Refeeding syndrome in thiamine deficiency

Refeeding Syndrome in the Context of Thiamine Deficiency

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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.

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Derrick Lonsdale MD, FACN, CNS

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.

21 Comments

  1. 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!

  2. 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?

  3. 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.

  4. 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?

  5. 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.

  6. 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.)

  7. 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.

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