what’s the rundown on high dose thiamine?

dylemmaz

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im starting high dose thiamine this week and i want to make sure i do it right. i haven’t really seen a good playbook on cofactors needed, dosing, safety, and what not?

am i supposed to supplement magnesium? anything else? other b vitamins?

is it generally safe, even at doses upwards of 1,800mg? my pharmacist says he can only find it’s safe at 500 mg.

any medication interactions to be aware of? i’m on ldn, abilify, mestinon, metoprolol, sometimes use celebrex

anything else i need to know? thanks!!
 

seamyb

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It's safe as in non-toxic. But you gotta be careful with balances of other nutrients. For example, when supplementing B1, the B2 gets used up and the tiny stores in the liver depleted. Magnesium is a cofactor and so I think gets used up as well. You'll be driving glycolysis. So anything in the glycolysis pathway will be needed and used.

Hormones Matter is a website full of info on this. But it's very "we're all deficient in thiamine". Still very useful.

I actually was deficient in thiamine. I had bad burning pain all over when I ate any carbohydrate. When I supplemented thiamine, this resolved. Can't say I whether I found any other benefits, because thiamine seemed to flare my air hunger. So I stopped. I supplement allithiamine every so often now. It crosses the blood-brain barrier and absorbs in the gut at a far higher rate. Thiamine hcl is rate limited to about 4 mg from active absorption. So this is the maximum you will get from active absorption, even from 1,800mg. However, there is a passive mode of absorption as well which is dose dependent. But you're still only going to be absorbing a fraction of what you take in.

@Mary has experienced phosphorus depletion from thiamine. Can't say I ever did.
 

dylemmaz

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So anything in the glycolysis pathway will be needed and used.
besides magnesium do you know what else is in this pathway, off the top of your head?
I supplement allithiamine every so often now. It crosses the blood-brain barrier and absorbs in the gut at a far higher rate.
i purchased allithiamine lthough i couldn’t find much info about the dosing so i never used it. the dosing in other studies suggested 600-1,800mg, but that was with thiamine hcl. do you know what a similar range would be for the altlithiamine?

and by the way, thank you so much for info you already provided. very helpful!
 

seamyb

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besides magnesium do you know what else is in this pathway, off the top of your head?
So glycolysis needs thiamine pyrophosphate, flavin adenine dinucleotide (activated B2), cosubstrates nicotinamide adenine dinucleotide (derived from B3), Mg and coenzyme A (not sure what's required to make this though). And of course sugar. I think it's possible to develop low blood sugar if you take a lot of thiamine and no carbs.

do you know what a similar range would be for the altlithiamine?
Ehhh not really, but I think a typical megadose is bout 300mg. Definitely do not take 1,800mg allithiamine. Also, titrate with B1. Start low and go slow. Paradoxical effects are common, whereby you get worse before getting better. They say a bad effect is a good sign - but a bad effect can also just be CFS being a monkey.
 

seamyb

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I should say that where I say "glycolysis needs", what I meant is "the single enzyme pyruvate dehydrogenase needs". There is more to glycolysis before this step, but this is the thiamine-dependent step.
 

Judee

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any medication interactions to be aware of? i’m on ldn, abilify, mestinon, metoprolol, sometimes use celebrex
That's a lot. I'm wondering if you shouldn't just add a multi-vitamin and see how your body deals with that first.

Where are you with your disease? Are you stable or have you been going downhill?

I said it on another thread too. I think we throw so much at this disease that I think we undo some of our gains in our desperation.

At least maybe just start with 100mg of the thiamine for a few days and see how it goes. ??

That's just my opinion so you can take it or toss it.
 

dylemmaz

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That's a lot. I'm wondering if you shouldn't just add a multi-vitamin and see how your body deals with that first.

Where are you with your disease? Are you stable or have you been going downhill?
thank you. personally my situation is not fun at all so i am taking lots of medications to compensate and try to improve quality of life. most of my medications help me. i really want to get rid of mestinon or metoprolol but using one or the other doesn’t help my heart rate enough and i really want to stay below my AT. i’ve been trying to get an ivabradine prescription and cut both of those to see if it’ll help more but its just so hard to get it prescribed and i don’t have the energy to keep trying with my doctor. my pots is very bad
 

mermaid

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Hello @dylemmaz I don't come on often, but as I have just started high dose Thiamine also, thought I would look to see if there was anything about it on PR, and found your post.

So I am no expert and cannot help you but happy to compare notes. I have looked at a few sites to make sure I get it right. I have taken a B complex for a long time, so I am sure I am not deficient in Thiamine, but am interested that high dosage works differently. I take magnesium too so should be Ok on that as well.

I didn't really know what kind of Thiamine to buy but someone had recommended G and G in the Uk where I am, and that is the Thiamine HCL kind. I began on Monday with 100mg and increased it a little each day so am up to 450 today. Not sure yet if it's made any difference or not - probably not taking in enough, although the Health Rising article showed that some people did get results at smaller doses.

It may be coincidence, only time will tell, but I have had a lot of pain with Plantar Fasciitis in the last few months that has got worse rather than better, having tried lots of things to help it. Weirdly, it has improved a lot in the last 2 days, but that may be down to wearing different footwear, but I am keeping an eye on that one, as it's been really debilitating. Principally though, I am taking it for ME/CFS not for that issue as I don't know of anyone else who has tried it for PF!
 

Learner1

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im starting high dose thiamine this week and i want to make sure i do it right. i haven’t really seen a good playbook on cofactors needed, dosing, safety, and what not?

am i supposed to supplement magnesium? anything else? other b vitamins?

is it generally safe, even at doses upwards of 1,800mg? my pharmacist says he can only find it’s safe at 500 mg.

any medication interactions to be aware of? i’m on ldn, abilify, mestinon, metoprolol, sometimes use celebrex

anything else i need to know? thanks!!
I always Google "drugname nutrients depleted" to figure out what I need to watch for. And, because I take several medications, I do a comprehensive nutrient test once a year to correct for any imbalances.

You are correct that you could end up with imbalances taking a mega dose of something and cause a cascade of problems.

Nutrients get used in one or more pathways that have other ingredients, called cofactors. If you al of a sudden dump in a huge amount of one of these, you'll use up the other ones pretty fast and then get stuck because you ran out of the others.

I've been on a balanced program of B vitamins, including 750mg benfotiamine, s form of B1. I kept reading, especially from the Hormones Matter/Derrick Lonsdale/Elliott Overton crowd, how benfotiamine doesn't go through the blood brain barrier and only allithiamine would do. (I don't think this is true at all as I have no brain symptoms.)

But, I thought I'd give it a try. After repeatedly asking that crowd for dosing info and getting nowhere with them telling me anything useful, I decided to start conservatively at 300mg of Thiamax.

I ended up with neuropathy (tingling) in my hands and feet within a week. This is not good and a sign that mitochondria are being damaged. It took me about 3 weeks to realize this was an ongoing problem and retrace my steps to figure out that's what did it.

I stopped it for 3 days, then gradually went back to benfotiamine, starting at 250mg, then 500mg, then 750mg over 3 weeks.

My neuropathy started to resolve and went away completely.

This stuff isn't candy, and more is not better. Thiamine deficiency is very real, and there are amazing stories of recovery after taking some from deficient people, but taking enormous doses can backfire fast. And I know my 750mg dose is very high already, but I'm taking all the cofactors in a balanced amount, including molybdenum.

It might be prudent to learn more about B vitamins and your own nutrient status before embarking on a mega dose protocol.
 
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I always Google "drugname nutrients depleted" to figure out what I need to watch for. And, because I take several medications, I do a comprehensive nutrient test once a year to correct for any imbalances.

You are correct that you could end up with imbalances taking a mega dose of something and cause a cascade of problems.

Nutrients get used in one or more pathways that have other ingredients, called cofactors. If you al of a sudden dump in a huge amount of one of these, you'll use up the other ones pretty fast and then get stuck because you ran out of the others.

I've been on a balanced program of B vitamins, including 750mg benfotiamine, s form of B1. I kept reading, especially from the Hormones Matter/Derrick Lonsdale/Elliott Overton crowd, how benfotiamine doesn't go through the blood brain barrier and only allithiamine would do. (I don't think this is true at all as I have no brain symptoms.)

But, I thought I'd give it a try. After repeatedly asking that crowd for dosing info and getting nowhere with them telling me anything useful, I decided to start conservatively at 300mg of Thiamax.

I ended up with neuropathy (tingling) in my hands and feet within a week. This is not good and a sign that mitochondria are being damaged. It took me about 3 weeks to realize this was an ongoing problem and retrace my steps to figure out that's what did it.

I stopped it for 3 days, then gradually went back to benfotiamine, starting at 250mg, then 500mg, then 750mg over 3 weeks.

My neuropathy started to resolve and went away completely.

This stuff isn't candy, and more is not better. Thiamine deficiency is very real, and there are amazing stories of recovery after taking some from deficient people, but taking enormous doses can backfire fast. And I know my 750mg dose is very high already, but I'm taking all the cofactors in a balanced amount, including molybdenum.

It might be prudent to learn more about B vitamins and your own nutrient status before embarking on a mega dose protocol.
That's interesting you encountered that. When I first started on Benfotiamine, I had real advances in cognition, but then that degraded quickly and I had multiple issues arise. I didn't have neuropathy, but did get rashes which I traced back to B6 deficiency; once I started taking higher doses of P5P that helped resolve it. It sounds like B6 depletion was similar between us.

Of a similar point around cofactors; I've been stuggling with what I believe to be is insufficent calcium, and have switched to a stronger, wider vitamin K complex that is helping. However it seems like my Thiamine store has been slowly lowering as I do this (currently increasing the amounts each day to deal with it); I've been doing some reading there seems to be an interaction between Calcium, Magnesium, and Thiamine, perhaps something else for others to look into/be aware of.
 

nryanh94

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I always Google "drugname nutrients depleted" to figure out what I need to watch for. And, because I take several medications, I do a comprehensive nutrient test once a year to correct for any imbalances.

You are correct that you could end up with imbalances taking a mega dose of something and cause a cascade of problems.

Nutrients get used in one or more pathways that have other ingredients, called cofactors. If you al of a sudden dump in a huge amount of one of these, you'll use up the other ones pretty fast and then get stuck because you ran out of the others.

I've been on a balanced program of B vitamins, including 750mg benfotiamine, s form of B1. I kept reading, especially from the Hormones Matter/Derrick Lonsdale/Elliott Overton crowd, how benfotiamine doesn't go through the blood brain barrier and only allithiamine would do. (I don't think this is true at all as I have no brain symptoms.)

But, I thought I'd give it a try. After repeatedly asking that crowd for dosing info and getting nowhere with them telling me anything useful, I decided to start conservatively at 300mg of Thiamax.

I ended up with neuropathy (tingling) in my hands and feet within a week. This is not good and a sign that mitochondria are being damaged. It took me about 3 weeks to realize this was an ongoing problem and retrace my steps to figure out that's what did it.

I stopped it for 3 days, then gradually went back to benfotiamine, starting at 250mg, then 500mg, then 750mg over 3 weeks.

My neuropathy started to resolve and went away completely.

This stuff isn't candy, and more is not better. Thiamine deficiency is very real, and there are amazing stories of recovery after taking some from deficient people, but taking enormous doses can backfire fast. And I know my 750mg dose is very high already, but I'm taking all the cofactors in a balanced amount, including molybdenum.

It might be prudent to learn more about B vitamins and your own nutrient status before embarking on a mega dose protocol.
I’m curious; I’m not scientifically inclined in any way. But looking online just now it seems Abilify depletes almost every B vitamin, coq10, calcium, Carnitine, vitamin a, vitamin c, vitamin k, biotin and inositol. As I’ve recently developed tolerance for abilify, I wonder if perhaps the drug needs some of these to perform the function that was helping and I have just been depleted.
 

Learner1

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I’m curious; I’m not scientifically inclined in any way. But looking online just now it seems Abilify depletes almost every B vitamin, coq10, calcium, Carnitine, vitamin a, vitamin c, vitamin k, biotin and inositol. As I’ve recently developed tolerance for abilify, I wonder if perhaps the drug needs some of these to perform the function that was helping and I have just been depleted.
Good thoughts, all. It seems irresponsible to me to be prescribing it without thinking about this, especially in a group of patients who already tend to have nutrient deficiencies...
 
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Hopefully I am not repeating what anyone else has said.

But for thiamine I had no issues titrating up to 1200mg a day over 2 weeks and coming back down again to about 600mg a day. I got temporary remission of symptoms for 2 days at 1200mg. The issue really is cofactors and the fact you might deplete some other metabolites or nutrients very quickly and it won't be clear which ones they are. This could be anything from magnesium to phosphorous and potassium. I don't think this was ever factored into the original study. (fyi I never figured out what co factors I had depleted and I settled at 300mg a day before discontinuing on the protocol (in my signature) as this was superior to the thiamine I was taking).

But Cort's post has a great overview:

https://www.healthrising.org/blog/2021/04/15/thiamine-b-1-chronic-fatigue-syndrome-fibromyalgia/
 
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Sophiedw

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I’m curious; I’m not scientifically inclined in any way. But looking online just now it seems Abilify depletes almost every B vitamin, coq10, calcium, Carnitine, vitamin a, vitamin c, vitamin k, biotin and inositol. As I’ve recently developed tolerance for abilify, I wonder if perhaps the drug needs some of these to perform the function that was helping and I have just been depleted.
By the way do you have a reference for these induced deficiencies? Thanks
 

Kadar

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@dylemmaz Manganese stores B1. Using it with b1 in form of benfotiamine induced high b2 need in me (heart palpitations, heat/inflammation feeling, anxiety). But effect in the end is great. B6 will be depleted too, as mentioned (twitching eye and numb extremities after lying down are my symptoms of deficiency). And don't forget potassium if you use big doses of B1 (for heart palpitations, muscle cramps, anxiety)
 
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