resection. Thiamin will have no effect on D-lactic acid. The only connection that I can see is that the gene anomaly might result in misfolding of its associated proteins, but there is nothing to attach them to D-lactic acid production.
I looked at my oldest son’s records again. I don’t know where I read D-lactic acidosis. The testing never mentioned D or L, so I will now assume that it must be the L type. His Lactate was elevated but Pyruvate was normal. Both sons and I were diagnosed to have FRMPD4. My youngest son was tested and diagnosed with duplications on 16p12.1 of 625 kilobases and on X chromosome Xq13.2 to Xq13.3 of approx. 1.03 megabases. My oldest son was only tested for FRMPD4. I was not able get this latter testing for my oldest son, due to insurance issues.
I am sorry for jumping to conclusions regarding D-lactate acidosis. Those test results were done years ago, but he still experiences stomach problems, anxiety, motor issues and some other things that prompted me to respond to your website.
I think that my frustration about being unable to fully explore medical options regarding his care caused assumptions that should not have been made.
I was wondering why I thought that my son had D-lactate Acidosis. I was looking for Probiotic supplements specifically made for Autistic persons. What I found was a website (customprobiotics.com)with literature and a probiotic formula consisting of “D-Lactate free” microbes for people with Autism that have D-Lactate Acidosis issues.
The post for which this is an answer is missing
I was wondering what would be the best form at Thiamine for someone to take that is sensitive to too much sulphur build up in the body? I suffer from severe Dysautonomia, but I have a genetic mutation which disables me from breaking down sulfur in the body? Is there anyway around this so I can get the benefits of the Thiamine protocol?
Thiamine has one sulfur atom as part of its chemical formula and is an essential item in the production of ATP, the energy currency that drives cellular function. There is no difference at all in the therapeutic action of different thiamine derivatives. Their ONLY additional benefit is that they can deliver thiamine to cells more easily than thiamine in its dietary form. Thiamine deficiency is probably the commonest, if not the only cause of dysautonomia. Beriberi is the prototype for dysautonomia. Since it is an absolutely essential component to life I cannot see how it’s one atom of sulfur can make a difference to you.
Dr Lonsdale,
Can I give lipothiamin to my 93 year old
mother. She is loosing short term memory since about 2 years. She also has less energy.
I take lipothiamin about for about 2 weeks and I have more energy and less anxiety.
Thanks
Zbigniew
Yes of course but beware of “paradox” (getting worse before getting better) See the post on this website.
Could CBS gene mutations be problematic for people taking Lipothiamine?
An interesting question!! The simplest answer is that I don’t know. However, a CBS mutation leads to a relative deficiency of glutathione and this is the biochemical lesion. One of the actions of thiamine is in the hexose monophosphate shunt that produces reducing equivalents, so at least thiamine might help to keep the existing glutathione reduced.
Is Thiamine Tetrahydrofurfurylsulfate (TTFD) the same as Lipothiamine? How/where could I buy/purchase TTFD?
Lipothiamine is an enteric coated tablet of TTFD, same as non-enteric coated Allithiamine, Both are trade names for thiamine tetrahydrofurfuryl disulfide (TTFD) and sold by Ecological Formulas in California, Reason for enteric coating is to avoid some loss of the intact molecule by hydrolysis from stomach acid.
Is there any concern that thiamine may aggravate existing cancers?
Cancer Chemother Pharmacol. 2014 Mar;73(3):585-94. doi: 10.1007/s00280-014-2386-z. Epub 2014 Jan 23.
High-dose vitamin B1 reduces proliferation in cancer cell lines analogous to dichloroacetate.
Hanberry BS1, Berger R, Zastre JA.
The dichotomous effect of thiamine supplementation on cancer cell growth is characterized by growth stimulation at low doses and growth suppression at high doses
What is a high dose range?
What is a low dose (range in mg)?
Thanks!
Diagnosed 2012
My regimen:
The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson’s progression stopped. Suppressed all motor and non-motor symptoms…
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful “thiamine hcl stops the progression forever…”.
Parky people say the first five years is your honeymoon stage with Parkinson’s. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini – “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Roy, are you saying that you stopped the progression of Parkinson’s symptoms using thiamine?
Would you be interested in sharing your story as blog post?
Yes, that is the main topic of discussion on the Healthunlocked forums (Parkinson’s group) where many of Dr. Constantini’s former patients congregate to share experiences.
🙂
Dear Dr. Lonsdale,
I’ve ordered some Alinamin A from Japan:
“(In three tablets (maximum daily dose for 15 years or over)
Ingredients/ Contents
Fursultiamine (vitamin B1 derivative)/ 100mg
(in fursultiamine hydrochloride equivalent,/ 109.16mg)
Pyridoxine hydrochloride (vitamin B6)/ 20mg
Cyanocobalamin (vitamin B12) / 60μg
Riboflavin (vitamin B2)/ 12mg
Calcium pantothenate/ 15mg”
I also have some Arcalion (Sulbutiamin) at hand; I tend to get brain fog and lower mood from, especially when I do not add other B-vitamins. From my understand Sulbutiamine is the thiamin disulfide originally discovered by Williams, is this true? Citing from “Berri Beri and Thiamine (1964)”, page 154:
“Thiamin disulfide: Absorption from the Intestinal tract: Limited; Enormous penetration into erythrocytes”
So this is true for sulbutamine? It seems to enter my brain, judging by reaction… If used very high doses of Benfotiamine (up to 2 g/d) and never got the reaction described at the beginning of the paragraph.
But now to my main question: Can I avoid the paradoxical start-up reaction by slowly titrating TTFD up (starting with one tablet containing 33 mg)? Because I need to keep on working while going through this…
Thank you!
That is exactly what you should do!
Dear Dr. Lonsdale,
I wonder if TTFD solution (from injectables) could be used in a nasal spray for more targeted brain support and smaller dosings. Do you think this would work?
I would expect it to work (if you can get it)
Hello again,
I only could get allithiamine by ecological formulas. I take 50 mg in the morning on an empty stomach. In your experience, what total dosage and dosing interval make sense? I have CFS for over 20 or 25 years (started i childhood, but got worse in puberty) and damage to the atlantoaxial joint (not bone, but tendons)
Shoot for 100 mg twice a day
Dr. Lonsdale,
using an app for rare diseases I’ve found this in my whole genome sequencing file:
Gene: MTND5 Coordinate: MT:12706 No Risk T Risk C Your genetic makeup: C RISK DETECTED Possibly associated with Leigh Syndrome
Literature: Taylor (2002), Thorburn (2003), Lebon (2003), GeneReviews (2014)
Do you have advice what supplementation could be helpful with this?
Leigh syndrome HAS been reported in relation to thiamine metabolism but the connection is far from clear. A case report for which I was a coauthor was published many years ago in which there was a brief response to TTFD but a great deal more research is needed to define Leigh syndrome.
You seem to have a lot of cutting edge knowledge about Thiamine which ahs made me a fan, however you seem to equate TTFD to Lipothiamine. TTFD AFAIK is just AlliThiamine, a cousin to Sulbuthiamine:
As you clearly know, AlliThiamine and Sulbuthiamine are both thiamine derivatives, however Lipothiamine appears to be a combinational substance of AlliThiamine and Alpha Lipoic Acid (ALA):
While ALA is good for some people, due to its chelation properties, it is not good for everyone (obviously see Dr. Cutler for the half life of ALA, its mercury chelation properties, etc).
I am curious as to why you recommend Lipothiamine as opposed to pure Allithiamine, both produced by the same company, one with and one without ALA, when your entire argument is about Thiamine without any mention for ALA.
As someone with Thimaine deficiency and mercury toxicity, I believe Lipothiamine would not be the right thing for me to take, although Allithimaine would theoretically be fine. That said, Dr. Cutler was not a fan TTFD and called it a toxic substance. I don’t necessarily subscribe to that idea but I am curious as to what you think about it.
Thank you
Let us be clear. Japanese investigators discovered allithiamine as a disulfide derivative in garlic. They did animal studies and found that it had a greater biological effect than the thiamine from which it was derived. They then synthesized a whole group of disulfides of which thiamine tetrhydrofurfuryl disulfide (TTFD) is the most modern. They also synthesized a group of acyl (non disulfide) derivatives. All are known as open ring forms of thiamine and their SOLE ACTION is to deliver thiamine to cells. The disulfides are reduced at the cell membrane enabling thiamine to pass through the lipid barrier whereas the acyl derivatives (e.g.benfotiamine} require an enzyme to break off the prosthetic group and do not have the same advantage of absorption.
ALLITHIAMINE and LIPOTHIAMINE are trade names for TTFD. Sulbutiamine is another disulfide.
Why does Lipothiamine contain a very small dose of lipoic acid????
I asked the CEO of Ecological Formulas to create a TTFD with enteric coating to ensure that TTFD would pass through the stomach acid to get to the jejunum where thiamine is absorbed. He already had a lipoic acid pill and simply added TTFD to it, knowing that the tiny dose of lipoic acid would not add or subtract from the biological effect of TTFD.
Hello Mr.Lonsdale
I have one question regarding the intake of Allithiamine.
Does it make sense to take Allithiamine on an empty stomach or is it better to take it with food?
Im wondering if the stomach acid destroys the Allithiamine structure and theresfore does make it not working anymore!? Thank you very much
Regards
Steffen
Stomach acid does have some destructive action. That is why Lipothiamine is enteric coated. Both of them are TTFD
Thanks for asking Ecological Formulas to make both the Allithiamine and Lipothiamine. I first thought I was going to have a hard time finding it. I just ordered the Lipothiamine.
I’m ordering this to see if will help my adult autistic, developmentally delayed son and myself. When he was a young boy, his blood tests indicated something off regarding D-Lactate Acidosis levels. His doctors never did anything about it. He’s into gymnastics and ice hockey, but always complains of being tired. He was recently diagnosed with FRMPD4. He also has neutropenia at times. There’s no formal name for this newly discovered genetic anomaly. It’s supposed to lead to Autistic tendencies. The thing is, I have another younger son with the same genetic marker, yet he isn’t Autistic and has unexplained physical anomalies. Very confusing.
Regarding myself, I was quite athletic as a child and used to run track. I eventually stopped running, because I would randomly pass out after running sprint races. It got to be embarrassing by my teens, so I quit. I was physically active as an adult, but still randomly passed out after physical activity(ie. Bike riding, weight training, jogging…)
I bought Benfotiamine for my oldest son, but it had no discernible effect. After reading your articles about TTFD, I wanted to try again. Ideally, I would have my oldest son tested again to see if he still has problems with D-Lactate Acidosis. With his insurance(Medicaid) and his present doctor, I don’t see it happening without spending cash that I don’t have.
Dr. Lonsdale, you state that Benfotiamine, does not get into the brain, whereas TTFD enables absorption of thiamine into the brain. I understand we are to take magnesium, a good B-complex along with Thiamine.
Is there a brand that contains TTFD that you would recommend? My son’s naturopath recommended Benfotiamine, but I want to ensure that I’m giving my 13yo son the right thiamine. My son has hypersensitive hearing (misophonia) and I started giving him 150 mg of benfotiamine and I have noticed a difference in him in just 3 days. Thank you for your guidance.
Both Benfotiamine (BF) and Lipothiamine (LP) are what is known as open ring forms of thiamine. Their job is to deliver thiamine into the cell and is their sole function. Animal studies done some years ago showed that BF did not cross the blood brain barrier, whereas LP did. That is the only science available concerning this. There is a lot more research about these two derivatives, well beyond the scope of writing anything here, but my studies of this research have settled for LP as the best derivative. That does not mean that BF is inferior to LP, it just has a different way of delivering thiamine to the cells that need it. If you have found that BF works, that is fine.
If there is any practioners knowledgeable please contact me!!!! schristian135@yahoo.com
Dr. Lonsdale,
Oh how I would give my entire savings to be able to work with you! Can you offer any advice on someone in practice who is knowledgeable in your wisdom?! I have eoe. My kids have eoe, Mast Cell Activation, and a ton of ige allergies. My mom has rheumatoid arthritis, as does my grandma. Our family has a lot of Alcoholics and sugar addicts. My boys are popping up with a lot of elevated levels such as tnf-a, eosinophils, IL-13……. so much of my health problems stem back to this dang eoe! I desperately want to try the thiamine therapy on them, even possibly order the IVs from Japan! However, every time I bring it up to a doctor or naturopath, they treat me like I’m crazy. his blood test revealed a minor deficiency and they keep telling me to just give him a B complex. Is there anyone who could help me with this?! Please, I am desperate for my babies! I have read a lot of your work and try to understand as much as I could. When I asked for the test you mentioned, my doctor had no clue what I was talking about. I am giving them one capsule of the liposomal thiamine a day currently, however I have no idea what I should be giving them to be therapeutic! I’m really wondering if this could help our health and if there’s any way I can find someone to help us?! Thank you so much for your wisdom, dedication, and time! Shawna Robinson
Dr Derrick, It seems I have issues taking Benfotiamine as it contains a lot of Sulfur. I do have an overgrowth of Sulphate Reducing bacteria SIBO which converts sulfur to the toxic Hydrogen Sulphide. What options do I have to increase my B1 levels? Is there a away i can consult you for my anxiety issues. Thanks, Racerbiker
There are several points at issue here. 1. I am retired and do not consult. 2. The only sulfur in Benfotiamin is in thiamin. 3. SIBO is fashionable at the moment and makes little sense to me. 4. What makes you believe that you have low vitamin B1 levels? State your clinical symptoms and a little bit of your medical history.
Thanks Dr Lonsdale.
I have been advised to take Benfotamine for my back pain due to muscle inflammation and weakness. I do have sulfur intolerance issues as I get a stomach upset on eating foods high in sulfur and thiols. Have a leaky gut, gut inflammation, intolerant to many foods in lectins, sulfation issues leading to poor detoxification of catecholamines, phenols and anxiety issues due to all of this. I heard Benfotamine also helps in reducing brain inflammation and hence wanted to try it but they gave me anxiety. Please help. Thanks
Explain your symptoms
Thanks Dr Lonsdale, My symptoms are anxiety, panic attacks, brain fog with some foods, hair loss, chronic, shoulder tics, fear of impending doom, fatigue, food sensitivities to anything high sulfur/estrogen/phenols.
These are the symptoms of defective energy metabolism in the brain. They might respond to supplementary thiamine and magnesium. If the symptoms become worse, you may be experiencing a paradoxical effect which is temporary, although its lasting effect is unpredictable
Thanks Dr Lonsdale. I do react to Sulfur/Sulfate and high protein based foods in the form of Anxiety and fatigue. Does Benfotamine contain sulfur and will it cause me Anxiety if I take it?
The complex formula for Benfotiamine contains a single sulfur atom (S)
Dr Lonsdale I’m curious to get your take on Fibromyalgia, is it just beriberi with a new name? Also, after our microbiome discussion and the idea that bacteria in the gut are using our thiamine too….is IV thiamine supplementation the way to go? By doing so, one could bypass any small intestine absorption issues and possible pathogens that reside there? Get thiamine to the brain more effectively, where it is needed to stop this vicious cycle from happening. If so, what type, dosage and frequency would you sugggest? I doubt one can get Lipothiamine in IV form?
Thanks as always for your persistence in wanting to help all be healthy
This post illustrates the difficulty that I have in getting people to understand that thiamin is not a drug, but when it is being used in megadoses it becomes a drug, a classic oxymoron. It also illustrates that naming a particular disease as though it were a unique phenomenon on its own is misleading. Chronic fatigue syndrome represents a set of symptoms that are entirely due to disease resulting from thiamin deficiency, whereas the cause for chronic fatigue syndrome has long been sought as ANOTHER disease with a separate cause. If you see chronic fatigue syndrome and beriberi deficiency of cellular energy from mitochondrial dysfunction. Beriberi is regarded as THE as variable examples of cellular energy deficiency, you can immediately begin to understand that the present disease model is a catastrophe. If you see each constellation of symptoms as a separate expression of disease and give it a name without knowing the underlying cause you wind up with a monstrous collection of disease entities and that is exactly what we have. The fundamental need is for a physician to see the constellation of symptoms as a variable expression of a combination of factors that include the genetic background of a given individual, the life stresses being experienced and the quality of nutrition.Let me give you an example. An observer by the name of Parkinson recognized a constellation of symptoms that is now called Parkinson’s disease. There is already ample evidence that it is an expression of a combination of genetic risk, life stresses including aging and malnutrition. It is true that one or other of these three elements may be the dominant one in an individual case, but the usual expression includes all three. That is why there is now considered to be a genetic expression of Alzheimer’s disease as well as an acquired cause. There is also evidence that our mitochondria can be damaged during life although the current view is that mitochondrial disease is genetic in origin,period.Lastly, thiamin should not be given on its own for anything. It should always be used as a senior team member
I get the concept of this being a root cause/factor of many so called seperate diseases/syndromes….but out here in today’s America people are being told they have fibro, sibo, or x, y, and z disease…not yesterdays beriberi. We are trying to make connections with what you are saying and what we have been told we have. So it’s a question of who to believe. I’ve mentioned modern high calorie thiamine deficiency as a root cause to nervous system disfunction to several of my doc’s, of various disciplines(including functional)and they look at me like I’m crazy. When I say there is no lab currently doing the right thiamine test to prove this, I totally lose them. I like the theory but without the proper testing to prove it, it’s still going to be called sibo or fibro or x,y,z., p, d, q disease.Case studies help, but are particular to that far away patient….each person needs their own test result , right in front of their doctor, to truly know.
I also get that Thiamine supplementation needs it’s cofactors of magnesium, other B’s, and a multi to get results. Still thiamine is the key and the method in which one administers it, how much, and how often is also a key factor. So do you recommend IV therapy and the Meyers Cocktail as the way to best do this? Is the amount of thiamine in that enough? Or is there a Lonsdale Cocktail you can recommend one tries?Can you get Lipothiamine in IV form from Cardiovascular Research Ltd?
One more…EpicGenetics(FM/a test) want to try and treat Fibro with an old school, cheap, safe(?) TB vaccine BcG….its waiting for FDA trial approval now. What says you about this idea?
Thanks
Oh how I sympathize! I have been in this situation for nearly 40 years. The chief of pediatrics at Cleveland Clinic was my friend until I started working with vitamin therapy and he then turned against me with all the rest of my colleagues. Later, long after he had retired, I visited him in Florida and he admitted that I was 20 years ahead of my time. Do you think that I don’t recognize this, the proverbial sore thumb? The only thing that I can do is to write about it and support it with all the evidence that I can muster. I do not expect recognition although I might have a voice after I am long gone and that is why Dr. Marrs and I wrote our book “Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnutrition”, available at Amazon books. If it is not read or discarded as BS, the message is lost. Let me now try to answer your questions.
Yesterday’s beriberi
Obviously this is a current concept. The entire orthodox medical fraternity strongly believes that beriberi is only of historical interest. Please remember that beriberi is derived from the Chinese language and its translation is “I can’t, I can’t”. It is meaningless unless you understand what the ancient Chinese were seeing as the behavior of huge numbers of people suffering from a nutritional disease for which they had absolutely no idea of cause. Unfortunately modern physicians are wrong and I have proved it to the hilt many times. I have tried writing about it in the medical literature, but it still comes down to the way that the reader has been programmed to believe ( note the word believe) the reality of health and disease. A physician may read an abstract and say to himself “this is absurd” and throw the paper away. It takes years and years for a new concept in medicine to become acceptable and only if it is eventually proved by the evidence.
Who to believe?
Exactly! Belief comes eventually from proof and that takes time. I am hopefully building up the evidence before I pass on.
A test result is essential
Exactly! One of the anomalies that I have discovered is that current laboratory tests available are usually misleading. The blood level of vitamin B1 is usually normal in moderate (and I mean moderate) deficiency. The erythrocyte transketolase is usually normal as well. The enzyme has to be tested for thiamin deficiency by adding thiamin to the test tube reaction. If the enzyme activity (TKA) accelerates, it is simply registering the fact that the addition of thiamin is necessary for its full activity and is called the thiamin pyrophosphate effect (TPPE). Hundreds if not thousands of times I have seen patients where the TKA is within the normal range but the TPPE is grossly abnormal. Furthermore, after thiamine therapy the TKA increases a little bit but the TPPE decreases, usually to zero, meaning that there is no further acceleration of enzyme activity. Thiamin is required INSIDE the cells and not just floating in the blood. TKA and TPPE are testing the BIOLOGICAL function of the enzyme, not just its presence.
Intravenous vitamins
Please understand that we are not talking about vitamin deficiency simply being replaced. We are talking about disease as a manifestation of energy deficiency in our cells, particularly in the brain. Hence, the symptoms vary according to the distribution of the energy deficiency. Vitamin B1 and all its colleagues are being used as “drugs” in large doses in an effort to enable the cells to build up their energy profile. We have recognized that giving the vitamins by mouth may not reach the concentration required in the cell. By using all the water soluble vitamins intravenously, we are providing a large concentration of the “drugs”.
Intravenous Lipothiamine
Yes, it is available. It is made by Takeda Biochemicals in Osaka Japan. It is not recognized in the United States by the FDA but I had an independent investigator license for many years and have used it on many patients, as well as writing about it in the medical literature (again that has to be read). It has incredible value as a therapeutic agent because it addresses the core issue of disease, defined as “The Diseases of Adaptation” (Selye H, 1976).
BCG for Fibro
I do not know what “Fibro” stands for. I have to presume that it is being regarded as a disease of “failed immunity” and the BCG is presumably being used to stimulate immunity. If I am right it will not work!
Lastly, what Dr. Marrs and I are essentially saying is that disease is a result of energy deficiency affecting cellular function in the brain. We regard thiamin as an important therapeutic agent because of its place in energy metabolism. There is a tremendous amount of evidence in the medical literature that thiamin deficiency can be precipitated in stressful situations such as cancer, following surgery and in chronic degenerative diseases. Ask your “Doubting Thomas’s” to research the literature.It seems incongruous that we have been able to report two children with febrile lymphadenopathy (sore throat, swollen neck glands and fever) and another child with chronic asthma who responded to megadoses of thiamin. It is this kind of experience which has suggested to us that the present medical model is a catastrophe
Selye H. The stress concept. Can Med Assoc J 1976, 115(8):718
The Healthcare model in this country is a castrophe. 5 minute consults with quick, dirty, and repetitive/lucrative big pharmachemical prescriptions…is capitalism at its worst. Prescribing something that numbs symptoms but doesnt cure, that most likely will give you something else, that you need another med for, is healthcare desguised as greed. I just think you can’t have true healthcare that is capitalistic in nature. Greed can have no part in this. The goal should be health not wealth. But there is less wealth if everybody is healthy, so you have what we have today. Now you think a deal could be struck in one of the wealthiest countries in the world. Where the best capitalistic system supports the best socialistic healthcare system. Because if you don’t have your health, what point is wealth? But perhaps I’m missing something here, maybe wealth is buying real healthcare today? When a billionaire can have fearless unprotected sex with a porn star and a playmate in the same weekend (every weekend) and still be well enough to become president… leads me to believe there is more going in healthcare than what meets my equal treatment for all eye. Enough of the stinking politics…on to the good stuff- Science!
Takeda Biochemicals is now Takeda Pharmaceuticals….they have Japanese division and a US division. The US site only mentions pharmcueticals they offer, where as the Japanese site list supplements too….interesting. There they have a product called Alinamin which is b1 from Fursultiamine(?) and other B’s, plus vit E. Says it treats eyestrain, stiff shoulder of 50 years of age(love the Japanese), pains of the waste and lower back, neuralgia, and numbness of extremities….hmm sounds like dry beriberi and say…. fibromyalgia!…. all symptoms I have.
The Personality and The Chasse….but within that Chasse lies what fuels that Personality …the gut. Wouldn’t you say ? Hypocreatties was and is still right. Really a symbiotic relationship between the two working to control everything. If there are bad weeds(bacteria’s, yeasts, virus’) in either and in the wrong places trouble arises. We really need GastroNeurologists. There is a functional doctor named Allison Siebecker of the Natural University of Natural Medicine that treats SIBO naturally. She may be one that would by into your thiamine theory and have the lab resources to properly test it perhaps? I sent an email about your book/theory to Dr Mark Pimentel’s( dr sibo) lab at Cedars-Sinai and never heard back. We need somebody to do the proper testing!…..not tied to big pharmachemical !!
From EpicGenetics ( ones with FM/a fibromyalgia test and possible BCG treatment)…”Fibromyalgia is a misnomer. The disease process is neither a fibrous or a muscular disorder. The disease should be called the immune dysfunction or suppression disorder. Critical white blood cells within the body’s immune system which are peripheral blood mononuclear cells lack the capacity to produce adequate and normal quantities of vital the proteins Chennokines and Cytokines.”
What says Dr Lonsdale about this…any experience giving BCG, it’s no longer given in US for some reason, yet schools quarantine kids suspected of TB.
Odds and ends…I have two friends one with MS(was an alcoholic) and one with dystonia(is an antibiholic). Has thiamine therapy shown to reduce MS plaques or treat dystonia in any way? Using oral or IV therapy? On a personal note I was told to stop supplementing with magnesium because my levels were too high on an interacelluar blood test. You say one has to take magnesium when taking thiamine, in my case would I not take it alongside the lippothiamine ?
The End…Happy Easter Dr Lonsdale and thanks for your continued guidance & knowledge
Hi,
I am hoping you can help me with a couple of questions.
I am wondering if I have understood it correctly that TTFD is the same as Allithiamine? And, if so, is the synthetic version of allithiamine completely free off garlic for those sensitive to this?
My last question is. – how would you suggest a person low in all of the other B-vitamins to go about addressing thismine in a good way, when all of the B-complexes out there (also the high quality ones) contains thiamine HCL and not TTFD? (Strangely my functional medicine Organic acid analysis did not show b1 to be very low, but due to my health condition (CFS, nerve issues etc) I am of course looking at this as well.
Thank you, nuch appreciate your reply and help! This is not information and knowledge one will find other places.
TTFD is thiamine tetrahydrofurfuryl disulfide. It is the synthetic equivalent of allithiamine that occurs naturally in garlic and other members of the allium plants. Lipothiamine and Allithiamine (note he capital a) are both synthetic equivalents of the natural allithiamine. Allithiamine is in powder form and its taste if you try to fractionate it is horrible. Lipothiamine is enteric coated to get it through he stomach acid to the jejunum where it is absorbed.
Hi, Thank you – ok, so does this mean that Liphothiamine is the preferred choice, and is it Ok to use for those sensitive to garlic?
Also, what about thiamine HCI, whic is the version present in B-complexes – is this not an Ok one to use in therapeuthic measures?
Thank you again –
Both OK
Hi, Ok, can you help me understand as I am getting a little confused – does that mean that thiamine hci is also a TTFD type? I thought the point was that TTFD was preferred when addressing B1 deficiencies?
TT FD is the synthetic equivalent of the naturally occurring allithiamine in garlic and is the best supplement for delivering thiamine to the body. Th HCi is a water soluble thiamine salt. BOTH Th HCl and Lipothiamine ONLY HAVE ONE FUNCTION to deliver thiamine to the cellular systems of the body. The ONLY difference is that Lipothiamine does it better.
I don’t know what happened to the “review” about which you comment. It is not here.
The review is on iHerb. Look under benfotiamine.
Very good way to refute the accusation. I did a little detective work. This same “reviewer” left a similar review for Benfotiamine product on iHerb in 2010. I would guess from the number of reviews this person made around that time, that there could have been an adverse reaction to the multiple products potentially being used and blamed it on the Allithiamine. I saw this review when I ordered my Allithiamine months ago, so your explanation was of great interest to me.
The note about TTFD helping to protect against carbon tetrachloride toxicity in the liver could be very helpful to my illness, as a secondary benefit! Thank you, again!