what’s the rundown on high dose thiamine?

[Xisca]

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

....and they are pretty right if we talk about subclinical deficiency. Actually livestock are touched, fish like salmon (very new, article from 2020), also involved in bee's collapse.
Then wild moose tested deficient...
It comes from what blocks microbes synthesis, lack of ruminant manure, ruminants fed grains and switching to thiaminase synthesis... Glyphosate is implicated too because it favors blue green algae... also synthesizing thiaminase!

They have a FB group, understanding mitochondria nutrients, and there is a specific "thiamine (vitamin B1) deficiency" fb group too.

https://www.facebook.com/groups/thiamine/?ref=share

 

[Xisca]

We're all different of course. I'm now up to 400 - 500 mg. a day and doing okay, and I still need to take a phosphorus supplement a couple of times a week. So I do.

Could you have been deficient before? As you reacted immediately. I am low in P in my HTMA and taking much higher dose of B1 than you do.
I am interested to know in what form comes the best P supp if I need to take some?
From food it comes from meat.
Not sure if well known that aside the glucose use, B1 also affects processing proteins, namely the BCAA.

 

[Xisca]

So, against my better judgment, I decided to try 300 mg a day of Thiamax. Within a week, I got neuropathy down the front of my legs, complete with painful nerve zaps.
I took no thiamine for a few days, then gradually built my way back up to my 750 mg dose of benfotiamine, which I think actually does get through the blood brain barrier, and eventually most of the neuropathy went away, and the nerve zaps stopped pretty quickly.

I've heard since, but I'm not totally sure, but it could be that this happened because of the oxidative stress I have and problems with keeping enough glutathione around. But none of this was any of the literature from the people who are pushing the high dose thiamine and the Thiamax.

To be fair to EO Nutrition, he does say to be sure to have good GLUTATHIONE status and enough methylation to take TTFD.

And yes, all thiamine can cross the BBB in some cases, if you have the right transporter. I have issues with the other transporter, so I need a lot of thiamine too, but I have no brain issues.
A very high dose can also create a passive transport to the brain but it likely needs more than to pass the gut.

For this reason, when the brain fog is last to lift for example, TTFD is suggested. Some people don't have the expected results with thiamine without using TTFD.

Also, thiamax works at much lower dose, so it is easy to take too much.

 

[Xisca]

As I understood b1 wasn't stored, and found info that manganese stores b1. So after taking manganese I didn't need that much b1 anymore. It seems K2 and D use manganese as many other minerals to build bones.

Interesting, I had not come across this!
I think copper is also involved, and Mn is often taken with Cu indeed.
B1 can use copper which is not good to have low, and needs to be taken also when taking zinc, it's antagonist in absorption.

Anyway yes thiamine is stored, about 40mg though, and is depleted in 3 weeks (just sayin, for those who fast...)
I have no idea how MN is involved...

 

[Xisca]

@Mary As you increase thiamine it might be helpful to watch your molybdenum level as well. B1 and molybdenum are used together in the transsulfuration pathway.

Then check copper, lowered by Mo.
Mo is needed when having sulfur issues, like food intolerance.
It is more needed with TTFD, not sure with benfothiamine.

 

[Learner1]

Also, thiamax works at much lower dose, so it is easy to take too much

I asked and asked and asked the Thiamax people what the dose conversion was and no one ever gave me a straight answer, including the smug, self-promoting EO himself.

So, being that I'd been on close to 1g of benfotiamine, I tried the 300mg of Thiamax which seemed conservative to me. I think it's a dangerous product and the people promoting it don't have all the facts, and just want to make money, somewhat like the nicotinamide riboside folks are slamming competitive products, like NAD+ and NMN.

To be fair to EO Nutrition, he does say to be sure to have good GLUTATHIONE status and enough methylation to take TTFD.

Unfortunately, numerous studies have shown that ME/CFS patients are short of glutathione and have significant oxidative and nitrosative stress making us short of glutathione. Studies have also shown we have methylation issues and there are numerous threads all over this site with people having issues with it, as well as mycotoxin, heavy metal and chemical toxicity and genetic issues, all of which puts a strain on glutathione and methylation nutrients.

So, pushing TTFD without a warning for these patients who DO have methylation and glutathione issues is a little irresponsible.

I was knowledgeable enough to figure out what was causing my neuropathy, but if it were to go on long enough, it could lead to permanent damage - small fiber neuropathy, etc.

For this reason, when the brain fog is last to lift for example, TTFD is suggested. Some people don't have the expected results with thiamine without using TTFD.

Benfotiamine has been fantastic at clearing the remaining brain fog. I no longer have brain fog that's not a side effect of a drug (like Benadryl, for instance).

Then check copper, lowered by Mo.
Mo is needed when having sulfur issues, like food intolerance.
It is more needed with TTFD, not sure with benfothiamine.

My copper has been high, even after being on 1-2mg molybdenum for 3-4 years.

 

[Mary]

Could you have been deficient before? As you reacted immediately. I am low in P in my HTMA and taking much higher dose of B1 than you do.
I am interested to know in what form comes the best P supp if I need to take some?
From food it comes from meat.

@Xisca - I'm sure I was deficient before, because I did react very quickly to it, within a day, and it helped my energy so much. And then the severe fatigue hit so quickly a day or 2 later, consistent with refeeding syndrome which is supposed to affect people who are malnourished. This issue just came up in a different thread. Chris Armstrong posited, and I think it's very likely, that people with ME/CFS are in a chronic state of starvation. There are several supplements I either have to take daily or several times a week, notably B1, B6, folate, methylcobalamin, BCAAs, to name a few - and if I stop them, I backslide quickly.

Dairy is also high in phosphorous. That's how I pinned down hypophosphatemia as the culprit in the severe fatigue which hit after the thiamine-induced energy boost. I drank 3 or so glasses of kefir and was very happy when my energy began to return within a few hours. I've found it difficult to find a good phosphorous supplement. Swanson Vitamins used to sell monosodium phosphate which worked very well, but they discontinued it a few years ago. My doctor who doesn't seem to understand the position I'm in gave me a prescription for a phosphate supplement, but at a low dose - K-Phos Neutral Prices and K-Phos Neutral Coupons - GoodRx But my need goes up and down and she only gave me x amount of pills which was not enough. Plus they didn't seem to be as effective as Swanson's product. Then I found a sodium, potassium phosphorous product on ebay (I'm not a fan of buying supplements on ebay but I was a bit desperate!) but it's not available there now, and just now found it here: Sodium, Potassium, Phosphorus Powder Concentrate (Sugar Free) 100 Pack – Hargraves Online Healthcare (hargravesotc.com) - and they're low in stock. I just ordered some more. This product does work well for me, but it seems it may not be available much longer - or else it's a temporary shortage.

So the prescription K-Phos might be a good way to go, if you can get enough of it.

This might be a good product which I may try in the future: Amazon.com: Biotics Research Super Phosphozyme™ –Phosphorous and RNA, Electrolytes, Healthy Bones and Teeth, Protein Production, Energy Support. 90 Capsules : Health & Household There are a few other products on Amazon that might be good - it's just not an easy supplement to find!

Not sure if well known that aside the glucose use, B1 also affects processing proteins, namely the BCAA.

I have to take BCAAs almost daily - Nutreval testing showed low leucine several years ago and my last Nutreval test showed low isoleucine. In any event, 4000 - 5000 mg of BCAAs a day cut my PEM recovery time by more than half, from 2-3 days to 1, but I have to keep taking it. I've been taking it now for 6 or 7 years and I won't be without it. Do you think it's possible that more B1 might help lower my need for supplemental BCAAs?

 

[Learner1]

have to take BCAAs almost daily - Nutreval testing showed low leucine several years ago and my last Nutreval test showed low isoleucine. In any event, 4000 - 5000 mg of BCAAs a day cut my PEM recovery time by more than half, from 2-3 days to 1, but I have to keep taking it. I've been taking it now for 6 or 7 years and I won't be without it. Do you think it's possible that more B1 might help lower my need for supplemental BCAAs?

I take BCAAs to prevent or reverse PEM. Not every day, but when I overdo it. I've looked back at my last 5 years of NutrEvals and my leucine and isoleucine levels have not gone up and down with my B1 levels.

Good tips on the phosphorous!

 

[Xisca]

I asked and asked and asked the Thiamax people...
My copper has been high, even after being on 1-2mg molybdenum for 3-4 years.

Copper high in blood or in hair test?

I am sorry it was like this for you, maybe he got more careful with time? I don't know when it happened to you...

I can assure you some people had no results on other forms of thiamine, but I would not use thiamax unless failing with another form!

I find logical that Elliott promotes his business for a living, and I looked into thiamine thanks to his insistance!

I think he made thiamax because he believed in it, and not the other way round, or else he would have made another one...
No fillers and some good Magnesium in it. So I think Thiamax is better than other brands using TTFD.

About the equivalents, I have read something once and it was not clear and any way as far as I see in the thiamine deficiency fb group, we all test our response to what we take, and there's little concordance in our reactions!
Yes some people even cannot take benfothiamine!

I am on thiamine hcl only to try (lol I have 1 kilo...) but could take the same amount of benfothiamine or TTFD. 200mg.
I can get hyperactive on TTFD though and get more sulfur smelling farts!
My copper is normal high in blood and a bit low in hair, so I am not fond of increasing Mb...

 

[Xisca]

@Xisca - I'm sure I was deficient before, because I did react very quickly to it, within a day, and it helped my energy so much. And then the severe fatigue hit so quickly a day or 2 later, consistent with refeeding syndrome which is supposed to affect people who are malnourished. This issue just came up in a different thread. Chris Armstrong posited, and I think

it's very likely, that people with ME/CFS are in a chronic state of starvation. There are several supplements I either have to take daily or several times a week, notably B1, B6, folate, methylcobalamin, BCAAs, to name a few - and if I stop them, I backslide quickly.

Do you think it's possible that more B1 might help lower my need for supplemental BCAAs?

First what is PEM please?

I don't know if more, or more time, or if something else is missing, that's all possible. After 6 months I am still trying variations. My sign of too much thiamine is being too awake and having to work physically and accelerate my breath to use oxygen and energy.
Too little and I can hardly walk from lactic acid in my thighs.

I got eyes issues and was suggested to take methylcobalamin. I don't have folate so I eat a lot of liver.

I see you don't supplement B2 and I think it is very needed. I take about 20 mg several times a day to not pee it all...

I also had to refeed, as I came from the carnivore diet. I couldn't come out of it until I took enough thiamine!

Actually I thought I was taking thiamine... but not enough just did nothing, even if it was 100mg of thiamax. I also had benfothiamine.

I was also afraid to take more because I was dumping oxalate those last 3 years, and B1 can increase the dumping.

 

[Learner1]

First what is PEM please?

Post exertionsl malaise, a hallmark symptom of ME/CFS.

Copper high in blood or in hair test?

blood and urine. None of the several doctors I've seen ever rely on hair tests as accurate

I am sorry it was like this for you, maybe he got more careful with time? I don't know when it happened to you...

Last year. And, I interacted directly with EO and Chandler Mates, neither of whom would give answers to my questions. All they answered with was their same propaganda.

Meanwhile, if I hadn't figured it out, I could have had permanent nerve damage in both legs.

I can assure you some people had no results on other forms of thiamine, but I would not use thiamax unless failing with another form!

From the folks I've tin into in that world, most of them don't test, don't know what their pathways are doing and are following the next fad. I didn't see a lot of analysis or logic involved. More like a cult.

I find logical that Elliott promotes his business for a living, and I looked into thiamine thanks to his insistance!

I think he made thiamax because he believed in it, and not the other way round, or else he would have made another one...
No fillers and some good Magnesium in it. So I think Thiamax is better than other brands using TTFD.

Thiamax is a dangerous product. Most people here don't have adequate glutathione and EO himself admits it's dangerous in that situation. And, no, he never told me that, just let me be damaged by his product.

About the equivalents, I have read something once and it was not clear and any way as far as I see in the thiamine deficiency fb group, we all test our response to what we take, and there's little concordance in our reactions!
Yes some people even cannot take benfothiamine!

I am on thiamine hcl only to try (lol I have 1 kilo...) but could take the same amount of benfothiamine or TTFD. 200mg.
I can get hyperactive on TTFD though and get more sulfur smelling farts!

That sounds like a problem that should be addressed. My experience is it's either a functional deficiency of P5P or molybdenum.

My copper is normal high in blood and a bit low in hair, so I am not fond of increasing Mb...

Hair is not a good way to test. It is not accurate.

I got eyes issues and was suggested to take methylcobalamin. I don't have folate so I eat a lot of liver.

on your carnivore diet, it's unlikely you'd need more MB12. But it is likely you'd be short of folate, and unfortunately, though liver is a "good" source, it's not enough for many of us.

I also had to refeed, as I came from the carnivore diet

It is quite likely you are deficient in many things that are not found in a carnivore diet. Phytonutrients, certain minerals, folate, vitamins A, C, and E, etc. which could be leading to done of your experiences. I have found doing a Genova Diagnostics NutrEval or Metabolomix+ once a year to be really helpful so I don't have to run the risk of guessing wrong.

 

[hapl808]

I have found doing a Genova Diagnostics NutrEval or Metabolomix+ once a year to be really helpful so I don't have to run the risk of guessing wrong.

Did you find the Metabolomix+ test particularly useful? I'd be interested in urine tests that are actionable as blood tests now cause me relatively serious crashes if they draw more than maybe half a vial.

Brain fog is a real issue for me. I've taken regular dose benfotiamine in the past, but been meaning to try higher dosages to see if it's helpful.

 

[Mary]

My copper has been high, even after being on 1-2mg molybdenum for 3-4 years.

I'm sure you know that copper works in tandem with zinc - if one tends to be high, the other very often tends to be low, so maybe increasing your zinc a little might help?

I see you don't supplement B2 and I think it is very needed. I take about 20 mg several times a day to not pee it all...

I do take B2 - I didn't list everything I take, just the ones I noticed an almost immediate benefit from. I take 35+ different things a day!

I was also afraid to take more because I was dumping oxalate those last 3 years, and B1 can increase the dumping.

How do you know you are dumping oxalates - is there a test for this, or do you go by symptoms? I know many here do have a problem with oxalates but I don't how they know this - any info would be appreciated!

@Xisca - one last thing - I just discovered this morning that soy lecithin granules have 225 mg of phosphorous per tablespoon, which is around 25% of the RDA of phosphorous. I use the granules to make liposomal vitamin C, and it is very effective for me, at a fraction of the cost of commercial liposomal vitamin C.

ETA: 225 mg. of phosphorous is the same dose contained in one of these packets - I generally have to take one to three of the little packets a day: Sodium, Potassium, Phosphorus Powder Concentrate (Sugar Free) 100 Pack – Hargraves Online Healthcare (hargravesotc.com)

I have been taking lecithin softgels for several years - it helps my memory - but might increase my dose to see if it helps with my chronic phosphorous deficiency! I take two 1.2 gram softgels a day.

 

[Learner1]

I'm sure you know that copper works in tandem with zinc - if one tends to be high, the other very often tends to be low, so maybe increasing your zinc a little might help?

I take 60mg zinc picolinate daily. My zinc is high normal. I'm very aware that a low zinc/copper ratio can lead to anxiety but have no issues with it. Thanks for this good point.

 

[Learner1]

Did you find the Metabolomix+ test particularly useful? I'd be interested in urine tests that are actionable as blood tests now cause me relatively serious crashes if they draw more than maybe half a vial.

Brain fog is a real issue for me. I've taken regular dose benfotiamine in the past, but been meaning to try higher dosages to see if it's helpful.

Yes, it has been incredibly useful, especially with the add ons for lipids, minerals, and heavy metals. I can manage entire pathways. The format is urine plus a card which you can prick your finger and drop blood onto 4 circles on the card.

 

[kewia]

I was knowledgeable enough to figure out what was causing my neuropathy, but if it were to go on long enough, it could lead to permanent damage - small fiber neuropathy, etc.

What was your cause?

Benfotiamine has been fantastic at clearing the remaining brain fog. I no longer have brain fog that's not a side effect of a drug (like Benadryl, for instance).

Which of the other treatments clear your brain fog?

 

[kula]

Hi everyone,

I have been taking thiamine for about a month now, going from Thiamine HCl 200mg bid to now 200mg tid. I too have experienced an improvement in a number of things, but most significantly in my energy level. I will continue at this dose for now, along with my B-complex and multivitamin and see how it goes.

Thank you all for the valuable information and tips that helped me along the way. <3

 

[kula]

I've come back to give an update. My improvement eventually plateaued and I suspected that I was missing other B vitamins. I couldn't figure out which one(s), so I started a B-100 complex that made everything worse and caused major set back. I have since recovered from that ordeal and only have the scars left from the painful cystic acne/lesions around my chin and mouth. I've also switched to a better quality B complex.

I did some further reading and decided to try adding 2000mcg of biotin at bedtime. To my surprise, I experienced improvement the very next morning. Some things I noticed were: improved energy and alertness, a less bloated feeling in my gut, less muscle fatigue, and extra strength in my back and leg muscles that made it more effortless to stand up straight and walk. I can now climb up a flight of stairs without feeling totally breathless or hearing my joints clicking!

I am currently taking:
thiamine HCl 200mg BID
benfotiamine 80mg qdinner
riboflavin 25mg BID
pantothenic acid 250mg qAM
biotin 2000mcg qHS
Thorne B Complex 1 cap 3x/week in AM
Thorne multivitamin 1 cap 3x/week in AM
calcium qHS
potassium and magnesium 3x/week at HS
niacin (with inositol) 500mg qdinner
betaine qdinner
digestive enzymes, bile salts as needed

I have taken a break from the B12 and methylfolates for now and I seem to feel okay. I don't know if they were the ones causing issues in the B-100. I'm going to try to work on one thing at a time so I don't get overwhelmed. All in all, I'm very happy with the progress so far!

 

[Husband of]

@Learner1 can I ask how much molybdenum you take?

And @Mary can have ask how much phosphorous you take?

Thanks

 

[Mary]

And @Mary can have ask how much phosphorous you take?

@Husband of - this is what I usually take:

I generally have to take one to three of the little packets a day: Sodium, Potassium, Phosphorus Powder Concentrate (Sugar Free) 100 Pack – Hargraves Online Healthcare (hargravesotc.com)

Each packet contains 250 mg. of phosphorous, which is about 20% of the RDA for phosphorous. If you're trying to determine if your wife needs phosphorous, you might try what I first did, drinking several glasses of kefir to see if it relieves symptoms, or find some other food high in phosphorous and see if it helps.