Benfotiamine dilema :(
 

Ok so I thought I found my miracle.

Benfotiamine has been stopping the burning in my feet for the week I have taken it.

Down side: It makes my heart race and raises my blood pressure.

I know most everyone and everywhere says there are no side effects from Benfotiamine but I have scoured the net and found a few other people who said it cause their heart to race. I can live with the racing heart but Im on blood pressure meds, and lately my bp has been soooo good I have thought about maybe getting off it soon cuz I have lost 30 pds, and doing so good UNTIL Benfotiamine.

I just was not feeling good, I have always known when my bp gets too high cuz I get dizzy, and sure enuf every time I check it, after taking Benfotiamine it is high. Today was the highest ever for me, not a crisis, but 150/99 and for me that is very high, when lately its been 120\85

Im so sad.

This is the best my feet have felt in a year. :(

OH, sorry. Can you just cut the amount maybe? What is your dose?

Yes, that is what I am going to try tomorrow and pray it works still.

I started out full throttle, I took 3 pills morning and 3 pills early evening to equal 480 (they are 80mg pills dr's Best but only 80 mg not the higher dose)

My blood pressure comes down as time goes by after taking them but it takes about 5 hrs now it is 127/85.

Im praying i can do less dosage and still work for my feet. I have been on cloud 9 for a week with ZERO burning. My husband and I are so amazed, literally started working the first pills I took. But I read somewhere that taking diuretics can cause B1 depletion and I have been on diuretics for 2 yrs now.

Why don't you try 150mg a day?

Are you taking lipoic acid too? I find lipoic acid very stimulating over 100mg a day.

What blood pressure medication are you on?

You may be low in magnesium too. Low magnesium raises blood pressure. Some people with moderate BP can often control it with magnesium ALONE.

Yes, I am going to try that tomorrow. (150)

I am on hydrochlorothyzide , spelled that wrong, but its basically a diuretic only. I was on stronger things and had a very difficult time with side effects, but my life was way more stressful 2 yrs ago when it started. So now I just do the diuretic and it has worked pretty well, with occasional bad days. Since losing weight and starting to exercise its been great, 117/80 and like i said, was hoping to ween off it after losing a bit more weight, if possible.

My magnesium is good. I supplement with it and in the past when my bp spiked I found an epsom salt bath would lower it by 5pts. But my levels were great last time checks, dont remember what the number is now..and I supplement daily.

No, not taking lipoic acid right now...I did take it in June for a month and after I ran out i didnt get anymore. Was thinking about trying R lipoic but have not gotten around to it, trying one thing at a time.

Hopefully less will work.

My thyroid meds felt like a diet pill too, and I could not take the prescribed dose right away, I had to slowly, very slowly, take more. I started at a very small dose cuz I got headaches with the standard dose, which I have now worked my way up to but I had to start low and stay there for weeks, then add more, then more.

Thanks ladies!

I am not finding anything about raised blood pressure and benfotiamine. But there are some comments on LOWERING effects.

I know Mrs. D, I saw that too!!

Not one person says it raises BP. But it is most definately the Benfotiamine that is doing it to me. I guess everyone is different.

I did find a couple people who said it made their heart race also.

I guess I am "special" hahaha Just my luck :(

I am about to take my first benfotiamine today, only taking 1 pill, which is 80 mg. I will know within 20 minutes if it raises bp and makes my heart race.....

It is always good to start with the lower side of most supplements to ease into it. That was a pretty high amount. I hope you feel better and can take a moderate amount.

Yes Sally, I did dive in too fast on the amount.

My BP was 117/79 Right before I took 1 benfotiamine 80 mg.

It is now 1 hour since taking it and no heart racing and BP is 130/81 Which i can live with if it does not keep going higher.

I will check BP a few more times and plan to try and take another pill this evening.

I just hope taking only 2 pills will still keep the burning in my toes away...

If not, maybe I can work my way up to more pills.

thanks for the discussion Ladies! Nice to have somewhere to bounce stuff around.

Blood pressure tends to be highest in the morning...that is when cortisol is highest.

It will also read higher after a hot bath or shower. And also if you have a full bladder (don't know why this is but I read it in a medical text once)

BP can vary quite a bit during the day too. I learned that when I was pregnant and my BP went up in the second trimester. The kidney specialist made me keep an HOURLY log.

Yes, my BP fluctuates quite a bit and I use to check mine 4 or 5 times a day when I was figuring out my meds.

I don't worry about little fluctuations, ups and downs, but yesterdays got too high for my comfort. I literally do not feel good when it reaches 150/100 and that is a high number for me.

But as long as it does not get too high I wont mind some minor fluctuations while taking benfotiamine.

so far so good with only 1 pill, and I really can tell a difference. No racing heart at all.

Could the racing heart have sent the BP up so high?

Guess its trial and error along with prayer that I can keep taking it.

It is VERY strange that nobody else had this problem. :(

I would stay on the lowest dose for a little while. Then very slowly go up.

Everyone can react to diff. things. We are all different.

Yes, cortisol should be higher in the am. I had a new saliva-all day test and mine is low this time in the morning, the rest of the day is fine. Last time was different. I have CFS and Dysautonomia so more things going on.

I take extra pregnenalone in the eve to raise morning cortisol. I can also take cortisol in the am, but it seems I am sensitive to it.

Just keep working to get the right dose. I would stay low and go up as you can, slowly.

Just thought I would post an update:

I have been able to take 4 of the 80mg benfotiamine a day. I have to spread them out, if I take them too close together, bp will spike. But spread throughout the day and night my bp is ok.

Bonus:

This has been a miracle for me. I am so completely shocked that the burning is GONE. Almost from the first pill the burning went away. Only once since starting benfotiamine have I had a burning episode, and it was during an injury I had last week and I was in pain from my injury. I don't have any idea if the injury/pain was reason to cause the burning.

Question:

For anyone who might know. Is there a blood test for B1 deficiency? I am wondering if I need to take this supplement for the rest of my life or take less or what.

Ending:

Happy!

There is a blood test. But you cannot be taking supplements for a while to get an accurate assessment of your status before the Benfotiamine.

There are people with genetic errors in thiamine metabolism.
I believe Asians are listed commonly, but others fall into that genetic category too.
It can get pretty complex:
http://en.wikipedia.org/wiki/Thiamine

I saw a NatGeo show about dying alligators in Florida in a closed in large lake. They couldn't find what was killing them.
Eventually a biologist noticed a type of fish that had taken over because of increased algae from farm run off of fertilizer. These fish took over the pond, and were the only thing the gators could eat therefore. And these fish had an thiamine enzyme in them that deactivated thiamine in the gators. (called a thiaminase). This then caused a massive deficiency in the gators and then THEY died en mass!

I don't think regular doctors would have a clue, about this. And back in the day....thiamine was a TREATMENT for PN commonly, especially among the elderly. This totally stopped when gabapentin came out. Imagine all those who could have been helped by the thiamine today still?

Thank MrsD!

I guess I will continue to take it..forever? lol Maybe at some point I will see if I can decrease dosage to less amount.

I am unwilling to stop taking it for a blood test, the weeks I have been on it without burning have been to wonderful to give it up yet just for a test. For the first time in 2 years I don't want to chop all my toes off.

thanks!

You may need it for life. But you may not need the really high doses, unless you eat lots of carbs or drink alcohol.

Benfotiamine is stored a little bit, and unlike thiamine is less water soluble and won't come out in the urine so quickly.

So with time you may store enough up to only need a maintenance of 150mg a day or so. That is all I use now too.

Ridiculous findings...
 

Hi all,

Looks like this thread has been abandoned for quite some time or rather there is nothing new to say...

I have a question - especially for Stacy - any news about lowering (or keeping at a normal level) your blood pressure when using Benfotiamine? How are you doing now? I experience similar symptoms...

***
My experience with Benfotiamine...

Benfotiamine proved to be my last resort. For about 10 years I felt like I was going to die. These symptoms included muscle pain, tiredness, brain fog, paresthesias and neuropathy, finally no appetite. Recently one of the doctors suggested that it might be hyperinsulinism, and thus I started to research the issue and found out about Benfo. As a matter of fact I now see that it might also have been thiamin deficiency all along, but the thing is that I used to supplement 25-50 mgs of thiamin hydrochloride a day. So, if it was thiamin deficiency, this would mean that I have severe absorbtion issues with thiamin hydrochloride. On the other hand it may still be hyperinsulinism or insulin resistance, though preliminary test results do not confirm that. But the way I feel after taking Benfo shows that I may indeed have some kind of glucose intolerance (more on that below).

I started taking Benfo about a month ago. Started with 300 mgs daily (for 3 days; the symptoms started to go away), then 1200 mgs (for 7 days; my conditon got even better), then I started feeling kind of strange (giddy=overdosed), and stopped taking Benfo for 2 days. Afterall, I thought that the pool of thiamin inside my body should have been replenished, at least for some time. Unfortunately, it was good for 2 days.
Then the symptoms came back with a vengenance, I experienced something like spinal nerve inflammation, incredible paresthesias, tendonitis etc. So it was worse than before, an attack.

Then I started taking 300 mgs again and the inflammation subsided, and I was gradually getting better and better. I even started to have an appetite and ingested more food. Last 3 days of increased food ingestion and I experience even stranger symptoms, namely I feel very hot (basal temp. 0.7 degree F higher than normal, so IT IS crazy), my heart is pounding like crazy and the blood pressure must also be high but at the moment I can't confirm that with measurement. Ingesting even one small candy causes heart pounding. So now I've lowered the Benfo dose to only 150 mgs a day. I can't go any lower because then the nerve inflammation strikes. I only can limit my food intake, but even without limiting it's rather next to none - so this means that I simply have to starve (only then the heart pounding stops).

I can safely assume that the way my body behaves is consistent with insulin resistance, namely liver insulin resistance.
(You might wanna familiarize yourself with the pathology of diabetes and the mechanism of action of Metformin in order to understand what is going on with me.)

Before taking Benfo all tissues might have been insulin resistant, ie. liver and muscles were equally resistant (or rather: their resistance was matched). After taking Benfo muscles are not resistant anymore because they are forced by Benfo to process glucose no matter what. But the liver is still resistant because the mechanism of its resistance is not susceptible to Benfo action (liver is not metabolically active in the same way as muscles are; muscles consume glucose; liver produces it). When the liver remains insulin resistant and you ingest food it keeps producing glucose despite the fact that it should stop, because you get plenty of glucose from food.

It's a little tricky, the way our body works and responds to Benfo (and insulin and glucose for that matter, so beware).

Anyways, after taking Benfo you may end up with your muscles forced to process glucose in excess amounts. There is mechanism that prevents it, but Benfo interferes with it (but this is the very same mechanism that is responsible for the beneficial effects of Benfo).

So now also your heart muscle has an excess of energy to expend and it does that by pounding and increasing your blood pressure.

Similar symptoms would arise if I had hyperinsulnism, insulinoma, etc. but now (with Benfo ingested) the insulin level may seem quite normal, whereas it is still relatively too high for your "benfotiaminized" muscles.

So much for my theory...
What do you think should be done about that? I think Metformin is probably the answer in my case.

***
Many people ask if they should be taking Benfotiamine because they are afraid that exactly this kind of increased glucose utilization may be a cause of cancer. I think that if there is a good response to Benfotiamine symptoms-wise, Benfo should be taken (regularly). It's almost a causal treatment, whereas other treatments are more symptomatic. The problem with Benfo treatment is that you have to be aware that your cells will (partially) lose control over glucose utilization, and you need to adjust your treatment and diet accordingly (by treatment and diet I mean controlling your diabetes, prediabetes etc. and Benfo dose). And yes, it looks like with Benfo you may experience diabetic-like symptoms even if you are not diagnosed as (severely) diabetic, but also bear in mind that Benfo is used to treat these symptoms and it works (like magic). However there are side effects.

It would be great to find out if these side effects can be remedied...

@Bigg...

I am going to have to do some research on your post.
It is pretty complex what you have proposed.

I never had any side effects from Benfotiamine, for years ...
and others have not reported the things you are commenting on.

Hi!

I am ok, benfotiamine has stopped having any side affects for me, at any dose, it seems I can take a little or as much as I want. It also stopped being my miracle cure for burning at any dose though it does help and I continue to take it because when I quit taking it burning was worse. I still consider it one of my must have supplements and take it everyday.

I am not really sure about the rest of the stuff you talk about with it and will be curious to see what MrsD says about it.

That's great to read, so I am hoping that I will get rid of the side effects (or just wait until they stop).
You are one of the very few on the web to report any side effects.
Anything can cause side effects in susceptible individuals/individuals with preexisting condition, be it hyperinsulinism/diabetes or maybe nerve dysfunction (my other hypothesis; this would cause faster and stronger electrical discharges and muscle stimulation) that reveals itself only after energy level returns to normal and it does return with Benfo. Time is needed for all the mechanisms to adjust themselves, but also the maladjustment may be so severe (simply yet another disorder/disease) that it would require my intervention, better sooner than later.

Benfo works in two ways: brings immediate relief by influencing metabolic pathway, improving energy status etc.; and brings long-term relief what means that nerves might have healed somehow. BTW. what else do you take?

My ideas are a little speculative but as well may be true...

I've looked around at the information on the net. Most of it is proprietary, meaning it comes from some source that MAKES it or whatever. That info is quoted then by other sources, that sound highly believeable. But this type of thing, I've learned, can be suspect.

So I defer to Linus Pauling Institute's site for now:
http://lpi.oregonstate.edu/infocenter/vitamins/thiamin/

What I did learn was that benfotiamine is better absorbed, but then is activated to thiamine itself in the body. Which then does not cross the blood brain barrier easily. It has to be ferried across by a carrier system. Which means SLOWLY.

Some of your comments, Bigg are confusing.
Heart rate does increase after eating. This is because blood is then shunted away from the body muscles and brain, and then goes to the GI tract, for aiding in carrying away food that was just eaten. Sometimes you can tell it is happening and other times you don't notice.

When glucose is extra in quantity it is converted in the muscles, liver, to glycogen. It does not force the cells to faster consume it like you describe... as those functions are rate limited by enzymes present. The liver has living cells like the rest of the body and they would be removing glucose from the blood like any other organ, to live and produce energy. In fact the energy to convert amino acids to glucose is larger than just for living functions.

This link is to the Kegg pathway for thiamine:
http://www.genome.jp/kegg/pathway/map/map00730.html
Glycolysis is only one phase of what thiamine does.
What thiamine does is link up to enzymes that perform various functions in the body. The rectangles in this map are enzyme names. Many have thi- connected to them. The way enzymes work is that there are limited amounts of them at any one time doing jobs, and when the substrate is more than the enzymes can handle the substrate moves on to another function.

The RDA for thiamine is really small... just over a milligram. So that implies that the amount of enzymes is very small also.

I suggest you remain at a low dose of benfotiamine if you decide to continue taking it. Not many of us use a high dose anyway.

This Medscape article explains the various forms of active thiamine in the body.
http://www.medscape.com/viewarticle/583556_3
you have to join Medscape to view it, but that is easy and free to do. This link is to page 3 but once there you can go back to the beginning if you choose.

The biochemistry of the enzymes and nutrients in the body is highly complex and really cannot be distilled down to subjective ideas. You may have something else organic going on with you that is making you feel the way you do. But for now, I'd suggest you keep your benfotiamine low dose.

There are genetic and other organic causes of low thiamine...
this link explains those:
http://www.uic.edu/classes/phar/phar...se_report3.htm

Interesting..I certainly never ran across any of this info in my search of information on benfotiamine.

Possible reason for racing heart on Benfotiamine
 

Stacy, I came across your post, and thought I would chime in - like many people I'm sure, I've tried various supplements to stave off various health conditions I have felt coming on, hereditary weaknesses, etc. At one time, I was noticing side effects from different supplements, and among them itchy skin, and heart racing. The skin itching in particular was curious, because I was getting it from very different supplements. It dawned on me to see if I could find a common "filler" ingredient in the supplements that were causing the problem, and I discovered that it was Magnesium Stearate. If I ony use supplement without this ingredient, I never have itching skin. As for the heart racing, this could also be an allergic reaction to fillers, and not the Benfotiamine itself. I would suggest as others have, to start at a low dose, but also find a different version of the product, one with different fillers, and see if it makes a difference!

Thanks! I don't have any problems anymore at all with benfotiamine but I take a lot of supplements also and I question the safety of mag. stearate. I don't think it causes me any side affects but I do question its safety as it is in EVERYTHING and I think I take to much of it. People here kinda laughed at me when I made a post about it, lol but I do think there is good reason to have some concern.

thanks for the input!

It is interesting about the itching..

Magnesium stearate does not ionize (dissolve in water), and is
considered not absorbed by the body. Stearic acid is in most meats.

This is the Wiki on stearic acid:
http://en.wikipedia.org/wiki/Stearic_acid

So perhaps it is some contaminant of manufacture in the making of magnesium stearate....because this compound itself is really
very neutral in the body and comes out in the stool. The amount in a small tablet/capsule is also very tiny.

In the form of stearate...it is not absorbed. Stearic acid may be absorbed to some extent, as it is metabolized as described in the Wiki article. In the form of stearate there is much less absorption if any:
http://en.wikipedia.org/wiki/Magnesium_stearate

This powerpoint link claims magnesium stearate is used in over 2500 pharmaceutical products (and this includes RX drugs).
http://ipecamericas.org/system/files...nckrodt%29.pdf

I'd continue to find a trigger to your rashes... however.
Do your rashes respond to antihistamines?