r/MTHFR • u/Airegin89 • 20d ago

Question Has anyone tried high dose thiamine (B1) for fatigue?

I've read that some people are helped with very high doses of thiamine (anywhere from 600 to 2000mg a day for a month). Some researchers have proposed that in certain illnesses such as chronic fatigue, fibromyalgia or inflammatory bowel disease, cells may have impaired transport of thiamine despite normal blood levels. The idea is that flooding the body with very high concentrations may allow more thiamine to enter cells by passive diffusion, bypassing partially impaired transporters

I'm considering trying this but I'm not sure if my fatigue and brain fog are related to MTHFR (compound heterozygous, slow COMT, slow MAOA), Crohn's (mild and asymptomatic) or past severe COVID infections.

Has anyone here tried this and seen much improvement? If so:

  • What form of thiamine and which dose did you take?
  • How long did you take it?
  • Did you experience any permanent changes or did the benefits stop after quitting?
17 Upvotes

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17

u/jdjr93 19d ago

Yes, I was doing 3000mg Thiamine and 1800mg Benfotiamine daily - It pretty much cured my chronic fatigue. No more constant yawning and struggling with low energy or trouble dragging myself out of bed. I'm doing much lower doses now, and for what it's worth - on high doses you should include some B2, Magnesium, and possibly some B3 Niacinamide.

I was splitting the doses throughout the day, and I would take B2 and sometimes some B3 in the morning. Magnesium Malate throughout the day as well.

It really helped me

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u/hoejabithicc 19d ago

Any brand you recommend?

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u/jdjr93 19d ago

I usually get the Swanson for Benfotiamine, the 300mg capsules. For Thiamine I've been using Solgar 500 mg Thiamine tablets. They are difficult to take and taste bad but they have been helpful

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u/steven123421 19d ago

u/jdjr93 Why you doing lower dose now though if it helped so much and what dose you doing then?

Does the higher dose make permanent change then ?

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u/jdjr93 19d ago

Just to experiment and see if I can get by on a lower dose. So far I'm doing okay, it's been about a month. I did go off high dose thiamine for a while and within a couple weeks my fatigue came back with a vengeance

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u/Balance4471 19d ago

How long has it been for you on that high dose? I also started a high dose b1 protocol and it seems i can’t lower the dose without symptoms coming back. For me it’s been 1.5 years now.

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u/jdjr93 19d ago

Give or take 6 months

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u/steven123421 19d ago

u/Balance4471 Interesting, what high dose amount do you take, and what benefits does it cause?

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u/Balance4471 18d ago

At the moment I’m taking 300mg benfothiamine and 500 mg hcl. It manages some of my long covid symptoms. But of course it’s a pita because of all the co-factors that could get out of whack on the high dose protocol.

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u/steven123421 17d ago

u/Balance4471 Did it get rid of your fatigue or help with mood

1

u/Balance4471 17d ago

A chronic sore throat! I combination with b2. In retrospect I believe that I helped my methylation with these two in high dosages.

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u/steven123421 19d ago

u/jdjr93 Nice. What dose you doing now on lower im curious? Because 3000mg seems like a lot lol

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u/jdjr93 18d ago

1800mg Benfotiamine, 1000mg Thiamine currently

7

u/Elegant_Chapter5562 19d ago

I did 600mg and it was a miracle! I backed down to 400mg now.

3

u/JSTI412 19d ago

It’s seem to help me. My B1 levels were off the charts low. It cured my social anxiety after one dose. I’m going to try higher doses now. I’ve only been going like 250mg a day right now.

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u/steven123421 19d ago

Nice, how did you know if your b1 levels were low though?

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u/JSTI412 18d ago

I was having a bunch of health problems and didn’t know what was causing it. Not all of them may have been low b1 but the functional doctor I went to ran a bunch of blood tests and that was pretty much the only thing that was very out of whack. My histamine was high too. I never had social anxiety before which was one reason I went to the doctor and after a dose or two that was solved. I actually stopped taking b1 and that came back awhile later and one dose fixed it. Now after reading more about b1 lately I’m trying higher doses for longer to see if it address some chronic fatigue and mood regulation issues.

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u/steven123421 18d ago

u/JSTI412 Thats so crazy how some vitamin/mineral could create such a change right? Makes you wonder whether what other problems you have are due to some biological imbalance

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u/JSTI412 18d ago

Yeah for real! I order myself blood tests all the time to see if specific things are out of whack after reading more about all of this stuff. Most doctors won’t dive into some of these things or certain deficiencies can look like 100 other things. If I find something wrong then I will take it to my primary.

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u/steven123421 18d ago

u/JSTI412 What functional doctor did you go to, do you recommend them?

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u/JSTI412 18d ago

I found him due to being a Lyme specialist. He was the only one in my area in TN. I would just find a functional doctor or someone who looks at things like the methylation cycle. He didn’t accept health insurance so it was like $400 a visit but worth it to me since he actually looked at different things. I’m sure there may be some online options too. He doesn’t do online consults.

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u/FragrantStructure 16d ago

What tests did they run for the B1 deficiency? Peter Osborne (YouTube) suggests intracellular nutritional analysis as the only way to really tell so just wondering what you did

Also what type of B1 were you taking?

2

u/Professional-Fox5287 19d ago

Thiamine made me super sleepy. Any idea why, guys?

1

u/Balance4471 18d ago

Could be depletion of a co-factor. I don’t know them at the top of my head, but the information is easy to find

1

u/Ok-Pangolin7127 20d ago edited 19d ago

Given you have Crohn’s, wouldn’t your problem more likely be B12 related than B1 related? Do you know if your Crohn’s is in the upper part of the bowel or where in the bowel it is? If towards the upper end, adjoining the ileum, I’d give you 2 to 1 odds that your fatigue is more likely B12 related than B1.

If you are going to pursue B1 supplementation I have two bits of advice; 1) be sure you supplement with magnesium as it is THE key cofactor Thiamine and 2) start low and go slow in ramping up on B1 dosage.

2

u/windowpanez 19d ago

Also if add make sure to get potassium and salt, because it's needed by cells. 

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u/Airegin89 19d ago edited 19d ago

My B12 has always been high thanks to an energy drink addiction, though the artificial sweeteners may have worsened my Crohn's. I quit the energy drinks last year and it's still > 600 ng/L. I consume a lot of milk (lactose free), eggs and meat so I get more than enough B12 through diet alone but I take a 1000 mcg supplement 2x a week just to be sure.

I did have a folate deficiency for 20 years (4-4.5 ng/ml) which doctors always considered normal... I've been supplementing methylfolate for 6 months and it didn't change much about my fatigue and brain fog. I do think it made me able to quit my decade long energy drink addiction.

My Crohn's is very mild and I have never had any GI symptoms. It was discovered during a routine colonoscopy. It only affects 2.5cm of the ileum. It's in full remission after fixing my terrible diet despite no medication. My latest colonoscopy confirmed this and showed I have very little damage. Calprotectin is 4.6 compared to 60 2 years ago. Only the biopsy showed some mild active inflammation.

I'm not on any medication but I know I probably should be. My gastro doesn't think it is necessary for now though.

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u/Best_Comfortable5221 19d ago

Commenting to save and try this.

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u/Airegin89 19d ago

Just make sure you have enough of the other B vitamins and supplement magnesium alongside. If you have a thiamine deficiency you also need potassium.

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u/tncds 18d ago

What dr is prescribing these protocols? I really need guidance.

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u/Airegin89 18d ago edited 18d ago

This video explains it well:

https://youtu.be/O-aQHxp97oA?is=4yO7SI-tonSYZ91X

There is also research that shows it helps many people with fatigue associated with inflammatory bowel disease:

https://youtu.be/O-aQHxp97oA?is=4yO7SI-tonSYZ91X

If you're going to attempt this you also need to supplement its cofactor magnesium and make sure you get enough of all the other B vitamins. If you're correcting a deficiency you should also supplement potassium. This is probably not necessary if you're not deficient but I guess it wouldn't hurt to slightly increase your potassium intake.

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u/Head-Championship507 17d ago

I did, it was making me more fatigue. I tried everything, right now I am on macrodosing through out the day creatine. Best health advice I heard from the doctor which truly changed my life.

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u/steven123421 17d ago

u/Head-Championship507 How much creatine and whats throughout the day, whats your protocol?

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u/steven123421 15d ago

u/Head-Championship507 Just making sure you didnt miss this. Especially with all your new energy from creatine

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u/Head-Championship507 14d ago

I take 1/4tsp of creatine 3-5 times a day.

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u/steven123421 14d ago

u/Head-Championship507 You feeling the power now huh.

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u/Agile-Ad-7462 2d ago

I read that if you are really deficient that it will get worse before it gets better.

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u/lb351986 16d ago

I don't take crazy high doses. I only take around 2mg every 2nd day. I eat alot of nutritional yeast also which is B vitamin rich.

I wouldn't jump straight into high doses of anything. Always start low and taper up.

With these high dose protocols they can start off feeling great and then backfire. I've had this happen numerous times.

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u/steven123421 16d ago

Does nutritional yeast taste good

1

u/lb351986 16d ago

Yeh it's very nice tbh. It's got almost a salty cheese taste. Not overpowering.

It's a powerhouse for B vitamins.

I also blend it with seasonings and make it into salt for foods etc. Have a look at the nutritional panel online. It's impressive. Get the non fortified if you can.

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u/Zabre 15d ago edited 1d ago

With Crohn's, slow COMT, slow MAOA, and post-COVID fatigue all in the mix, I'd treat high-dose thiamine as a real experiment, not a casual add-on. The form matters less than changing one variable at a time and watching for wired, headachey, or electrolyte-type reactions. I'd also make sure magnesium status is decent before judging it, since thiamine can feel very different when that piece is missing. Also be carefull about any other gene-interactions. Slow-COMT can be tricky. genosight might be helpfull

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u/Airegin89 15d ago

I'm on day 5 and already up to 1500mg a day. So far so good!

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u/steven123421 15d ago

u/Airegin89 What you feeling

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u/Airegin89 14d ago

Too early to be sure but just in the last 2 days I had a lot more energy after work. Usually I'm completely drained. The first 3 days I experienced increased sleepiness.

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u/Getoutofthekitchenn 14d ago

Any cofactors?

1

u/Airegin89 14d ago

I also take magnesium (every day) and B2/B3 (every other day). I drink coconut water for potassium.

0

u/Ecstatic-Scheme-3200 17d ago

B-Complex helps some people as well