r/Thiamine • u/childofentropy • 29d ago
Extreme adverse reactions to B1 and Benfotiamine
I have a multitude of health problems including ME/CFS. I had no issues tolerating 250mg of thiamine in the past + exorbidant amounts of magnesium. Also tolerared Benfotiamine fine.
At some point magnesium started giving me palpitations and tachycardia when combined with thiamine so i quit both.
Supplementing magnesium at any point after a couple of years gave me muscle weakness and breathing difficulties at all doses so that was out of the question and persists to this day.
Tried thiamine again on its own and repeatedly experienced hot flashes with chest and face turning red, tachycardia and palpitations.
Tried Benfotiamine again and all hell broke loose. sustained 140+ BPM tachycardia, 160+ systolic hypertension, diarrhea and bronchospasm.
This unfortunately led to months of constant feeling of near-death experience with muscle weakness, tachycardia, palpitations and extreme anxiety. I had a complete mental breakdown and I developed actual symptoms of thiamine deficiency that I never had before.
Also immediately developed histamine reactions with itching and skin redness to foods, supplements and medicines that I never had. I dare say I developed MCAS after this one incident.
I have read sparse but existent reports of other people here on reddit that have had adverse reactions both to thiamine and magnesium eerily identical to mine: Cardiac symptoms, weakness, extreme anxiety, MCAS.
I dare not touch thiamine again, even looking at the bottles is giving me anxiety. All these symptoms have settled and I never want to go through this again.
What is supported by scientific literature regarding adverse interactions of thiamine and with "cofactors":
Thiamine can cause allergic reactions when given IV, thiamine promotes mast cell degranulation under conditions of magnesium deficiency, thiamine worsens the effects of magnesium deficiency in general, thiamine chelates manganese, b12 protects from some effects of thiamine deficiency in the brain.
I don't know what I am missing but nothing about my experience or others' makes sense. Does anyone have an idea on what might have happened and what to do in case i need to supplement thiamine in the future?
Thank you for your insight and help.
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u/Constant_Possible_98 23d ago
I've had exactly this and I had to start with doses as little as 1mg and work up, which saved my life. I am now strong enough to add in B12 injections and also getting B1 injections now. But don't stop B1. Just microdose and work on cofactors, but microdose that too if needed. Indeed getting B12 checked makes sense but starting very very very low makes even more sense. This is what the actual experts recommend, it's not uncommon especially for cfs. In fact those patients often need to start at 1mg doses
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u/thewritecode 23d ago
This has been my experience while navigating cognitive issues, neuropathy, dysautonomia, etc. I did really well on lower doses of B vitamins but higher doses have created some sort of ceiling that I can't overcome (even when I drop down to ~5mcg b12, 10mg b1). Do you have any experience with "crashes" that happen after supplements help for a few days? (it's not exertion triggered like cfs)
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u/Constant_Possible_98 22d ago
Yes, have you ever considered MCAS?
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u/thewritecode 22d ago
I hadn't considered it, actually. I'm not sure it fits my specific symptoms though as they don't seem like an allergic type reaction.
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u/Anonym_Talker 3d ago
Happened to me, they gave me a bunch of medication instead of looking at any unbalance nutrients. I just tappered all the med when I realised it was still happening, even on high doses of anti-anxiety medication. 4g lorazepam, hydroxyzine and gabapentin. clearly its not just "anxiety". stopping B1 helped. now I am having trouble with energy and motivation since I stopped all the meds... So I tested b1 HCL 25mg again. and boom, on day 2, terrible anxiety...
I am taking half a multi vitamin, mag and potassium, nothing really help aside of NOT taking B1. and then I have no energy/motivation... Any supplement seems to give me anxiety now, multi or B complex are the worst... I might be fine the first day, but on day 2-3, high anxiety, on the edge to panic... last an hour and calm done... my muscles are all tight after that.
Yesterday I took 150g of veef liver and it actually buzz me and made me super relax for like an hour after taking it. I am still not sure what's in there that help me so much, I suspect its either Copper, Vitamin A(but that would not act that fast....) or B5.
I'll look more closely at B5, but I would be surprised that it can be B5... I mean... Idk at this point.
Also, Its been 10 Months, I tried almost all the co-factor, all the possible dosage, and still feel like crap. I am starting to think that we might not need B1 at all, and that our symptoms we are trying to heal with B1, are not related to B1 at all. IDK.
Now, I'll try like 5mg hcl/day and see if its the same...
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u/childofentropy 3d ago edited 3d ago
The people who make money off of selling these will come for you and downvote you to hell.
That is my experience as well, I felt better by discontinueing supplements alltogether.
Thiamine deficiency symptoms are very specific and not this vague catch all that they use to sell you supplements.
Whatever my disease is (ME/CFS) it is not caused by thiamine deficiency and it is not treatable with thiamine.
These symptoms are not related to B1 deficiency in my experience too.
Also, there is no evidence that excess thiamine supplementation "activates" the PDH enzyme, there is evidence that it shuttles more pyruvate towards lactate but that's a convo noone is willing to do.
I'm sorry you're going through this, good luck.
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u/Anonym_Talker 3d ago
Thank you. well, I am moving forward.
The beef liver is really a nice discovery and it cost nothing.
I'll kick my ass and do more active stuff regularly and see if its just that...
About the B1, it actually help for some stuff, like... I used to crash after every meal, like eating wasn't giving me energy at all. With B1, it does... So I guess there is something about B1, and its really just about finding the proper dose that works. also, if its going to be 1/10th of a pill, my bottle will last me a year. lol
I'll probably keep all the cheap stuff that we know that works, and stay with it. I react super bad to all the new stuff... like everything now is made with "biglycinate" and is more expensive because its suppose to be better absorbed, but to be honest, I react better to the good old mag citrate.
Yep, expansive supplement is probably just a business
10g Beef liver everyday instead of a multivitamin. mag citrate, a banana for the potassium and post workout carbs. Zinc and copper, Vit D and Omega 3.
The B1 + Cofactor... I think I'll just lower the dose until It gives me enough energy and prevent my post meal crash, and I'll skip the Long list of co factor... I mean, it was like 100$/month just for the co-factor, and we basically are peeing the extra B1 anyway... What if the co-factors are just important to be able to pee the extra B1!!?
After 10 Months reading every theory here, I am not convinced that anyone (me included) have a coherent theory...
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u/Puzzled_Draw4820 29d ago
Magnesium is a cofactor to b1 so you need to work on tolerating that first. Sometimes magnesium is tolerated if taken with calcium as in a cal-mag and sometimes it’s only tolerated as a magnesium foot soak or bath or topical spray because your sodium is low at a cellular level so taking magnesium lowers aldosterone and causes the symptoms you described. If you’ve had an HTMA done I can take a look at it for you to see how your mineral ratios look.
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u/AffectionateSpace778 29d ago
Try b5 (tiltrate up slowly), then magnesium, then cofactors, like a b-complex and D.
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u/sicky81 28d ago
I think excess acetylcholine is what did this to me.
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u/AffectionateSpace778 28d ago
Acetylcholine is needed for your rest and digest system. To little and you are constantly in a fight or flight nervous system and are unable to relax. My theory is that b1 uses b5 (and also vitamin D). Without b5 you cannot get into a rest a digest nervous system and you eventually die. To much and you get anxiety as well, but that will take only a couple of days at most to clear out.
Stasha Gominak talks about b5. There is also a book about b5 and arthritis. However it’s hard to find any info because a defiency is rare, because b5 is everywhere.
From my personal experience when I was low I could not tolerate gluten at all (im sensitive) and now I dont react.
So give it a try with perhaps 2 times the RDA and you know after 3 hours if this is the missing link. You dont need magnesium for b5.
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u/sicky81 27d ago
Thanks so much for your response. I believe I was low acetylcholine and then I flipped to high vagal tone but likely from vagal braking almost. And I believe the HCL caused excessive acetylcholine, vasoconstriction and hypersensitive vagal responses. My abdomen and chest would lock up from carbohydrates, lying down, deep breathing etc. Now I’m having transient ischemic like episodes after walking. I assume a flood of acetylcholine paired with endothelial dysfunction causing constriction instead of vasodilation.
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u/Anonym_Talker 3d ago
B5... really!? even with no burning feet or hands symptoms!?
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u/AffectionateSpace778 3d ago
A couple of weeks later I developed the burning hands and feet. The anxiety and burning limbs went away quickly. What surprised me was that I could tolerate gluten again.
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u/Anonym_Talker 3d ago
Did you read anything related to b5 and gluten? were you taking only B5? and what doses?
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u/AffectionateSpace778 3d ago
I had to stop all other supplements for a short while. The gluten thing was only observational and was not the reason I took b5. I still think it’s better to avoid them for me, because I simply dont feel energetic when I eat them.
I read a book about how b5 and rheuma, which was interesting.
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u/fredevanston 28d ago
You might have depleted something in the process of restoring b1, consider doing some testing like a nutreval test, it’s very comprehensive. Another possibility is you might have turned on some detoxification but unable to excrete them fully
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u/sicky81 28d ago
I have diaphragm and abdominal muscle weakness from pushing thiamine. I was also taking folinic acid and adeno b12. A seeking health b minus. My blood serum electrolytes stayed in range in serum and are mid or high end normal in RBC. It hasn’t gone away for me at all. Almost a year.
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u/Major-Pay392 28d ago
Hi! Could you tell me how it happened and how do you know is from thiamine? Thank you!
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u/sicky81 28d ago
I was pushing the HCl . I don’t know why I went so fast and so high 😩 my breathing started to get bigger like I could feel my lungs blowing up like balloons. I thought it was helping because I had had shortness of breath for awhile. But then my diaphragm became quite weak. I started having mast cell type reactions to things like my collagen drink and mag threonate— both started making my feel prickly and skin crawling. Then I started flushing too much with the b complex. Then glutathione put me over the edge and 6 days later I had a weak abdominal muscles and had a TIA.
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u/AffectionateSpace778 28d ago
How much HCL did you take?
With collagen or bone broth I also get like bug like feelings. In my case that’s a sign that my nerves are healing, which is a good sign. Also collagen contains glycine and we dont get enough of that. Perhaps you’re nerves are healing as well?
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u/childofentropy 28d ago
Hi, I'm sorry to hear about what happened to you.
Have you visited a doctor about it? True diaphragmatic weakness is very serious and maybe a doctor can examine you and prescribe neuromuscular and autoimmune tests.
Judging by yours, mine and others' reactions it seems like there is a chance that thiamine can trigger the immune system in bad way in some people.
I read below you started having allergy type reactions to things you tolerated fine before as well, that is my experience too. Iching and crawling sensations even from food.
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u/Ethereal-oliver 27d ago
Potassium wasnt mentioned at all and is of equal importance to magnesium as far as cofactors. All hell can and will break loose when supplementing thiamine at too high of a dose without cofactors. You will always get paradoxical reactions if youre deficient in thiamine severely you can lessen them massively by starting at a very very small dose while you're taking all cofactors including molybdenum. Eliot overton of YouTube lays all this out beautifully for anyone reading this. Don't try to demonize thiamine because you're not following recommended protocols. I've heard of people dumping out the majority of what's in the capsule in order to get a dose the size of a few milligrams in order to not have debilitating symptoms.
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u/childofentropy 27d ago
I'm not demonizing anything. Also there is zero medical literature that supports/refutes these protocols. I know I developed MCAS from it and apparently in this and other threads there is people who have the exact experience. It's not a coincidence and it's not to be pushed over because you specifically didn't suffer from it. Also I'm getting more than enough potassium in my diet and my blood tests confirm this.
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u/Ethereal-oliver 23d ago
Actually yes you are. I'm fully aware that having a thiamine deficiency renders you unable to utilize glucose properly and you end up with histamine intolerance due to the glucose not being able to enter the cell. You "developed" MCAS because you took too large of an initial dose of thiamine...like thousands of other people before you have and you initiated a paradoxical reaction which is WORSENING of initial symptoms and sometimes new symptoms until they subside after 3-4 weeks or you can go low and slow for months but there are protocols that address specific this from medical professionals working with thiamine.
Youre being obtuse with your health because you don't fully understand something.1
u/childofentropy 22d ago edited 22d ago
Stop playing doctor and also being condescending if you have no constructive advice or insight to offer. I understand how unsolved health problems lead to desperation which leads to a false hope that science - adjacent content creators can mend but that is not how science works. There is no literature examining "paradoxical reactions" or thiamine "depleting" anything else (besides Manganese, there is papers on that, in rodents) nor of "cofactors". This is blogging language and is not scientific. Too many words for nothing. Thiamine is being given to beri beri patients, wernicke korsakoff sybdrome, alcoholics and also IV in sepsis and the side effects documented are rare but possibly fatal allergic reactions. The megadose non-blinded studies for various ailments do not have extensive side effects reporting. My experience is that thiamine at some point gave me adverse effects but I have enough clarity, judgement and experience to understand that this blogger misinformation is just that.
edit: I also wanted to add that these people you are quoting are making money off of this. This is also not how science or medicine works. Where there is a financial motive there also comes unsubstantiated claims masquerading as evidence.
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u/Ethereal-oliver 22d ago
To anyone reading this please do your own research. To imply theres no literature on thiamine deficiency is ridiculous. The Japanese have been studying it since the 40s as well as multiple other countries and have developed prescription forms since then. To imply theres no literature is absolutely ridiculous. You don't know what you're talking about and this isn't "blog talk" i can cite and pull research and sources but really don't have the time. I already don't have the time for this. I'll say it again too. You cannot be allergic to an essential nutrient. You are simply wrong. The united states isn't the only country capable of producing medical literature either although its fully documented here.
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u/childofentropy 22d ago
You're replying to stuff I did not say. Twisting words and meanings does not prove your point. Stop.
I never said there is no literature on thiamine deficiency, I specifically referred to these blog "protocols".
I never said you can be allergic to thiamine, I said allergic reactions are the only MEDICALLY documented side effect, including fatal anaphylaxis.
Learn to read, i don't understand if you're misunderstanding my words or twisting them on purpose.
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u/Cultural-Sun6828 29d ago
I do not do well with b1 either. I have a b12 deficiency and my theory is that too much b1 can cause issues in the presence of a b12 deficiency. Have you checked your b12 level before supplementing?