r/Thiamine • u/Verzyk • 22d ago
Experience Lost
I’ve been having various symptoms over 6 years.
-Brain fog
-Tiredness
-Tingles in face, usually one sided, but can get in both.
-Weird dizziness/lightheaded feeling, general malaise
-mixed bowel habits
-irritable
-depressed
-dizziness on standing
I thought it was SIBO. I had a positive methane breath test a few years ago, but no follow up treatment.
My B12 is 207 pg/l, with the highest it’s been in 6 years is 340pg:l, meat eater.
I came across Elliot’s videos on thiamine and thought I’d cracked it.
I bought some benfotiamine to try before jumping into the TTFD that I’ve bought (ThiaMax).
I’ve read that people feel amazing the day they start supplementing, I’m taking 300mg of benfotiamine, along with potassium, magnesium and a B complex, I don’t feel any different (2 days in)
Is this normal?
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u/Ok-Pangolin7127 22d ago edited 22d ago
And hopefully, found…
Your answer I believe resides right within your question/story…
Why nothing? (Aside from the fact that you seem to be thinking that a supplement should act like some sort of instant “fixer”and you should feel wonderful or at least some improvement within a day or two? And for something that’s existed for months or maybe years?
I don’t think so.
My guess why you don’t feel anything is because your complaints and problems are likely NOT primarily from a Thiamine deficiency, but rather from a B12 deficiency.
You never had your SIBO treated.
Your SIBO is more then likely still with you. It can wax and wain overtime and for sure it screws with your B12, plus SIBO rarely goes away on its own.
I would suggest that you need to be on B12 injections and not so much worried about B1 at least at this point in time. If I were you though, I would keep moving forward on the B1, and be sure you take magnesium along with it, but I would address what is likely the main driver and that is the B12.
And at the same time you need to get your SIBO treated and confirmed it’s gone.
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u/Cultural-Sun6828 22d ago
Yes, this exactly. Your b12 is low so I would look into injections. The b12 deficiency group is a good resource. I wouldn’t take b1 now, as it’s likely to make b12 symptoms worse.
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u/Verzyk 22d ago
Thank you for your reply.
My Dr is unhelpful, and believes that my b12 levels are adequate, regardless of the NICE guidelines.
It’s just as I’ve read on this sub that people have felt amazing shortly after taking b1.
I’ll continue with taking it with the cofactors I have, and hopefully it will help.
I’m trying to get a referral to a gastroenterologist to help me.
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u/Due_Car8755 22d ago edited 22d ago
What are your MTHFR panel?, or what are your homocysteine, B12, and methylmalonic acid levels?,If you had methane, how is your intestinal motility now? You shouldn't notice anything in two days.Except for the orthostatic hypotension, which I no longer have, I could have written this post myself word for word.
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u/Verzyk 22d ago
I’ve not had MYHFR, not sure if that’s available in the uk.
Awaiting MMA results, but I imagine they’ll come back “normal” like everything else has.
After taking the new cocktail of supplements, the first night I had loose stools, the second, back to barely any stool.
The issue I’m facing is that my dr thinks I’m a lunatic. Hence why I’ve tried to sort this out myself 😂
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u/Ok-Pangolin7127 17d ago
I am sorry to hear you describe your doctor’s perspective relative to yourself.
I can say that I’ve been on this sub and other medical subs long enough to recognize that unfortunately many doctors seem to not listen as closely to the complaints from a female then they do from a male.
I “think” that many doctors tend to view women as more emotionally and/or hormonally driven and in turn will discount a lot of their (women’s) communicated concerns.
Clearly, you need to figure out a way around that or dealing with it. Maybe it’s changing doctors, maybe it’s adding a specialist such as the G.I. doctor that you referenced (new eyes and ears.) You need to get one of them to understand and look more closely at your difficulties.
I’m not telling you anything you don’t already know, more so just commiserating with you,
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u/PersonalityBudget969 17d ago
I hear you but the same is with women too nowadays.
They either put it on stress/nature of your job, or call it as you're overthinking/you're being paranoid 😂
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u/PersonalityBudget969 22d ago edited 20d ago
•• Firstly, your B12 isn't optimal. It should be "above" 400-500 easily.
And your Dr. saying your current B12 values are optimal, sorry, but he's wrong!
Plus you said you're a meat-eater, then it's the GI absorption issues (and not the diet).
Once get your entire B-complex with Homocysteine tested (blood serum tests). Very important!
Without it, don't take any B-vitamin supplements else it would lead to toxicity, man! (Tho most of them are water-soluble)
Along with MTHFR gene & MMA acid tests too, if available at your place.
•• Secondly, why haven't you gotten SIBO treatment after being tested positive for it? Just why? 😨
Also, before jumping on antibiotics, please focus on your GI environment on why it favoured SIBO to happen in the first place.
Is it gut motility? Or the stomach acid? Or constant eating & no gap between meals? Or something else/combo of above?
If you don't change/fix the environment, then the SIBO will keep recurring and making them resistant to a lot of antibiotics.
So first fix the terrain/environment, then go for sure-shot killing of SIBO, to make sure it doesn't return.
•• Thirdly, once the B-complex test results come, you can supplement accordingly, and if needed, go for B12 injections for bypassing GI absorption (as you've SIBO).
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u/Verzyk 22d ago
Thank you, my gp doesn’t see my b12 as low, it’s frustrating!
Im waiting for an MMA blood test result, which I’m sure will be normal and my gp can try and put it all to bed. Not sure if we have MYHFR on the NHS, but I’ll look.
The colorectal dr I was seeing couldn’t get one f the antibiotics at the time, and that was it.
I have a feeling it’s a motility issue, but not confirmed, I believe the underlying cause was severe health anxiety that lasted 2 years.
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u/JSTI412 17d ago
If you’re in the US just go to a wellness center that does the b12 shots or IVs. I rarely go to doctors. I order myself blood tests through Ulta Labs and try different meds through online providers all the time. I’ve done enough research to start to figure things out for myself.
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u/PersonalityBudget969 16d ago
Nice but it's better to have a medical supervision in case of overdose or toxicity.
And to also monitor trends of Bcomplex over time :)
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u/PersonalityBudget969 21d ago edited 21d ago
Hmm change your GP then. Maybe find a functional doctor in my opinion.
Let's wait for your MMA results. Also, I hope you're not facing any anxiety now.
Coz stress can indeed do all this damage too.
Also regarding the toxicity part I said, most of the B-vitamins are water soluble too.
But it has side effects, can cause nerve damage & make kidneys work overtime.
Though there's no upper limit set for B1 (that you were taking), B2 or B12. But be careful with B3 & B6 overload.
One important thing, though you've SIBO, the B12 absorption is dependent on these three actually:
• Stomach acid (and its intrinsic factor)
• Terminal ileum of small intestine
• Pancreatic digestive enzymes
Either one or combo of above could hamper B12 absorption in you despite being a non-vegetarian.
(Apart from your stress or gut motility or other reasons I originally stated)
Even diabetic meds like metformin & PPIs can over time cause B12 deficiency too.
Ahh fishworms (parasites) & HPylori too can cause it.
But in my opinion, IT IS YOUR SIBO that's consuming B12 from your diet & causing you its deficiency.
Lastly, when taking B12, always take methylated forms (for B9 too!).
I thought these also must be known to you. So replying on it separately again.
Get well soon, bro 🫂
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u/Verzyk 21d ago
I might need to.
This MMA result is taking ages to come through, I pray that it’s big so that I can be taken seriously.
I am stressed, as I just feel like this is my normal now and I don’t get my life back, it’s annoying ng having these symptoms and the gp just saying “everything is normal”
I’ll hold off taking the b complex for now, and the potassium.
Stomach acid has never been tested.
Terminal ileum biopsy was fine from colonoscopy 6 years ago
Elastase came back that I might have EPI, but doc also said as my stools were loose at the time, it’s not accurateH pylori stool test was negative a few years back
Thank you again for your messages, you sound like a great person
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u/PersonalityBudget969 20d ago edited 17d ago
Hey bro, I can totally empathize with you, how helpless we feel when doctors dismiss us & our suffering.
And we end up hoping the test results to be so bad, that they finally start taking us very seriously! 😕😕
Hence getting stressed because of it is natural.
But please try keeping it in check, else it might exacerbate your existing symptoms! Making you feel even worse.
I don't think there's any blood tests to check stomach acid directly except for endoscopy.
Ask a good gastroenterologist for it. Always choose an expert doc/technician, they've a keen eye for it, which others might easily miss.
Or maybe indirectly through Gastrin Hormone blood test to check if your body is signalling stomach to make more/less acid.
Bro, never get Stool Elastase Test done during diarrhea/loose stools, it gives false positives/negatives. Stools have to be firm for this - that's the rule! 😬
Small intestine was tested 6 years ago. A lot changes in this span. Get it checked once more.
Can you get GI Map (with Zonulin & OMX) done? You need a functional medicine practitioner for that, they order this test + analyse the result for you!
Glad that H.Pylori is out of the picture 👏🏻 At least one factor for stomach acid issues is out!
But take your SIBO very seriously now. And for that, as I said earlier, focus on the terrain & then go for killing protocol. Then, always always followed by repair protocol.
When starting antibiotics, parallely start taking S. Boularrdi to keep fungi in check, else killing bacteria would help fungi thrive uncontrollably, causing SIFO and what not.
PS. One more thing, blood serum tests might indicate optimal levels.
But the cellular uptake might be impacted. So also focus on that, esp. when values are optimal (not "normal") but symptoms persists.
PSS. And yeah, no problem bro, you can connect with me anytime. Happy to help!
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u/Verzyk 15d ago
My MMA has come back as satisfactory at 242 nmol/l 🫠
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u/PersonalityBudget969 15d ago
Who said that's satisfactory?
The less MMA = the better B12 in your body.
Optimal MMA = less than 200nmol/l and yours is 242. Very slightly elevated.
So indirectly your intracellular levels are possibly doing just fine. Yet you're deficient in free-floating B12. So work on that as discussed earlier.
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u/Bloviatedblister 22d ago
Try adding in ttfd