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.

--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!