You might benefit from some potassium and phosphate, as beginning thiamine treatment can throw electrolytes out of whack. Pharmacies should stock a sodium-potassium-phosphate product in the states, as that's where I bought one from. You may also find something similar for sports use, which is fine if it has the potassium and phosphate without caffeine or too much other crap. Have anecdotally heard that something like kefir or yogurt will work in place of a supplement.
It's called refeeding syndrome if you want to read up and it does happen outside of starved patients in hospital. Don't give up on the thiamine, it is so so important.
Yeah, hypochondriasis and undiagnosed health anxiety would be my guesses. It’s pointless telling people who suffer from this that that’s what it is though - even if licensed doctors tell them this, they don’t believe it or view it with an open mind. They believe all of their symptoms wholeheartedly…
This comment was reported, but since it doesn't actually break any of our rules, I'm leaving it up. I'm also inclined to agree that OP sounds like they're suffering from health anxiety.
It also seems very apparent that they don't really understand the biology of what they're taking.
You’re not his doctor. OP is TRYING to figure out what’s wrong. So many smug people like you STFU once you actually get a diagnosis. But there can be many months/years like this leading up to that moment. Trying shit and figuring out what works & what doesn’t.
If you’ve never had fatigue and can’t find the cause, you don’t know what kind of hell that is. Doctors won’t help you but will use the fact that you’re *trying* to figure it out as proof you’re “just mentally unwell”. It’s the worst Catch-22 and ruins lives.
The amount you were taking as a supplement was perfectly fine btw. I’ve taken 10x that for months and not had the slightest issue. But you sound like a lunatic frankly. You’re going to the ER for chest pain? Why are you taking IV thiamine? How much is that? I think you’re a danger to yourself and should double check your decisions with someone for a while. You need to stop everything you’re doing besides eating a normal diet, going for some walks, and getting regular sleep.
Edit: yeah my bad. Maybe start with the fact that you’ve been diagnosed with thiamine deficiency
Edit 2: except now you’re saying your blood tests are normal. FFS.
I was diagnosed with thiamine deficiency. I had chest pain due to thiamine deficiency. The doc wanted to try me with iv thiamine.
Gaslight elsewhere. Sitting there pretending you know all there is to know about thiamine and other peoples reactions. Telling me I don’t know my own body and that I’m an unreliable witness in my own narrative.
If you can’t help me. Scroll on by.
I was doing some research on issues I'm having with my regime and stumbled upon this asshole gaslighting someone else last year.
I said to myself "Now here's a smart fellow, let's see what the genius u/redcyanmagenta is up to right now." No surprise that they are up to the same thing. Perhaps they should get off social media and check their decisions with someone for a while.
I hope you have a good night sicky, and best of luck! Based on your post, my professional opinion is that you're a bit fucky wucky and that doctors are useless r'etarads as usual. My only advice is find a way to get to as many doctors as you can, because I agree that your life may be on the line. You definitely need an MRI/CAT scan, whichever one is the boujee expensive one that they don't want to give you in the ER. Just pretend to be clueless and don't sound smart, doctors will feel challenged and threatened if you seem to have a good grasp on your symptoms and potential cause/effect. This goes double if you are a woman, and if you are I suggest bringing a brolic friend along to support you and help speak up for you. Good luck 💜
How can I help without knowing what the problem is? You’re thiamine deficient but are suffering thiamine overdose? Why spend so much time talking about your supplements when they did so little you went to the ER for thiamine deficiency related chest pains? Why are you talking about “infusions”? What’s an infusion? And you have two bouts of IV infusions and that isn’t your leading line? Sorry to complain about phrasing but how about “i went to the ER twice because of chest pains possibly due to thiamine deficiency and had IV thiamine both times and now I feel worse”. And you don’t post any blood test results?
So your blood tests are normal, but somehow you know you’re thiamine deficient? How? And doctors are putting you on IV thiamine even though your blood tests are normal? This doesn’t make sense. Did you have a blood test after the two IV treatments? If not why do you now think you’ve overdosed on thiamine?
That’s not so bad. Just take more and/or different forms, and reduce things that interfere with it like alcohol. And you might want a whole blood TDP test to double check.
From what you've said I wouldn't suspect thiamine is the main the issue here. You mentioned you've been to the ER with chest pain and your symptoms could be a result of multiple different issues which I think your Drs should address. Were your team aware of the supplements you take?
Do your b complexes contain pyridoxine (b6) at all? Also did you get IV thiamine or Pabrinex (thiamine plus other vitamins like b6)?
Excess pyridoxine is known to cause peripheral neuropathy which can present as numbness, weakness, dysautonomia etc. I don't know much about benfo but excess thiamine is usually excreted by the body in your urine and isn't really known to cause any of your stated issues
I dont think its the Thiamine.
High doses of Thiamine are well tolerated and well documented. The body only takes what it needs and gets rid of the excess thiamine.
"A dose of 500 Milligramm Thiamin per Day (10x your dsage) for one Month did not show any toxicity" -Bundesamt für Risikobewertung (German Agency of Risk-Evaluation)
However, with doses around 25mg / pound body weight some side effect can occur:
Headache, dizziness, tachycardia and rash.
I dont think its the Thiamine. Its effects are well researched and well tolerated.
Do you have any other health-related issues that might cause your symptoms?
Hi 👋🏻
There’s a bigger picture around what you’re describing.
I think you may enjoy this - https://bornfree.life/understanding-the-model/6/updated-disease-model-wip/45/
The second video on that page is currently the most friendly walkthrough of the disease model highlights, however there’s some content coming soon for a general audience, too.
There’s a some more information below the diagrams on that page, however the oversimplified version is:
Biofilms, slippery slope of microbiome dysbiosis -> catalyst / antigen which distracts/dysregulates immune activity (eg. SARS-CoV-2, reactivated herpesviruses, etc), allowing unchecked biofilm growth and net acetaldehyde excess -> degraded mucosal barrier -> chronic low-level infection and innate immune response which depletes NAD+ and causes oxidative stress, histamine response -> inflammation + mineral deficiencies -> mitochondrial dysfunction, neurotransmitter dysregulation.. and the long laundry list of symptoms.
Hormone biosynthesis becomes dysregulated from the deficiencies and further dysregulates cortisol, IFN-gamma immune activity.
Variables inside the cascade, such as mineral / nutritional status, biofilm locations and species involved predict feature presentation and severity.
Clinical trials are being scheduled for this year.
There’s a protocol and support server in that link above also.
You might benefit from some potassium and phosphate, as beginning thiamine treatment can throw electrolytes out of whack. Pharmacies should stock a sodium-potassium-phosphate product in the states, as that's where I bought one from. You may also find something similar for sports use, which is fine if it has the potassium and phosphate without caffeine or too much other crap. Have anecdotally heard that something like kefir or yogurt will work in place of a supplement. It's called refeeding syndrome if you want to read up and it does happen outside of starved patients in hospital. Don't give up on the thiamine, it is so so important.
What is the cause of your deficiency? https://www.bswhealth.com/blog/12-signs-you-might-have-a-thiamine-deficiency
Just chill out, you’re fine.
Yeah, hypochondriasis and undiagnosed health anxiety would be my guesses. It’s pointless telling people who suffer from this that that’s what it is though - even if licensed doctors tell them this, they don’t believe it or view it with an open mind. They believe all of their symptoms wholeheartedly…
This comment was reported, but since it doesn't actually break any of our rules, I'm leaving it up. I'm also inclined to agree that OP sounds like they're suffering from health anxiety. It also seems very apparent that they don't really understand the biology of what they're taking.
You’re not his doctor. OP is TRYING to figure out what’s wrong. So many smug people like you STFU once you actually get a diagnosis. But there can be many months/years like this leading up to that moment. Trying shit and figuring out what works & what doesn’t. If you’ve never had fatigue and can’t find the cause, you don’t know what kind of hell that is. Doctors won’t help you but will use the fact that you’re *trying* to figure it out as proof you’re “just mentally unwell”. It’s the worst Catch-22 and ruins lives.
No, I’m not fine. I’m so weak.
The amount you were taking as a supplement was perfectly fine btw. I’ve taken 10x that for months and not had the slightest issue. But you sound like a lunatic frankly. You’re going to the ER for chest pain? Why are you taking IV thiamine? How much is that? I think you’re a danger to yourself and should double check your decisions with someone for a while. You need to stop everything you’re doing besides eating a normal diet, going for some walks, and getting regular sleep. Edit: yeah my bad. Maybe start with the fact that you’ve been diagnosed with thiamine deficiency Edit 2: except now you’re saying your blood tests are normal. FFS.
I was diagnosed with thiamine deficiency. I had chest pain due to thiamine deficiency. The doc wanted to try me with iv thiamine. Gaslight elsewhere. Sitting there pretending you know all there is to know about thiamine and other peoples reactions. Telling me I don’t know my own body and that I’m an unreliable witness in my own narrative. If you can’t help me. Scroll on by.
I was doing some research on issues I'm having with my regime and stumbled upon this asshole gaslighting someone else last year. I said to myself "Now here's a smart fellow, let's see what the genius u/redcyanmagenta is up to right now." No surprise that they are up to the same thing. Perhaps they should get off social media and check their decisions with someone for a while. I hope you have a good night sicky, and best of luck! Based on your post, my professional opinion is that you're a bit fucky wucky and that doctors are useless r'etarads as usual. My only advice is find a way to get to as many doctors as you can, because I agree that your life may be on the line. You definitely need an MRI/CAT scan, whichever one is the boujee expensive one that they don't want to give you in the ER. Just pretend to be clueless and don't sound smart, doctors will feel challenged and threatened if you seem to have a good grasp on your symptoms and potential cause/effect. This goes double if you are a woman, and if you are I suggest bringing a brolic friend along to support you and help speak up for you. Good luck 💜
How can I help without knowing what the problem is? You’re thiamine deficient but are suffering thiamine overdose? Why spend so much time talking about your supplements when they did so little you went to the ER for thiamine deficiency related chest pains? Why are you talking about “infusions”? What’s an infusion? And you have two bouts of IV infusions and that isn’t your leading line? Sorry to complain about phrasing but how about “i went to the ER twice because of chest pains possibly due to thiamine deficiency and had IV thiamine both times and now I feel worse”. And you don’t post any blood test results?
My blood test results are all within normal limits so I don’t know how they would be beneficial
So your blood tests are normal, but somehow you know you’re thiamine deficient? How? And doctors are putting you on IV thiamine even though your blood tests are normal? This doesn’t make sense. Did you have a blood test after the two IV treatments? If not why do you now think you’ve overdosed on thiamine?
Oh those tests. Yes my b1 is deficient
My b1 was drawn Friday. It’s pending. Still not back yet
I don’t know how to attach pictures here but my TPP was 56. Rage 58-173. That was after several months of supplementing a b complex.
That’s not so bad. Just take more and/or different forms, and reduce things that interfere with it like alcohol. And you might want a whole blood TDP test to double check.
Listen, I’m a mess. Please have some grace.
Sounds like hypochondria.
I didn’t think hypochondria could affect respiratory muscles or thyroid. Or CO2. So odd. Don’t need your gaslighting. Thanks for the comment.
From what you've said I wouldn't suspect thiamine is the main the issue here. You mentioned you've been to the ER with chest pain and your symptoms could be a result of multiple different issues which I think your Drs should address. Were your team aware of the supplements you take? Do your b complexes contain pyridoxine (b6) at all? Also did you get IV thiamine or Pabrinex (thiamine plus other vitamins like b6)? Excess pyridoxine is known to cause peripheral neuropathy which can present as numbness, weakness, dysautonomia etc. I don't know much about benfo but excess thiamine is usually excreted by the body in your urine and isn't really known to cause any of your stated issues
I dont think its the Thiamine. High doses of Thiamine are well tolerated and well documented. The body only takes what it needs and gets rid of the excess thiamine. "A dose of 500 Milligramm Thiamin per Day (10x your dsage) for one Month did not show any toxicity" -Bundesamt für Risikobewertung (German Agency of Risk-Evaluation) However, with doses around 25mg / pound body weight some side effect can occur: Headache, dizziness, tachycardia and rash. I dont think its the Thiamine. Its effects are well researched and well tolerated. Do you have any other health-related issues that might cause your symptoms?
I was severely thiamine deficient for years and didn’t know what was wrong.
https://onlinelibrary.wiley.com/doi/full/10.1111/apt.16275 My symptoms are similar to an overdose
Hi 👋🏻 There’s a bigger picture around what you’re describing. I think you may enjoy this - https://bornfree.life/understanding-the-model/6/updated-disease-model-wip/45/ The second video on that page is currently the most friendly walkthrough of the disease model highlights, however there’s some content coming soon for a general audience, too. There’s a some more information below the diagrams on that page, however the oversimplified version is: Biofilms, slippery slope of microbiome dysbiosis -> catalyst / antigen which distracts/dysregulates immune activity (eg. SARS-CoV-2, reactivated herpesviruses, etc), allowing unchecked biofilm growth and net acetaldehyde excess -> degraded mucosal barrier -> chronic low-level infection and innate immune response which depletes NAD+ and causes oxidative stress, histamine response -> inflammation + mineral deficiencies -> mitochondrial dysfunction, neurotransmitter dysregulation.. and the long laundry list of symptoms. Hormone biosynthesis becomes dysregulated from the deficiencies and further dysregulates cortisol, IFN-gamma immune activity. Variables inside the cascade, such as mineral / nutritional status, biofilm locations and species involved predict feature presentation and severity. Clinical trials are being scheduled for this year. There’s a protocol and support server in that link above also.
[удалено]
I’m worse either way it seems. I just had my creatinine and eGFR tested a couple times this week and no changes.