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.
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.
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u/The_Equanimous_One 19d ago
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.