Navigating Thiamine Supplements

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Thiamin(e), vitamin B1, is spelled with and without an ‘e’. Originally thought to be an amine, the ‘e’ was dropped when the formula became known, but the spelling using the ‘e’ is still used in many texts and across the internet. We spell it with the ‘e’ on this site because of the enhanced search characteristics e.g. thiamine ranks higher than thiamin on search engines. In addition to the discrepancies in spelling, there is quite a bit of confusion surrounding this vitamin and its derivatives used in supplements. Even the most astute readers will find navigating the world of thiamine supplements confusing. For that reason, this post will address some of the more important issues concerning these supplements.

Thiamine Chemistry

In order to understand the writing that follows, I must try to show this formula.

thiamine chemistry

Please excuse this presentation of the thiamine formula. It was made from the Apache Open Office Drawing file. Its representation is incomplete because it does not show the “double bonds”, but it illustrates that the atoms that bind together to form thiamine are in “two rings”. The 6-sided ring on the left is called a pyrimidine ring and the 5-sided one on the right is called a thiazole ring. The CH2 that joins them is called a methylene bridge. This is the naturally occurring thiamine that we must obtain from our diet. Its deficiency causes the classical disease known as beriberi. It is important to understand the atomic construction of thiamine in the discussion that follows concerning its derivatives.

Allithiamine

The Vitamin B Research Committee of Japan, a group of university-based researchers, set out to study beriberi in detail, trying to find the best method of treatment for this disease which had been a scourge in Japan for thousands of years. Without covering the specific details, they found that thiamine was converted to a disulfide derivative by an enzyme found in garlic. Because this occurred in other members of the allium species of plants, they called it allithiamine. Thinking at first that thiamine had lost its biologic activity, when tested in animals the new compound was found to have a greater biologic activity than the original thiamine. It was found that the thiazole ring had been opened, creating a disulfide. They began a research program to synthesize a whole group of thiamine disulfides, two of which are shown below.

TTFD

 

Although the arrangement of the atoms is different from the thiamine diagram, the important thing to notice is that the thiazole ring (right side) has been opened, creating a disulfide, including  what is known as a prosthetic attachment (the part attached to the disulfide). A disulfide is easily reduced (S-S becomes SH) when the molecule comes into contact with the cell membrane. The result is that the prosthetic group is removed and left outside the cell. The remainder of the molecule passes through the cell membrane into the cell. The thiazole ring closes to provide an intact thiamine molecule in the cell. It is inside the cell where thiamine has its activity and so this is an important method of delivering it to where it is needed. It is this ability to pass through the lipid barrier of the cell membrane that has caused allithiamine to be called fat-soluble. It only refers to this ability, however. It is soluble in water and can be given intravenously.

This “fat solubility” is extremely important because dietary thiamine has to be attached to a genetically determined protein, known as a transporter, to gain entry to cells. There are known to be diseases where the transporter is missing. Affected individuals have thiamine deficiency that does not respond to ordinary thiamine and are usually misdiagnosed. Therefore, a disulfide derivative that does not need the transporter is a method by which thiamine can be introduced to the cell when the transporter is missing. There is no difference between allithiamine and thiamine from a biological activity standpoint. It is this ability to pass the active vitamin through the cell membrane into the cell that provides the advantage.

I performed animal and clinical studies with thiamine tetrahydrofurfuryl (TTFD) for many years and found it to be an extremely valuable therapeutic nutrient. Any disease where energy deficiency is the underlying cause may respond to TTFD, unless permanent damage has accrued. Dr. Marrs and I believe that energy deficiency applies to any naturally occurring disease, even when a gene is at fault. For example, Japanese investigators found that TTFD protected mice from cyanide and carbon tetrachloride poisoning, an effect that was not shown by ordinary thiamine (Fujiwara, M. Absorption, excretion and fatal thiamine and its derivatives in the human body. In Shimazono, N, Katsura, E, eds. Beriberi and Thiamine. (pp 120-121) Tokyo, Igaku Shoin Ltd. 1965). They exposed a segment of dog’s intestine, disconnected it from its nerve supply and found that one of the disulfide derivatives stimulated peristalsis (the wavelike movement of the intestine). It is more than likely that TTFD could be used safely in patients with post operative paralysis of the intestine (paralytic ileus).

Other Derivatives

The Japanese investigators made many disulfide derivatives, testing them individually for their biologic activity. They found that thiamin propyl disulfide gave the best results, but unfortunately gave both treated animals and human subjects a pervasive body odor of garlic. They went on to create TTFD with a deliberate attempt to remove the garlic odor and the commercial product was named Alinamin F (odorless). This is by far the best of the disulfide derivatives. Besides the trade name of Alinamin, the Japanese product, TTFD is sold as Lipothiamine in the United States.

S-acyl derivatives

The Japanese investigators synthesized a whole series of thiamine derivatives where the prosthetic group was attached to the carbon atom (bottom right C on the thiazole ring). They are all so-called open ring derivatives but the prosthetic group has to be separated by an enzyme in the body for the thiazole ring to close. The best known of these is known as Benfotiamine and several papers have been published concerning its benefits in the treatment of neuropathy. It has also been published that it does not cross into the brain, whereas TTFD does and this seems to be the major difference between Benfotiamine and Lipothiamine. Benfotiamine, a synthetic S-acyl thiamine derivative, has different mechanisms of action and a different pharmacological profile than lipid-soluble thiamine disulfide derivatives. It is predictable that TTFD would be the best choice since it has beneficial effects both inside and outside the brain and it certainly needs to be explored and researched further as a very valuable therapeutic agent.

Thiamine Salts

Thiamine is found in health food stores as thiamine hydrochloride and thiamine mononitrate. These are known as “salts” of thiamine. Like dietary thiamine, they require a protein transporter to get the vitamin into the cell. Their absorption used to be thought to be extremely limited, but megadoses are effective in some situations. The absorption of salts is therefore inferior to that of the thiamine derivatives discussed above. They are all so-called “open ring (thiazole)” forms of thiamine and represent the most useful way of getting big doses of thiamine into the cell. The reader should be aware that when we talk about big doses of a vitamin, it is being used as a drug. Although they can be used for simple vitamin deficiency, their medical use goes far beyond that because they can be effective sometimes when thiamine absorption is genetically compromised.

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53 Comments

  1. Hello Dr. Lonsdale,

    I understand that simple sugars are contraindicated for thiamine deficiency unless from whole foods. I wonder about the supplement D-Ribose, though, since it is supposed to assist with mitochondrial energy. Could you also comment on the use of sodium or potassium bicarbonate topically (in baths) or oral supplementation in regards to thiamine deficiency. Thank you!

    1. Terminology is important in understanding my answer. For example, what is meant by “whole foods”? It should be replaced by the term “natural foods”. But the distortions in linguistics so often confuse the issue. The food industry is using the term “all natural” that is completely meaningless within the context of its use. I see no reason for supplementing with d-ribose, sodium or potassium bicarbonate.It is very clear to me that our advance in medicine has to be by a comprehensive understanding of cellular biochemistry. It has long been said that “a little knowledge is a dangerous thing”. It will take a very long time before the medical profession picks up the slack. Although we know a lot, it is overwhelmed by our ignorance and our progress demands sophisticated research. I read new articles in the medical literature that provide highly sophisticated nutrient based medicine every day and most of them are coming from countries other than America. Let nobody read this blog with the idea that all the answers are available. The complexity of a single cell is simply mind-boggling. In my clinical experience I have tried to keep it simple and I became aware that thiamine used as a drug rather than simple deficiency replacement was a huge advance in itself. For those reading this blog, I sincerely recommend obtaining the book by myself and Dr. Marrs. “Thiamine Deficiency Diseases, Dysautonomia and High Calorie Malnutrition”. Much of it is readable by the intelligent public and answers some of the questions that keep cropping up here. The highly technical areas can be skipped or studied, according to the experience and knowledge of the reader.

  2. Dr. Londsdale,

    What can be the negative effects of taking Allithiamine with an SSRI?

    I can’t stop the SSRI right now and need the Thiamine, what am I to I do?

    Would Lipothimaine be better as I’d prefer this due to it coming in tablet form so I can cut it down and start small. The Allithiamine only comes in capsules.

    I see you and poster “Jason” mentioned Refeeding Syndrome. This is what I am trying to treat per se with the Thiamine. I posted those articles in my post below that state that Thiamine deficiency during refeeding a malnourished patient could cause similar symptoms to Refeeding Syndrome. Are you stating that taking Thiamine for a severe Thiamine deficiency causes Refeeding Syndrome?? In these articles it states Thiamine supplementation resolved their electrolyte loses and other clinical Refeeding Syndrome symptoms.

  3. Dr Lonsdale, when you say remove sugar in all its forms could you specify? Does that mean fruit as well? Does it mean all starches even vegetables? I looked up foods with high b1 and have been eating more red lentils, oatmeal, etc, but these foods are high in carbohydrates.

    1. I mean the products of the food industry. Of course sugar is found in fruits and vegetables and that is the way that we should be taking it. We have become extraordinarily artificial in life and the further we get from our own biology the more dangerous it becomes. It is probably the fiber in the fruits and vegetables that modifies the way the sugar is metabolized. That is why the food industry has produced products that contain fiber and they do not work. Civilization is virtually our enemy. Any food that God has made is okay. Man is an omnivore, meaning that he can eat meat as well as vegetables and fruit. All you have to do is to look at our teeth. We have “cutters” to cut food, in company with pointed teeth, designed for tearing chunks out of a carcase and “grinders” to grind down plant products. This is how our ancestors were equipped as they emerged as Homo sapiens. Mcdonalds and Coca-Cola were in the future and represent the modifications that appeal to our hedonistic side.

      1. I was eating a lot of watermelon over the summer because it was in season and low in oxalate. I started noticing that I would get burning sensations in my feet and legs after eating it so I stopped.

    1. Charlotte are you referring the thiamine transporters or other nutrient transporters? If so, they are called solute carriers, SLC for short, there are almost 400 in total. The ones involved with thiamine and other B vitamins are the SLC19A2 and SLC19A3, folate uses the SLC19A1.

    1. Thank you for your response to my original post.

      Another question though: A
      re there any contraindications to taking Allithiamine if one is also taking an SSRI like Lexapro?

  4. Chronic B1 and B3 deficiency

    Hello,
    I have chronic functional B1 and B3 deficiency per SpectraCell Micronutrient Panel. I have tried multi and B-complex, but these didn’t help improve B1 and B3 per follow-up SpectraCell testing. I have started reading many of your articles about B1 and have started taking Lipothiamine 10 days ago to cover B1 along with multi w/ B’s, B-complex, electrolytes and magnesium.

    Any special considerations for B3 deficiency? Is Multi w/ B’s and B-complex enough? Is there a special B3 form I need to take to overcome possible genetic or transport issues?

    My current oral B3 dosage is 150 mg per day via 35 mg Niacin and 115 mg niacinamide.

    Thanks in advance.

    1. You are doing alright. It would be helpful to others on this website to describe your symptoms and why you had the tests done in the first place

      1. It’s been a long 3 year journey, but my symptoms are best summarized as POST/CFS.

        In early 2014 I started experiencing fatigue, aches, and sinus issues. I assumed allergies, infection or cold, but it never went away. Just waxed and waned. I bounced around doctors trying to figure it out, but no doctor could find anything and many just wanted to manage symptoms. About 6 months into this I started having anxiety, depression and panic attacks which I had never experienced ever in my life.

        Eventually, doctors started saying it was all in my head and I need to see a psychiatrist. I stumbled into a Functional Medicine psychiatrist office and she was big on nutrition and other less than main steam illnesses. She ran more tests than all of my other doctors combined. Through this testing we suspected a nutrient deficiency component, but struggled to nail it down. One and half years later I stumbled across a very experienced nutritionist and he recommended SpectraCell Micronutrient testing. As a result, we now know that I have low levels of B1, B3, and borderline B6 and B9 deficiencies. Also, a methylation pathways panel has confirmed low cysteine, taurine, and glutathione.

        We are trying to fix these deficiencies, but we are struggling. I started Lipothiamine 2 weeks ago, because Thiamine HCl and sublingual cocarboxylase didn’t help my B1 deficiency. It’s been a difficult start. Increased energy, slight POTS and IBS reduction; however, restlessness and anxiety has increased significantly. Also, increased pins and needles, and poor sleep. Maybe this is the paradox that is mentioned in several articles. This paradox is incredibly unpleasant and I understand why people stop treatment.

        I wish there were more stories on the paradox. I feel like I am flying blind.

        1. You ARE “flying blind” because very few physicians know about “paradox”. It also has been mentioned on this website as “refeeding syndrome”. When you have been deficient in thiamin, in particular, for a long time, the paradox is apt to be prolonged because you are resuscitating a mechanism that has been broken. It is too difficult at a technical level to explain refeeding syndrome or paradox. It is to do with an explosion in oxygen utilization. The longer you have been deficient, the longer the paradox and it is entirely and completely unpredictable. My experience over many years is that it is the best prediction of ultimate success. It is encoded in the saying “there is no gain without pain”. Jason has evidence of multiple B complex vitamin deficiencies and he would benefit best from intravenous vitamins or multiple injections of B complex.

          1. Thanks Dr. Lonsdale for your reply. Would it be possible to post one or two new articles on the “paradox” and “refeeding syndrome.” One article could focus on educating us on the science behind paradox and refeeding syndrome. a second article providing deeper and more detailed examples of patient experience during paradox and refeeding syndrome.

            I found two articles on refeeding syndrome which may be helpful for others:
            https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/
            https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2654033/

            Thanks in advance.

            1. Jason, that is a great idea. Much of this is covered in the book and encourage everyone to purchase and read the book. Nevertheless, a few more posts on the topic would be useful.
              I wonder, if also, you might consider pulling all of your comments together into a post about your experience. Include your symptoms, the tests, what you’ve learned, etc. These case stories are critically important to build awareness, and frankly, to build the knowledge base regarding this issue. Please let me know if you will write your story. I will help edit. Here’s the link to contact me. https://www.hormonesmatter.com/write-for-hormones-matter/

            2. See my post from August 3rd below. I posted links to several medical articles stating Thiamine supplementation resolved symptoms of Refeeding Syndrome in patients.

            3. Jason,

              See my post from August 3rd below. I posted links to several medical articles stating Thiamine supplementation resolved symptoms of Refeeding Syndrome in patients.

          2. Hello Dr. Lonsdale,

            What are your thoughts on anticholinergic drugs in relation to thiamine deficiency? I currently take two, sertraline and doxylamine succinate. It appears that anticholinergic drugs and thiamine affect acetylcholine levels.

            1. I don’t know anything about the drugs because I never used them. Thiamin deficiency will result in loss of cholinergic neurotransmitter drive. I cannot think of anything less likely to help you by taking an “anti-cholinergic drug” because cholinergic drive is extremely important in many aspects of brain metabolism

  5. Dr. Lonsdale:

    I am experiencing an electrolyte imbalance (low phosphorus and potassium) after a period of fasting during Lent. I began eating normally again and experienced what I originally thought was Refeeding Syndrome. I had been diagnosed with this in the past and like this time, despite treatment and supplementing with up to 3,000 mg of Phosphorus and 160 mEq of Potassium, my blood levels are still low.

    I have weak, heavy muscles, edema and can’t walk more than 50 feet without resting or else my body feels like heavy jelly. Last time I had this issue in 2015 I tested very high for urinary loss of Phosphorus and Potassium. My Nephrologist thought I had kidney damage from a toxin but he also thought it could be the massive amounts of supplements I was taking for the Refeeding Syndrome. This time around my urine was not tested.

    I researched online and believe God led me to several medical articles stating that Thiamine deficiency during the refeeding phase could cause renal tubular dysfunction resulting in electrolyte losses via the kidneys. So electrolyte values during the refeeding phase after fasting could be Refeeding Syndrome’s intracellular losses -OR- urinary losses from Thiamine Deficiency.

    I decided to purchase B1 tablets in the form of Thiamine Hydrochloride and started 8 days of 100 mg. I also took Mg 400mg and a multivitamin. On day 6 I experienced increased energy as well as complete resolution of (8 weeks of!) extreme muscle weakness and heaviness, shortness of breath on exertion, absolutely no energy to walk more than 50 feet, as well as edema. I had energy into late into the night.

    That only lasted for 2 days and then I experienced extreme tiredness and symptoms returned, albeit not as bad as before. Once I stopped the B1 the extreme tiredness left. I tried it again and the tiredness returned. I know that B vitamins can cause unusual tiredness in some people.

    I really believe I am onto something here though. I have decided to try an active form of B1 and am not sure if I should go with Alltiamine or Coenzymated B-1? Do you have any suggestions?

    The patients in the articles were repleted after a short period of days to weeks and had resolution of their electrolyte imbalances. I am concerned though because I have been in this condition for over 2 months now and if it is in fact Thiamine deficiency I worry that maybe there is permanent damage to my kidneys.

    The medical articles are pasted below if anyone is interested in reading about this.

    “Thiamin and folic acid deficiency accompanied by resistant electrolyte imbalance in the re-feeding syndrome in an elderly patient”
    http://apjcn.nhri.org.tw/server/APJCN/26/2/379.pdf

    “Thiamine Therapy and Refeeding Syndrome in Extremely Low Birth Weight Infants”
    http://www.casereports.in/articles/6/3/Thiamine-Therapy-and-Refeeding-Syndrome-in-Extremely-Low-Birth-Weight-Infants.html

    “Acute thiamine deficiency and refeeding syndrome: Similar findings but different pathogenesis”
    https://www.ncbi.nlm.nih.gov/pubmed/24985016

    1. Low potassium occurs in thiamin deficiency. I would advise you to keep up with Allithiamin, magnesium and a multivitamin on an indefinite basis

  6. Could any of the forms of thiamine be applied topically with either water of fat mixed with it if one could not tolerate the oral forms i.e.: due to digestive issues like chronic malabsorption and diarrhea.

    Are there any companies that make thiamine as a cream or transdermal gel? Everytime I take b-vitamins orally, I get serious diarrhea that last very long, and eventually it makes my b1 deficiency, along with other b deficiencies, worse.

  7. I’ve been having problems waking up with a dry mouth for years, and recently air hunger, I thought was due to apena, however ENT could not diagnose me with sleep apnea after reading sleep study. He could not figure out way I was suffocating at night as he never had a skinny patient before. I found your article about pusedo-hypoxia after I talked to the ENT.

    This spring I was diagnosed with a B1 genetic deficiency homozygous SLC19. I ordered B1 Benfotiamine, HCI, and sulbtiamine and have been experimenting in dosages up to 500 mg with regular dosing of the other multi- B’s. I just ordered the TPP form. The 500 mg B1 dose was recommended by a hypothyroid clinician, who has seen marvelous energy improvements. At this large dose my suffocating went away immediately on the first night, and now I wake up only 2 times a night instead of 6 times. I have been on this protocol for only 7 days and surprised with the fast results.

    I have Hashimoto’s and have not felt well under all the different meds I’ve tried over the past 5 years. I believe my condition is due to B1 deficiency, and the symptoms are getting more severe now that I’m 52.

    I would like to try IV injections until my breathing problem is cured. There isn’t a lot of information on B1 IVs. Is there a therapeutic dose or IV drip to start with muscle shots as maintenance to continue? Or would you just recommend I use oral B1? I eventually develop tolerance to oral supplements and they stop working all together.

    Thank you for sharing your work with us all.

    1. This is a marvelous example of thiamine deficiency. Notice that the symptoms were confused with sleep apnea and probably with Hashimoto. If you read and understand the post above, you will come to the conclusion that the best supplement is the one that has the chemical name of thiamine tetrahydrofurfuryl disulfide (TTFD) and sold in the United States as Lipothiamine available from Ecological Formulas. Notice also that Karen got immediate relief for some of her symptoms but not all.She expected her “breathing problem” to be relieved. All she needs to do is continue with the large doses of oral thiamine derivatives because they do not need the transporter protein that she tells us is missing. She should also add large doses of magnesium because that works with thiamine. A well-rounded multivitamin is also a good idea because thiamine does not work on its own. It is a team member. I must emphasize here that the compromise of automatic breathing is due to thiamine deficiency in the lower part of the brain. The dry mouth in the morning is almost certainly because thiamine deficiency stimulates the sympathetic component of the autonomic nervous system so I would expect some components of the fight or flight reflex.Treatment of long-term thiamine deficiency is quite different from the use of a pharmaceutical drug. It is relatively slow as the system reconstitute itself and patience is required

      1. I read you comments on increasing magnesium potassium aspartate and magnesium salt.

        Could you comment on foods and supplements that destroys B1 transport? My lab cited blueberries and raw fish as antithiminase. I was eating berries everyday because of low sugar content and taking resveratrol and 88% dark chocolate, which happen to be the only two of the few foods that I like that I’m not allergic to. I do not eat sushi anymore, because of toxins and white rice. I have an intolerance or sensitivity to many common foods. I’m paleo 80% of the time and do not eat dairy or gluten. Whenever I eat too much of one food, I develop a IGE or IGG response, I’m sure this is due to the B1 deficiency and hoping the inflammation will go down in time. I don’t have enzyme activity to breakdown sulfur, SOD and histamine nor transport folate, so vegetable nutrients aren’t being absorbed. I read
        Vitamin C foods help with absorbstion, but I’m allergic to citrus fruits and nightshades. Would something like Perque Vitamin C powder compensate for times I ingest polyphenols?

        I try to stay at 20-25 grams of sugar a day, I have insulin resistance. Is this still too high?

        I was able to wipe out Candida Krusei but I do still have yeast overgrowth (white toungue) due to IBS-C. I had elevated oxalates but not sure if I still have it. Would taking calcium citrate help breakdown oxalate foods? It’s been extremely difficult eradicating my yeast infections.

        An interesting topic would be the quality of lab testing available. I have taken Genova OAT and Great Plains labs in the past, I took the Spectrecell lab most recently which was the one that measured my B1 and aspartate deficiency and low glutathione, big markers in my case.

        I will be taking your articles to my Orthomolecular doctor that is out of state in a few months, and he will be extremely pleased at the information available here. My GP is excited to monitor this new way of treating my thyroid problem.

        1. Point number 1: there is obvious confusion here. Thiaminase is an enzyme that occurs in certain bacteria that live in the human intestine. It has the capacity to break down dietary thiamine. It has nothing to do with transporters. Thiaminase also occurs in the intestines of fish and in several plants. Note that when we eat sushi we do not consume the intestines of a fish. As far as I know blueberries do not contain thiaminase. Point number 2. There are several proteins known as transporters, several of which transport thiamine into our cells. They are made in the body and are under genetic control. If one or more of the thiamine transporters is missing, it is a source of body and brain cellular thiamine deficiency.Point number 3. A level teaspoonful of sugar would be 5 g. So taking 20 to 25 g would be the equal of 4 to 5 teaspoonfuls. This would easily be the cause of thiamine deficiency, particularly if there is a transporter problem.Point number 4. For those interested, there are many posts on this website that discuss various aspects of thiamine metabolism and I do not need to repeat them here.

        2. Karen,

          I wanted to share some info based on your second post, where you mentioned blueberries. In 1999, The World Health Organization published a report on thiamine, which indicates that polyphenols in blueberries are thiamine-antagonists (or anti-thiamine factors), which is different from a thiaminase found in raw fish. these thiamine-antagonists are found in other foods, such as red cabbage, tea, red beets and others. Quercitin is another thiamine-antagonist that is used that is used as a supplement. It was recommended to me years ago for allergies, and I know recognize that some of the symptoms I experienced while taking it were likely due to thiamine deficiency.

          I would be interested to know if large doses of the polyphenol resveratrol is an anti-thiamine antagonist. I don’t believe it was used as such when the WHO published that report in 1999. Perhaps, Dr. Lonsdale could answer that.

          Not sure if I can share the WHO link to thiamine here. I’ll try: http://www.who.int/nutrition/publications/en/thiamine_in_emergencies_eng.pdf

          1. Let me make it as clear as possible. Natural, edible foods provide the correct fuel to the human body. Resveratrol is a substance contained in some foods and is part of the genius of that food. If you remove an active principle from a herb it has an entirely different action from that of the whole herb. This is the frightening mistake of the food industry. Of course, we know only too well that not everything created by Mother Nature is good for us. Some berries and mushrooms are frankly poisonous and we had to learn that the hard way as a species. I keep seeing posts, saying that taking B1 “upsets me”. This has given rise to a post called the “refeeding syndrome”. If you have been deficient in vitamin B1 for a lengthy period, you have to be very cautious in replacing it. It requires very small doses to begin with and you build up as the adverse symptoms gradually cease. Unfortunately, because of the ignorance in the medical profession concerning the basics of normal nutrition, it is difficult to find a physician who understands the problem and how to correct it.

            1. I am struggling to understand all the information about thiamine and how to supplement it etc so please forgive me if I’m asking what seems obvious. I am trying very hard to educate myself but I don’t seem able to retain information very well at the moment. I believe I am deficient in thiamine (POTS, CFS, more recently apathy, nausea and lack of appetite and lack of cognition that had me fear that I was losing my mind). I struggle to supplement orally because I get increasing gut pain from this. Is this what you mean by people saying B1 “upsets me”? You mention a post called “refeeding syndrome” are you referring to comments by site users or a post written by a site contributor? I tried to search for it but came up empty.
              At the moment I can only manage oral supplementation every 5 or more days without getting worsening stomach pains. This has taken the edge off the worst of my symptoms but is not really enough to replete me I suspect. I don’t know how to proceed. I am in the UK and cant source all forms of B1 that have been mentioned. I have Benfothiamine and the HCl form. When you mention starting with very small doses what sort of doses do you mean? Also what are the typical adverse symptoms? Would my gut pain be one such symptom? I do get similar gut pain from other supplements and many foods so it is not only B1 that causes it.
              Are there key posts that would be most helpful for me to read? A lot of questions I know.
              My main difficulty is how to get the B1 inside me in a consistent way. Any help or guidance you can give would be most appreciated.

              1. I need to know your age and a history of your illness. I also need to know your intake of sugar and whether alcohol is an important item.

                1. I don’t drink alcohol at all. I was low carb for several years but in an effort to put on weight and stimulate my metabolism I started increasing carbs. Mostly potatoes since I cant eat grains at the moment and sugar. For a few weeks I was probably eating 60 – 80g sugar per day (previously none except occasional honey).
                  In fact it was upping the carbs that caused the nausea, loss of appetite, apathy and cognition problems. I stumbled across an article about B1 and it seemed to fit.
                  Once I realised what was going on I cut the sugar down to 10 – 20g per day. I haven’t cut it out completely at the moment since I struggle to eat enough on a pretty limited diet.
                  I’m 48 and have had chronic fatigue since 2004. Major worsening 2008 – virtually bed ridden. Slowly gained some strength back but still pretty severe.
                  Prior to 2004 had anorexia (including binging and purging for 10 years or so) and severe depression.
                  Diagnosed with POTS 2012 though largely resolved now.
                  Have had low blood pressure since at least mid 20’s Typically around 90 / 60 though has been lower.
                  Many thanks

                  1. I don’t know if it’s of any relevance but I was diagnosed with Hereditary Haemochromatosis 2 years ago. I am now in maintenance so venesections are less frequent. I’ve had 12 or so units of blood removed over the last 2 years.

                  2. Sugar is your undoing! I would expect that you have extremely severe thiamin deficiency because you have some of the symptoms of beriberi. You have to give up sugar absolutely completely in all its forms and you will need large doses of thiamin and magnesium and a multivitamin to recover

                    1. Thank you so much for replying.
                      I must admit I suspected that adding in the carbs was revealing a B1 deficiency that I previously wasn’t aware off. When you say large doses, what sort of figures are we talking about? This is my problem because I get stomach pain when I take oral B1 several days in a row (it gets progressively worse each day) and I am worried that if it is inflaming an already highly sensitive gut will I even absorb the B1? Is there another way of getting it in me? I have a similar problem with magnesium. At the moment I have epsom salt baths most days in an effort to get magnesium in me.
                      Could I dissolve the B1 in water or DMSO and rub it on my skin?
                      I feel stuck in a catch 22, I know I need the B1, but taking it makes my gut worse.

                    2. Dr Lonsdale

                      I have recently had the transkelotase test done at Biolab
                      http://www.biolab.co.uk/index.php/cmsid__biolab_test/Vitamin_B1_(Thiamine)_-_transketolase_activity

                      My test result is 1.09 which is the ratio of activated to basal activity. Anything below 1.15 is considered normal. I am now totally confused because everything I have been experiencing leads me to believe I have a thiamine deficiency and this test seems to be saying otherwise.

                      When I first came across all this info on thiamine I started supplementing and the worst of my mental confusion, nausea, loss of appetite went away within a few days. I stopped the B1 because of gut pain and the symptoms increased again, I then restarted the B1 and they decreased again. (Unfortunately I had been supplementing for a bit before performing the test but intermittently) I am now using the Authia cream since I struggle with oral supplementation. I have noticed that I feel really tired after applying the cream for most of the day. I seem to remember reading that this would also suggest deficiency as otherwise supplementing would have no effect.

                      I’m inclined to believe my response to thiamine rather that the test result but I was wondering if there is any explanation that would explain the result.

                      I had a RBC mg test run at the same time and that showed a slight mg deficiency (1.92 with a ref range of 2.08 – 3.00 mmol/l). Again I struggle to supplement with mg as I can’t take it orally. I rely on epsom salt baths and in the past mg oil on my skin.

                      I would be very grateful for any insight or advice you have to offer.
                      Many thanks

    2. Hi Karen,

      I’m sorry to hear that you are experiencing these problems. Your post caught my attention because you mentioned that you were diagnosed with a B1 genetic deficiency homozygous SLC19. If you see my post, please explain how you got that diagnosis and what doctor you worked with to discover it. I have my raw data from 23 & Me, but I’m looking for someone to advise me on it.

      I discovered that I was thiamine deficient a few years ago and it’s likely a genetic issue. I don’t respond well to the usual forms found in supplements, like thiamine mononitrate. I take Lipothiamine, magnesium and a B-complex. Currently, I’m “experimenting” with intra-muscular thiamine injections, too. IV’s tend to be a lot more expensive.

      I wish you good health!

      1. Run the 23andMe reports through livewello.com. They do a more comprehensive SNP report. It’s a little complicated by provides a wealth of information, including defects in the SLCs. It cost an additional $20.

  8. Dr. Lonsdale, your blog changed my life – and probably extended it. Thiamine deficiency plagued me for many years and supplementation with Benfotiamine was a rapid miracle cure for me. By chance, a person mentioned Sulbutiamine to me today. Apparently, it’s benefits are getting attention from doctors. You may wish to add it to this important article.

  9. Dr. Lonsdale, your blog changed my life – and probably extended it. Thiamine deficiency plagued me for many years and supplementation with Benfotiamine was a rapid miracle cure for me. This is another important post. By chance, a person mentioned Sulbutiamine to me today. Apparently, it’s benefits are getting attention from doctors.

    1. Sulbutiamine is a disulfide derivative of thiamine. I recommend reading the post above carefully to see why the disulfide derivatives are the best

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