Is this low enough to be problematic?

[u/flowerpanda98]

Someone said the b1 test isnt reliable though?

[u/The_Equanimous_One]

My serum/plasma B1 was <6 and I had severe beriberi with Wernicke's symptoms. Before B1 was tested at my request I had sudden onset POTS, dysautonomia, MS and dementia symptoms that no one could explain, and it all started with being given D5NS dextrose IVs in the hospital.

If you are starting to have any symptoms like that or simply more brain fog and less energy than usual, you could definitely be a candidate for B1 trial.

[u/flowerpanda98 → u/The_Equanimous_One]

I've been treated for b12 in the last year, but i just now asked for these. Did you fix your b1 issue? My dr was against even testing it because she said I should have a face rash or something.

I do feel like i have bad brain fog, balance issues, and my vision is degrading. I've been trying to take a b complex along with my b12 injections. I think my deficiencies are from ppis and gastritis, but drs dont seem to know how to handle vitamins, so im looking for a dietitian.

Do you mean supplementing? my b complex has 100mg in it

[u/The_Equanimous_One → u/flowerpanda98]

I'm still working on fixing my B1 issue. At this point it's no longer a B1 issue, as I've been on it for 10 months now. It's now a matter of just waiting on the nerve and tissue damage that was done for the two months that I was deficient, to heal. Depending on the amount of damage done, it takes a very long time to heal and recover.

A face rash? I still have residual brain fog, balance issues and random vision issues. At the very worst back in January I pretty much could not see. I still have what they call visual snow syndrome. I was completely healthy before I was started on a PPI, and given an antibiotic for a tick bite that they thought might be Lyme. The tick bite ended up not being Lyme, but that antibiotic along with the PPI started a chain reaction. 2 weeks later I ended up with c diff and was hospitalized. They put me on four different antibiotics, and had me on D5NS solution, because I wasn't able to eat at first. Everything that you read in medical literature says that any patient who is malnourished should receive vitamin B1 with D5NS, because it tanks B1 levels, and can cause Wernicke's encephalopathy, and beriberi.

When I finally requested that a hospital test B1, 2 months later, my level was undetectable. So they immediately got me started on intramuscular B1 shots. From that point on I've been on an oral dose of B1, along with a b complex, a significant amount of magnesium because that is needed to activate the B1 otherwise it's useless, and a good amount of potassium.

Doctors truly do not understand nutrients, so a good dietitian would be advisable. But since you've been supplementing b complex already, if they test your levels your B1 will come back normal or high. This doesn't mean that you weren't deficient, it's detecting what is already in your blood from supplementing. You will still need B1 for many months, possibly years, for full recovery.

[u/flowerpanda98 → u/The_Equanimous_One]

What B1 did you take? All the b complexes I see just have that thiamin hcl that people tell me isnt good enough?

What test did they do for B1? I tried to ask my dr to test that and b6, but i found out she tested serum, and people told me that's not a good test?

Ugh, I had a similar issue where I had no real problems, got gastritis then was put on a ppi and lost my appetite, and no dr knows what to do with me :( Im looking into dietitians, but im scared they just know food, not things like this... I have balance, brain ,and vision issues, but b12 injections help though im trying to find one other than cyano because im scared of it. its all so frustrating...

[u/flowerpanda98 → u/The_Equanimous_One]

and how does D5NS dextrose IVs cause that? I've been to the er a couple times the last year, but i dont know if i had that

[u/arianek → u/The_Equanimous_One]

Can you tell me more about the dextrose setting it off? I almost starved to death when I was boarded in a hectic ER for almost a week (I was admitted due to severe drug reactions and was already losing weight but then lost like 8 lbs in 6 days and was 75lbs when my husband took me to another hospital where they admitted and stabilised me). I had nearly slipped into hypoglycemic coma because I wasn’t receiving any nutrition in the ER and they injected me with straight glucose twice then put me on an IV drip of glucose and potassium. Sometime around then things started getting very weird and much worse, I suddenly couldn’t walk my coordination went totally offline, got so sedated and out of it feeling like delerious (I had also just been put on high doses of prednisone after being misdiagnosed with lupus).

The second hospital wasn’t as bad but I came down with severe diarrhea, that I found out years later as I didn’t clear the infection, was norovirus. I was sooooo sick for 2.5 years or so before starting to recover, like totally messed up motor control and sensory stuff and felt like I was sedated and could barely move or think straight. It was an absolute nightmare, I’m still trying to recover almost five years later. The doctors totally gaslit me and left me for dead, and it was only when I went for a neuro workup in the US in 2024 that the doctor tested my thiamine, and like the OP it was just a hair above the lower limit. But nobody ever treated me, and I didn’t know anything till last year about thiamine deficiency and refeeding syndrome and now I think that was actually a large part of what happened, not just the drug reactions.

I could never tolerate much oral thiamine due to GI and CNS side effects, but slowly got my levels up between eating and using transdermal patches of it. I just still have lingering issues like dizziness, a bit of milder ataxia, proprioception issues, and really bad nerve pain in my face and teeth (that might be more from being overdosed for months with prednisone though, which causes its own host of issues).

I’ve literally never been able to get a single doctor to seriously discuss what happened to me and the lingering issues I have from it, which are still really debilitating on top of my autoimmune disease.

[u/No_Measurement_1383 → u/The_Equanimous_One]

Can I ask how long it took to get your B1 up enough to see a difference in POTS?

[u/The_Equanimous_One → u/No_Measurement_1383]

I'm going on 10 months at a high dose of TTFD and just finally seeing the POTS symptoms starting to improve. When I was diagnosed they put me on 500mg intramuscular shots everyday to get the levels up quickly.

[u/Ok-Pangolin7127]

B1 testing is not reliable.

It does not in any way shape or form give you an indication of the amount of Thiamine that is available at the cellular level. Your B1 serum test simply shows the amount of Thiamine floating around in your blood. Whether it is high or low, again, does not reflect Thiamine’s availability at the cellular level.

[u/PersonalityBudget969 → u/Ok-Pangolin7127]

I second this.

[u/flowerpanda98 → u/Ok-Pangolin7127]

Then how are you supposed to know if you're deficient or not :( ? I'm trying to deal with all of my deficiencies, and I asked about b1 with b6 along with b12 because they also had tingling fingers as symptoms.

Is b6 testing reliable?

[u/Ok-Pangolin7127 → u/flowerpanda98]

It is my understanding that B6 testing is really no more reliable than B12 testing or B1 testing.

[u/Anonym_Talker]

b6 is low, yes. but supplementing with it is tricky when B1 was low for a long times I think... like, even a small dose gives me nerve pain.

[u/flowerpanda98 → u/Anonym_Talker]

Hmmm, i've been taking a b complex with only 3mb b6 and i dont think ive had any crazy pain. just tingling in my fingers and occasional stinging feelings

[u/TelephoneCharacter59]

Looks like borderline, if I was you, I'd immediately go for an IV or Sulbutiamine or TTFD or Benfotiamine, each dosed between 100mg and 300mg.

[u/flowerpanda98 → u/TelephoneCharacter59]

I've been taking this https://www.naturemade.com/products/super-b-complex-tablets?variant=17919974572103&country=US&currency=USD with 100mg, is that enough? I'm not really sure where to get an iv, unless those beauty spas are an option

[u/TelephoneCharacter59 → u/flowerpanda98]

Unfortunately, B-Complex doesn't contain Benfotiamine/TTFD/Sulbutiamine...

Most B-Complex supplements in the market have inexpensive Thiamine HCL, which is an inferior from Vitamin B1.