High dose vitamin B1 (thiamine)

ljimbo423

Senior Member
Messages
4,530
Likes
12,141
Location
United States, New Hampshire
Long time ago post but do you happen to remember if you had any type of reaction when you switched from thiamine to benfotiamine?

I tried that today and it's made me nauseated and gave me a headache. (I get headaches but usually don't get nauseated very often and that was the only change I made today.) The pill I took was 100mg benfotiamine and 25mg thiamine.
I didn't have any side effects from it. Although I started at a much lower dose than you did. Only about 10-20 mg. Maybe the dose you took was too high to start with.
 

EtherSpin

Senior Member
Messages
248
Likes
381
Location
Melbourne , Australia
preliminary feedback.
I took the B1 for a couple of weeks with no negative results, between 800mg to 1.5g per day and we had some lame stuff happening here with our car busting and me being in a limbo trying to make sure the kids could get to school & places and I could do appointments, the replacement car was also delayed a week from the dealer so I stayed "On" regarding adrenaline/POTS for a really extended time period.

when I was about 3 weeks in my S.O. cleaned up the kitchen and popped the B1 jar away into the cupboard where I didnt spot it in the course of my routine so I dropped to Zero for about 4-5 days and after being astounded I hadn't had any crashes during the car drama I got some really easily e.g. Zoom call for kids Parent/teacher meeting, minor outting for shopping items.

I'll keep trying this and see if I get back to extra resilience against PEM on this stuff or if it was a fluke.

I typically do not get excited or have placebo style stuff happening - I've been on lots in the past that I thought technically *should* help me but despite that they didn't (MitoQ, nootropics etc)

so summary..
couple of weeks or ~1G a day and I seem to not get PEM crashes as easily even during some significant dramas.

tablets go missing for 4-5 days, small things quickly start hitting me with dopey,slurred,dizzy,blurry,slouchy PEM @
 
Messages
4,132
Likes
4,786
Location
Vermont, school in Western MA
I used to have fairly substantial benefits from various forms of thiamine, both fat soluble and water soluble, but recently when I've tried it (allithiamine specifically) it's given me headache and dizziness. Why would I suddenly be intolerant to it, I haven't taken enormous for it to build up. Any insights?

Ps most of what has changed since the last time I benefited from it has been increasing severity of craniocervical instability, mcas, general spine degeneration, some pressure headaches, and assorted strange symptoms post covid. The long covid stuff is strange, even though it overlaps with me/cfs, there are definitely some additional things unique to it. I also have tethered cord and neuropathy. Thanks
 

EtherSpin

Senior Member
Messages
248
Likes
381
Location
Melbourne , Australia
I used to have fairly substantial benefits from various forms of thiamine, both fat soluble and water soluble, but recently when I've tried it (allithiamine specifically) it's given me headache and dizziness. Why would I suddenly be intolerant to it, I haven't taken enormous for it to build up. Any insights?
the docs who suggest the higher doses seem to say (in the couple of things I read last month) that headaches and a bit of crappiness is very common when redressing deficiency or kicking things up a notch where a metabolic process was held back by lack of the stuff.
i guess my question would be, when you tried it those few times recently, did you take a further dose the day after the headaches etc ?

without getting into masochistic territory maybe that would tell you if its gonna be of help again
good luck, any gain we can get is like manna from heaven to an efficiently paced person operating on sub 10% energy!
 
Messages
47
Likes
84
I have tried several forms of thiamine: thiamine hcl, benfotiamine, allithiamine and sulbuthiamine. I couldn't use allithiamine and sulbutiamine at all, sulbutiamine acted like an amphetamine-type of drug and caused me insomnia and allithiamine made me smell like crazy.

Benfotiamine did help me at first, it made me less fatigued and I felt relaxed. I began with 160mg and upped my dose to 240mg after 2 weeks. I used it with B-complex and riboflavin (active form). Chronic urticaria is one of my CFS-symptoms and benfotiamine (just like any other form of thiamine) made that worse but riboflavin helped with that. Unfortunately last week benfotiamine started to make me feel ill, my fatigue was worse, I had headaches, body aches, dizziness, and nausea. These symptoms subsided when I quitted using benfotiamine. I wonder was this a side effect, meaning that I shouldn't use benfotiamine or did it mess up my electrolyte balance or something. Can refeeding syndrome happen at later stage of using thiamine?
 
Last edited:

dannybex

Senior Member
Messages
3,507
Likes
2,616
Location
Seattle
Benfotiamine did help me at first, it made me less fatigued and I felt relaxed. I began with 160mg and upped my dose to 240mg after 2 weeks. I used it with B-complex and riboflavin (active form). Chronic urticaria is one of my CFS-symptoms and benfotiamine (just like any other form of thiamine) made that worse but riboflavin helped with that. Unfortunately last week benfotiamine started to make me feel ill, my fatigue was worse, I had headaches, body aches, dizziness, and nausea. These symptoms subsided when I quitted using benfotiamine. I wonder was this a side effect, meaning that I shouldn't use benfotiamine or did it mess up my electrolyte balance or something. Can refeeding syndrome happen at later stage of using thiamine?
Thiamine is considered 'the' main vitamin for refeeding syndrome (shown in multiple studies) so I highly doubt that's the issue (although not sure if benfo-t has the same mechanisms as regular thiamine).

Folate is needed to activate thiamine, and thiamine needs other minerals and no doubt vitamins like molybdenum, magnesium, etc., to work, so the benfotiamine could be depleting those and/vice versa. Taking a b-complex muddies the waters, meaning one of the b's in it could be causing the symptoms you describe.
 
Messages
47
Likes
84
Folate is needed to activate thiamine, and thiamine needs other minerals and no doubt vitamins like molybdenum, magnesium, etc., to work, so the benfotiamine could be depleting those and/vice versa. Taking a b-complex muddies the waters, meaning one of the b's in it could be causing the symptoms you describe.
I have been using the same B-complex before and I haven't noticed any symptoms from it, so I don't think it is the cause. Yes, I agree that electrolyte defiencies (magnesium, potassium) and molybdenum may be the cause, or sulfur sensitivity. The symptoms I had, sound a lot like sulfur sensitivity:

"An intolerance to sulfur can manifest as asthma/shortness of breath, hives/itchy skin, headaches, nausea, diarrhea, flushing, high or low blood pressure, brain fog, chronic stress and fatigue"
 

dannybex

Senior Member
Messages
3,507
Likes
2,616
Location
Seattle
I have been using the same B-complex before and I haven't noticed any symptoms from it, so I don't think it is the cause. Yes, I agree that electrolyte defiencies (magnesium, potassium) and molybdenum may be the cause, or sulfur sensitivity. The symptoms I had, sound a lot like sulfur sensitivity:

"An intolerance to sulfur can manifest as asthma/shortness of breath, hives/itchy skin, headaches, nausea, diarrhea, flushing, high or low blood pressure, brain fog, chronic stress and fatigue"
Molybdenum is the mineral needed to process sulfur or sulfites. ;)
 

ZeroGravitas

Senior Member
Messages
113
Likes
534
Location
UK
I recently hit a bunch of negative effects, after titrating up to only 100mg of (regular) B1, that have persisted unexpectedly for a couple months after stopping:

(1) It sniped my faltering executive function. Going from being able to do on top-down focused tasks (blogging, light researching, online shopping) for a few hours on ~50% of days. I have ADHD-PI and cognitive issues are usually my most limiting, with ME/CFS.

(2) Made me need an extra ~2 hours in bed/asleep, up from 10 sleep and 2 on my phone 'getting up' (12 total) to sometime 14 total. Yet a paradoxically shorter non-24-hour sleep cycle (from ~25.6 hours to ~25.1). After being on a consistent (if inconvenient) ~15 day (~2 week) repetition for 7 years (since temporarily fixing it to 24h), it's now ~20 days (~3 weeks). Which seem oddly consistent, like it's changed something at a cellular level in the astrocyctes of my SCN (brain). Although, it also makes some sense as I'm feel a more overwhelming force to go to bed or get dinner.



(3) I also have had new joint issues flare up, as I've just posted about trying to figure out in this thread. But I'm mostly suspicious of either iodine and/or malate (magnesium).

I've read through this thread, a few days ago, so I'm aware that you've (between you) observed B1 cause re-feeding/knock-on shortages of other metabolites. I've previously posted in Mary's thread about phosphate (for B1 refeeding), giving me unprecedented flu-like symptoms, after trying it for my osteoporosis.

It might not have been a great plan to try it on its own. But when I last gave it a whirl, years back, I quickly added the rest of the B vitamins in afterwards, then had to stop them all, as something among them was making me progressively worst. I've avoided Bs for years, since, as too difficult. Possibly all (or most) being problematic due to my histamine intolerance, and them being produced by fermentation (as I'd read various people say, back then).

So, I wanted to give B1 a fair shot on its own, this time; I'd seen the poll (reposted on social media) about B1 mega-dosing helping most pwME/CFS (or was it this thread?). And I was groping about with already weak cognitive function, trying to find an improvement that would let me return properly to get a new round of testing done. Thankfully, I seem to have found that gain in illuminating my daily hummus supper (leaving me short on food options). Hence engaging here (and starting to pursue Genova NutrEval testing again).

But, for now, I'm wondering what mechanism(s) might be behind these effects I've had from B1? And so what (supplements) might push in the opposite direction? In terms of increased fatigue, etc. Thanks.
 
Messages
47
Likes
84
I also tried using a lower dose (thiamine hcl) as I noticed that benfotiamine was too much for me to handle. The first 4 days of using 100mg I felt great, I was full of energy but at the same time I was more relaxed and I was no longer constipated. I was having a mild headache when I woke up the first few days but nothing unbearable. I was using B-complex and magnesium citrate with thiamine hcl. The downside was, my sleep was worse. Well, I did sleep but had plenty of dreams during the night and every time I woke up after 5-6 hours, feeling refreshed and couldn't sleep any longer. It was a strange feeling, I was at the same time feeling refreshed when waking up but still tired like not having enough sleep.

On fifth day, fatigue hit. I'm now trying to figure out what caused it. Is it lack of potassium or phosphorus, or something else. Once when I supplemented with benfotiamine, I noticed that the negative symptoms went away with nicotinamide riboside. Is this a sign that when you supplement with thiamine, you should get more niacin also?

I'm also trying to figure out why thiamine affects sleep so much. Is it a good sign that it's repairing my brain or does it stimulate sympathetic nervous system, which is not a good thing.
 

ljimbo423

Senior Member
Messages
4,530
Likes
12,141
Location
United States, New Hampshire
I'm also trying to figure out why thiamine affects sleep so much.
80-100 mg of thiamine a day almost completely stopped my moderate to severe insomnia. It's about 95% gone. It's been about a year since I realized this, but I still don't know why it works so well.

It energizes me during the day, so I don't take it at night, but at night, helps me sleep. So it has both stimulating properties for me during the day, and sedating properties at night.
 
Messages
47
Likes
84
80-100 mg of thiamine a day almost completely stopped my moderate to severe insomnia. It's about 95% gone. It's been about a year since I realized this, but I still don't know why it works so well.

It energizes me during the day, so I don't take it at night, but at night, helps me sleep. So it has both stimulating properties for me during the day, and sedating properties at night.
Then in your case at least, it shouldn't stimulate sympathetic nervous system, at least not at night. That's encouraging. Do you take minerals or other B-vitamins with thiamine?
 
Messages
12
Likes
22
Hello everyone,
I have started taking high doses of thiamine almost 4 weeks ago and the results have been mixed, but overall after 2 or 3 weeks it has started to give me bad anxiety. I was taking around 1000mg (even went as far as 1800mg one day) of thiamine HCL and then switched to allithiamine (Thiamax) 3 days ago and I can't even sleep anymore ! I'm glad because I feel like I have much more energy and more mental clarity but I can't really enjoy it if I have anxiety and insomnia. Has someone had reactions like this with allithiamine and has been able to find a solution to anxiety/insomnia ? I don't want to give up on thiamine because I feel like it's helping with my energy levels but I also don't want to crash because I can't sleep anymore. My heart is also skipping beats and it's a bit scary.
 

Kadar

Senior Member
Messages
136
Likes
134
@ashram in my (and not only) experience b1 depletes b2 and b6 and potassium. But all that deficiencies were with rapid heart beat.

I also heard some forms of b1 (not hcl) causing glutathione depletion, thus why there may be some side effects.

Another idea comes to mind is copper deficiency, because b1 is sulfurous, and sulfur is copper antagonist. It wouldn't happen on low doses but would with your doses I guess.

You probably have problems not certainly with allithiamine but thiamine overall, first one is more potent that's why.

Do you have neuropathy in your extremities? (B6 deficiency) Heat in them? (B2/b6 d. ) Light sensitivity of eyes (b2 deficiency) shortness of breath ,leg cramps?(potassium d.) ?
 
Messages
12
Likes
22
@ashram in my (and not only) experience b1 depletes b2 and b6 and potassium. But all that deficiencies were with rapid heart beat.

I also heard some forms of b1 (not hcl) causing glutathione depletion, thus why there may be some side effects.

Another idea comes to mind is copper deficiency, because b1 is sulfurous, and sulfur is copper antagonist. It wouldn't happen on low doses but would with your doses I guess.

You probably have problems not certainly with allithiamine but thiamine overall, first one is more potent that's why.

Do you have neuropathy in your extremities? (B6 deficiency) Heat in them? (B2/b6 d. ) Light sensitivity of eyes (b2 deficiency) shortness of breath ,leg cramps?(potassium d.) ?
Thanks a lot for your answer. It's so scary to navigate supplements alone, I feel overwhelmed sometimes, so your reply is more than welcome !

I've had a recent blood test and I haven't received all of the results yet, but my potassium seems fairly high 5.2mmol/L (3.7-5.3)

I haven't been tested for B2, and I should receive my B6 in a few days. I haven't tested copper yet.

When I was taking high doses of thiamine HCL, I had times where my legs and arms were shaking... I'm not sure if I felt heat in them. I don't have light sensitivity at all, but the worst symptom was shortness of breath, pain in the heart and skipping heartbeats. I don't have cramps though... oh and I also had some sorts of huge panic attacks as if I was going to turn crazy. That was really weird because I'm usually very calm and handle the sickness well.

Now with allithiamine it's just a sort of anxiety + heart skipping beat or pounding really hard just one time all day, it's kind of scary. Yesterday I took 200mg and I also had a sort of unusual headache. I just took 50mg today. I wonder if I should keep going with B1... but it really gives me extra energy so I don't really want to stop.

About glutathione, I'm also taking N-Acetylcysteine at the same time. (600mg a day) I used to take SAMe but I've stopped last week because of the panic attacks I've had last week. I thought it was because of SAMe at that time.

Again, thanks a lot for your answer, that's really kind of you !