In May 2020, I experienced my first symptoms with what I now believe to be thiamine deficiency (beriberi). I believe other nutrient deficiencies played a role as well. This was preceded by an especially difficult several months that included a marital separation and possible COVID infection. In addition, I experienced a mild head injury during this time when my son and I accidentally collided while picking up toys together. I have a history of traumatic brain injury, so am susceptible to post-concussive syndrome from mild head trauma.
It was these factors that precipitated the downward health spiral that first began in May 2020 when I was 38 years old. Prior to this time in life, I felt my health to be good. I had gone through some very challenging mental health struggles in the past, a TBI and post-concussive syndrome, as well as a few other issues related to physical health, but for the most part, I would have considered myself to be a fit, healthy, and resilient person. I consumed a paleo diet, which I thought very nutritionally dense, and I exercised regularly. However, looking back on my history suggests risks for thiamine deficiency. Here are some factors that are part of my overall health history:
- Five pregnancies and nine years of breastfeeding with very little multivitamin supplementation
- Former short-term fruitarian and vegan diets for purposes of detoxification
- Former sporadic heavy binge drinking from age 15 to 33
- Former tobacco smoker from age 15 to 33
- Consumed extreme amounts of candy as a child
- Overdosed on pills three times between ages 15 and 17. The third overdose involved Serzone, which has a warning for liver damage
- Was prescribed antibiotics at least 75 times from age 5 to 33 for chronic UTIs and bronchitis
- Prior health problems: chronic urinary tract and kidney infections as a child and young adult, chronic bronchitis as a child, candida overgrowth, digestive problems, insomnia, anxiety, depression, PTSD, and depersonalization disorder
In May, the combination of stressors, along with likely longstanding nutrient deficiencies, precipitated a rapid downward spiral leading to multiple hospitalizations, and ultimately, what I believe was severe thiamine deficiency. At its worst, I believe I was headed toward Wernicke’s encephalopathy and heart failure. Since the best physicians could offer was Ativan, antidepressants, and a presumed multiple sclerosis diagnosis (despite a lack of evidence), it was up to me to save myself, particularly because I am a parent to five children. Through extensive internet research, I learned about thiamine deficiency and began to treat myself. This is my story.
Rapidly Disintegrating Nerve Function
The first symptom I remember experiencing was a strange tingling in the center of my chest upon standing. The next symptom was flank pain. I thought perhaps I had a kidney stone and made an appointment with my primary care. During this time, I was also intensely tired in a way I’d never been before, very pale, anxious, uncharacteristically irritable, shaky, short of breath, thirsty, lost weight, and became sweaty at random times.
At the appointment with my primary care, it was decided I would get an ultrasound of my kidneys to check for kidney stones. I didn’t make it to the ultrasound appointment because that same day I stood up after a nap and experienced sudden debilitating chest pain that felt like I was having a heart attack. It started in the area of my heart and moved to my left arm and up to the left side of my neck. I called an ambulance and was taken to the emergency room. They ruled out a heart attack and proceeded with the kidney ultrasound after I shared with them the other strange symptoms I’d been experiencing. Nothing of significance was found on the ultrasound, and I was sent home.
Shortly after that incident, I started experiencing numbness in my legs at random times during the day and night, as if they’d fallen asleep. I went into the ER again after a particularly intense experience of numbness where I felt uneasy about even standing to walk. Again, nothing was found, and I was sent home. My arms began to go numb at night while in bed, in addition to my legs. I’d wake up to this numbness, and shortly thereafter I could feel the numb sensation in my head as well.
I began to experience gastroparesis, and my intestinal motility seemed frozen at times but then would go into overdrive during the night, requiring urgent bowel movements in the middle of the night, which was not normal for me. At the same time, I could feel the sudden rapid digestive motility, I could also feel the blood flow dropping from my brain. As soon as I’d have a bowel movement, the blood flow would return to my brain. These sensations were all so strange and unnerving and unlike anything I’d previously experienced in life.
Loss of Consciousness, Compromised Speech, and Vision Changes
I went to an acupuncture appointment and shared with the practitioner what was happening. She treated me for yin deficiency. That night I woke to use the bathroom, and on the way back to my bedroom, I nearly lost consciousness for the first time. It was a terrifying experience. My ability to speak was compromised, and I tried to communicate to my daughter what was happening, but my voice was in slow motion. My vision was growing tunnel-like and dark. I thought I was having a stroke. My daughter gave me my phone, and I called an ambulance and was able to very slowly articulate what was happening as I lay on the floor, wondering if I was going to die. I was taken on a stretcher to the ER, and the diagnosis from that trip was that I’d had a panic attack. I was given Ativan and sent home. I knew that a panic attack was not the correct explanation, although I was indeed in a state of panic over my current health. I felt very strange, with strange sensations throughout my body and brain, severe anxiety, erratic heartbeats, and tachycardia.
Things grew progressively worse over the next couple days, and my mother drove me to a better hospital four hours away to hopefully get answers. By the time we arrived, I could not walk due to the total body numbness. I was given a neurological exam and had no reflexes in my knees, ankles, and feet. I was then given two bags of IV saline and felt relatively normal a few hours later. Many labs were done, but no nutrient levels were checked. I was kept overnight and examined by a neurologist, but I wasn’t experiencing symptoms during the exam. It was found that my blood sugar was abnormally low during the night (65), and I was told to improve my nutrition and sent home with no real answers.
Was it B12 Deficiency?
I started taking a B complex and multivitamin and tried to eat as healthy as possible, but during the following weeks, I continued to experience near syncope, dizziness, cardiac and GI issues, strange body sensations, and severe anxiety. I’d have pockets of time where I felt relatively normal, but symptoms always returned, and night numbness was a regular occurrence. I often felt ataxic, like I was about to lose my balance or fall. My hearing seemed to change, and my right eyelid began to twitch relentlessly. Nerve pain began in my joint junctions and felt like sparking, electrical, stinging sensations. Over the course of several days, these nerve pains began to affect the base of my spine and slowly moved up my spine to my head. It was a very painful and frightening experience.
When researching symptoms, I came across information about B12 deficiency and wondered if that is what I was dealing with, so I asked my naturopath if he would prescribe methylcobalamin that I could inject at home, and I began daily B12 injections. The nerve pain resolved after a few weeks, which was a tremendous relief. As a result of this resolution, I believed a B12 deficiency to be at the root of my problems. I continued with B12 injections after the nerve pain healed but dropped down to once weekly injections.
Another Hit to My System
Shortly after the nerve pain resolved, I got very sick with a Campylobacter infection. It was strange because no one else in my family got sick, and we’d all been eating the same meals. I went to the ER after several days of relentless diarrhea and high fever. I was given fluids and my stool was tested, which revealed the Campylobacter bacteria, and I was prescribed azithromycin. In hindsight, I wish I’d not taken the antibiotic because I believe it made my condition worse.
After the antibiotic, I felt like I was in a permanent state of semi-consciousness. I felt hypoxic, like I was being asphyxiated. When I’d start to fall asleep, I’d wake up with a jolt because it felt as though I were falling and losing blood flow to my brain. I had constant high-pitched ringing in my ears. Life became a total nightmare. My arms and legs were swirling with strange sensations I’d never felt before – paresthesias and cramping muscles. My heart was in a near constant state of palpitations with alternating bradycardia and tachycardia. When I’d roll from one side to the other in bed or stand up, my heart rate would go from 40s and 50s to 120s and 130s. It felt like my heart was constantly pounding, no matter if the rate was slow or fast. The sound was audible to me day and night, and the pounding seemed to shake my entire body. Sometimes it felt like my heart would stop for an abnormally long amount of time, then sluggishly start thumping again. I would wake up in extreme pain on whichever side I slept on. I recall using my finger oximeter one night and getting a reading of 84% oxygenation.
Maybe Multiple Sclerosis?
During this time, several doctors suggested I might have Multiple Sclerosis (MS). I had an MRI of my brain that showed no lesions, so MS was ruled out. I was eventually diagnosed with POTS by the medical community. I researched POTS and saw that extra salt was often helpful for minimizing dizziness, so I started adding salt and electrolytes to my water. It did seem to help some, so I began drinking about a gallon of water a day with 2-3 extra teaspoons of Celtic or Pink Himalayan salt and added electrolytes.
In late September 2020, my POTS symptoms resolved. My heart had normalized, and I was no longer dizzy or experiencing near syncope, but I was left with “stocking and glove” peripheral neuropathy. I had numbness from my feet up to my calves and numbness in my hands and forearms. I was relieved that the POTS symptoms were gone and felt I could tolerate the numbness and paresthesias. I still felt very weak and struggled with bacterial infections in my ears and sinuses as well as cold intolerance.
Discovering Thiamine Deficiency
Life continued this way until early November, when I decided to try R-Lipoic acid for the peripheral neuropathy and occasional spinal pain and tingling that periodically occurred. This was a devastating mistake. I ingested the first capsule in the morning and second in the evening, and within an hour of the second capsule, nerves all over my body felt like they were on fire. The only thing I’d changed that day was the lipoic acid, so I started researching contraindications to lipoic acid online and found that thiamine deficiency was a contraindication. Lipoic acid and thiamine work in tandem in the Krebs cycle, so by adding one with a deficiency of the other, it creates a draw on an already almost empty tank. In one study, when thiamine deficient rats were administered alpha lipoic acid, it created a toxic reaction. Unknowingly, I’d taken a supplement that made my situation go from difficult to much worse.
I then looked up thiamine deficiency symptoms and recognized my experience immediately in beriberi disease. I found the website, Hormones Matter, run by Dr. Derrick Lonsdale and Dr. Chandler Marrs. I began reading through the information and stories, and my belief that thiamine deficiency was the root of my problems grew stronger. Dr. Lonsdale suggests using a type of thiamine called Allithiamine (thiamine tetrahydrofurfuryl disulfide), as it crosses the blood brain barrier superior to other forms of thiamine. I ordered a bottle and took a large dose of thiamine hydrochloride I had on hand before going to bed.
I didn’t sleep well that night. My nervous system felt like it had been severely damaged. I was shaking, my heart was once again beating erratically with tachycardia upon movement. The nerve pain was intense and spread throughout my entire body. The next day, I went for a short walk and nearly blacked out. The muscles in my legs were painfully cramping. I had no energy. I couldn’t even read. I went to bed that night feeling like I had a head injury.
Each day was progressively worse. I was taking thiamine hydrochloride and benfotiamine every couple of hours, but it didn’t seem to be stopping the downward spiral of symptoms. I felt like I was going to collapse. My brain was not functioning well. I was nauseous and had severe GI distress. All the symptoms I had experienced before, in addition to many new symptoms, manifested again in rapid succession. I went into the ER and attempted to explain that I believed I had a severe thiamine deficiency, hoping I would be given IV thiamine, but I was only handed a thiamine tablet, given some IV fluids and sent home.
Five days went by, and the Allithiamine arrived in the mail. By this point, I was vomiting, could barely walk, and felt like I had a traumatic brain injury. I took one 50 mg capsule and felt relief of the extreme brain injury sensations within half an hour. Encouraged, I continued to take a 50 mg capsule each time I would start to decline. The nerve pain lessened, I stopped vomiting, and my heart rate somewhat normalized, but the most profound effect of the Allithiamine was in reducing the intense brain injury sensation.
I’ve experimented with dosage and arrived at 100 mg every two waking hours being the most effective for keeping most symptoms at bay. In addition to the 100 mg of Allithiamine, I also take 150 mg benfotiamine and 50 mg magnesium glycinate every two hours, a daily high dose B complex, multivitamin, phosphatidylcholine, ubiquinol, digestive enzymes, probiotics, and fish oil. Five weeks out from taking lipoic acid, I still experience constant moderate nerve pains all over my body, problems with bacteria (eye infections, ear pain, sinus infections, sore throat), mild tachycardia upon sudden movement, pounding heart, random sweating, high fasting blood glucose (between 110 and 120), shakiness, dizziness, anxiety, weakness, and exercise and cold intolerance. The Allithiamine and benfotiamine have improved my brain function, nerve pain and paresthesias (from severe to moderate), digestion, and my ability to sleep, and I’m hopeful that with time I’ll see more improvements.
Recovering But Disillusioned With Modern Medicine
I believe the work of Dr. Chandler Marrs and Dr. Derrick Lonsdale and supplementing with Allithiamine saved my life. I believe I was headed toward Wernicke’s encephalopathy or high output heart failure before taking Allithiamine. My quality of life is currently very poor, but I have hope that recovery from beriberi and mitochondrial damage is possible. Some damage may be permanent, but I see small improvement each day, which indicates to me that more improvement is possible.
I wish so much I’d found the Hormones Matter website earlier in the course of my disease, as I’m certain things could have been more easily reversed. I hope that others might benefit from my story and avoid the horrendous decline that I experienced. Just by taking such a simple nutrient as vitamin B1, so many devastating health consequence can be avoided. Why don’t more doctors have awareness of this?
I am disillusioned with the medical community in not identifying my illness despite dozens of trips to the ER with comprehensive symptom lists in hand and visits to internists, cardiologists, and neurologists with detailed descriptions of my ailments. No one ever checked my nutrient status beyond vitamin D, iron, and zinc levels, and B12 and folate at my request. I was treated as though I had an anxiety disorder and offered anxiety medication and antidepressants.
How is it that in 2020, the only thing that comes to mind for the medical community when presented with complex neurological symptoms is MS? Time and time again, I was told I likely had MS, but my MRI clearly showed I did not. Beriberi is a well-documented condition that’s been known for hundreds of years, yet the medical community doesn’t consider it other than Wernicke’s encephalopathy in alcoholics. I hope this can change. Awareness needs to grow. I know there must be many others who have experienced similar symptoms to my own and sought help. We deserve better medical care in what is supposed to be among the most technologically advanced countries in the world. Until and unless things change, websites like Hormones Matter serve as beacons of hope. I am profoundly grateful to the work of Dr. Chandler Marrs and Dr. Derrick Lonsdale.
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I was very surprised at first when I figured this out! I started face planting on to my drawing table in my studio after lunch or (sweet)snack so my research started there and revealed insulin resistance/metabolic syndrome or pre diabetes with nonalcoholic liver fatty liver disease. This after years of weird symptoms and being told by my doctors that they just didn’t know what could be wrong with me, labs were all normal. I gave up on medicine and continued on my own. I now adhere to the keto with intermittent fasting diet and it’s working, albeit slowly. My subclinical beriberi is responding to benfotiamine and I’ve taken ala for years. Lugols iodine is clearing up my skin, and 100k of daily vitamin d has worked miracles. Over the last two years I’ve had unbearably painful neuropathy, the loss of nearly all of my head and body hair and very painful and itchy skin, all starting to improve. I’m thrilled, to say the least. I was so very pleased to discover this site, thank you.
My doctor thinks I may be just recently
exhibiting BeriBeri symptoms, but I have been supplementing with 10-20mg of thiamine for months. Is it possible to have Beri Beri even if I’ve been taking thiamine for a long time now? I also have lyme, mold poisoning, high viral load, etc., so my symptoms may be due to that and not a thiamine deficiency. Thanks for the help!
Hi Jane,
What are the symptoms your doctor believes to be related to beriberi? From my understanding of thiamine lab testing, particularly with regard to B1 plasma levels, one can have normal or even high levels but still have a functional deficiency, meaning that thiamine may not be reaching the cells in sufficient levels. This can be due to a variety of factors, such as cellular transport issues, functionally higher need for thiamine, genetic issues, excessive use of diuretics, exposure to thiaminases (compounds that destroy thiamine), other B vitamin imbalances, lack of needed thiamine cofactors (magnesium, potassium, taurine, B vitamins, especially B2, and B3, and if taking the TTFD form of thiamine, optimal glutathione levels and sufficient methylation capabilities are critical). A functional thiamine deficiency is best determined by a positive response to thiamine. Too much thiamine can also have a paradoxical effect of creating nervous system problems. Have you tried going up or down on your dose to see if that changes your symptoms? A better, but also imperfect lab for checking how thiamine is performing in the body is called TDP (thiamine diphosphate) with liquid chromatography, also known as whole blood thiamine. Has your doctor ordered this for you?
My story is so identical – including the ALA -reaction – that I won’t start listing similarities.
I’m bewildered, however, that I’m left dealing with this alone. I’m medicating on a similar schedule to Therese’s, guided by symptoms and at the moment at 100 mg allithiamine every 3 waking hours. Including random Mg+, K+ and B complex supplementation which don’t seem to have an effect but I recognize the importance.
I’m completely shooting blind. I have no idea what to expect in the future. I’ve been told repeatedly by my primary care doctor to stop supplementing with B1 with such insane amounts, and I’m being offered Xanax and Ativan instead.
I found this blog three months ago after which I immediately got allithiamine and began treating myself. I’ve improved vastly and I’m no longer considering I’m in imminent danger.
I’m devastated however, that if I skip thiamine for a day, I plunge back into dysautonomia. I can never explain this at the doctors’ office and I think I’m in danger of running into some kind of mineral/vitamin imbalance since no one is doing any labs.
I’m a new resident in USA and it completely blows my mind that the health care providers are my worst enemy here.
My heart truly goes out to you, Fanny. I feel the same – my doctors have often felt like my worst enemy. I don’t even bother sharing much of what’s going on anymore and have changed my approach to simply “playing their game” in order to access some things they are willing to provide me, such as IV hydration through the infusion center, referrals, and basic lab panels. It’s so demoralizing that my medical expenses over these past months have likely been in the half million dollar range (thank goodness I’m fortunate enough to be covered by Medicaid) and have amounted to virtually nothing. What a system!! I feel cynical and disgusted with modern medicine as it is currently practiced in this country. If one doesn’t take matters into their own hands, I think a person with complex health needs is more likely to end up sicker or possibly even dead rather than helped. In a world that makes sense, what is presently being passed as the practice of medicine is equatable to criminal negligence and sometimes downright iatrogenic crisis.
Last week I met with a functional medicine doctor in a city two hours away. I feel fortunate to have found a functional medicine practitioner in Montana, a low population and conservative state. I am paying out-of-pocket (made possible by the generosity of my family) for his services and many of the labs he ordered. The stark contrast between the care he provided versus the care I’ve received previously is profound. He spent three hours with me, taking a very comprehensive health history and doing a thorough physical exam. He couldn’t believe the neurologist I saw months ago failed to do some of the basic exams he did, showing I have vastly reduced vibration and light touch sensation in my legs.
I am hopeful that he can help guide me through this healing process, as I also feel like I’m shooting in the dark, playing guessing games with dosages and supplements, diets (paleo, autoimmune paleo, low-oxalate, etc), lifestyle choices (exercise versus rest), and a myriad of other life decisions that never seemed so potentially fraught with risk before getting sick.
I hope we can continue to find strong and supportive community among one another on this site. I think we are one another’s best resources, beyond the template altruistically provided by Chandler Marrs and Derrick Lonsdale through their work and this website.
Therese I don’t even know what practitioner I should try to find. Maybe the functionalist medicine like you.
I was previously a strong proponent of traditional medical approach and I find it hard to trust people I previously lumped as quacks. I feel like vitamins and nutrition need to be used as medicine, but I’m unwilling to hop on some bandwagon trusting blindly to the practitioner.
The past month I’ve seen so many different “schools” out there. It makes me dizzy to think what all I should do, on my own, without labs. Just start slamming some protocol, recommended by some internet rando? No way.
The only thing that’s been consistent, is that thiamine has an immediate positive response. The rest is just noise to me now. And that feels like a very thin ice to skate on.
I also feel bad trying to verbalize any of this. In an office setting it’s even worse because English is my THIRD language and I have thick accent. I’m not understood well.
Writing is safest.
Who to trust is a real conundrum. I’ve seen the gamut of medical practitioners, from neurologists, a cardiologist, internists, acupuncturists, massage therapists, a cranial sacral worker, a regular MD, two PAs, a naturopath, and now the functional medicine doctor.
I’ve found the more specialized and educated medical care has been useless. The neurologists did nothing for me, the cardiologist offered Fludrocortisone to treat POTS and propranolol to treat tachycardia (both of which I refused), one internist did nothing at all for me beyond telling me that drinking so much salt and water was dangerous, and the other internist wanted to refer me to Mayo Clinic but then disappeared from her practice without notice. The MD regularly offers me antidepressants, refused to test my thiamine levels, and refused to run most of the labs I asked for.
I’ve had far more luck with the less specialized medical practitioners. The PA I had been seeing for eight years prior to becoming symptomatic was excellent about making referrals and running all the labs I asked for, but once the symptoms began to rapidly multiply, she wanted me to be seen by an MD, as she felt out of her area of expertise. Losing her was unfortunate. The other PA I saw was recommended to me by a friend. She runs an independent clinic and is fantastic, but limited on what she can provide or feels comfortable providing. She has been amazing for IV vitamins and IV thiamine when I was in dire straits after the ALA incident, but was nervous about the amount and frequency I requested. The amount she uses in her IV vitamin cocktail is far less than what we need. There’s a common misconception I’ve encountered that B1 can be toxic in high doses, which isn’t the case, but yet another impediment to getting the care we need to heal properly.
The acupuncturists have been excellent for providing temporary calming of the nervous system and reduction of nerve pain. I wish I could afford acupuncture on a daily basis because it works so well to reduce the pain and creates a feeling of calm. The cranial sacral work was not helpful, and massage therapy can be temporarily calming but not worth the cost, in my opinion. The naturopath I see really wants to help but has no experience whatsoever treating thiamine deficiency. He prescribes me thiamine hydrochloride intramuscular injections, 100 mg three times daily. I haven’t found these more useful than the thiamine hcl, benfotiamine, and allithiamine I take orally, and the injections are quite painful, so I generally don’t do them but have been stockpiling the vials in the case I find someone willing to add them to an IV for me.
The functional medicine doctor I recently saw is an internal medicine specialist that grew disillusioned with the process of seeing a patient every 15 minutes and not really being able to help any of them, so he went to Cleveland Clinic’s Institute of Functional Medicine and started his own practice. If you can find one in your area, it may be better than your current situation. They are generally trained in allopathic medicine and also have a nutrition-based focus. It’s a blending of allopathic and naturopathic medicine, in a way. Cleveland Clinic is a big teaching and research hospital, similar to Mayo, and they developed functional medicine as a solution to a percentage of patients not responding to conventional treatment, from what I understand.
Fanny, if you’d like to communicate more, you’re welcome to email me at theresecturner@gmail.com. I’m happy to connect with anyone looking for support. This is the hardest journey I never imagined being on, and it’s made bearable through supportive friends and family. Finding people that understand what we are going through and can offer ideas about what’s worked versus not helps tremendously!
Therese thank you – I took your email addy and you should delete that post so you don’t put your privacy at stake.
Hi Fanny,
Thank you for your thoughtful concern regarding my privacy. I’m truly comfortable with publicly posting my email because I want for anyone who reads these posts to be able to connect if they desire.
Therese,
Thank you for sharing your very descriptive, well written story, which is much like my own. I am grateful you’ve reached out to me. We can learn so much together, comforted, knowing we are not alone. Like me, you also have Lonsdale and Marrs to thank for thiamine deficiency awareness. They have taught me so much about my own beriberi disease. Perhaps our stories can help others, especially more doctors become aware of the multi organ system symptoms of this awful disease. It’s made me so aware of it’s milder symptoms, which noticing them earlier seems critical in preventing further mitochondrial breakdown. I hope together, we can help others detect the symptoms sooner, preventing long standing thiamine deficiency, which is much more challenging to correct. Nine months into my high dose thiamine drug therapy, I am reversing most of my symptoms but I realize it will be a life long journey for me now. I hope to prevent it in my future generations. Both daughters are studying with me for their families too.
Looking forward to speaking with you soon!
Jane Finn ❤️??
Thank you, Jane! So grateful for our budding friendship and support in this healing journey.
Wish we could get a thiamine focused venue. The facebook group is all over the place and while they’re all on a quest of their own, it muddies the water for me.
This is an important post because the symptoms are well described. Apparently the symptoms that were finally depicted as beriberi began in May 2020. However, there is a medical history that suggests that she was mildly deficient in thiamine throughout life. She describes marital separation and a bout of Covid-19 that preceded the onset of her May symptoms, suggesting that the stress converted a mild deficiency to a more severe one. She also had a history of binge drinking and smoking, and excessive candy as a child, all of which can lead to thiamine deficiency. Few physicians are aware that stress, which includes infections, brain trauma and prolonged worry are all capable of precipitating thiamine deficiency in the brain and thiamine ingestion is obviously highly dependent on the nature of diet. It is interesting that she was diagnosed as multiple sclerosis on many occasions and I have treated this disease with megadoses of thiamine. She began the severe beriberi symptoms in May and I want to emphasize them. She describes severe fatigue and an acupuncturist told her that she had “yin deficiency”. This accurately describes the imbalance in the autonomic nervous system that is the heart and soul of beriberi. She describes a blood sugar as low as 65, symptom improvement with B12, and a worsening of symptoms with B complex. She describes a rapid heartbeat alternating with a slow beat and an oxygen saturation of 84%, all typical of beriberi She describes stocking and glove anesthesia, the typical limb anesthesia that occurs in beriberi. She mentions a diagnosis of POTS and an improvement by taking salt. Salt wasting syndrome and POTS are typical variants of dysautonomia. Note the fact that she became markedly worse by taking lipoic acid, but this would not have occurred if she had been taking thiamine at the same time. I was interested to see that she described part of her recovery as “like recovery from a head injury”. She also describes vomiting without realizing that that is also a symptom of thiamine deficiency. Finally, she describes a severe paradox as she began with thiamine.
So, putting this all together, I want to emphasize that thiamine deficiency causes a huge number of symptoms, none of which enable an alert physician to make a diagnosis of beriberi unless he is conversant with them and understands this. Unfortunately, the American medical profession has a rooted concept that thiamine deficiency or any other vitamin deficiency simply does not occur in America because of vitamin enrichment by the food industry. You cannot cure beriberi without thiamine, although other members of the B complex are just as necessary. This is because it produces a breakdown in cellular energy production, which is particularly devastating in the brain. B12 is activated by consuming energy. In other words, we have to make energy (an engine) and consume it (a transmission).
Perhaps the reader is coming to the conclusion that if all this is necessary to understand the principles of both health and disease, our present medical model is a disaster. Terese Turner’s story is unfortunately extraordinarily common and we have seen many similar stories reported on Hormones Matter. It requires much better training of the physician in medical school, with a firm recognition of the exquisite relationships between genetics, stress and nutrition. Although there are genetically determined diseases, most health disasters are a combination of all three.
For those interested in further education in this area I recommend looking up the work of Hans Selye who described human diseases as “the diseases of adaptation”. He studied stress in rats by Inflicting many types of injury and came to the conclusion that their defense followed a characteristic pattern that he referred to as “the general adaptation syndrome”. He called human disease “the diseases of adaptation”.
A question for Dr. Lonsdale, or for anyone who might have an idea: if the initial reaction to the thiamine HCl was indeed paradoxical, why then was it relieved by swapping to allithiamine? Should that not have also continued to cause a paradoxical response? Both the HCl as well as the allithiamine seem to have been dosed relatively highly and both, for that reason alone, should have triggered paradoxical reactions, no?
The fact is that our explanations of paradox are theoretical and have not been subject to research, so nobody can answer this question.
I do wonder whether the seeming ‘paradoxical’ reactions are simply a body starved of one or more essential nutrients, finally getting what it needs & going berserk as it is trying to deal with so many issues that have resulted from the deficiency/ies. Eventually, once it has established that the supply is now stable, it may then calm down & start to deal with the deficiency issues in a more regulated manner.
At one point I was on a diet that included all the vitamins & a few minerals as supplements. Although I had been taking 100mg of B-complex for a while, I was advised to add an extra 200mg of Thiamine HCL. My body went berserk. I had to cut back to 50gm & increase over a week or two. I had the weirdest symptom. My muscles kept popping & twanging spontaneously. It did cam down eventually, but was odd whilst it lasted. Maybe it was clearing calcium deposits, who knows?
The muscles popping and twanging sounds like me. I’m taking 1200-1800mg of benfotiamine and I am getting back to the energy levels I had as a kid.
I’m 23 years old. God knows what I had done to myself to get this kind of mitochondrial dysfunction.
I think it is related to mineral homeostasis or CNS function being ramped up but there isn’t much literature on the subject, just theoretical based on the mechanism.
I recently read the amazing story of the treatment of Parkinson’s disease by Dr Costanti in Italy. He started his patients on low dose thiamine HCl and gradually increased the dose until he reached the “right dose” for the patient. What surprised me is that giving the vitamin complement could actually disguise the response to thiamin. This is a completely new approach, because he is using thiamine as a drug and at least in PD it has nothing to do with vitamin deficiency per se. It badly needs research but in the meantime, please remember that you are not just replacing a vitamin. You are stimulating the body to produce ATP, the energy currency that is a necessity to every cell in the body. That means that thiamine might become a treatment for all disease if Dr Hans Selye was right. Selye’s work has been discussed on this forum.