Refeeding syndrome in thiamine deficiency

Refeeding Syndrome in the Context of Thiamine Deficiency

32652 views
Like

Although this has been mentioned many times in posts and in the comments of readers on this website, there still seems to be a lack of understanding. The commonest complaints have been that “thiamine caused side effects” or “I was allergic to thiamine”, inevitably causing the complainant to discontinue it. I want to emphasize the important meaning of these seemingly adverse effects by illustrating a typical case in my own experience. First of all, please understand that thiamine deficiency has its major effects in the lower part of the brain. It is this part of the brain that controls the automatic (autonomic) nervous system that orchestrates the functions of all the organs in the body. Thiamine deficiency has its dominating effect by damaging this system and the result is known as dysautonomia.

Recognizing Thiamine Deficiency Syndromes

One day I was in conversation with a young woman and was trying to describe the huge number of symptoms that result from dysautonomia. When I finished listing them, I was surprised when she said that I had exactly described the symptoms that she had suffered for years. I had no prior knowledge of this, believing that she was completely healthy. She told me that this polysymptomatic condition had been present for as long as she could remember. Apparently it had never been understood by any physician that she had consulted and she had come to accept that it was “just the way that I am made”. She was in her early thirties and it must have required a lot of courage to do the work for which she was employed. Unrelenting fatigue dominated her life, and this is a major clue to her problem.

Symptom Exacerbation: Refeeding Syndrome

I advised her to start taking thiamine and magnesium supplements, starting with a low dose and advising her that the symptoms would become worse for an unpredictable period of time (refeeding syndrome). Note that this individual was known to be intelligent, was fully employed and that nobody was apparently aware that she had any health problems. Later she told me that after she started the supplements, for a month or more she had suffered an excruciating exaggeration of her many symptoms. Trusting that I knew what I was talking about, she persisted with the supplements. This is of great importance because without this information it might be interpreted as “side effects” and the nutrients withdrawn. It also would probably accompanied by anger and the ultimate symptomatic relief never experienced. Using her own words she then said “after about a month of taking the supplements, all my symptoms disappeared and my energy was better than any that I had experienced in my whole life”.

I will try to interpret what was happening here as an example of refeeding syndrome. It is important to understand that the many symptoms experienced by this woman were due to cellular energy deficiency in the brain. Their variability may have included emotional symptoms such as anxiety, depression, or anger without obvious cause because they would be the result of exaggerations of normal brain activity. The lower part of the brain is highly sensitive to energy deficiency and because it organizes all bodily functions, it can give rise to heart palpitations, chest pain, unusual sweating, pins and needles in the extremities, nausea, abdominal pain, vomiting, insomnia, constipation, diarrhea, or abnormal sense of balance including vertigo. Body pain that has no observable cause (hyperalgesia) or a pain response from a stimulus that does not usually cause pain (allodynia) may occur.

Refeeding Syndrome in Children

A 14-year old boy with sugar induced thiamine deficient eosinophilic esophagitis suffered agonies of hyperalgesia and screamed when I touched his abdomen (allodynia). Postural Orthostatic Tachycardia Syndrome (POTS) is quite a common variant which is particularly frightening to the patient. Let me emphasize once and for all, when symptoms like this go unrecognized, sometimes for years, they become temporarily exaggerated if the necessary nutrients are provided in too high a concentration. Whether this be a single vitamin, a group of vitamins or whole nutrition, this syndrome must be expected. A gradual introduction of the appropriate nutrients is mandatory. Because thiamine is so integral to energy metabolism, I found over the years that it was the most important. Because young children have not been exposed to malnutrition for too long because of their age, refeeding syndrome is seldom if ever encountered. The syndrome is directly related to the time of exposure to malnutrition and its severity. It is therefore an effect in adults and occasionally in adolescents..

Whether intelligence is a genetically determined gift or whether it is acquired during life, the brain consumes a disproportionate degree of energy that can only be met by an appropriate ingestion of food and water. If this is inadequate, symptoms begin to register the inadequacy by producing a sense of fatigue as the dominant one. It is the way that the brain signals its lack of cellular energy. The symptoms are easily removed if the underlying cause is recognized early. Because in many cases they are not recognized and the malnutrition may continue, it is not very surprising that cellular damage would be expected gradually to accrue. Perhaps chronic neurodegenerative disease may follow.

From Catabolic to Anabolic Metabolism

The normal states of damage and repair (anabolic metabolism) would be inadequate and a state of gradual breakdown and inadequate repair would be predicted (catabolic metabolism). Because thiamine deficiency causes the condition known as beriberi, I would like to state once more that the English translation of this Chinese word is “I can’t, I can’t”, severe, intractable fatigue being the dominating effect. Although the refeeding syndrome is poorly understood according to current medical literature it is apparently related to a rapid change from catabolic to anabolic metabolism. The misguided attempts to re-nourish the victims in concentration camps at the end of World War II resulted sometimes in their death. It is at least understood that correcting catabolic to anabolic metabolism, whatever produced the abnormal state, demands low doses of food in starvation and low doses of supplementary vitamins in the long term effects of high calorie malnutrition.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

This article was published originally on January 6, 2020. 

Derrick Lonsdale M.D., is a Fellow of the American College of Nutrition (FACN), Fellow of the American College for Advancement in Medicine (FACAM). Though now retired, Dr. Lonsdale was a practitioner in pediatrics at the Cleveland Clinic for 20 years and was Head of the Section of Biochemical Genetics at the Clinic. In 1982, Lonsdale joined the Preventive Medicine Group to specialize in nutrient-based therapy. Dr. Lonsdale has written over 100 published papers and the conclusions support the idea that healing comes from the body itself rather than from external medical interventions.

59 Comments

  1. Thank you so much doctor! I have IBD, POTS/Dysautonomia and have been feeling like absolute rubbish for 10 years. I developed sarcopenia and became bedridden. I also have the mthfr gene mutations too.

    What form of Thiamine should I be taking then please? And do all forms cross the BBB?

  2. In the mthfr and methylation communities they also have a similar reaction when supplementing with methylfolate to restore and treat the deficiency, they call it startup or overmethylation and its symptoms seem to be a little similar but different. Some of the potassium dropping is similar and they figure that it is a result of sudden and rapid cell division coming from the methylfolate supplementation. It is a tricky gauntlet to navigate and many people arent aware of it so they find out they have mthfr and supplement with methylfolate and have a bad response and then conclude ” I cant tolerate methylfolate” and just stop taking it. Which is tragic, so there definitely needs to be awareness so the person can properly understand it is normal and temporary phenomenon and how to manage it.

    Since both are b vitamin deficiencies and share similar symptoms when repleting I wonder how many people that have thiamine deficiencies also have MTHFR?

    Maybe there needs to be a unified approach to correcting these deficiencies simultaneously?

  3. If I suspect a longstanding thiamine deficiency (manifesting in POTS, fatigue and very low tolerance to stress or exertion), and I start taking 100 mg TTFD and I DON’T have a paradoxical reaction, is that an indication that I may not be thiamine deficient? I was braced for the worse, but I literally feel nothing on it (I’m taking Thiamax). Is it worth still persisting, upping the dose perhaps, and staying on it for a few months, to see if it helps with my symptoms? Are you always meant to feel something when on it? I almost wish I had the paradoxical reaction!

  4. Hi there,
    I took a 50mg allithiamine capsule for the first time yesterday and it made me feel intensely wired and anxious, with heart palpitations. I’m still feeling some of this today and wondering when I can expect it to subside?
    I suspect I had either an intense paradox reaction or allithiamine form just isn’t for me.

  5. Hi. Thank you for all the work that you do!

    I started 50 mg of Allithiamine on July 13 thanks to stumbling upon Dr. Derrick Lonsdale. Like the experience of many, I felt better immediately. My palpitations went away. My cognition felt so much better.

    Then about a couple of weeks from then, I started getting a little bit of acne (not much at all – I am very acne prone and this was very manageable). Although it was manageable, I freaked out and lowered the dose by a lot. I started opening the capsule and pouring half of the capsule in water and consuming it that way. After a week, I then further lowered the dose to a quarter of the capsule in water .
    (I started this method because I do this with a lot of my supplements and notice I need a little tiny amount of most supplements to feel better and higher doses make me feel really bad.)

    I also added in a very tiny bit of each b2, b5, b6 and b9, wanting to cover my bases during this time. I also added a tiny bit of molybdenum, But I never had all of these everyday – admittedly it was just random. I was trying to go by how I felt.

    Everything was going just fine and the little bit of acne I had did stop with the lowering of the dose. However, I got a rash in my armpits and groin. When I looked up this rash, it seems like candida intertrigo. This was not caused by friction. I have never had issues with rashes in these areas. I have issues with eczema and psoriasis for the last 13 years but never in these areas.

    Then I read that low doses of thiamine can cause issues and that higher doses are better. Given that I have been having very small doses, I am wondering if this rash has to do with the low dose or is it part of the paradox? Maybe the molydenum or something else? I am lost and confused. Any thoughts would be much appreciated! Thank you so much!

  6. Hello! I have muscle twitching for almost 3 years. When I take B1 it get worse, which is very weird. Could it be paradoxal reaction? I make sure I get enough magnesium, potassium and calcium.

  7. I have experienced the „paradoxical reaction „ after starting TTFD, and it is still not over after more than 1 year.
    Since ATP points to the presence of Adenosine and Phosphate, I started some research on intracellular Hypophosphatemia.
    Rapid consumption of fructose seems to trigger Fructokinase C. After that ATP is degraded down to ADP and AMP, and furher degraded to Uric Acid (key player in Metabolic Syndrome, Insulin resistance, increased lipogenesis, T2D, endothelial disfunction etc.)
    Fructokinase C depletes the cells from Phosphorus, with the result of diminished ATP, diminished Na/K ATPase etc.
    Maybe this plays a role in POTS too?
    I think, I have still insulin resistance, and the glycogen and phosphorus in sceletal muscles is not very high.
    After a little hike of a few hours, I need up to 5 days of recovery, and the symptoms described in Rhabdomyolysis and metabolic syndrome match. Inclusive muscle weakness and seizures.

    Fructose can be made by the polyol-pathway from glucose, especially when insulin resistance is present .

    And refeeding may be influenced by thiamine, magnesium a n d intracellular/serum phosphorus.

    https://mdpi-res.com/d_attachment/jcm/jcm-08-02202/article_deploy/jcm-08-02202.pdf?version=1576238718

  8. Hello, is IM thiamine hlc good choice? I am on 50mg once a week injection, and after 6 weeks I stil have paradox reaction.

  9. Hi, is swalowing problem(problem to initiate swalowing, like forgot how to swalow) could be thiamine deficiancy symptom? I also have blurred vision, diarrhea, gut problems, weight loss, no apettite,fatigue, anxiety,panic attacks, state of fight and flight,. I try lots of supplements, done blood test but everything looks fine.My b12,folate is fine but I never done b1 test. I am working physical job, I used to be heavy drinker every weekend, plus going to gym and eat lots of carbs.Thanks.

    • All those symptoms are typical of energy deficiency. Your diet is typical of thiamine deficiency.Get rid of all that sugar and alcohol and start supplementing with thiamine. Start with a dose of 100 mg and expect to feel worse for a month or so.When you start to improve, increase the thiamine slowly and try to find the ideal dose. Read all the posts on HM re thiamine

  10. Hi there, I am just over 8 weeks post-Covid with my main lingering symptom being severe physical fatigue. I began taking Thiamine HCl 13 days ago at 500mg per day and titrated up to 1500mg within the first 10 days with bearable “paradox” symptoms. During this time I have noticed a gradual improvement in energy. However today – 3 days into taking 1500mg of HCl I am experiencing a strong heartbeat, slight head pressure, nausea, slight dizziness and an overall feeling of weakness. I am just wondering if these symptoms are considered part of the paradox effect and if I should continue at this dose until it subsides? Many thanks for all that you do!

  11. Hi there, I am just over 8 weeks post-Covid with my main lingering symptom being severe physical fatigue. I began taking Thiamine HCl 13 days ago at 500mg per day and titrated up to 1500mg within the first 10 days during which time I noticed a gradual improvement in energy. However today – 3 days into taking 1500mg of HCl I am experiencing a strong heartbeat, nausea, slight dizziness and an overall feeling of weakness. I am just wondering if these symptoms would be considered part of the “paradox” effect and if I should continue at this dose until it subsides or titrate down? I am also taking Magnesium, Potassium and a good B- Complex. Many thanks for all that you do!

    • Dr Costantini, an Italian physician, pioneered megadose thiamine for Parkinson’s disease. He emphasized that if a patient experienced an adverse effect after symptom improvement, to reduce the dose back to resolution of the adverse effects. Although this is not, strictly speaking, a toxic phenomenon, you can have too much thiamine or too little. It has set me wondering about the ancient Chinese who expressed a median result for everything, the insufficiency and excess being represented as Yin and Yang. The modern phrase is “a moderation in everything”.

      • Hi Dr. Lonsdale, many thanks for your response. I have read Dr. Constantini’s papers and they make for a very interesting read!
        Do I take your analogy as that the slight improvement I experienced is the maximum benefit I will get from Thiamine?

        • I simply don ‘t know!! I suggest lower the dose until improvement, wait a while and try again

  12. For those asking questions, please survey the many posts on this forum, dealing with symptoms and treatment to avoid repetition, before posting your own health history.

    • Dear Dr. Lonsdale, Dr Marrs and Dr. Overton and other contributors,
      Thank you all for your continued posts and response to comments. I have a question about the duration of paradox/refeeding. Most of the posts say around 1-2 months of refeeding/paradox- mine has been going on for over 7 months. I have struggled with some form of chronic fatigue for probably 15-20 years- including hx of childhood asthma, allergies and migraines starting in teen years. I have reviewed many posts and comments and continue to deal with strange possible refeeding or paradox reactions to Thiamine HCL and TTFD. I started takingThiamine HCL last October, could only handle 25mg. Brain fog, fatigue , anxiety and depression all got much worse upon taking. Over 5 months, I gradually titrated up to around 600mg HCL, still continuing to get paradox/negative reactions and then seemed to hit a wall- always feeling exhausted and out of it, and so have been tappering back down to try to find a dose that is comfortable- currently at 50mg HCL again. I am taking the recommended magnesium, potassium, NAC/glutiaione, selenium and other b-vitamins including Riboflain as the posts have recommended. I would also experiment with TTFD Lipothiamine 50mg. I would often feel ok or maybe eve a bit better for a day but if I took it again within 3 days, I would find that I would feel horrible, so much fatigue, brain fog, anxiety and depression, flair up of PTSD like symptoms– it is somewhat overwhelming and not sustainable. I have been at this for 7 months now, taking HCL daily, and TTFS intermittently no more than 50mg 3x/ week. While some days have been good, the vast majority are not and I continue to feel worse after taking Thiamine in any form. So at 50 mg HCL daily with other b-vitamins, I continue to feel fatigue and brain fog about 2-3 hours after taking it. It is hard to believe that this is helpful and heading in the right direction and that there isn’t some piece I am missing. I am debating stopping all together, because while I am not 100%, i do feel better not taking any thiamine!

      I don’t expect a quick miraculous turn around, but I see very little on here about such a long and complicated paradox at such a low dose.
      Any feedback, perspective or suggestions would be greatly appreciated.

  13. Hi Dr. Lonsdale,

    I have had muscle weakness in my legs for years, and have just found information on TTFD. I received Ecological Formulas Allithiamine and took it after I came home from work yesterday evening, and after a half hour, my muscle weakness reduced and it gave me such a surge, I left the house for a walk! Unfortunately, it was short lived, and I was back to having muscle weakness the following day at work. I believe that I have been B1 deficient for many years, as I’ve had leg weakness the entire time (last 10+ years). My doctor visits always were a clean bill of health, but there was never an explanation for the leg weakness, so I just came to the realization – “well, I guess this is just how my body is.” I saw in the other comments that you had recommended magnesium and or low dosage of R Lipoic (or Alpha Lipoic) Acid in combination with TTFD.

    What would you recommend for dosage/combination since it’s quite possible that I’ve been deficient for so long? (Possible Refeeding Syndrome)

    Thanks!

    Aaron

    • If you have been deficient for years do you really believe that you can relieve it with just one dose? Continue through paradox and then titrate dose to symptoms

      • Dr. Lonsdale,

        I’m certain it’s will take quite some time to correct, so I’m remaining patient. In no way did I think it would resolve itself immediately after such a long period. I am continuing a combination of TTFD and high-dose thiamine mononitrate (1500-1800mg). As Dr. Elliott Overton pointed out in other studies, the cell(s) must be over-saturated to correct the deactivation/inactivation of the enzyme responsible for producing energy within mitochondria properly.

        Thank you, thank you, thank you. I am very thankful that you have taken the time to impart what an importance B1 is, and to help those such as myself to understand the path back to proper health.

        -Aaron

  14. My husband has been taking a daily B-100 vitamin (which includes 100 mg thiamine mononitrate) since September 2019 (among some other suggested vitamins by Dr. Boles regarding Cyclic Vomiting Syndrome). He started amitriptyline in October, and is now at 75 mg. The frequency of his vomiting episodes have been less since then. But he still gets horrible vertigo (with nystagmus) several days a week. He started 100 mg allithiamine on May 5. He has not experienced any huge changes, except for maybe his vertigo is more often. No seeming “paradox.” But today, he woke up with *really* bad vertigo, and horrible body aches. Like the flu kind of body aches, but no cough. Is it normal to get body aches with paradox? I’m just wondering if maybe his paradox was delayed or lessened because he was already taking 100 mg thiamine for many months. But of course, with the whole COVID-19 thing, I’m concerned about that too and maybe the body aches are something else.

    • Apologies for the delay in response, no, it is not a paradox. Indeed, it is likely quite the opposite. Amitriptyline depletes thiamine – https://academic.oup.com/ajcn/article/111/1/110/5637679 and it is making his thiamine deficiency worse. Whether thiamine deficiency caused or is the consequence of the vomiting, is unclear. It can be both, but suffice it to say thiamine deficiency is common with excessive vomiting. I am familiar with Boles’ protocol, at least in children, where carnitine and coQ10 were the primary treatment modalities.
      I should note also, that not only is thiamine mononitrate is the least bioavailable form of thiamine but the dosage is likely too low to overcome his deficiency. He needs a more absorbable form, that doesn’t require a transporter or enzyme activation, both of which are problematic with CVS. Formulations that include what is called TTFD would work best for oral usage. There are 3 currently on the market, allithiamine, lipothiamine, and thiamax. The first two are on amazon, the third just hit the market and hasn’t quite made it to amazon. If possible, IV thiamine would be best. This usually comes in the form of thiamine hcl, which when taken orally isn’t as well absorbed, but via IV bypasses the gut and liver. Read up on thiamine deficiency and how to resolve/dose thiamine with deficiency. We have a book that you should consider called: Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnutrition.

      • Thank you. Sorry I did not see this reply before commenting on the other link. IV thiamine will likely be impossible as we are in Nova Scotia, Canada, where healthcare is very, very bad. I might be able to call around to naturopathic offices for private infusion, but they usually only do B12 shots, and rarely ever do IV infusions of anything.

        My next stop is definitely buying your book, but with my husband having missed so much work, and income being uncertain (we are single income), it might be a while before I will be able to.

        Thank you again for responding!

    • I know this is old post, but wanted to add our experience this last month to the comments for future readers. My mother-in-law came to stay with us about a month ago after COVID broke out in her senior facility. At the same time, she became very sick, the day after being biopsied for a skin cancer which was very painful and infected. (We found out later that the skin cancer was full of MRSA.)

      She has all indications of a lifelong thiamine deficiency, including polymialgia rheumatica, for which she receives infusions. She also has had mild episodes of vestitibular issues, which she refers to as vertigo.

      Because she was sick and severely fatigued for no apparent reason (we did not yet know about the MRSA ), I started her on my family’s routine of liposomal vitamin C for any possible infection and just 50 mg allithiamine for energy deficiency. I might have gotten cocky and given her two capsules a couple of times like my family takes daily; I am not sure. She did great the first few days of this, and was much better, but then the dermatologist’s culture came back showing a heavy concentration of MRSA under the squamous cancer they had biopsied. They prescribed an antibiotic.

      She began doxycycline, and after a couple of days of it began to experience severe vertigo. We thought it was a reaction to the antibiotic, so called the doctor and they changed her to rifampin. I continued the thiamine, and the vertigo got worse, even waking her in the night. We went to the ER—the doctors were worried about a systemic MRSA infection at this point—but there was no systemic infection. She had, however, developed a pretty severe UTI. And the doctor added another antibiotic—Keflex—to handle that.

      She continued these antibiotics through the full course of each, but I stopped the thiamine. And after stopping the thiamine, the vertigo has slowly gone away. So this morning I searched this forum for a connection between thiamine and vertigo, and I now think she was experiencing refeeding syndrome.

      I know there really isn’t any way to know for sure. I will work with food for awhile to try to rebuild her strength, and will still include a low-dose nutritional supplement. But it seems that in older people, as Dr. Lonsdale said in the above article, refeeding syndrome can be very tricky.

      Just wanted to add my story here for others who might read!

      • What were the symptoms that you claimed to be those of “a lifelong thiamine deficiency”? If this was indeed refeeding syndrome, it needs the low dose thiamine to continue until the symptoms begin to improve.

  15. How effective is thiamin in the treatment of fluoroquinolone toxicity? I just started taking it for peripheral neuropathy. I am experiencing an increase in some prior symptoms, but also felt relief from the burning. Are these symptoms also refeeding?

  16. Dear Dr Lonsdale,

    I just wanted to take a brief moment to thank you for your work and the time you invested in order to try to heal as many people as possible.

    I am on week 2 now of using 50mg lipothiamine right now, and alltough it does not make me feel awake like benfotiamine, it luckely also does not make my resting heart rate go from 52 to around 100.
    I have some minor palpitations, but I can deal with that.

    What I find interesting is that when I also take nicotinic acid at doses of 50mg, it seems as my ability to concentrate and follow conversations is improving, which was one of my current main issue along with generally worsening of my memory.
    I do not have the same effect with nicotinamide.
    Hopefully it will continue to improve, looking forward to increase the lipothiamine soon.

    Thank you and Chandler Marrs again for your work.

  17. What is a brand/type of very low dose thiamine that you recommend? I feel AWFUL when I supplement a single 50 mg pill of Ecological Formulas Allthiamine. I’d like to start at a lower dose. Do you have any recommendations? I only see 50 mg doses for allthiamine. I’m fine with trying another type, but I’m not sure which to try. Thank you.

      • Dr. Lonsdale, if one does not experience paradox after taking 50-100 mg Lipothiamine daily for several months, can we assume there was no deficiency to begin with? If so, is it still worthwhile to continue taking those doses preventively?

  18. Hi Dr. Marrs,
    I listened and read about Thiamine. I’ve had mood ailments and life-long fatigue that I have related to my allergies to multiple environmental and food sources. I tried upping my thiamine in the form of Sulbutiamine to six capsule a day. Wow. I’ll admit I’ve been looking for a magic bullet and this is the closest I’ve come. One question: Is this some kind of genetic variation that would cause this? I have eaten very well and lived a healthy wholesome life. I want to let my kids know if this is genetic. I have had problems all my life.
    Thanks,
    Nanette Fynan

    • There are a number of what are single nucleotide polymorphisms (SNPs) in thiamine transporters (solute carriers), that impair thiamine transport and they are more common than most folks recognize. Also, medication and vaccines all damage the mitochondria by one mechanism of another. Some directly block thiamine transport and others damage/block other pathways that necessitate more thiamine. The end result is that many folks are barely thiamine sufficient and just one stressor away from deficiency.

  19. I also have a question about the study you did where 8 out of 10 autistic children had clinical improvements from TTFD. The paper says that only 3 out of 10 exhibited thiamine deficiency at the beginning of the study. Do you think that’s because the transketolase test didn’t pick up all the cases of thiamine deficiency, or because the TTFD might have been doing something in the body other than just fixing a pre-existing deficiency?

    (Thank you so much, by the way, for all the work and writing you’ve done about thiamine. I came to read it after learning about thiamine from Susan Owens on the Trying Low Oxalates group, and it’s been such a blessing to me and my family.)

  20. I had two very young children who exhibited definite negative side-effects from thiamine supplementation, which looked very much like their symptoms of oxalate “dumping” from other nutrients / dietary changes. One was just 10 months (he was fully breastfed with no solids) and had those side-effects from me starting to take B1. The other child was 3 years old. The older one had lots of ASD characteristics and both had evidently had a lot of problems since birth, including many B1 deficiency symptoms. At the time we started taking B1, we were eating a diet high in white rice, and supplementing B6 and biotin but (stupidly) not other B vitamins so I think our thiamine deficiency was pretty substantial. Testing showed that the older child was virtually in ketosis despite a high carbohydrate diet, which I believe to have been due to the thiamine deficiency.

    The negative side-effects were, however, short-lived (less than 24 hours if I remember rightly) and followed very quickly by big improvements in behaviour, mood, speech and muscle tone among other things. I know of other very young children who have had oxalate “dumping” symptoms from B1, but they might be the minority as many of them were children with ASD type problems.

    My family have had a couple of years of not taking supplements, and I have again seen temporary negative reactions in my children from taking B1: both still under the age of 10. I suspect this time that part of the problem might be increased need for accompanying nutrients, since I noticed improvements first, then negative effects afterwards, whereas previously it was the other way round. I am giving the other B vitamins and magnesium, but there might well be another nutrient involved. I’ve found that for myself and one of my children, taking B1 seems to create a need for more taurine (which is interesting since I know you’ve recommended magnesium taurate alongside B1).

    • Hello. I am 34 and I live in Ireland. Was diagnosed with POTS lupus and what my endocrinologist refers to as HPA axis issues for which there is no treatment. I dont know what that is. I’ve tried everything except b1. Would it be worth my while to start this for this HPA axis thingy? POTS I treat with salt and lots of water. Which sometimes makes me dizzy for some reason. and lupus is pretty much under control. Thank you.

      • When I read your post I think Ehlers Danlos syndrome or some other connective tissue
        defect could be present. I doubt the salt and water makes you dizzy as such; it possibly just brings it to light. Salt (liposomal) vitamin C and a few aminos help this.

        But vitamin B 1 would treat your symptoms from a more fundamental viewpoint – via the nervous system in particular. We’re getting very promising early results in treating POTS and many neurological abnormalities as well as possibly connective tissue defects with B1 as lipothiamine, the derivative. There’s a new brand available in the UK- Thiamax. The best only really good place to get advice on all this is this website and the book by Drs Lonsdale and Marrs.

        Good luck
        K Beauchamp Australia

      • The salt making you dizzy is something I am also dealing with. From my reading what I have come to is it maybe related to Menieries disease. People with this also cannot tolerate salt and have to limit their sodium intake.

      • Add 125-250 mg of magnesium taurate and a multivitamin. Salt losing syndrome is one of the dysautonomias and results in a craving for salt.

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Previous Story

Thiamine Deficiency Gaining Recognition: New Book

Next Story

Thiamine for Fibromyalgia, CFS/ME, Chronic Lyme, and SIBO-C

Latest from Family Health