• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Significant Improvement Story -- Focus on Thiamine Deficiency

Lou

Senior Member
Messages
582
Location
southeast US
Some of us have wondered why initial positive results boomeranged with higher doses, that perhaps it could be depletion of some nutrient, mineral or other vitamin.

Usual suspects: other b vitamins (too much of one depletes others).

Unusual suspect: manganese (I read in an old Mindell book about supplements that manganese worked with thiamine to produce an enzyme that aids thyroxin production). Note: I'm hypothyroid and crashed with excess thiamine and wonder if others that crashed suffer from low thyroid as well?

Shot in the dark suspects: low zinc and/or copper. Only mention these as I have trouble balancing the two, seemed to get worse with extra thiamine.

Anyone have other suspects? Or comments about those mentioned above?
 

Mr. Cat

Senior Member
Messages
156
Location
Nothern California
I wanted to share the effects of my B1 usage. Since reading this thread, I jumped on the bandwagon 6 days ago, and quickly worked up to 1500mg/day, with no side effects. I'm confident I could handle much more, but am not sure it would yield additional benefits. Positive effects seem to be mild - a slight increase in energy and mood, and at times I think I feel calmer - and don't seem to last more than an hour or so after I take a pill. No effect on PEM that I can notice, as I've had some minor crashes in the last few days that are probably unrelated. I will probably go off it soon, to see what effect that has. Judging from my response, I doubt that I'm B1 deficient.
 

LisaGoddard

Senior Member
Messages
284
Hi, Just to add my experiene as I started on 500mg thiamine three days ago. So far I think I have some reduction of pain in my lymph nodes which is very welcome. The B1 makes me sleepy and relaxed - feeling like a jelly fish - so am going to take it at nights.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Anybody had side-effects? I've just been prostrate for four hours with a cracking headache, faint nausea and chills (in 28 degree heat!). I'm about two weeks in at 1500mg.

Sorry I can't read back over the thread - can hardly read, in fact!
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Anybody had side-effects? I've just been prostrate for four hours with a cracking headache, faint nausea and chills (in 28 degree heat!). I'm about two weeks in at 1500mg.

Sorry I can't read back over the thread - can hardly read, in fact!

WOW! That is such a high dose. :eek: When I took the B1, I couldn't handle more than 25mg/day.

If you are having symptoms this severe, my guess is that 1500 mg is TOO MUCH, and your body is telling you loud and clear that it doesn't like it.

just my 2 cents
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
WOW! That is such a high dose. :eek: When I took the B1, I couldn't handle more than 25mg/day.

If you are having symptoms this severe, my guess is that 1500 mg is TOO MUCH, and your body is telling you loud and clear that it doesn't like it.

just my 2 cents


Hi Dreambirdie - I've had absolutely no effects going up from 300mg/day by 300mg every three days as per the study until maybe a slight improvement at 1200mg - I wondered if it could be just coincidence (I do sometimes get bad sinus headaches but not nausea & chills) or some kind of cumulative effect. I'm backing down to 1200mg. I'm wondering if this was a migraine (I only get one about every seven or eight years!).
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Sasha The effects of these kind of things can be cumulative. I have noticed that with B12. I take only 250 mcg of HB12 a few times per week. Whenever I get to thinking I can handle more and raise my dose up to 500 mcg/day, I end up with intense detox symptoms... sometimes sooner and sometimes later. Then I have to stop for as long as it takes to clear the symptoms and go back to a smaller dose.

I am not saying this is what is happening with you, but I have seen that many of us seem to do better with micro-dosing than we do with the large mega doses. It's much easier to manage.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Sasha The effects of these kind of things can be cumulative. I have noticed that with B12. I take only 250 mcg of HB12 a few times per week. Whenever I get to thinking I can handle more and raise my dose up to 500 mcg/day, I end up with intense detox symptoms... sometimes sooner and sometimes later. Then I have to stop for as long as it takes to clear the symptoms and go back to a smaller dose.

I am not saying this is what is happening with you, but I have seen that many of us seem to do better with micro-dosing than we do with the large mega doses. It's much easier to manage.


Thanks - maybe I should go down a bit further. I'll see how I do tomorrow - I normally can get over one of these headaches with a good night's sleep.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Thanks - maybe I should go down a bit further. I'll see how I do tomorrow - I normally can get over one of these headaches with a good night's sleep.

I think it's best to pay close attention to your body and make your decisions based on that. Good luck with sleep. I hope the headache disappears by morning.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I think it's best to pay close attention to your body and make your decisions based on that. Good luck with sleep. I hope the headache disappears by morning.


Thanks, Dreambirdie. I feel a lot better this morning - particularly in not having a headache - but I still don't feel right. I feel a bit sub-threshold-fluey-achey and yesterday my lymph nodes were swollen in my left armpit. I'm wondering if this is a new infection or maybe the B1 is helping my immune system to kick in to fight off what I've already got. That doesn't seem to have been other people's experience with it, though.

It's always so hard to know if a thing is doing good or bad!
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
She also recommends supplementing with one vitamin B1 tablet a day from April through October, and then adding 100 mg of B1 to a B100 Complex daily during the mosquito season to make you less attractive to mosquitoes.

From the Mercola newsletter this morning on how to repel mosquitos...I may have to look for my B1 again for multiple reasons! I wonder if higher doses repel mosquitoes even better? I HATE mosquitoes.

Ema
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Thanks, Dreambirdie. I feel a lot better this morning - particularly in not having a headache - but I still don't feel right. I feel a bit sub-threshold-fluey-achey and yesterday my lymph nodes were swollen in my left armpit. I'm wondering if this is a new infection or maybe the B1 is helping my immune system to kick in to fight off what I've already got. That doesn't seem to have been other people's experience with it, though.

It's always so hard to know if a thing is doing good or bad!

In my case, I usually know when something is bad, but then I will try to talk myself into thinking it's good because "some study" said it worked well for a certain number of people, and I want to be like them and have it work for me. I have made that mistake countless times now with a wide variety of remedies, hydrocortisone and iodine being the most disastrous.

If I was feeling fluey and achey, and my lymph nodes were swollen from taking 1500 mg/day of B1 for 2 weeks, I would definitely consider that a case of "feeling worse." Since I don't want to mess with anything that makes me feel worse, if it was me, I would probably stop taking it. Or... MAYBE.... if I was not done experimenting with a given supplement, and I really wanted to give it another shot, I would consider waiting until my body cleared the symptoms, and then try taking half the dose I was on before. If that still made me worse, then I would stop it and not take it again. But that's me.

It takes so little to throw me into a tailspin, and tailspins often lead to crashes in my case. That's why I am really careful to not take things that make me feel worse. I can't afford being crashed and trashed anymore.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
If I was feeling fluey and achey, and my lymph nodes were swollen from taking 1500 mg/day of B1 for 2 weeks, I would definitely consider that a case of "feeling worse."


Just hard to know if it's a new bug or what... argh...

I'm feeling a bit better as the day is going on. Maybe it was a bug... :alien: maybe not... :thumbdown:
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Just hard to know if it's a new bug or what... argh...

I'm feeling a bit better as the day is going on. Maybe it was a bug... :alien: maybe not... :thumbdown:

Hey Sasha--Try not to head-trip yourself too much about this. Or you will end up looking like this guy :alien:
Trust yourself, do what feels right for you and see what happens.

Good luck!
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Hey Sasha--Try not to head-trip yourself too much about this. Or you will end up looking like this guy :alien:
Trust yourself, do what feels right for you and see what happens.

Good luck!


Thanks! I really like this guy, though! :alien: :alien: :alien:
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Some of us have wondered why initial positive results boomeranged with higher doses, that perhaps it could be depletion of some nutrient, mineral or other vitamin.

I have had similar experiences with high doses of each of the B vitamins and folate as well, I do think there is something unusual going on, but I have no idea what it is...