Benfotiamine - a double edged sword due to sulfur sensitivity

Changexpert

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After doing some research and talking to forum members, I finally realized that I have autonomic dysfunction (dysautonomia). Since I was a small child, I suffered from muscle weakness, excessive sweating, muscle twitching including facial areas (around lips and eyes), frequent thirst, bladder dysfunction, orthostatic hypotension, and shortness of breath with an exercise. The common symptoms for dysautonomia can be found here. It may be too broad to include all those symptoms under dysautonomia, so please talk to your physician about your circumstance.

One symptom I severely hate is excessive sweating. So far, only one supplement has helped with this, which was sage extract. However, sage extract's long-term effect has not been studied, so I stopped taking it after 2 months. After doing some Google search, I came across many people saying that benfotiamine can help with diabetic neuropathy. Some websites even said benfotiamine can help with autonomic neuropathy. I was skeptical as the websites were a little shady, but my serum thiamine level was at the bottom of reference range when I had my lab work done last year. I was actually supplementing with 5 mg of thiamine back then from a multivitamin, but stopped taking it from this year. I suspected that my thiamine should have been depleted from increased metabolism by other vitamin B supplements I have been taking. So I decided to try benfotiamine.

I took 160 mg of benfotiamine on the first day and 320 mg of benfotiamine on the second day. Within two days, my body temperature became a lot more stable and I noticed I was sweating relatively less. I even did a test by going to a gym for my regular routine. Regardless of how hard I tried on the treadmill, I did not get soaked with sweat, which was very surprising. I did another test by going out in the sun with a black T-shirt. Usually I would start sweating within 5 minutes in the sun, but despite today's high temperature (91 F, 33 C), I came back inside with no sweat on the back. I also noticed I sweat less during sleep and my armpit, palm, and feet are less wet than before.

So benfotiamine might be the magic pill I have been looking for, but here's a kicker. Since benfotiamine contains sulfur, it somehow reacts with my sulfur sensitivity, resulting in side effects. The immediate side effect I noticed was increased hair loss. I have sulfur sensitivity for some reason (definitely not due to CBS and my SUOX gene is fine), which I think is due to excessive sulfate reducing bacteria and gut dysbiosis. I cannot take any supplements that contain sulfur like cysteine, taurine, methionine, B1, biotin, patethine (less problematic than others), glutathione, NAC, MSM, and chlorella. If I take any of the supplements that were mentioned, my hair loss at least triples the next day. My body simply cannot metabolize sulfur properly, so sulfur supplements always cause "shock" (oxidative stress?) to my body. How should I go about tackling sulfur sensitivity? Benfotiamine would be a wonderful supplement only if I can tolerate sulfur. Please share your experience and opinions. Thanks in advance.

ps: I do not react negatively to ALA as long as I take it every 3 hours or less. I am not sure what is causing this paradox either.
 
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Critterina

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Gondwanaland

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@Changexpert I think you are barking at the wrong tree.

Most of your symptoms are probably serotonin poisoning due to +/+MAO-A.

As for Thiamine, I think it helps with sweating b/c it improves your potassium and magnesium metabolism/absorption.

As for hair loss, since thiamine is recommended for anemia (this is the reason why I am taking it right now), it will put higher demand on iron. Additionally I have experienced low copper from sulfur supplements like biotin, because it will use a lot of copper to form collagen and you will have to supply it constantly either via supplementation or food.

Coincidentally today @aaron_c wrote about vitamin A disrupting iron metabolism, and I am sure vit A is not the only vit/nutrient to do it.

So to keep supplementing B1 successfully, watch your minerals bearing in mind all that B1 does in your body.
 

Changexpert

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@Changexpert I think you are barking at the wrong tree.

Most of your symptoms are probably serotonin poisoning due to +/+MAO-A.

As for Thiamine, I think it helps with sweating b/c it improves your potassium and magnesium metabolism/absorption.

As for hair loss, since thiamine is recommended for anemia (this is the reason why I am taking it right now), it will put higher demand on iron. Additionally I have experienced low copper from sulfur supplements like biotin, because it will use a lot of copper to form collagen and you will have to supply it constantly either via supplementation or food.

Coincidentally today @aaron_c wrote about vitamin A disrupting iron metabolism, and I am sure vit A is not the only vit/nutrient to do it.

So to keep supplementing B1 successfully, watch your minerals bearing in mind all that B1 does in your body.
Thanks for the feedback. Iron is another puzzle I need to figure out as my both MCV and MCH levels are elevated while my platelet level has been declining. I posted my lab results earlier on this thread.

The symptoms I have experienced could be due to too much serotonin, but if that is the case, taking FMN should have improved temperature regulation issue. Unfortunately, that has not been the case until I took benfotiamine two days ago. While my mood and brain fog improve substantially when I take FMN, it has no effect on symptoms related to ANS like excessive sweating.

Also, hair loss worsens when I eat foods that are high in thiols like broccoli, onions, garlic, brussel sprouts, and cauliflowers. I used to eat all these foods fine until I tried 10 mg of biotin for two months. I am not sure why I cannot tolerate sulfur anymore. The best theory I can come up with is that consecutive surgeries followed by rounds of antibiotics to prevent infection allowed sulfate reducing bacteria to proliferate. In addition, taking too much biotin fed SRB's and allowed them to produce cyanide as a byproduct, resulting in more gut dysbiosis and constant oxidative stress.
 

JaimeS

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sage extract's long-term effect has not been studied, so I stopped taking it after 2 months.
I know that this is really quite besides the point, but I was a bit thrown by this statement. How much sage were you taking, and what species? Was it just Salvia officinalis? Unless you're taking giant doses, there are many countries where it would be very unusual not to ingest a bit of this every day. Also, sage is studied like mad. Put 'Salvia' into pubmed at you get 4000+ results.

Perhaps it wasn't helping you, but I wouldn't be overly concerned about this herb.

-J
 

Violeta

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Would this " Hemoglobin, hematocrit, both low" mean that your body isn't producing heme? If so, and also with the issues caused by eating vegetables high in sulfur and also taking benfotiamine, it might mean that when those items induce the process of building heme for CYP450 enzymes, there is a glitch in the heme production. So your body never gets the negative feedback to stop production, your levels of heme are not adequate for your body's needs, and also your Phase I liver detoxification isn't working right, and you would end up with too many heme precursors, which in and of themselves cause lots of issues.

The only thing that contradicts that theory is that the extra heme precursors do not promote clarity of thought, they are more likely to promote anxiety, insomnia, and agitation.

PS: Does benfotiamine cause sores on your lips?
 

Changexpert

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Would this " Hemoglobin, hematocrit, both low" mean that your body isn't producing heme? If so, and also with the issues caused by eating vegetables high in sulfur and also taking benfotiamine, it might mean that when those items induce the process of building heme for CYP450 enzymes, there is a glitch in the heme production. So your body never gets the negative feedback to stop production, your levels of heme are not adequate for your body's needs, and also your Phase I liver detoxification isn't working right, and you would end up with too many heme precursors, which in and of themselves cause lots of issues.

The only thing that contradicts that theory is that the extra heme precursors do not promote clarity of thought, they are more likely to promote anxiety, insomnia, and agitation.

PS: Does benfotiamine cause sores on your lips?
Something is a bit off with my RBC as the MCV level has reached 100.8 fL. MCH has also went beyond the reference range. My serum iron level and ferritin levels were good, on the high side of reference range back in last December. Both B12 and RBC B9 levels were good back in last November.

I think you are onto something about building heme for CYP450 enzymes. I am not sure the exact mechanism how that works, but I can definitely give you more background about my liver. I am an Asian guy and I cannot break down aldehyde very efficiently as I get Asian flush every time I drink alcohol (a bottle of beer is enough to get me flushed). I cannot metabolize caffeine well either. Even a small cup of coffee after 3 PM would keep me awake during the night. This matches with your guess for slow phase I liver detox. Also, I cannot take iron supplements, regardless of what form they are in. Any iron supplement results in extra hair loss, fatigue, and irritation.

To clarify, the brain fog clears from FMN, not from benfotiamine. I have not taken benfotiamine long enough to see if it will cause sores on my lips or not. I have taken it for three days only (160 mg, 320 mg, 320 mg) and I did not get a sore lip from it. I did not notice anything special in regards to mood, which would imply that benfotiamine did not have immediate noticeable effect on my mood.

On the other hand, I get more severe side effects from taking B6, both regular and coenzymated forms. Would this be related to liver as well? I remember taking regular B-complex before I was extremely sick and it would always drive my body into a hyper state. I eventually figured out that B6 was the most problematic B vitamin for me, but I am still not sure why I have such adverse reaction to even p5p.
 

Crux

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Hi,
Just thought I would mention that an elevated MCV and MCH is often associated with B12, folate deficiency. It can also be from copper deficiency, hypothyroid, liver dysfunction, etc.

Many of us have found that even with good to high levels of B12, we're still deficient. ( some gut bugs steal it )

Copper deficiency is associated with low iron.
 
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@Changexpert, @Gondwanaland I have similar issues when I take Benfotiamine. I have history of
Anxiety issues and i see the anxiety with high Sulfur/Sulfate supplements. I am on SSRI as well. I really need to take vitamin B1 as it helps reduce lactic acid and also normalized my body temperature ( usually it's less than 98 degrees due to hypo thyroid issues) . I have SIBO issues and I really think it helps but not sure how I can take it due to the sulfur intolerance. Any ideas.. Thanks
 

Gondwanaland

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@Changexpert, @Gondwanaland I have similar issues when I take Benfotiamine. I have history of
Anxiety issues and i see the anxiety with high Sulfur/Sulfate supplements. I am on SSRI as well. I really need to take vitamin B1 as it helps reduce lactic acid and also normalized my body temperature ( usually it's less than 98 degrees due to hypo thyroid issues) . I have SIBO issues and I really think it helps but not sure how I can take it due to the sulfur intolerance. Any ideas.. Thanks
Observing fructose malabsorption has been a life-changer for me. I only eat fruit in the mornings and never after 5PM anymore.
 

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I found that taking thiamine (allithiamine) and molybdenum enabled me to taking sulphur based supplements again and generally tolerate sulphur foods better.
 

Moof

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Thank you, @racerbiker39, for bumping this, or I wouldn't have seen it. I've had some days recently where there were almost no hot sweats, and I didn't wake up with my pillowslip drenched. I couldn't for the life of me work out why this might be...but thanks to reading this, I've realised it's when I take Benfotiamine. I know to take it every day now!

Unhelpfully (to the original poster) I've never had sulphur sensitivity, and in fact the sulphur drug I take for inflammatory arthritis has improved my ME – so unfortunately I don't have anything to suggest about that. #headscratch
 

Stretched

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Benfotiamine (lipid soluble B-1) is alleged to be helpful in treating painful (peripheral) neuropathy, along with the other B’s, B complex, Alpha Lipoic Acid, and Evening Primrose Oil. I suppose the nature of these affects implies
broader applications re nerves or inflammation.