High dose vitamin B1 (thiamine)

[Kadar]

@ashram headache is one of b2 deficiency symptoms, by the way. I got b2 drop taking b1 very fast. I would try b2 and potassium. And blood tests are not always useful, you still may have a deficiency. And of course please stop b1. You may also try rising vitamin A and manganese levels a bit, because they are involved in b1 metabolism. When I was manganese deficient I was loosing b1 everyday. So maybe if you're deficient too and take them you won't need b1 everyday to see effect.

I sometimes need lots of potassium taking high dose b vitamins, sometimes it's even 3g or so

 

[MonkeyMan]

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.

Hi @ashram, I had almost exactly the same experience! Started high(ish)-dose thiamine (200 mg/daily every morning) one month ago, and it definitely helped my energy, but the price I've paid has been insomnia that's gotten worse and worse. So yesterday I didn't take any and I slept much better last night.

See https://snoringhq.com/blog/7-vitamins-and-minerals-your-body-needs-to-sleep-better/ for a good summary.

Same thing happens, by the way, when I use high-THC cannabis. I feel much more energetic, but then have insomnia.

 

[dannybex]

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.

IMO, it's the extremely bitter taste of the allithiamine.

I know, sounds crazy, but there's a reason why as humans we don't eat a lot of bitter foods. Both ayurvedic and traditional chinese medicine understand the effects of different tastes on the body, and how too much of one taste can create issues if it's not balanced by other tastes.

I had the same problem. I've been taking regular thiamine for years, but after reading a lot of Lonsdale's work, I tried allithiamine about six months ago. Couldn't tolerate it for even a day -- got all tense, irritable, and restless. Went back to regular thiamine without issues.

As others have mentioned, you might need some of the other b-vits, as they all work together -- and you may need to lower your dose of thiamine itself (we're all different), but it might just be the form of thiamine you're taking.

 

[ashram]

@ashram headache is one of b2 deficiency symptoms, by the way. I got b2 drop taking b1 very fast. I would try b2 and potassium. And blood tests are not always useful, you still may have a deficiency. And of course please stop b1. You may also try rising vitamin A and manganese levels a bit, because they are involved in b1 metabolism. When I was manganese deficient I was loosing b1 everyday. So maybe if you're deficient too and take them you won't need b1 everyday to see effect.

I sometimes need lots of potassium taking high dose b vitamins, sometimes it's even 3g or so

@Kadar I'm a bit afraid of taking more potassium because I'm already high, but yeah I'm definitely gonna try B2. I'm already taking a B-complex but that might not be enough I guess. You think I should stop B1...? I'm having a hard time giving up on it because it gives me energy, but of course I don't want it to make me worse I guess... I'm always thinking that my body is going to adjust to it, but of course I have no idea.

Hi @ashram, I had almost exactly the same experience! Started high(ish)-dose thiamine (200 mg/daily every morning) one month ago, and it definitely helped my energy, but the price I've paid has been insomnia that's gotten worse and worse. So yesterday I didn't take any and I slept much better last night.

Same thing happens, by the way, when I use high-THC cannabis. I feel much more energetic, but then have insomnia.

@MonkeyMan damn that really sucks ! I have the feeling that I've FINALLY found something that gives me energy after all these years but it also makes me breathless and sleepless... I wish I could continue B1 without having the side effects.

IMO, it's the extremely bitter taste of the allithiamine.

I know, sounds crazy, but there's a reason why as humans we don't eat a lot of bitter foods. Both ayurvedic and traditional chinese medicine understand the effects of different tastes on the body, and how too much of one taste can create issues if it's not balanced by other tastes.

I had the same problem. I've been taking regular thiamine for years, but after reading a lot of Lonsdale's work, I tried allithiamine about six months ago. Couldn't tolerate it for even a day -- got all tense, irritable, and restless. Went back to regular thiamine without issues.

As others have mentioned, you might need some of the other b-vits, as they all work together -- and you may need to lower your dose of thiamine itself (we're all different), but it might just be the form of thiamine you're taking.

I'm taking pills though so the taste is not really a problem ! (I did take 50mg today so I had to split open one and it did taste aweful, but I already had the side effects when I was swallowing the whole pill). Regular thiamine (HCL at least) was even worse than allithiamine for me I think. I really had trouble breathing... my sleep was better than with allithiamine though. Maybe I should try benfo.
I'm already taking a B-complex but maybe that's not enough ?

 

[dannybex]

I wasn't talking about how it tastes to you -- but how that taste has an effect on one's body.

For example, an excess of very sour or astringent foods/drinks not only pucker one's mouth, but can 'pucker' or tighten one's muscles, tendons, constrict one's circulation, etc., -- if not balanced by other tastes (sweet, pungent, bitter, salty). Whenever I get some sort of tendonitis or knotted muscles in my back -- and this goes back 15+ years -- it's always been because I've eaten "too much" sour/astringent food as part of a meal in the previous half day or so.

Like I said, it sounds crazy, but I've found it to generally be true, so I try to make sure I don't eat too much of one taste without balancing it with others.

Here's a good overview:

https://www.acupuncturetoday.com/mpacms/at/article.php?id=32403

 

[SickOfSickness]

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 believe it requires molybdenum. Selenium too? B12?

 

[ashram]

I wasn't talking about how it tastes to you -- but how that taste has an effect on one's body.

For example, an excess of very sour or astringent foods/drinks not only pucker one's mouth, but can 'pucker' or tighten one's muscles, tendons, constrict one's circulation, etc., -- if not balanced by other tastes (sweet, pungent, bitter, salty). Whenever I get some sort of tendonitis or knotted muscles in my back -- and this goes back 15+ years -- it's always been because I've eaten "too much" sour/astringent food as part of a meal in the previous half day or so.

Like I said, it sounds crazy, but I've found it to generally be true, so I try to make sure I don't eat too much of one taste without balancing it with others.

Here's a good overview:

https://www.acupuncturetoday.com/mpacms/at/article.php?id=32403

I didn't know about it ! Thanks for the information.

I believe it requires molybdenum. Selenium too? B12?

Maybe ? It's so confusing and frustrating to navigate supplements alone... I've had to stop B1 because I haven't slept for two days straight, and my heart is skipping beats all the time, I don't know what's happening. I've also started taking B12 yesterday so maybe that also caused insomnia ? Anyway I'm restless and I can't sleep at all, I feel like I'm going to become crazy, I really don't know what to do. I hope it just stops in a few days ??
I wish I could continue B1 without these horrendous side effects.

I've also received my B6 blood tests who seem to be fairly high. Could it explain the insomnia and extrasystolis ?

 

[ashram]

I've stopped taking thiamine 3 days ago. The anxiety seems to be calming down a bit but my heart feels very weak and has extrasystolis, I'm having trouble breathing and can't talk to people for too long because of that. What a nightmare. I wish I knew what went wrong !

 

[Nosferatu80]

I've stopped taking thiamine 3 days ago. The anxiety seems to be calming down a bit but my heart feels very weak and has extrasystolis, I'm having trouble breathing and can't talk to people for too long because of that. What a nightmare. I wish I knew what went wrong !

I'm having the exact same problems, I added b2 and the side effects eased for 2 days, potassium doesn't seem to make a difference and magnesium intensifies the side effects and also makes my gut worse (sibo+candida), has anyone solved this riddle yet? I was taking oral benfotiamine but injectable HCL does the same thing... I have CFS, ADD, dysbiosis and my peripheral neuropathy, muscle weakness and cramps got worse immensely after 3 months of NAC, I started an intramuscular b1/b12/b6 and I have the impression that it didn't help at all sometimes I think it even made the cramps worse since I have very strange reactions to b6 in any form, so I started using IM b1/b12 and the short of breath and heart side effects started to appear, I took a break and started oral benfotiamine and the side effects were even more severe, I really don't know what to do anymore...

 

[Judee]

muscle weakness and cramps got worse immensely after 3 months of NAC, I started an intramuscular b1/b12/b6 and I have the impression that it didn't help at all sometimes I think it even made the cramps worse since I have very strange reactions to b6 in any form, so I started using IM b1/b12 and the short of breath and heart side effects started to appear, I took a break and started oral benfotiamine and the side effects were even more severe, I really don't know what to do anymore...

No matter what I tried with the thiamine, it was aging me and making my ME much worse. I like what this member said in this post though: https://forums.phoenixrising.me/thr...lp-me-so-much-momentarily.89782/#post-2430384

It made me think that we are so super sensitive with this disease that maybe just taking things like these supplements that we react to so strongly only once a week to start would be better. Maybe later we can build up to a higher dose but slowly to see how our bodies handle it.

Pyrrhus also talked about starting with NAC on a once weekly schedule. He said that was difficult for him in the beginning and I think he increased his dosing a lot faster than I would have but at least it eventually became more tolerable for him by starting low. https://forums.phoenixrising.me/threads/glutathione-causing-anxiety-irritability.81246/#post-2304206

Anyway, just a thought.

Edit: Also I remember watching a video where the doctor said bad bacteria also use methylation so advised getting Sibo under control first before starting a methylation protocol. Otherwise, he said we're just "fertilizing" the bad guys.

 

[Nosferatu80]

No matter what I tried with the thiamine, it was aging me and making my ME much worse. I like what this member said in this post though: https://forums.phoenixrising.me/thr...lp-me-so-much-momentarily.89782/#post-2430384

It made me think that we are so super sensitive with this disease that maybe just taking things like these supplements that we react to so strongly only once a week to start would be better. Maybe later we can build up to a higher dose but slowly to see how our bodies handle it.

Pyrrhus also talked about starting with NAC on a once weekly schedule. He said that was difficult for him in the beginning and I think he increased his dosing a lot faster than I would have but at least it eventually became more tolerable for him by starting low. https://forums.phoenixrising.me/threads/glutathione-causing-anxiety-irritability.81246/#post-2304206

Anyway, just a thought.

Edit: Also I remember watching a video where the doctor said bad bacteria also use methylation so advised getting Sibo under control first before starting a methylation protocol. Otherwise, he said we're just "fertilizing" the bad guys.

Thanks for the links! I had a very interesting experience with NAC;
-A 60% improvement in my gut health
-A 90% improvement in my sinusitis
-An 80% improvement in oral thrush -Considerable energy and disposition during the day, remission of that constant feeling of flu and discomfort
-Slight improvement in tinnitus
-My skin was amazing, many of the acne spots and new blackheads disappeared, it was so smooth! My hair has also improved.
-I started to tolerate potato chips, garlic, onions, nuts, but of course everything in moderation, coffee didn't cause me so much anxiety and agitation either
- I had no more canker sores
-My sleep schedule has always been something between 3 hours of continuous sleep and a few naps of 20 or 30 minutes, it takes me hours to fall asleep and I pee a lot throughout the night! But with NAC I slept in a maximum of one hour, slept for 5 continuous hours and then two more cycles of 1 hour, just one pee per night.
-At little decrease in anxiety and depression


I started taking 600mg and then increased to 1200, at first the only side effects were a very large drop in concentration, increased daydreaming and mental ruminations but without accompanying anxiety or depression, just an almost constant state of inattention, in the third month the side effects in the musculature and nerves started out pretty heavy! There was a day that I woke up with my whole body aching, cramps in all the muscles and a very strong pain in the nerves of the feet and hands, I continued for a while and then completely stopped using it.

I found the links very interesting, comparing my experience with theirs I realize that despite the side effects of inattention my initial relationship with NAC was better than them, maybe that gives me hope of finding the right dose of B vitamins and NAC/glutathione.

What I often find conflicting is the relationship of B vitamins with SIBO and candida, each doctor seems to say something different, what is the verdict among users about oral supplementation of B vitamins and SIBO-candida? I know from my body that the only b vitamin that didn't cause me gut problems was b1, even the b2 that I decided to use together seems to have made my symptoms worse! How i would supplement NAC with B complex is a mystery for me, hahaha!

 

[Judee]

maybe that gives me hope of finding the right dose of B vitamins and NAC/glutathione.

Yeah, if it was working so well for you maybe have a "wash out" period and then try again to work back up to that ideal dose. Hopefully it will work for you again. Praying...esp since you got so much benefit from it.

what is the verdict among users about oral supplementation of B vitamins and SIBO-candida?

Idk. I just know a lot of us don't do well on B vitamins and many here mention SIBO. ??? You could see if someone did a poll and if not possibly post one. (I don't know how to do that or I would offer to help. )

I do know there was a thiamine poll on healthrising.org but I don't remember if it talked about SIBO sufferers at all.

How i would supplement NAC with B complex is a mystery for me, hahaha!

If you're able to do FB there are two Thiamine groups...one of them run by Elliot Overton who also has Youtube videos on it. Some of that was talked about in this thread. https://forums.phoenixrising.me/thr...eficiency-as-a-main-contributor-to-cfs.89406/

With tolerating some NAC and some Thiamine you might be able to figure out how to tolerate the others. Just go slow though. I think we tend to overdo everything in our desire to get well. Might be better to take what you can for a while, let your body get to a higher level of health and maintain it and then try to add some of the others slowly maybe even just a low dose multiple vitamin. ??

I know...it's easier said, than done especially when something is making us feel better.

 

[Nosferatu80]

Thanks! On the FB or reddit groups they always hit the magnesium or potassium button but magnesium makes everything worse and potassium I already use, difficult situation and I'm still not able to solve this thiamine puzzle, my heart got even weirder after the last attempt to return to use (only 50mg of benfotiamine and 20mg riboflavin), for 2 days b2 seemed to prevent arrhythmias but even without taking thiamine for 3 days my heart seems not to have improved at all! Last time the heartbeat and shortness of breath stopped after 2 days. Unfortunately it's practically my fifth attempt with b1, maybe I should just focus on b12 for the next months till neuropathy improve.

 

[aaron_c]

@godlovesatrier I'm curious to know how your thiamine experiment panned out in the end. Did you give up on it? If so what was the issue that you couldn't get past? And did the 5-HTP continue working to combat the insomnia?

 

[Nosferatu80]

@aaron_c I know the question is not for me but I deeply regret having taken thiamine, in addition to having screwed up the rhythm of my heart and breathing it also made my insomnia worse by 10x, I can't sleep anymore, now i can only nap, an unbearable situation...

 

[Mary]

@aaron_c I know the question is not for me but I deeply regret having taken thiamine, in addition to having screwed up the rhythm of my heart and breathing it also made my insomnia worse by 10x, I can't sleep anymore, now i can only nap, an unbearable situation...

@Nosferatu80 - when I first took thiamine, it gave me a really nice boost in energy the next day, I hadn't felt like that in many years. And then the day after I was hit with severe fatigue. My first thought was potassium depletion which had happened when I started methylfolate in 2010 (refeeding syndrome). However, potassium did nothing for the fatigue. So I had to stop the thiamine, much to my disappointment. A few years later I tried it again, same result, only this time I did more investigating and read that hypophosphatemia was the hallmark of refeeding syndrome - bingo! I read up on foods high in phosphorous, had some kefir on hand and drank probably 3 glasses, and within a few hours the severe fatigue was dissipating. I've been taking a phosphorous supplement off and on ever since and am able now to take thiamine with no problem.

I just read that low phosphorous can cause cardiac symptoms, so that might be the issue with you (or not), but I think it's certainly worth investigating. I think we all know about potassium deficiency but not so much about phosphorous. It can be difficult to find a phosphorous supplement but if you're interested let me know and I'll share what I found.

 

[Nosferatu80]

Interesting, what dosage do you suggest? Did you also have insomnia when you were lacking in phosphorus? Did you feel any negative effects on your gut when you started supplementing? I'm machine gunning you with questions

 

[ZeroGravitas]

but magnesium makes everything worse

Which types of magnesium have you tried? It's personal, but glycinate and taurate give me fatigue. Citrate other issues. Malate I had to stop after years due to new joint and neck issues. Orotate is currently good.

Otherwise, sorry, I don't have many similarities/insights with your experience.

hypophosphatemia

A per your legendary thread. Kind of odd I don't see more talk of phosphate, as it's supposed to be quite commonly low in ME.

Yeah, phosphate supplements are oddly tricky (given it's ubiquitous use in processed food). The Swanson monosodium phosphate I was taking (as recommended) got discontinued. Been off it for 2 years. Hoping to see how my bone density has been, since.

I was half looking at a tri-sodium-phosphate supp aimed at sporting performance, on Amazon. I wondered if the extra sodium could be a benefit for low blood pressure. Or more of a negative...

 

[Nosferatu80]

@ZeroGravitas , Orally i tried malate, glycinate and citrate, dermally was citrate and magnesium sulfate.
Fist 3 nights using citrate cream was amazing for my sleep but horrendous to my guts, the next few days my joints, heart, breath and muscles were completely messed up.

 

[Mary]

A per your legendary thread.

that's funny!

Kind of odd I don't see more talk of phosphate, as it's supposed to be quite commonly low in ME.

I didn't realize low phosphate is supposed to be quite common in persons with ME/CFS, but I'm not surprised to hear this. We seem to have so many nutritional deficiencies! I saw a thread by one other person who had a similar reaction to thiamine - it caused his phosphorous to tank and I wish I had a link to the thread but I don't!

Thiamine is such a powerful nutrient - it can help improve cardiac function in heart failure:

Effects of Thiamine on Cardiac Function in Patients With Systolic Heart Failure: Systematic Review and Metaanalysis of Randomized, Double-Blind, Placebo-Controlled Trials​

deficiency can cause heart failure: Thiamine and Heart Failure

I was half looking at a tri-sodium-phosphate supp aimed at sporting performance, on Amazon. I wondered if the extra sodium could be a benefit for low blood pressure. Or more of a negative..

I wonder how that would compare to this product - which is what I buy. It's also called Phos-Nak, which is the exact same thing, only it costs more. Each packet contains 250 mg phosphorous (20% of RDA, 160 mg. of sodium (7% of RDA) and 280 mg. potassium (6% of RDA) So I think both the sodium and potassium are negligible. I used to buy the Swansons' product as well, before they discontinued it - it was cheap too!