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Old 11-23-2015, 11:21 PM #1
DavidHC DavidHC is offline
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Default 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
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Old 11-24-2015, 08:47 AM #2
Patrick Winter Patrick Winter is offline
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Quote:
Originally Posted by DavidHC View Post
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.
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Diagnosis: Idiopathic Small Fiber Neuropathy (Statin Induced)




• R-Lipoic Acid: 100mg - 300mg Daily
• Acetyl-L Carnitine: 1500mg Daily
• Vitamin B12: 1000 mcg Daily
• Magnesium 500mg Daily
• Grape Seed Extract 200mg Daily
• Benfotiamine 300mg daily

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Old 11-24-2015, 12:54 PM #3
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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!




Quote:
Originally Posted by Patrick Winter View Post
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.
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Old 11-24-2015, 01:54 PM #4
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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.
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Old 11-24-2015, 02:09 PM #5
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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.
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Old 11-24-2015, 03:57 PM #6
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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!


Quote:
Originally Posted by mrsD View Post
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.
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Old 11-24-2015, 05:43 PM #7
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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.
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Old 11-25-2015, 02:13 PM #8
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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.
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Old 11-25-2015, 04:45 PM #9
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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.
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Old 11-25-2015, 05:02 PM #10
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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.
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