Significant Improvement Story -- Focus on Thiamine Deficiency

[Asklipia]

I mentioned this because when I started to get better I noticed that my right nostril seemed to open more and more, to the point that now both nostrils are exactly the same, which was not true in the years I was sick, and even the yers leading to the time I started feeling sick.
1500 mg of Thiamine HCL, did you ramp up to this to find it the dose you needed ?

 

[Rand56]

I mentioned this because when I started to get better I noticed that my right nostril seemed to open more and more, to the point that now both nostrils are exactly the same, which was not true in the years I was sick, and even the yers leading to the time I started feeling sick.
1500 mg of Thiamine HCL, did you ramp up to this to find it the dose you needed ?

No I started right off at 1500 mg's. When I tried high dose thiamine awhile back I ramped up quickly to 1500 mg's. Figured I'd just give 1500 a go to start, and no negatives by doing this.

Very interesting that you had the same situation as me with your right nostril. IIRC, wasn't there info on a thread some time ago about sympathetic/parasympathetic balance in regards to left and right nostrils?

 

[Rand56]

I have been trying B1 on and off and during my last trial I think I figured out how it makes me crash:

• B1 raises cortisol
• High cortisol wastes T3
• Thyroid is required to produce more hormones
• Assuming that my thyroid can produce some T4, I can't convert T4 into T3 and crash

hi Godwanaland

Are you sure that B1 raises cortisol? I tried doing a quick pubmed search to find a relevant study <that even I could understand LOL> and the ones I found didn't have a shortened abstract version. Just doing a quick google search it seems like there is more said about it lowering cortisol. If you are familiar with reading some threads on the Peat forum, you'll know that these people are not into doing much to raise the stress response, and it seems that higher dose thiamine is ok in their book.

 

[Gondwanaland]

Are you sure that B1 raises cortisol?

Hi Rand
I just can't remember where I found that info. I will post it here when I find it again. Meanwhile, I stopped taking B1 when I got the symptoms reported here

http://www.acu-cell.com/bx2.html
High levels / Overdose / Toxicity / Negative Side Effects - Symptoms and/or Risk Factors:
Vitamin B1:Heart palpitation, insomnia, agitation, high bloodpressure, skin eruptions, hypersensitivity.

I am not sure why, it also makes me feel hypothyroid, or it is just leading to too much iron consumption by supporting RBC synthesis

 

[Rand56]

Hi Rand
I just can't remember where I found that info. I will post it here when I find it again. Meanwhile, I stopped taking B1 when I got the symptoms reported here


I am not sure why, it also makes me feel hypothyroid, or it is just leading to too much iron consumption by supporting RBC synthesis

Ok. It's no wonder you stopped it by getting those negative reactions. Did it take awhile for you to get some or all of those symptoms, or were they noticeable early on when you were taking it? "So far", I'm not experiencing any of those negative effects.

 

[Gondwanaland]

Did it take awhile for you to get some or all of those symptoms, or were they noticeable early on when you were taking it?

Almost everything I take works like a honeymoon for a week or two and then stops working, probably because I still have to figure out the corrects synergists (like biotin & B1 as you reported)

http://www.acu-cell.com/bx2.html
High levels / Overdose / Toxicity / Negative Side Effects - Symptoms and/or Risk Factors:
Vitamin B1:Heart palpitation, insomnia, agitation, high bloodpressure, skin eruptions, hypersensitivity.

Note that the bolded symptoms above are from increased need for potassium/magnesium, and I haven't been able to supplement neither of them (why?).

I just remembered that I read about the B1 connection with high cortisol on the Ray Peat FB group, and probably I didn't read the whole conversation and misunderstood the whole thing. But since B1 increases the need for magnesium and I haven't been able to take it, it is only logical that an already high cortisol will get even higher (I think I have been eating lower carb than I intend to). Plus, there is the iron thing.

 

[gefinauser]

@Gondwanaland , may I suggest following mechanism?

B1 increases thyroid hormones (possibly by turnover from T4 to active form T3... the specifics aren't important).
However, this elevates metabolism and your adrenal gland starts kicking the dirt after a while... this new level is too stressful for adrenals, thus perhaps increased cortisol episodes like you describe.
Then you crash. This pattern certainly happens to me with any metabolism boosting supps and the stories here match it quite well. So:
B1 -> More T3 production -> More demand on adrenals and thus cortisol -> Too demanding for body, crash occurs -> Back to baseline or lower (hypothyroidism, adrenal fatigue problems)

To prove this idea:
If you want B1 to work, try it this time with supps that support adrenals. See for yourself if you start to tolerate the supplements (eg. the guy doing mag taurate with B1).
Stuff like manganese chelated, unrefined seasalt, vitamin c, potassium, magnesium, B5. Perhaps B3. They may make you feel worse initially, because your adrenals always pick up the slack that moment your body receives those nutrients, causing an alarming but temporary symptoms. This must be especially the case if your adrenals are not in a good shape (must be true for most CFS folks). I've always experience that heart palpilations, nausea, etc when I take unrefined seassalf or normal Vit C... yet many many protocols warrant that or potassium for general detox or adrenal/metabolism/electrolyte support. This stuff is good for health.

Sometimes risk aversion or "every negative symptom now or with increased dosages means bad news" isn't always the truth. Hence people recommending the "ride it out" suggestions. We know micro-titrating is good but here we have an example of mega-doses of B1 - in a very specific sweet-spot for the individual - being the game changer for folks. But that's what it all is: taking risks and possibility of unknown calamity. Anyways, that's for my thoughts or sermon... always judge risks and possibilities.

 

[jimmy86]

I started 600mg thiamine and it increased my mental clarity. However, I have the feeling that it decreased my BP and heart. Is this normal for thiamine taking orally?

 

[Lolinda]

.75% (1)--very helpful

I am just curious: which one was the very helpful? - Always happy to learn what worked for others! thanks!!

 

[Lolinda]

Some negative effects worth noting from too much B1 are restless sleep (likely due too much acetylcholine being produced).

I found this remark interesting. I took B1 and got immediately colorful movielike dreams that I remembered. It was very nice and pleasant in smaller doses, but hindered sleep in bigger doses. I wondered which neurotransmitter brought about this movielike dreams / restless sleep effect... Do you have any science that acetylcholine is the culprit? I am just curious because the effect was so so intense... Was unable to find anything on google scholar...

Also my gastric motility improved, which is typically a neurotransmitter thing.

(apart from these mostly nice effects I also got a sudden and bad polyneuropathy from a single 75mg dose of B1, which I am battling since. It persisted inspite of having stopped B1 completely.... )

 

[Lolinda]

Dehydration is always a problem for me, even when I drink a liter every few hours (only 4 at most a day, though).

Have you taken a test for low ADH? (diabetes insipidus) Many people here on PR have this.

 

[bigmillz]

A ha!

Thank you. I have a problem with Sulphur in foods so maybe that is a more general thing for me and caused the severe effect with a higher dose.

Nothing is ever straightforward with trying to treat this disease. Maybe the FM patients in that study don't have these problems of being sensitive to drugs and supplements?

I just found this thread, after a recent test of breaking down my B complexes into individual components because of a bad reaction to any brand/dose.

I tried 50mg thiamine yesterday, and that was definitely the culprit, making me feel very weary, fatigued, easily annoyed, frustrated, and clumsy. It's mostly cleared up today.

I just ordered some biotin to see if it produces the same result, being sulfuric. That would make a lot more sense, as the only thing I've found about having a reaction to just thiamine is a 1950's article citing only 200 human reactions in history.

Story said, has anyone found any sort of solution for their issues with the sulfuric vitamins? Is lower dose/total elimination the only solution? I've already been on a hot dose of B12 and mFolate for a while to get the methylation cycle spinning, and my handling of high sulfate/thiol foods seems to be vastly improved.

 

[Little Bluestem]

There are several forms of thiamine such as benfotiamine, allithiamime, and sulbutiamine. Would any of them be any different? (I don’t know since I don’t have a problem with thiamine.)

 

[tango]

Interesting thread.

I noticed an improvement from taking thiamine 100 grams 4x a day and benfotiamine 150 grams 2x a day. I am in the process of increasing thiamine to see if mood and energy Improve. Sleep has definitely improved but I'm also increasing other things, namely:
C
D
Magnesium
zinc
Probiotics
Amino acids
Manganese

And I switched from a Zinc with other minerals (Thorne pic mins) as I was suspicious that the chromium was keeping me awake

There is a study somewhere showing benefits of pain relief and improved energy from benfotiamine 300 mg a day

Anyway I am well onboard with increasing b1. I definitely need it. I get horizontal eye twitches that resolve with b1. I also get eye twitches on the rare occasions I have wine or sugar and both are known to deplete b1. If you think b1 is an issue for you then I'd recommend looking at your intake of sugar, alcohol and sulfites which all deplete b1

 

[tango]

I ran some LiveWello reports on the enzyme that transports thiamine and got lots of mutations and red so I'm encouraged I'm on the right track
TRANSKETOLASE; TKT thiamine-dependent enzyme

 

[Gondwanaland]

I ran some LiveWello reports on the enzyme that transports thiamine and got lots of mutations and red so I'm encouraged I'm on the right track
TRANSKETOLASE; TKT thiamine-dependent enzyme

What is the RS number?

 

[tango]

What is the RS number?

I don't know of a single number. There were a number of templates on Livewello for thiamine enzyme transportation and I have multiple homozygous mutations BUT I don't know if there is a particular critical enzyme and related SNP(s). For me it simply confirms that this is not my imagination!!! Thiamine works and the SNPs tell me that there is a logical reason for it - although of course having a mutation doesn't mean it's activated but my eye twitch is a clear indication as well so I have lots of confirmation.

Why don't you check them out on LiveWello using the keyword thiamine? There were 4 templates and lots of SNPs. Hmmm maybe 5 templates. I'm on my mobile now and it's horrendously difficult to copy and paste from LiveWello using their mobile site. I'll check back later when I am on the PC.

 

[Gondwanaland]

Why don't you check them out on LiveWello using the keyword thiamine?

I didn't know it was free of charge, thanks for the heads up!

 

[tango]

I didn't know it was free of charge, thanks for the heads up!

You get unlimited free reports once you've uploaded your profile

 

[Little Bluestem]

I recently noticed that my 250 mg benfotiamine (Life Extensions) contains only 10 mg of thiamine.

My thiamine was bottomed out on my NutrEval a couple of years ago. I have increased my thiamine, but have not been able to afford a retest.