Here is the story of my longstanding thiamine deficiency, which was not recognized by doctors. I am 54 years old and have had health issues most of my life.
Early and Prominent Orthostatic Hypotension Missed for Decades
Around the age of 10 or so, I began blacking out upon standing. It never led to syncope — just a brief dizziness and loss of vision. A particular church practice at school caused me to black out often. Lots of kneeling and rising — a great challenge for what would be later diagnosed as orthostatic hypotension. I sometimes had to be led out of church by a fellow student and taken to the school nurse. A friend reported to me that on those occasions, as I was being led out, even my lips were white.
In my teenage years, another challenge was orthostatic intolerance. I would get dizzy and feel light-headed if made to stand a long time. Hot, crowded buses were a particular nemesis: I would black out and feel on the brink of fainting. It was mortifying to be an 18 year old who had to request someone older give up their seat to me because I felt faint. I used to pray before I got on a bus.
During these years, heart palpitations were also a constant issue. It was a way of life for me — my “normal.” I didn’t find out until years later that not everyone experienced violent heart pounding upon climbing a set of stairs. Abnormal sweating was a problem, too — I sweated profusely from the underarms, but nowhere else. Exercise would make my face red and hot — I would get terribly overheated and feel unwell, because my body wasn’t able to sweat and cool itself.
All of these things point to a malfunction of the autonomic nervous system, but I didn’t know that then, and no doctor seemed to put it together, either.
The lower part of the brain, the brainstem, controls the autonomic nervous system.
The autonomic nervous system regulates the most basic aspects of living: heart rate, breathing, blood pressure, sweating, hunger and thirst, fight or flight response, etc. It requires thiamine to function properly.
I was also a good deal underweight and never had as much energy as others. I was terrible at sports and was weakly but did well academically and with art.
Mitral Valve Prolapse, Tachycardia and Heart Palpitations: Signs of Dysautonomia
During art school and afterwards, I waited tables to support myself, as well as worked at school to help pay my tuition. The output of energy this required would prove too much for someone deficient in thiamine. Thiamine plays a fundamental role in energy metabolism, so a deficiency is consequential. My schedule overwhelmed me — I dropped out after my second year. (I eventually went back three years later to complete my degree — this is just one example of how chronic fatigue affected the trajectory of my life.)
Somewhere in those years, I was diagnosed with mitral valve prolapse. I remember being astonished that the diagnosis had been missed all these years. I was told it was something I had been born with, so it was surprising that no one had noticed it until I was 22. I now know that mitral valve prolapse is associated with defective functioning of the autonomic nervous system, that I likely had *not* been born with it, and that this instead was yet another sign of my malfunctioning autonomic nervous system. Mitral valve prolapse is also associated with magnesium deficiency. The pieces of the puzzle were all there — they just needed someone who understood how they fit together.
It was a relief to be out of school and to be able to rest, but my undiagnosed thiamine deficiency continued to affect me. Palpitations and tachycardia were an exhausting way of life. I became good at avoiding things that would exacerbate that, but things I couldn’t avoid — like oral presentations in a literature class I was taking — would so exhaust me as to render me incapacitated the next day. The intellectual rigor of it thrilled me, however. Life continued like that — avoiding many things that a healthy person would be capable of, in order to preserve energy, while making exceptions for certain things I loved — but paying for that with crushing fatigue.
A busy night of waiting tables was now capable of doing me in so much that I couldn’t get out of bed for hours the next day. My description of how I felt at the time was like a broken stick. I later learned that severe thiamine deficiency is called beriberi, which translates to “I can’t, I can’t.” My heart symptoms also became more complex: palpitations and tachycardia, as always, but now chest pain and an occasional flutter, too. I saw a doctor, who recommended I get an echocardiogram. I didn’t have health insurance, so that wasn’t possible.
Decades Later: Debilitating Fatigue and Arrhythmia
I went many years without medical care. At age 44 my symptoms worsened — the fatigue was debilitating and I was now experiencing an arrhythmia. I was able to teach one day a week in an art school, but the energy it required made me incapacitated the next day.
I was also told by a doctor that I should be evaluated for Marfan syndrome, a connective tissue disorder. I twice landed in the ER due to chest pain and a new arrhythmia while waiting for my appointments with genetics and cardiology. When I finally saw the geneticist, I got great news: I did not have Marfan syndrome. I was clinically diagnosed with a related but less serious connective tissue disorder: MASS phenotype, an acronym for Mitral valve prolapse, Aortic enlargement, Skeletal and Skin findings. Though I was relieved by the news, I was also perplexed: why did I feel so awful and fatigued all the time?
My cardiologist had me wear a 30-day Holter monitor, which resulted in him diagnosing me with dysautonomia. Orthostatic hypotension, and also sinus tachycardia, premature ventricular contractions (PVCs), and paroxysmal atrial tachycardia. His first intervention helped me more than any other — he recommended at least 32 ounces of an electrolyte drink daily, along with 500 mg of magnesium. I felt elated — the particular elation of someone long sick who finally feels better. After a while, however, it wasn’t enough, and he prescribed fludrocortisone (florinef). That made my feet swell so awfully that I developed blisters and couldn’t walk.
The cardiologist referred me to an electrophysiologist for my arrhythmia. That cardiologist put me on a beta-blocker. That also caused some milder foot and ankle swelling, but the relief it provided from decades-long tachycardia, palpitations, and an awful constant awareness of my heart was so welcome. It also reduced my PVCs. Again I felt hopeful and thought this might be the solution. It wasn’t. It temporarily and mercifully relieved some symptoms, but it did nothing to determine and address the true cause of my dysautonomia — which was thiamine deficiency. The beta-blocker eventually caused diarrhea. Because it didn’t happen at first, I didn’t associate it with the beta-blocker and neither did my doctors. The bout of diarrhea lasted 5 months. When I finally decided to quit the beta-blocker, the diarrhea ceased.
In the meantime, I was also dealing with a whole array of other issues: GI distress; food intolerances; peripheral vascular insufficiency (which led me to an unsuccessful and unnecessary surgery); chilblains; costochondritis; debilitating menstrual pain; and ever-looming, crushing fatigue.
Hypovolemia and Undiagnosed Thiamine Deficiency Almost Killed Me
At my lowest health point, my undiagnosed thiamine deficiency nearly killed me (via low BP and hypovolemia). I was at a lab getting a slew of blood tests ordered by my immunologist. I had requested that I be permitted to lie down for the blood draw, because I sometimes passed out otherwise. There was no room available for me, so the technician asked if I thought I could manage sitting up. I should have said no: big mistake on my part. I was sitting up in a chair with a kind of shelf clamped across me. I closed my eyes for the blood draw, and after just a short time felt the unmistakable onset of blacking out. I started to lose my vision and asked the technician to unclamp me from that chair so I could put my head between my knees. She seemed to have no grasp of basic medical knowledge, because she refused, saying she didn’t want my head down and to instead try to “stay with her”. I was unable to free myself because I could no longer see. Then I lost my hearing, and that’s all I remember. I fainted. Thank goodness my husband was there in the waiting room. They called an ambulance and then called my husband back to see me. He said I looked terrifying. Completely white, with white lips, and two techs trying to call me to. He told them they needed to put me flat on the floor. Inexplicably, they wouldn’t let him. He acted quickly and dragged a big box across the room and put my feet up on it. That made me come to. For a long time, I had cuts missing from my vision. I later asked my cardiologist if I would have had a stroke if my husband hadn’t intervened. The cardiologist was angry at what had happened and told me not only would I have had a stroke, I would have died.
Putting the Pieces Together: It Was Thiamine All Along
Like all chronically-ill patients, I had to rely on my own research to try to figure out how to improve my health. I first managed to help myself with some orthomolecular interventions. High-dose vitamin c was life-changing. After starting that and taking steps to support methylation, I was finally able to put on weight and muscle. By the age of 51, I was no longer underweight for the first time since early childhood. And I managed to raise my chronically low BP a bit. Fatigue was still overwhelming but then, gratefully, I came upon the research of Dr. Derrick Lonsdale and Dr. Chandler Marrs. I learned about beriberi, thiamine deficiency, and its relation to dysautonomia. I recognized myself immediately.
I read everything I could on the subject before starting to supplement thiamine. Because I had been so long deficient, I knew to expect a paradoxical response. I also knew, per Dr. Lonsdale, that a paradoxical response was a good indication that thiamine might help me. And it has. It has helped me immensely.
I started with thiamine HCL, 10 mg. Even that tiny dose gave me a paradoxical response. My fatigue became even worse, as did my heart issues — terrible palpitations and much more frequent arrhythmia. My ankles were more swollen than they had ever been. I felt shaky, tired, horribly fatigued. It was difficult and lasted about 2 months. Initiating thiamine supplementation in a patient long deficient causes a kind of refeeding syndrome. I continued titrating up my dose, very slowly, while taking supporting co-factors like magnesium and potassium and a b-complex.
Gains Made With Thiamine
- Increased energy in general
- Increased exercise tolerance
- Raised BP by over 20 systolic points: huge gain for me. I am now regularly around 110/70. If I get exhausted by physical activity and/or stress, it drops again. (For years, my BP was around 79/56)
- Heart rate normalized
- Arrhythmia almost non-existent
- No more heart palpitations after eating
- Got rid of the constant awareness of my heart
- Now able to walk rapidly
- My ankles are rarely swollen now. They used to be swollen every day, particularly if I was active that day.
- After 8 years, I no longer need to keep my feet elevated when sitting (cardiologist’s recommendation to counteract swollen ankles).
- I am able to maintain mental clarity even after active or stressful events. Until very recently, I could not think clearly after a day of teaching — used to have to ask my husband to speak slowly and break down complex ideas into simple ones after I taught, because my fatigue affected my cognition. That’s gone now.
- I very rarely get headaches at base of head (used to be almost daily)
- No more costochondritis. This used to be a regular, painful complaint of mine. I was astonished to learn that costochondritis is caused by thiamine deficiency, especially since costochondritis is a common complaint in those who suffer connective tissue disorders.
- I sleep through the night now, even if I was active that day. Until recently, if I was active — and in my limited-energy world, active might mean as little as attending a party — I would have great trouble falling asleep, and then I would awaken in the night after 4 hours of sleep and be awake at least 1 to 2 hours. That’s gone, and good riddance.
- No more debilitating menstrual periods. I suffered enormous pain with my period for over 35 years. Thiamine treats primary dysmenorrhea.
- Joint pain relief
- No more stuffy nose at night when I’m exhausted
- I wake up singing. I report this not as an indication of mood so much as an indication of energy — I simply never possessed the energy required to sing, at least not in the morning.
- I wake up early now. Completely new.
- I’m remembering my dreams again! (Couldn’t recall them for at least the past 5 years).
- I rarely experience the dreaded “jelly legs”.
- I am no longer cold all the time.
- I now am able to sweat more normally.
- Increased my left ventricular ejection fraction (EF) from 55 to 65 percent. Thiamine has been shown to improve EF in heart failure patients, and though I was never in heart failure, this is the first ever increase of my EF in 10 years, and it appeared after I began thiamine, so I suspect it’s related.
One thing that hasn’t gotten better yet is abdominal bloating. Hoping that improves eventually. I have low stomach acid and am working on that. And I still tire much easier than a normal person, but I’m so much better than I was, and I hope to continue improving.
Final Thoughts
My symptoms started at about the age of 10, which is the age I was when a dentist placed 10 large amalgam (mercury) fillings. A few years later, I got 5 more. Mercury causes vitamin and mineral derangement. (I have since gotten most of my amalgam fillings removed by a SMART dentist using a procedure to minimize mercury exposure.) There are indications that a thiamine deficiency heightens susceptibility to mercury toxicity. Many of the symptoms of mercury poisoning are observed in persons with thiamine deficiency. Additionally, there is a metabolic component to connective tissue disorders that most doctors do not recognize. Along with being diagnosed by a geneticist with MASS phenotype, another doctor (rheumatologist) diagnosed me with Ehlers-Danlos syndrome. Being diagnosed with both, even if not correct, has given me access to both cohorts of connective tissue patients, through online support groups. Most suffer from dysautonomia and have accepted this as genetic fate rather than something that can be improved through vitamin therapy. There is a great need to get the word out on thiamine and vitamin therapy to the chronic illness community.
I am deeply indebted to Drs. Lonsdale and Marrs for their research. It is giving me my life back.
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.
Image: Original painting by the author.
This article was published originally on April 19, 2021.
What about the IBS-D related to the POTS, i seem to get loose motions which stop if I take immodium. WIll thiamine resolve the IBS D
I would think thiamine should help. Bowel disease is often a symptom of thiamine deficiency. You can read more about that in this article.
https://www.hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/
And Costantini has a study on thiamine improving inflammatory bowel disease.
Many thanks Lynne for the detailed post. Like many have already said it was like reading my own life. I have searched for answers and spent ££££ on tests, doctors, consultants, you name it only to get maybes or no answers. My struggle is thiamine knocking my potassium levels, no matter how low I’m starting. I’ve had chronic chest pain and breathlessness to add to the whole body problems and the only thing that helps is potassium. I have been taking magnesium for around 6 years with good results but the only thing helping the chest pain and breathlessness is potassium but taking even small doses of thiamine hcl seems to bring my low potassium systems back to unbearable levels. So I’m trying 3 weeks for a good electrolyte powder to ensure I’m completely topped up and then equal quantities of thiamine hcl and b2. B12 is a big no no for me as this serious crashes my electrolytes but having the worse type of genetic variant MTHFR I need it. It’s a constant juggling act that I’m not really nailing yet but stories like yours give me such hope. I thank you and these wonderful doctors that give us there time.
Hi Sherrie — I found potassium very challenging. It became like a full-time job trying to get enough potassium even when taking a small dose of thiamine. Have you tried supplemental potassium? If there’s one thing I could do over — I would have added supplemental potassium sooner. I tried very hard getting it from food and drinks like coconut water, but that wasn’t enough. Try increasing your food intake of potassium and consider adding some in supplemental form. Wishing you good luck. It’s tough in the beginning but really worth it. And once you’re on thiamine for a time, it should normalize your potassium — thiamine deficiency causes intracellular potassium wasting. Once I was established with thiamine, I was able to add b12 and not be devastated by the demand it puts on potassium. Hope that’s true of you, too. (And I’m now able to get potassium solely from food.)
What kind of potassium do you take, and what is the dose? is there a specific brand you’d recommend? When should i start taking potassium, in regards to the stages of thiamine repletion? Would it be better to get potassium alone, or within a multivitamin?
The RDA for potassium is high: 4700 mg per day. I made sure to try to eat a variety of potassium-rich foods daily: avocados, baked potato with skin, salmon, pumpkin, coconut water, coconut milk, bananas, etc.
The form of potassium best for each person is individual. I prefer potassium chloride. Others like potassium bicarbonate or glycinate. Requires some trial and error to learn which one works best for you. There is no recommended dose, because the need will vary for each individual. Keep the RDA figure in mind as a guide.
You can begin taking it when you start thiamine, or wait to see if you show signs of needing it.
In the context of thiamine repletion and its paradoxical reaction, what specific signs would show the nessessity for potassium?
Some symptoms of low potassium are fatigue, muscle cramps, heart arrhythmia, muscle weakness, constipation. There are others — please read up on it.
The paradoxical response to thiamine generally causes an exacerbation of existing symptoms. So, examine your symptoms and research whether those particular symptoms might be caused by low potassium. For example, in my case starting thiamine temporarily worsened my arrhythmia, my fatigue, made my ankle swelling worse, intensified my leg cramps — all of those points to low potassium.
The only one of those i’ve experienced is worsening fatigue. My diet is high in potassium so I believe i can rule it out. My concern might lie with calcium, or something else. The issue is my paradox has been going on for a month now and its not letting up. I started with 50 mg of TTFD and nothing happened until i got to 200 mg. By the next morning my fatigue, brain fog, memory, and general cognition was twice as bad, and my insomnia worsened as well.
Do you have any suggestions for moving forward? Is there a new vitamin, mineral, or supplement i should try? Should i just wait it out another grueling month? Should i increase or decrease the TTFD, magnesium, or B complex? Im at a loss with the paradox. I cant keep going like this much longer. any input from you would be invaluable and greatly appreciated.
It’s hard to comment without knowing your history, what you’re trying to treat with thiamine, what your diet is like, etc.
Something to keep in mind: Chandler Marrs says that dose does not overcome time. Meaning, it takes time to see progress, and increasing your dose in an attempt to improve sooner or see quick results does not necessarily work, and can actually backfire. It’s better to increase gradually and let your body adapt. It took you a long time to get ill, and it will take a long time for you to get better. I didn’t see any real improvement for the first two months. And then I began seeing amazing gains. I went much slower than you, and used a less potent form of thiamine (hcl).
The TTFD form puts a big demand on b2. Are you taking b2 separately, in addition to what’s in your complex? If not, that is worth trying. Also, have you tried lowering your thiamine dose? If I understand you correctly, you had no reaction to thiamine, good or bad, until you reached 200 mg TTFD, whereupon your symptoms became twice as bad? Why not drop back to 100 mg or even 50 mg and see if that gives you some relief?
Also, are you on FB? If so, join “Understanding Mitochondrial Nutrients,”Chandler Marrs’ group. And join “Addressing Thiamine Deficiency and Paradoxical Reactions,” Eliot Overton’s group. There you can post your history and ask for advice and get input from many experienced people. I’m in both of those groups and will look for your posts and continue to try to help you there.
And are you familiar with Elliot Overton’s video on addressing paradoxical reactions to thiamine, particularly TTFD? Worth watching for ideas on how to proceed.
https://m.youtube.com/watch?v=-DxvSUEVT_4
How much HCL did you start with, how long before you upped the dose, and what amount did you increase to? How about your next few rounds of titration? Please be specific. It would be interesting to compare to my own experience, perhaps I could start fresh and try HCL. I’m going to drop down the dose of the TTFD, and perhaps even stop taking it for a while. My body feels as if it needs a reset.
I joined one of those facebook groups last week and the other one is pending. I’ll definently be sharing my diet, symptoms, and history, as well as current supplement issues. Thank you for the information and suggestions.
I started with 10 mg thiamine hcl and ended up at a dose of 1300 mg thiamine hcl, but it took me a long time to get there. Maybe a year. One reason is because I would reach a certain dose and feel well on it — that made it feel like I had reached my optimal dose. So I’d stay on that dose for months — the first dose that made me feel that way was 350 mg. Then after titrating that up gradually, I stayed on 750 mg for months. As I continued to improve, however, my ability to exercise and hike improved, too, and I found that the dose I was on needed to be increased to meet the new demand exercise was putting on me.
In the beginning, during the paradox period, I only raised my dose by about 10 mg at a time, eventually by 25 mg, then 50. I only increased when I felt able to do so. But my experience will not be the same as yours — each person will respond according to their own particular nutritional status, exposures, genetics, age, etc. For example, you felt nothing on 50 and 100 and 150 mg of TTFD. There’s no way I could have ever taken that much initially — even 10 – 20 mg of thiamine hcl sometimes made me feel like I needed to go to the ER (it’s theorized that thiamine hcl is about 10 times less potent than TTFD because of TTFD’s greater bioavailability). So listen to your body and proceed according to what it tells you.
Lynne,
What a wonderful story! I found your recovery story after you posted it on Twitter.
How much thiamine do you take now and have you had any further health improvements? I am slowly increasing the thiamine HCl, and have not yet added TTFD or benfotiamine. Is there a certain mineral or magnesium supplement that you have found helpful? Thank you for sharing about your recovery!
Hi Liza — For a very long time I was taking 1300 mg thiamine hcl, but I recently was able to drop it back to 1100 mg. In the past if I tried to reduce my dose I became symptomatic, but I’m taking copper now, which is also helping me a lot. Both thiamine and copper play important roles in ATP synthesis.
Thiamine dose is individual. You can continue titrating up until you get relief from your symptoms.
Regarding improvements: yes, I have good energy and it’s probably sustained better now than when I wrote this article. Overall, I’m doing well, and very grateful for that.
I like magnesium malate because it has a high percentage of elemental magnesium. Others do better with other forms — it might take a little trial and error to find which works best for you.
Good luck titrating thiamine. It can be difficult in the beginning but well worth it. If you’re on Facebook, join the Understanding Mitochondrial Nutrients group. Lots of knowledgeable people there who will help you troubleshoot. There’s a thiamine group, too. I’m in both groups and will be happy to try to help you. Wishing you good luck.
Hi Lynn,
I noticed in a previous comment that you mentioned dropping ttfd. Did you wean off of it or just stop altogether?
Do you recall your issues with tolerating TTFD vs the HCL?
I stopped taking it all at once but continued taking thiamine hcl. I felt worse in general on TTFD and in particular, it gave me GI distress. Not sure if that was due to depleted glutathione or something else. Thiamine hcl works well for me, so I’ve stuck with that. Elliot Overton has a great video on how to manage the potential side effects of TTFD.
https://m.youtube.com/watch?v=-DxvSUEVT_4
Thanks Lynne!
I too relate so much to your story. I have without a doubt thiamine deficiency. I believe I’ve had it for a long while, if not most of my life, and was exacerbated by excessive exercise, high stress job, and going gluten free without using properly substituted fortified flours/foods. In my younger years I was a heavy drinker as well and have always been a regular coffee drinker. I am also a Type A person with perfectionistic tendencies (High strung!). Then in came covid, repeatedly despite efforts to avoid. These were largely asymptomatic infections but he aftermath is terrible. I didn’t tolerate vaccination, and everything realy escalated to a very, very bad place.
When I first started thiamine 2.5 months ago, I jumped right in at 300mg benfotiamine thinking the megadosing route was best. For the first few days it was like I was pulled out of the hell I’ve been in for the last few years, even prior to covid. Everything improved. Every single symptom was gone. There was my old self!
About 5 days in the paradox began with heart palps, brain fog, and fatigue. The brain fog and fatigue have resolved with time, even prior to decreasing the dose. In an effort to offset the heart palps I’ve decreased the benfo dose. I stabilized some and then tried starting allthiamine as well. I titrated up to about 50mg allthiamine and 150mg benfo but now, about 2.5 months in, I’m having an increase in horrible heart palpitations. They intensify at night but are now occurring throughout the day.
Acute heart palpitations were the first signal that something was off 4 years ago even prior to covid (having no idea it was likely dysautonomia/thiamine deficiency). Once I introduced magnesium a year ago they subsided but the other thiamine deficiency symptoms and long covid symptoms persisted so that is how I stumbled into this site and found myself in these thiamine deficient stories.
Any more thoughts on dosing and type that has been helpful for you? it sounds like you’ve stuck with thiamine HCl? Perhaps I should scratch the other forms of thiamine and start over with HCl. The benfo gave me my breathing back and the allthiamine gave me my mind back. I hate to jump ship but these cardiac symptoms aren’t sustainable. I take almost 400mg of elemental magnesium daily since I figured starting thiamine was burning through magnesium and I’ve been deficient in the past. Potassium and calcium help a bit but no resolution of cardiac symptoms.
The dysautonomia symptoms have increased so horribly over these past few months with the introduction of thiamine: heart palps, pounding heart, heart racing, inability to lay flat, I sleep sitting up, shaking, panic, frequent urination mostly at night. These were my initial symptoms prior to covid and I ruled out every other possible mechanism including blood sugar issues, hormone imbalances, etc. Magnesium did help resolve them completely before thiamine but since introducing thiamine they’ve reemerged. What thiamine has helped with is resolving so much of the other long covid and dysautonomia symptoms…. I couldn’t get up from a seated position (And I used to be a yogi!), light and sound sensitivity, brain fog, word loss, memory loss, PTSD like behaviors, anxiety and depression, PEM, unable to walk (in two months I can now walk up to 5 miles per day!!!), severe joint pain and hobbling around (I’m only in my early 40s), my skin is brightening, dark circles gone, veins becoming less visible and the best one is improving severe shortness of breath I had 24/7, etc.
I know I need thiamine, but I can’t seem to tolerate it due to the acute cardiac effects. I’ve tried cutting back but they persist. I’ve tried increasing magnesium since that helped in the past prior to thiamine but they’re still ongoing. Perhaps I need to wash out and start over with HCl. It’s so disheartening since thiamine has been helping in many other ways. Any anecdotal or experience and feedback is welcome!
Try a cal/mag combination. That seems to help with the heart related symptoms that develop with thiamine repletion. There are few articles on the topic published on HM.
Thank you for the quick reply and suggestion! Is it best to take calcium with magnesium at the same time to offset these symptoms, or just in the same day but various times? I’ve tried them separately but didn’t know if simultaneous administration was of importance.
Also, there’s been so much resolution to my symptoms with the more readily absorbable formulations of thiamine (benfo and allthiamine), but do you think it best to decrease dose or shift to a lesser absorbed formula (HCl) until symptoms stabilize? I’m so disheartened at losing the progress made with thiamine by dialing back, but these cardiac issues are not a force to be reckoned with!
Thank you again so much for your work in spreading the word about dysautonomia and thiamine. I was in a very lost world, in and out of specialists offices with no answers for 4 years before stumbling into this site.
Calcium helped me a lot. I found the below article by Chandler Marrs very helpful.
Also, you may not be taking enough potassium. Your frequent urination at night may be a clue — that can happen with low potassium. And of course palpitations are a common sign of potassium deficiency. The RDA for potassium is 4700 mg, and high-dose thiamine further increases our requirements for potassium. You note that potassium and calcium do help, but not enough — that may be a clue you need to take more.
I take calcium and magnesium in a 2:1 ratio, and I need a lot of potassium — from foods and supplements. I especially needed a whole lot of potassium in the early months of thiamine supplementation. I think I would have not suffered the paradox period as long as I did had I increased potassium sooner and added calcium sooner. I still take 565 mg of elemental magnesium daily, and for the first many months of thiamine supplementation, I needed a bit more.
Wishing you good luck.
https://www.hormonesmatter.com/thiamine-repletion-calcium-management-heart/
Hi Lynn,
Thank you for the reply! Since I posted my comment, I received feedback in a thiamine refeeding group as well with the suggestion of potassium. I’ve increased potassium via coconut water and it’s helped quite a bit, along with the calcium and magnesium, for the heart palps!
I’m astonished at how sensitive the electrolyte balances become with refeeding thiamine, and even more surprised at how much potassium I need. I was so aversive to potassium for years due to being on spironolactone for acne (which is a potassium sparing diuretic). I’m no longer taking that, but kept that mentally of being mindful of potassium. With increasing the heart palps have abated. It’s a wild ride when they start up though. It makes me wonder if the years prior to covid that I had these was due to low thiamine and subsequently low potassium. I’ve read in other posts as well that thiamine deficiency contributes to low potassium, but then refeeding burns through the stores of potassium causing low potassium as well. Such a fine balance! Hoping for more smooth healing as I continue to increase thiamine! Thank you again so much for sharing your journey!
Hi Lynne, I have many of the symptoms you describe in your post. It has been so very helpful and hopeful for me to read it. I am underweight and haven’t been able to put on any weight for years. You said you high-dosed vitamin C. Would you tell me how much you took and how you spaced it out throughout the day. Also, did you use straight ascorbic acid or some other form?
Hi Jane — if you share many of my symptoms, getting on thiamine would probably be your best bet. We can talk about vitamin c, too, but I now think the reason vitamin c might have helped me gain weight was because it improved my gut enough to allow me to absorb more dietary thiamine. But it required taking thiamine supplementally in high doses to help my fatigue and dysautonomia. Thiamine can help with gain weight in a thiamine-deficient person because it shifts metabolism from catabolic to anabolic. I think the source of my life-long inability to gain weight was thiamine deficiency.
Need for vitamin c is individual. I had a lot of oxidative stress from mercury toxicity so I took high doses. For a long time I took 8000 mg a day in 4 divided doses. I have since learned that vitamin c can convert to oxalate in those deficient in b1 and b6, which may cause a host of problems, so that should be kept in mind. Now I only take 1000 mg vitamin c daily.
Thiamine (and co-factors) is what has helped me more than anything.
Wishing you good luck.
I forgot to add that I used plain ascorbic acid powder, with no other ingredients. I stirred it into water.
Have you tried injectable vitamin C?
No, I haven’t.
I have come to the conclusion that energy deficiency is THE CAUSE of disease. If I am right,TTFD would treat any disease! The expression of the infinite variety of symptoms that has given rise to our convept of different diseases,each with a separate cause, may be because of the distribution of energy deficiency in the body and particularly in brain and the severity of the deficiency. I suspect that permanent damage gradually occurs when the symptoms go unrecogized for years. We call a partiular set of smptoms cisease A and another set disease B
Thanks for your comment, Dr. Lonsdale, which is an encouraging one.
What I find impressive in my case is that I was thiamine deficient for decades and still have made a fairly remarkable recovery despite being long deficient.
Hello, did thiamine hcl stop the heart palpitations completely or did you take other measures in addition to the thiamine? I’ve been taking thiamine mononitrate; while it helps my pots with the faint feeling, it’s not doing much for the palpitations but I’ve taken the hcl before and didn’t notice any difference either way but maybe I should try the hcl again? I know hcl is water soluble while mononitrate is fat soluble so I figured I’d go with the fat soluble but maybe I should reconsider the hcl? I just wanted to know if just the hcl stopped the pots heart palpitations or if you did other things. Any ideas on what helps with the pots heart palpitations? Thanks
Yes, thiamine hcl stopped my heart palpitations. I take it with magnesium and a b complex, and — because I take it in high doses — I take all of the b vitamins separately, too.
You should take the form that works best for you. Both thiamine hcl and thiamine mononitrate are water soluble. They generally have to be taken in larger doses to be effective. You might find that increasing your dose helps, though in the beginning at least, that might cause a paradoxical effect, as Dr. Lonsdale describes in the article I link to in my story above.
I kept slowly and gradually increasing my dose until I felt symptom relief. It takes time and patience. Wishing you good luck.
Thanks for responding, I noticed you took solgars brand hcl. Are you still taking them and are they still helping? Maybe I’ll get the same brand too.
What do you mean with: “I take all of the b vitamins separately, too”?
In addition to a b complex, I take additional doses of all the b vitamins separately, too: b1, b2, b3, b5, b6, biotin, folate, b12.
What doses of each? Thanks…
How long did it take since the beginning until palpitations stopped?
Does Thiamine mononitrate works as well as hcl?
Thanks
What is the larger dose of Thiamine you stayed on?
Lynne,
This post was so helpful for me. 🙂 My son has POTS and I am planning to start this protocol for him.
How are you doing now? Have you continued to improve as you increase the Thiamine HCL? Is your overall health better than it was prior to starting?
~ Ellie
Ellie, I’m very glad it was helpful, and good luck to your son. My health is overall better, yes, though I’ve recently been diagnosed with hyperthyroidism. I’ve begun treating that nutritionally, with l-carnitine, and I’m improving. Thiamine has helped me very much — I’m able to do much more now than I ever could before. It has been life-changing. I hope your son sees the same kind of improvement.
Thank you for responding! What changes to your diet have you made to help with your hyperthyroidism?
I purchased some thiamine HCL at our local health store, so he will start on that soon. Do you take a certain kind of magnesium?
L-carnitine is helping my hyperthyroidism the most, and I’ve added high copper foods.
I like magnesium malate. It might require some trial and error to find which magnesium works best for him. Don’t forget a b complex, too.
Does anyone have an opinion as to what type of thiamine and supporting supplements you would would start kisd ages 13-17 on?
The best type of thiamine seems to vary, depending on the individual. It depends on a person’s health history and individual biochemistry. Very ill people seem to find thiamine hcl easier to start with. Otherwise, it requires some trial and error. Thiamine needs magnesium, and a good b complex. I was only able to add the complex after taking thiamine alone for awhile. Good luck to you.
Are all cases of dysautonomia related to thiamine deficiency? And are all cases of Long-Covid thought to be related to a thiamine deficiency or just in this case the cause is known? Thank you!
Dysautonomia is a malfunction of the autonomic nervous system. The autonomic nervous system requires thiamine to function properly. The book by Drs. Lonsdale and Marrs explains how a deficiency in thiamine affects the functions of the brain stem and the autonomic nervous system. The early stages of beriberi show symptoms similar to dysautonomia.
A lot of long hauler symptoms are consistent with dysautonomia — and we know that the autonomic nervous system requires thiamine to function properly. Many long haulers are improving with thiamine.
Chandler Marrs has a good article on this site about the importance of mitochondrial nutrients (especially thiamine) to provide enough energy to modulate the inflammatory cascade seen in covid and long covid.
https://www.hormonesmatter.com/covid-notes-i-dont-see-a-role-for-mitochondria-say-what/
Hi, Have you ever been evaluated for Ehlers-Danlos Syndrome or Joint hypermobility syndrome? Sounds like you might have it.. especially if you were evaluated for marfans, marfanoid habitus-long arms, legs, fingers, toes are a sign of a collagen disorder.
Hi Victoria — thanks, yes I have. If you read to the end of my story, you’ll see that I was diagnosed with EDS by a rheumatologist.
Hi Lynne – thank you for this article. We are trying to figure out some complex health issues our son has but certainly frequent feelings that he will pass out, extreme fatigue, very underweight amongst others. You mentioned starting high dose vitamin c and supporting methylation which helped you gain weight. Did you do testing for MTHFR etc? We are going to encourage him to do a trial of thiamine – maybe get an OATS test first? Any other recommendations on the weight issue? Thank you,
Hi Jennifer — I didn’t get tested for MTHFR. Because I started both high-dose vitamin c and methylation support at the same time, I can’t be sure which helped me gain weight. I have two theories: one is that high-dose vitamin c might have helped my gut enough to overcome malabsorption. And that in turn allowed me to finally put on weight. The second theory is that choline might have supported methylation enough to lower my homocysteine. Elevated homocysteine is associated with a tall, thin body type. Unfortunately, I only had my homocysteine measured after I began those interventions, so I have nothing to compare it to. My homocysteine is still a bit high.
The OATS test is a good idea, but I don’t think it’s accurate for thiamine, which is notoriously hard to measure. You can just do a trial and see how he responds. His symptoms suggest that he needs it. Best to read up thiamine supplementation on this site to learn about how to proceed, appropriate co-factors, etc. Thiamine status can be related to low weight — one of the symptoms of beriberi is weight loss. Good luck — it sounds like you’re on the right path.
Thank you very much for your response Lynne.
Interestingly, thiamine raises a BP that is too low, but lowers it if it is too high. It seems to be the body’s metabolic regulator.
I just got the Lonsdale/Maars book this morning.. So much good information that may be applicable to a Parkinson’s Warrior like myself. Parkinson’s is hardly ever mentioned, but I could not help but research the “great imitator” known as B1 deficiency. There are so many symptoms that overlap that I figured there must be something beneficial for me here. I had just started doing some work with Dr. Constantini a couple of years ago, who had developed a high dose vitamin B1 modality, but then the world changed.. Still hoping I can pick up here and get my life back. I believe we (warriors of all kinds) can be healed of the many maladies presumed “incurable”. Onward!
Arlon, I’m so glad you’re reading the Lonsdale and Marrs book, and that you’re familiar with Costantini’s work for Parkinson’s. I agree with your optimism. Wishing you all the best in your quest for health.
Lynne,
1. Did you have any improvements in the first 2 months that helped you to stick with it? Or were you just going downhill due to the paradoxical effect?
2. Before starting thiamine were you able to hike and walk, or is that something you are now able to do for the first time?
3. What brand of thiamine did you take and how did you measure out the 10mg? I am having trouble splitting the capsules.
Thank you! Xoxo
Hi Liza,
1. Possibly a little improvement toward the end of the second month? I’m trying to remember. It was difficult, but what kept me going was the knowledge that it would help me eventually.
2. Before thiamine, I was able to hike and walk, but I would feel crushed the next day. It would cause incredible fatigue and keep me in bed for part of the day. Now I can hike and walk and have a normal day the next day, as well as have a normal evening the day of hiking (used to be so tired I’d have trouble making dinner).
3. I used Solgar 100 mg capsules and would divide them as best I could. There is also a good meltable b1 that is only 12.5 mg per tablet, but it has other ingredients in it. That brand is called EZ Melts.
Wishing you good luck!
These are complex medical issues and require superior biochemical knowledge in explaining them. A low systolic BP is a classic sign of thiamine deficiency, but lowers a high systolic. This may well explain some of the philosophy of the Ancient Chinese. Yin is one extreme and Yang is the other, capturing the more modern philosophy of “moderation in all things”. One can ‘t help wondering whether adequate thiamine actually maintains metabolism in a state of “moderation”, the perfect state required for metabolic perfection.
Nicely said. And puts me in awe of what the body is capable of, given the right building blocks.
Hi dear Lynne, thank you for your inspiring story! I may have missed it…how long have you been treating with high levels of B1?
I had so many of your same symptoms when I was young…sweaty sweaty hands and feet (hands to the point of dripping often, even when not exercising…), was diagnosed with mitral valve prolapse when I was a child…other ANS anomalies. Several other similarities.
I hope that your improvement continues and look forward to hearing more about your journey.
Hi Lorrie. I’ve been taking thiamine for almost nine months. I started out with a very low dose (10 mg thiamine hcl), and gradually increased. For awhile I also took the ttfd form, but I stopped tolerating that after a few weeks, so dropped it and continued with just the thiamine hcl, which has served me well. It’s good to read about thiamine and dysautonomia before starting, and learn how thiamine supplementation in a person long deficient can cause refeeding syndrome. Reading Lonsdale and Marrs and the thiamine posts on this site helped me. Make sure you’re getting enough magnesium and potassium. And a b complex — I could only add that when I had enough b1 onboard.
Sorry to hear you’re familiar with autonomic dysfunction — it’s very difficult. I hope very much that thiamine helps you and wish you good luck.
Lynn has suffered blatant thiamine deficiency(TD)since she had the mercury fillings, a classic way to give a sensitive person TD. Ehrlers Danlos is classified as one of the dysautonomias all of which are classic examples of energy deficiency in the lower part of the brain. The easiest way to do this is to induce TD. The period of paradoxical worsening of symptoms is apparently unusually extensive, but so little is known about paradox whose technical name is refeeding syndrome. It is important to notice that some of symptoms have been relieved while others are continuing. The reason for this is because of the distribution of the TD which has been there for many many years and might well be associated with some damage to the cells involved. I think it will be valuable for Lynn to read some of the other posts on Hormones Matter. You will be able to see then that this particular phenomenon is incredibly common and for the most part is not recognized by the medical profession. Diet should avoid sugar, sweeteners and alcohol completely. One last potential compliment. Thiamine is the spark plug that makes the engine of the cell produce energy that is responsible for supplying all the activities of the brain and body. More intelligent people obviously require more energy in order to run their more superior brains. So, the higher the IQ, the greater the risk. Any form of stress whether it be an infection, trauma, business worries, grief or a deadline require energy to meet the new demand and that is why sometimes virtually any form of stress will precipitate TD. It is also why an organic diet is a necessity for healthy life and if for some reason sufficient energy to meet the demand is not forthcoming, symptoms arising in the brain are responsible for what we call illness. Thiamine seems to be the vitamin which dominates energy synthesis and is is a valuable supplement when energy deficiency in the brain exists.
Dr. Lonsdale, thank you for your comment. I will read more posts on Hormones Matter, and continue to tweak my dose and hopefully find more improvement. The nice weather has me hiking more and getting more sun — both of which are setting me back. I remember what you wrote about the factory workers exposed to the sun while taking lunch between buildings — how they declined because the stress induced by UV light created an energy demand they weren’t able to meet. Even though I’m much improved, I find I do better hiking on cloudy days. That seems to hold true even if I increase my thiamine dose to meet the extra demand.
Despite that, I’m doing much better overall and am very grateful. Thank you and Dr. Marrs sincerely for your work, which is making a world of difference to patients’ lives.
Have you tried increasing your dose on Vitamin C, when getting sun? Or getting glutathione?
Also Melatonin, should help, since is the most powerful antioxidant in the body.
Thanks — I have since increased my dose of thiamine and no longer have trouble with the sun.
And what about Niacin (NAD+), isn’t also very important on energy and fatigue?
Great job sharing your story Lynn. I can relate to all your symptoms! Twins, in many ways! Thank you for increasing awareness. Take care! ❤️??
Thanks so much, Jane. Thank you for spreading the word — it was you who first pointed me to the book by Drs. Lonsdale and Marrs. I still remember the shock I felt at the title alone. And the feeling of hope it brought.
Great post! My story is very similar. Glad you are better. Can you share more details about your thiamine dosing? Do you just take hcl form? Did you stick with the same dose until you got over the paradox?
I started with thiamine hcl, and then added ttfd. After several weeks, I stopped tolerating ttfd, so dropped it and continued with hcl alone.
I increased my dose slowly, even during the paradox period. Each increase caused a worsening of symptoms. It was difficult. After about 2 months, I stopped having symptoms when I increased.
Almost the same with me. Years of symptoms. May I ask a few questions:
Did you ever have dry eyes and or urinary issues?
Did you ever try the TTFD or lipothiamine forms?
How often and by what increment did you increase your dosing of the Hcl form?
No to dry eyes. Yes to urinary issues. I sometimes have trouble even now emptying my bladder completely. I can do it but it requires a concentrated effort. Seems related to inflammation and possibly dysautonomia?
I tried ttfd in the beginning. Added it to thiamine hcl. After several weeks I stopped tolerating it, so dropped it and continued with thiamine hcl alone.
In the beginning, I titrated very slowly, only increasing by about 10 mg at a time. Eventually I was able to increase by 25-50 mg increments. Every increase of the dose caused paradoxical symptoms. After about 2 months, I was able to increase the dose without symptoms. I can’t say exactly how often I increased — I regret that I didn’t keep detailed notes. I increased when I felt I was able to do so. It was very hard, but I knew it would help me eventually, and that kept me motivated.
COPPER…TTFD depletes copper in your body…so wheter you have “weak” copper in your body, your body have trouble tolerating it
I did not know that
Thanks, Kelly. No family in the medical or pharmaceutical field — I simply wasn’t aware of orthomolecular treatments.
One possibility for your high BP — if you happen to be deficient in magnesium, that could cause low potassium, which in turn can cause high BP.
Hmmm, interesting. Also sad, but encouraging at the same time.
Interesting that thiamine helped RAISE your systolic. Mine’s been too high for the last 8 years, and I’ve been taking thiamine practically the entire time, but not much magnesium as I couldn’t tolerate it until now. I wonder if that will help?
Sad that it took so long to look towards natural remedies. I remember getting Dr. Lonsdale’s book back in the 1990’s, probably around 1998. Was you family involved in allopathic medicine or the pharmaceutical field?
Anyway, so glad you’re doing a lot better. 51 is YOUNG. Enjoy the rest of your life!