Benfotiamine and SFPN
 

Hello all,

I'm new to this forum and very happy to see it exists.

Recently I tested with low blood glucose after a 2 hour tolerance test, basically in the range for postprandial hypoglycemia, even though I had a normal fasting glucose before the test. I have been taking Benfotiamine for 4 months because of peripheral neuropathy (now we know it's small fiber PN), likely from something autoimmune. I am wondering if it's possible that the Benfotiamine is having an adverse affect on me, in particular making me hypoglycemic, say like Alpha Lipoic Acid is known to do. It was the first supplement I took and I guess I haven't reassessed things since. I'm having difficulty finding anything on this issue online.

Thanks,
Dave

Benfotiamine is extremely beneficial in glucose metabolism. There definitely may be a link if you take it regularly. It does help with SFN pain for sure. Did you take Benfotiamine the morning of the OGTT?

My personal experience is that Benfotiamine is very good at reducing blood sugar levels. My personal fasting levels reduced by about 10 points on a dose of 500 mg a day. For me its been a win/win, I have never been below 70 even at my lowest reading. Usually i average in the low 80s.

Do you have any idea of your levels before you started taking the benfotiamine? A1C, fasting or OGTT? Personally i wouldn't stress over anything unless I had a really low A1C level. Because that shows what your blood sugar level is as an average over 3 months. If you have been taking Benfotiamine for that time it would be a really good gauge. If you had a normal fasting it seems like this is really not a cause for concern. My doctors have done all 3 blood sugar tests several times. What the told me was that they need to see a trend across all the tests to make any serious diagnosis.

You could always do blood glucose monitoring at home as well. Can get a kit pretty cheaply on Amazon. Its a good way to see what may be a trigger on your own without dealing with doctors visits and lab workups.

Thank you for your thoughts. I really appreciate it. Unfortunately I don't have much more than the one test, where fasting came in at 81 and at 63 2 hours after the sugar drink. I think I may have some other fasting stats from earlier and possible before I even starting taking the Benfo. about 4 months ago.

I didn't take it the morning of, since I take it with breakfast and dinner, 300 mg. each time, so 600 in total.

I did some monitoring at home over two days and it didn't fluctuate very much and certainly didn't drop that low again, staying in the 70s or 80s, but perhaps that's because I'm on a zero sugar, very low carb diet, a paleo diet that doesn't even include starchy veggies. I did alter my diet on the second day with some sweets and carbs, a decent amount but again not that kind of fluctuation at all and not that low.

Basically I'm trying to see two things. First, what supplements will improve my health, and not so much for pain but for healing: I want to heal my nerve fibers. Second, I want to know whether Benfo. is doing good or harm. I really don't know. I've improved for the most part from the summertime, but I've done so much more than just take this supplement and my dietary changes have been by far the most important and helpful.

The concern is that because I don't have diabetes, the Benfo. is lowering my glucose too much or have a detrimental affect on how I'm metabolizing sugar, etc. I am considering going off it for a few weeks or at least a week or two and monitoring my glucose levels. I suppose I can do this. Or I can have the doctors do it for me. The thing is, I don't want to break my diet, since each time I do it's hell on my symptoms and it can last for weeks. So given this restriction, my thought is that I can only go off it, everything else being equal, and then see how my body is reacting. I could also take my glucose levels on it and off it, I guess. I'm really not sure, and was hoping for some literature on it, even online.

When I received the results I wondered whether it's because of my diet, which also goes back 4 months, and whether my body just didn't know how to deal with the load of sugar after 4 months of a ketonic diet. I suppose I just don't know enough here. I did stay off the Alpha Lipoic Acid precisely due to concerns over hypoglycemia, even though I've heard it can help with PN.

By the way, what's an A1C? I imagine it's glucose levels or averages of it over time?

Thanks again!

Perhaps I should also mention something else that could have affected my numbers: since I went on the paleo diet, I've lost about 40 lbs. It's for all these reasons that I'm finding it difficult to isolate what's going on and am considering everything including the Benfo.

Reactive hypoglycemia, is a prelude to developing diabetes.
Some move on to diabetes, and others don't depending on their own genetics.

I really don't think you need 600mg of benfotiamine a day.
Once those enzymes get saturated with thiamine, then you can coast on a lower dose. 300mg or 150mg a day should be enough for most people. 150 mg is all I take myself.

If you don't FEEL the hypoglycemia, then it may not be an issue at all for you. But if you feel shakey and sweaty before meals then do lower it a bit.

Insulin resistance is the cause of the reactive hypoglycemia. It means you have too much insulin being secreted after a meal.
Fixing your diet as you have, should be doing good things for you.

The A1C is a measure of a type of hemoglobin in the blood, that has a glucose attached to it. It is a 3 month average of your blood glucose level. People with high spikes after eating will show that in the A1C. But lows typically are not predictable or illustrated with it. The A1C changes with race and age... so it is not comparable 100% to everyone equally. It is rather new, and as such is undergoing scrutiny for accuracy in the elderly or those of African or Hispanic descent.

Thanks for writing. Thank you also for the supplements thread, which I've now read through. There's a lot of helpful information there.

Right, well, hypoglycemia CAN lead to diabetes and signal prediabetes, but need not do so and can be caused by a number of other unrelated conditions. So the etiology is not well known, certainly not 100%, which is why some go on to develop diabetes and some don't. There is clearly partial correlation, but certainly not any causation, let alone partial causation. Of course, it's something to bear in mind. But it's relevant that my fasting glucose has tested normal each time. And I did have a normal A1C too, though perhaps that was before the Benfo. But as you say, who knows what the normal parameters of such testing is at this point.

I just don't know about Benfo. You may be right and I'm willing to cut it out entirely or reduce it to where you say. I'm also willing to raise it up to 1200. There are studies all over the place and the push seems to be for higher doses in more recent studies. At least it seems to be the case, no? What's the bases for you low dosing? I'm sure you have a good one. I'll be honest, I'm quite confused about whether it's working for me and how much I should take. I'm considering cutting it out and then seeing what happens too. Perhaps starting with B12 and D as you say in the supplements' thread. (I do recall getting a B12 test early on and hearing it's normal, but again, as you say, 'normal' may actually be low and doesn't mean much - I can try to get the number of that old test, I guess.) I mean, if the Benfo is not doing anything, with all the supplements on my list and future ones, perhaps I shouldn't spend the money. I should say I did start with 80, the went to 150, then 300, the 600. During this time I continued to improve, but again I took a number of other things and the diet was the biggest factor.

My thoughts were like yours here: I don't think I'm having any symptoms of hypo. In fact, in recent medical literature the move is toward diagnosing postprandial hypo only if there are concomitant symptoms. I do shake and sweat, but often after meals and closer to nighttime, which has been the case since my PN started months ago. So I think it's connected with my PN not eating or glucose - stress or anxiety can bring it on and most often it arises after meals too and as I'm going to bed, being the worst when I lie down. Earlier today, just a couple of hours ago, before eating lunch, and a few hours after breakfast, I recorder it at 84 and I was shaking.

Anyway, I do worry that there is a deeper cause, say something to do with my liver (a know cause in some cases, and I used to drink a lot) or the autoimmune condition I may have causing my PN. It's all a bit overwhelming and difficult to isolate right now, which is all the more reason why I appreciate your input. Perhaps I'll lower the Benfo and see if there's any change. This morning I added some Blue Ice cod liver oil, starting very low at 1.5 ml - I always start off very slowly.

Thanks again for sharing your knowledge. Now to go and read your posts on B12 and D. So much to absorb and synthesize!

A friend on another health group just sent this info. She takes Benfo and extra thiamine as her challenge is MS.

http://www.lifeextension.com/magazin...-sugar/page-01

I'm out of my Benfo so need to get a new supply. I take 150mg daily.

Thanks for this article. I read and followed up some the references last night. I also came across a PDF, but I can't post the link here, since I only have 5 posts on the forum. I'll post it eventually.

I still can't decide what to do, but am leaning to first upping my dosage from 600 to 900 mg and then, based on how that goes, moving down to 300 - I have 300 mg ones from Doctor's Best. I may even go off it entirely, or perhaps not. It all depends on how my body reacts.

At this point I'm trying to figure out what supplements to take for my SF PN. I will likely introduce 1mg of M. B12 too.

I forgot to mention, I'd very much appreciate any literature on the ill effects of Benfo, if anyone has anything. MrsD, I think you had said something in one of the threads, perhaps the supplements thread, about a study that indicated ill effects of high doses for the heart? Perhaps I'm remembering incorrectly, but if you have anything, I'd be thankful.

DavidHC,

My reply is in the context of your normal 1-hour post prandial and a low 2-hour glucose tolerance test result. I had a similar experience (82 and 65, respectively) in 2012. Back then, my pain was new and was aggressively pursuing tests after tests to find the cause of the nerve pain. Unfortunately, until now we could not find one. Anyway, I posted my result then here and Mrs.D mentioned about the reactive hypoglycemia. Having been aware of the reactive hypoglycemia (and fear for possible progression of the nerve damage) I totally changed my lifestyle to include diet, full array of supplements and exercise. Take note, there is nobody in my family who was and is diabetic, or even has a problem with sugar spikes. My Aic has been slowly creeping up until my recent Aic which I am now considered prediabetic, in spite of strict low carbs diet. In the course of time, I also developed other health issues that may or may not have been related to the sugar problem. As other health issues developed, I slowed down on my supplements. I stopped taking Benfotiamine. With the new diagnosis, I will resume taking it because of its benefit on stabilizing sugar. I haven't read any literature that states side effects of benfotiamine, except if you are allergic to it or its ingredients.
My preferred dosage as maintenance is 150mg....the 600 is too high for me.

One reason I don't recommend really high doses of anything, for long periods of time, is because of the concept of "vitamin dependency".

This is a state where your body adjusts to the really high doses in some fashion and when you suddenly discontinue, you will show signs of withdrawal. This was first seen in the Vit C users who took many grams a day. (Linus Pauling style). When suddenly they reduced back to RDA levels, they showed signs of scurvy.

Vitamin dependency also refers to people with some type of genetic error that requires them to take very high doses of a vitamin because they don't process that vitamin normally.
Pyridoxine (B6) is an example of that. Babies born with this error require high dose B6, for life....without it they have seizures. The older term for this was "infantile spasms).

So tapering off to lower doses of benfotiamine may be best.
I would not stop it now, until you see what happens on lower doses.

Idiopathic PN, thank you for your input on this. It’s helpful.

So my numbers were fasting and 2 hour glucose tolerance test, not 1 and 2. Did you mean as much? Mine was 81 fasting and then 63 2 hours after the glucose drink.

Of course, I’m not ruling out diabetes will develop. I can’t possibly know that. But I worry that there may be other causes of this. Of course, it may be nothing. I don’t know. I am, however, on a paleo diet, a trimmed down version of it in fact. If you don’t mind, I have some questions for you – it’s just so helpful to speak to someone – but no worries if you don’t want to answer.

I am also idiopathic as of now, I guess. They suspect autoimmune but perhaps it has something to do with this glucose issue. My suspicion is that it has everything to do with my poor gut health, and I’m working on that. But I also did drink quite a bit leading up to it.

Is the A1C accurate enough to diagnose? Did you repeat the glucose tolerance test?

I guess I’m wondering such things:

How is your PN and how did it develop? Perhaps how old were you when it developed?
What was your low carb diet like? Did you leave out fruits and all grains, even perhaps starchy veggies? Was it a paleo diet, so a ketogenic diet? What other health problems did you have, and why did they make you abandon your supplementation?

I suppose I’m just wondering whether in understanding your situation, I can see a way to help me understand my situation. Perhaps we have more in common and I could learn from you, given how recent my SF PN is. But again no need to share anything or anything you don’t want to. At this point I’m trying to learn and understand as much as possible. What you’ve already written is quite helpful though, so thank you.

MrsD, thank you. That reasoning makes good sense to me. It may not be the case and we can’t determine as much (like so much else in our bodies), but it makes sense as something that’s probable, and if so, something to be avoided.

Well, before I read your message, I upped my dose of Benfo to 900 today, taking another 300. I did want to try it out and just see if I can help along my symptoms, but perhaps I’ll taper down instead. I really don’t know. I just wonder if there’s some high therapeutic dose, say 1200 or 900, that will have a huge impact. I just don’t know. No one does. In fact, I don’t even know if Benfo is worth it. But the best long term course, I think, maybe just to go down to 300. I am trying other supplements now anyway and trying to heal my gut, so perhaps I should focus less on Befo and lower the dose just in case.

I guess I just wanted to see how it would be on higher doses and then on lower ones as you say, so the spectrum, otherwise I just wouldn’t know. But I’m inclined to move to a lower dose, and yes I do that slowly too.

Thanks again for the back and forth.

To really see if one is reactively hypoglycemic--
 

--a two hour glucose tolerance test with only glucose measurements is inadequate; the blood draws stop too soon and are too spaced out and one might miss the pattern of insulin release and its relationship to glucose levels, as they work by a mutual feedback mechanism.

if you can get the doctors to sign off (and you can certainly use some of the literature on pre-diabetes available through links on Neurotalk to buttress the argument), have them do a 4-5 hour glucose tolerance test with a baseline draw for both fasting glucose AND insulin levels before the drink and then draws every half hour for both glucose and insulin. Though I admit this is long and boring and makes one feel like a pin cushion, the fasting insulin level is an important number--one wants to know if one's "normal range" fasting glucose number is due to increased insulin production, due to tissue insulin resistance--and then one wants to see how much insulin is produced by the challenge. An overproduction of insulin to the modest glucose of the drink points to insulin resistance, the first stop towards diabetes, and if this overproduction is large enough one may well see a drop in glucose to hypoglycemic levels in the second to third hour; that may well cause the insulin production to "let up" and allow glucose levels to go back to more "normal" levels--but this is often missed if the draws are stopped too early, or if they are not done frequently enough.

Glenntaj,

You're, of course, right. That test and the new breakfast test are both far better indicators of hypoglycemia. I looked into this after my results. I see the neurologist in the next couple of weeks and I'll ask him what he thinks then. I would do it without hesitation, and be their pin cushion, but I don't want to break my diet and suffer the symptoms. Perhaps I will. Let's see what he thinks.

Thanks for you input!

MrsD,

BTW, I've decided to lower the Benfo dose to 300 every morning, since this morning I awoke and my chest hurt/felt tight and I had difficulty taking deep breaths. My heart felt weak. It's been feeling like this for a while, since I broke my diet for the glucose test, so I'm not saying it was the additional 300 mg of Benfo, but still just in case.

I wonder how often people with SFN experience heart symptoms as I do. Interestingly the strange sensations, including palpitations started a couple of years before the neuropathy broke out in my body, at least noticeably. A stress echo revealed nothing. But 2/2.5 years later and my heart still acts up at times. I worry, of course, including because when I rise up suddenly, I do get lightheaded, and that has been going on for a few years.

Thanks for your input again.

This is a great thread. I'll add my rambling thoughts.

I recommend getting a thyroid panel, if you haven't already. High/low blood sugar levels can impact thyroid and conversely low thyroid can cause high/low blood sugar levels.

Also - if you suspect autoimmune etiology of your SFN and poor gut health, there is an autoimmune version of the Paleo diet. I'm glad diet changes have been working for you.

A1C is not always a reliable marker in everyone. There is a variability for how long red blood cells live in different people. This might skew the A1C number, depending who you are. I think it makes sense to run multiple types of tests and to have them repeated, so all tests can be put into proper context. I think Glenn made a great point about the OGTT.

In terms of literature on Benfotiamine, all the studies done have been of a mediocre quality. This is true of many supplements. You will rarely see any multiple double-blind placebo controlled studies. Unlike studies run on pharmaceutical drugs, you won't see an accurate or lengthy collection of adverse events either.

What is even more difficult is assessing if any of the medical literature on any given supplement is relevant to neuropathy, because that is the angle that everyone on this message board has.

One study about Benfotiamine and neuropathy:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3329837/

It showed 300 mg of Benfo/day for 24 months had no impact on PN or inflammatory markers.

I don't have a lot of time today to search Pub Med or read the above study carefully. I can tell you from professional experience, don't just read the conclusions. Conclusions are often incorrect or over inflated. Read the methods and results - you will often find errors or see deficiencies with how the experiment is set up. The more you understand a given topic and start to read several studies, you will start to see flaws and deficiencies with how study conclusions are constructed.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3476903/

Here is a comment on the study posted above.

David, I have 2 friends with recent heart issues, afib. Both are involved with this Dr.'s info and one just started DRibose the other day...the other friend will re-try it soon she says. They don't deal with the nerve issues. I take DRibose daily and have a posting on the vit/supps area and there is another long DRibose post. I start to run out of steam about 2Pm or so and it's time for my DRibose "fix" in the V8 (high potassium).... Anyway.

http://www.drsinatra.com/best-heart-...s-to-consider/

Madisongrrl, thank you for your rambling thoughts. :) Much appreciated.

I've had the panel a couple of times so far, and nothing abnormal, but the last one was several months ago, so perhaps I'll redo that. For now, my physician wrote up a bunch of tests including for ferritin, D and B12. She's also doing some test for my heart. Tests, tests, and more tests!

I did do the ENA and it game back negative, twice now in fact and the second time in the last month. But that's just one imprecise test for autoimmune.

Thanks. It's funny you mention it, since that's what I'm at, well mostly. I am about to exclude all nuts and seeds too. I disagree with some of what Paleo Mom says, in particular fruits and starchy veggies, mostly because I'm treating myself for possible SIBO and Candida, but she has some excellent advice. Are you on such a diet yourself? The idea is to assume everything and just treat accordingly, and SIBO is quite possible. I like to think that if I heal my gut systematically, I have a 1-2 year plan, then I can send this into remission, but who really know? I'm certainly willing to try considering the stakes. I'm going to post something about diet, gut health and remission shortly; I've just had a busy few days. I'm curious about what people are doing/have done, and to what extent SFN remission is possible, perhaps some hopeful tales.

Thank you also for your thoughts and advice regarding Benfo and how to interpret the literature/studies. I certainly agree. In my line of work, we look to the evidence, whatever form it may take, and that includes the reasoning/arguments/methodology, etc. You can often conclude whatever you like based on how you formulate your arguments/structure your methodology. What you linked to was a great example of this. I try to read as many studies as I can and since the neuropathy I've begun to read medical journals and as much technical literature as I have time to read, among other things of course. For now, I'm down to 300 mg of Benfo at lunch time, that's it. MrsD and a desire to attempt something new made me take this path. Let's see what happens, if anything.

Thanks again!

Hi Caroline,

Thanks for the advice. I'm going to read this and to think about introducing some of these supplements. So your friends don't have neuropathy, just heart issues? I wonder if anyone else here has heart issues related to autonomic SFN. I need to look after my heart. I'm also going to exercise more rather than sit on my *** so much. Perhaps that will help with the heart and energy levels for me.

For what it's worth, I went back on 600 mg of Benfo, 300 at breakfast and 300 at dinner, since both 900 and 300 gave rise to strange and negative things/symptoms/reactions, etc., or so it seemed. It may be that 600 is my dose, it may just be correlation and not causation as is so often the case. But I think I'll stick with 600 for now, especially since it was the dose I took for the months during which I saw the best improvement.