B1 induced deficiency

[telochian]

Hi all

Over on Freddd's reefeeding syndrome thread, Mary, Anna Dove, @Freddd and myself have been discussing the role of thiamine in all this, which led me to do some more research and I was hoping for some help to connect the dots.

This all started when I had the great idea of trying to use seperate b vitamins instead of a b complex as I noticed that at times, taking extra b complex sublinguals (source naturals) had a beneficial effect on the strange numbness I had been experiencing since my accidental methylation kickstart. There was only a few things in those tablets that I wasn't taking in isolation anyhow and I eventually realised that it had to be b1 or b2. So like an idiot I ordered a bottle of Enzymatic therapies Riboflavin (400mg) and Doctors Best Benfotiamine (300mg) and much like the outcome of Freddd's adventures into b1 and b2 taken additionally to the other Deadlock Quartet supplements, I gave myself a crash course in insatiable hypokalemia. I did however have the two best days I have had in a very long time before that, no neuropathy, great energy, mental clarity etc etc. Since that bout of hypokalemia, I've had constant numbness in my feet and hands, intermittent numbness around my ankles and knees, blood sugar spikes and drops and of course, very unpredictable potassium needs. That is until a few days ago when I decided to give b1 and b2 another chance, albeit at vastly reduced dosages (10mg titrating up) and just like that, the numbness reduced significantly and all other symptoms also improved.

I started looking around at studies on thiamine and potential malabsorption and deficiencies and came across this which made for some very interesting reading;

http://www.hindawi.com/journals/ecam/2006/349513/abs/

It seems that thiamine deficiency is heavily exacerbated by high carb diets (simple sugars etc). At the time when all hell broke loose, I was taking large amounts (upwards of 5 grams) per day of potassium gluconate (which I don't think contains carbs) but I was also getting strange blood sugar fluctuations and was taking a few glucose tablets (only a couple per day). I know potassium has links to blood sugar levels and I am now wondering whether this process of adding larger amounts of potassium may contribute to thiamine deficiency/early beriberi symptoms.

I think adding the large dose of b2 ramped up methylation as was noted by Freddd in this thread;

http://forums.phoenixrising.me/inde...kalemia-and-methylfolate-insufficiency.22968/

That in turn caused hypokalemia which led me to down boatloads of potassium gluconate which somehow drained me of thiamine. I was still taking a b complex at the time which contains 13mg of thiamin but didn't have an effect on the symptoms and according to the .pdf referenced earlier, much like what we know of b12 and folate, it can take much greater dosages to reverse such a deficiency.

I'm now trialling a combination of benfotiamine and sulbutiamine and so far I feel great, no numbness to speak of, stable blood sugar, great energy and focus........hope it lasts, until something else needs feeding.

Any theories?

 

[helen1]

Interesting work @telochian.
So let's see if I've understood you...

Sugar and carbs can deplete thiamine.
Supplementing potassium can also deplete thiamine.
Repleting thiamine can cause neuropathy.
Titrating thiamine up slowly can rebalance it all.

Is it a minefield out there or what...

 

[Mary]

@telochian - as @helen1 said so well, it IS a minefield out there!

A few comments: I read that actually low potassium is associated with blood sugar/diabetes problems. It is difficult to get too much potassium orally, unless one's kidneys are malfunctioning. So I doubt if the high dose potassium you were taking was the cause of your blood sugar fluctuations. Having said that, it might be good to try something like low-sodium V8, which has 900 mg. potassium per 8 oz. glass (or another food source), and cut your potassium gluconate supplement a little. I take a combination of both potassium gluconate (1000 mg. in divided doses) and a glass of low-sodium V8 a day (low sodium V8 has 900 mg. potassium vs. I think 500 mg. in regular V8)

Thiamine does have a lot to do with blood sugar regulation, and as you found out (!), everything affects everything else - it's possible the high dose B2 somehow depleted the thiamine, thus affecting your blood sugar - I'm just guessing here but it's a possibility.

I am really glad to hear that low doses of B1 and B2 seem to be restoring your well-being!

I'm having a different (but probably related) problem. B1 really does help my energy, but after a couple of days I got jittery and wired but not more energy and then got achy and tired, and after reading about refeeding on Freddd's post you mentioned, I theorized my phosphorus was being depleted and started drinking kefir (high in phosphorus) and boom - energy came back.

But then I crashed as usual when I did too much, but the crash was different than usual, better and worse at the same time, and I began to wonder if the B1 was depleting B2. I've tried taking B2 in the past and it always made me feel horrible, tired and just awful, but now am wondering if it was because I was low in B1 and maybe the B2 was depleting what little B1 I had. so now I'm going to try adding a small dose of B2 into the mix, as well as keep on drinking the kefir and taking my potassium and the B1, and see how it all falls out. I do take a low dose B complex.

Keep us posted how it goes for you --

 

[telochian]

Hi @helen1 , @Mary

You pretty much hit it on the head @helen1 , the biggest speculation is the involvement of potassium, it's hard to figure out whether it was because I had too much or not enough or wasn't absorbing it properly for some reason.
It certainly had nothing to do with sodium or magnesium, I've been supplementing plenty of those. I was taking upwards of 5 grams a day of potassium gluconate as well as food sources and around 1 litre of coconut water per day which should be good for 2000 mg or so of potassium. It's hard to imagine I wasn't getting enough, but that may have been the case. I'll definitely try the v8 juice.

For the last 3 days I have been taking 30mg of benfotiamine and 30mg of riboflavin every 4-5 hours and I too had a minor crash and got sore and achy. My histamine levels, which have been all over the place, ramped up as well which for me is usually a sign that I need more folate. After doubling my folate dose the tired, achy feeling slowly subsided and my histamine levels dropped somewhat. Perhaps added b1 causes low folate symptoms while the added b2 was the culprit in crazy hypokalemia? I think the b2 to b1 ratio is very important, I seem to only need a fraction of b2. At this stage it looks like 30mg or less per day and as much as 200mg or more of b1.

There is some very interesting information in that aforementioned .pdf, I only wish I could understand some more of the scientific language therein. Thiamine deficiency has been linked to a range of different conditions, from the obvious beriberi symptoms (polyneuropathy, cardiomyopathy) to SIDS, sleep apnea and a range of neurological disorders. There are even some anecdotal reports of thiamine dependency, some people needing as much as 7 grams a day. It is mostly associated with developing countries and malnutrition but interestingly, it's on the increase in the west;

"Modern Western diet, particularly in children and adolescents, is loaded with simple carbohydrates. In our own clinical experience vitamin deficiency is undoubtedly extremely widespread and thiamine figures very high in this deficiency because of its biochemical association with glucose metabolism"

"Physiological doses have no effect since the enzyme/cofactor bonding appears to be damaged or partially atrophied. Thus, physicians often become disenchanted when they treat a patient with low-dose supplementation and see no benefit. The RDA of thiamine is 1–1.5 mg per day, but only in a biochemically healthy individual, and many physicians are under the impression that this kind of vitamin deficiency, if it occurs at all, is easily and quickly treated. As in the association recorded in this review in the treatment of beriberi, it took very large doses of thiamine for months"

I'll continue traversing the minefield.

 

[dannybex]

Interesting work @telochian.
So let's see if I've understood you...

Sugar and carbs can deplete thiamine.
Supplementing potassium can also deplete thiamine.
Repleting thiamine can cause neuropathy.
Titrating thiamine up slowly can rebalance it all.

Is it a minefield out there or what...

http://charles_w.tripod.com/kandthiamin.html

Charles Weber hypothesizes that thiamine and potassium must be very carefully balanced, along with magnesium.

 

[Mary]

@telochian - how can you tell your histamine levels were all over the place?

Yes, thiamine is involved in so many processes. I know PEM is not lactic acidosis but it does involve abnormal lactic acid production and so when I read that thiamine can resolve lactic acidosis, I decided to try some thiamine to see what happened, and was very surprised when it increased my energy so markedly - and then of course had all the other problems which I'm trying to sort out --

I read that the word beri beri (severe thiamine deficiency) means "I can't, I can't", an apt description of CFS/ME if I ever heard one!

 

[telochian]

Awesome find @dannybex, I need to read that very carefully but from a quick skim it seems to support my theory of potassium being a significant factor.

I get very dry skin and hands (very hard cuticles and sharp nails) when my histamine levels elevate (I assume it's histamine), dry sore eyes and a subtle urticaria sort of neuropathy (feels like sunburn) all over my skin but curiously no rash, which of course makes any doctor I mention it to think I'm crazy. Ramping up methylation quickly solves the problem, a little extra folate and b12 and it's gone again. It comes and goes very quickly.

 

[telochian]

That Charles Weber article is very informative and scary at the same time. I'm glad I caught this pretty early on and am responding to treatment. I upped my benfotiamine dosage today and am definitely a little tired and achy, some extra folate helped but I'm thinking more isn't a good thing in this case. Gradual b1 resaturation is what I'm thinking, wish my nature wasn't so reactive...."I feel this way, I'd better take this".

One observation since adding b1 back in is that when I take potassium, it feels different. Before this, I would take potassium and get very tired in the legs and somewhat unstable, now I don't get that same feeling. It's almost like the reverse, I feel better and more stable once adding potassium. This also ties in with some of Weber's theories. I think I was pretty low in thiamine to begin with, before kick starting methylation. I was on methotrexate (chemo drug which inhibits folate) for 8 years, I'm c677t heterozygous and the methotrexate clearly tanked my folate levels and started a cascade of deficiencies. To make matters worse, it's mandatory (in Australia) for anyone taking methotrexate to supplement with folic acid.

I'd say I was pretty low on thiamine before I started methylation and the potassium draw from methylation therapy just pushed me over the edge. This all fits in with @Freddd and his refeeding concept as well, this could be my copper.

I really should go see a doctor, try and get some potassium and thiamine tests, I'm just so disillusioned with the whole system. They will look at me blankly when I explain this and then proceed to tell me that none of this is real in the most arrogant way possible. I hear there is one doctor in my area that understands methylation, but he's not accepting new patients.

 

[Gondwanaland]

I was taking large amounts (upwards of 5 grams) per day of potassium gluconate (which I don't think contains carbs) but I was also getting strange blood sugar fluctuations and was taking a few glucose tablets

The answer is in the question...

And yes, IMHO methylation supplements are all about insulin resistance. There are easier (and less expensive) ways of reverting this condition.

There are a number of interesting threads about thiamine around here. One of them is this
http://forums.phoenixrising.me/index.php?threads/is-folate-inhibiting-thiamine-b-1.23392/

 

[telochian]

The answer is in the question...

And yes, IMHO methylation supplements are all about insulin resistance. There are easier (and less expensive) ways of reverting this condition.

There are a number of interesting thread about thiammine around here. One of them is this
http://forums.phoenixrising.me/index.php?threads/is-folate-inhibiting-thiamine-b-1.23392/

Wow, great thread, I wish I had of found it earlier. It seems that the key to this is balancing folate, potassium and thiamine........to begin with.

Given that you and the others involved on that thread have some perspective, how would you go about treating this and finding the folate/b1/potassium balance?

Thanks @Gondwanaland

 

[Gondwanaland]

Given that you and the others involved on that thread have some perspective, how would you go about treating this and finding the folate/b1/potassium balance?

It is very personal, I am under the impression that the people who have insulin resistance react better to the supplements. I don't have IR.

BTW there are many other great threads about thiamine.

 

[telochian]

The answer is in the question...

Indeed it is, as @Gondwanaland alluded to, this problem starts and ends with potassium gluconate. Even though it doesn't contain carbs (glucose), it still inhibits thiamine in the same way as sugar does.

So you get stuck in a viscious cycle, taking methylation supps drains potassium, you supplement with potassium gluconate which inhibits thiamine absorption and your thiamine levels slowly but surely drain away. I have been taking Benfotiamine, which has a very distinct smell, not as bad as sulbutiamine but unmistakable, like mouldy paint. Now that I know how this works (famous last words) I can literally smell benfotiamine being flushed down the toilet if I take potassium gluconate before hand.

This was why I would feel great after taking thiamine......for a few hours, then I needed to re dose, somewhere in between I took potassium gluconate and dumped my thiamine dose in the toilet.

I'll be taking potassium chloride from now on. Interestingly, I took somewhere around 500mg of benfotiamine today and I haven't got that tired, achy feeling that @Mary also observed and I haven't taken much folate at all (800 mcg). Maybe the process of adding thiamine and then robbing your body of it with potassium gluconate causes this.

 

[Mary]

@telochian - Why do you say that potassium gluconate inhibits thiamine? I can't find any reference which states this. An article you linked (http://charles_w.tripod.com/kandthiamin.html) states that in a case of thiamine deficiency, it can be dangerous to add in potassium without supplementing thiamine, but it doesn't state that potassium (or potassium gluconate in particular) causes a thiamine deficiency.

I did a search for potassium gluconate and blood sugar and couldn't find anything which indicated that potassium gluconate (despite its name) affected blood sugar levels and actually found the opposite. So if you or @Gondwanaland have a reference for this, I'd appreciate it, as it's potentially very important information.

But @telochian - I'm really glad to hear you're doing better. I still think for me at least my phosphorus was being depleted (see refeeding post and reference to hypophosphataemia) as the tired achiness went away after drinking kefir.

But if you're right about potassium gluconate inhibiting thiamine, it's really important information. Thanks!

 

[dannybex]

This is just a guess, but If anything I would guess that potassium gluconate may deplete thiamine, rather than 'inhibit' it., but again, that's just a guess.

 

[Mary]

This is just a guess, but If anything I would guess that potassium gluconate may deplete thiamine, rather than 'inhibit' it., but again, that's just a guess.

Why would you guess that potassium gluconate might deplete thiamine? I can't find any reference to this. I know that the word "gluconate" means sugar, but from my reading, potassium gluconate does not affect blood sugar, despite its name. I'm sure that sugar itself would deplete or inhibit thiamine, but I've seen no evidence that this is true of potassium gluconate, and actually have found the opposite in my reading.

 

[telochian]

Apologies if I spoke as if this is a matter of fact.

I'm not sure of the mechanism by which glucose depletes thiamine, I'll do some research into it and try to understand it but from what I have read it's pretty widely accepted. I would doubt that I can find evidence of the same mechanism being enabled by potassium gluconate but again I'll try.

This isn't the first time @dannybex or @Gondwanaland have theorized about this problem;

http://forums.phoenixrising.me/inde...fter-supplementing-potassium-gluconate.35077/

Any further supporting evidence guys?

All I can tell you for sure is what I have observed, I'm not sure if thiamine has a distinct smell as benfotiamine does but if I take potassium gluconate and then dose benfotiamine, it's pushed out through the kidneys/urine, a very obvious moldy paint type of smell. Anyone that has taken sulbutiamine knows what I am talking about, I remember it being described as "chipped paint off the walls of a mental asylum". I switched to potassium chloride yesterday and my neuropathy is 100% gone, no mouldy paint smell. I'm unsure of the correct terminology for this, "inhibit" or "deplete", all I know (there's that word again) is that it shunts benfotiamine straight to the kidneys.

 

[dannybex]

Why would you guess that potassium gluconate might deplete thiamine? I can't find any reference to this. I know that the word "gluconate" means sugar, but from my reading, potassium gluconate does not affect blood sugar, despite its name. I'm sure that sugar itself would deplete or inhibit thiamine, but I've seen no evidence that this is true of potassium gluconate, and actually have found the opposite in my reading.

My point is that the gluconate part of the potassium gluconate may -- emphasize 'may' -- require thiamine to be metabolized, just like other forms of glucose.

 

[dannybex]

Apologies if I spoke as if this is a matter of fact.

I'm not sure of the mechanism by which glucose depletes thiamine, I'll do some research into it and try to understand it but from what I have read it's pretty widely accepted. I would doubt that I can find evidence of the same mechanism being enabled by potassium gluconate but again I'll try.

This isn't the first time @dannybex or @Gondwanaland have theorized about this problem;

http://forums.phoenixrising.me/inde...fter-supplementing-potassium-gluconate.35077/

Any further supporting evidence guys?

It's not really a theory, it's a fact (see below for just one study). Thiamine is required to metabolize glucose or any form of carbohydrate, and so if one consumes excess carbs/sugars, then thiamine can be used up or 'depleted' if one isn't getting enough thiamine. It's depleted and/or wasted in diabetes, a disease of sugar metabolism.

Also, there are many things that interfere with thiamine in the gut -- many foods, compounds, etc., as noted on other pages. So one might take thiamine and it could be blocked by compounds that contain thiaminase, etc.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1375232/

"Thiamine plays a vital role in metabolism of glucose. Thus, emphasis is placed on the fact that ingestion of excessive simple carbohydrates automatically increases the need for this vitamin."

 

[Mary]

Thanks @dannybex - it seems that should be true, but I don't think it is, from the little research I did. I was hoping someone could provide me with a reference showing that potassium gluconate would adversely affect blood sugar levels.

Here's a link to a PubMed study which shows that zinc gluconate tablets do not affect blood sugar. http://www.ncbi.nlm.nih.gov/pubmed/11441324

There's a Wikipedia article about gluconic acid, which says it forms the gluconate ion, it gets rather technical, and then an electrolyte - despite the name, it does not seem to be a sugar: https://en.wikipedia.org/wiki/Gluconic_acid

But if someone has information to the contrary, I'd like to see it. I take a lot of potassium gluconate and have for several years and it has not affected my blood sugar levels.

 

[telochian]

But @telochian - I'm really glad to hear you're doing better. I still think for me at least my phosphorus was being depleted (see refeeding post and reference to hypophosphataemia) as the tired achiness went away after drinking kefir.

I wouldn't doubt that in your case and possibly mine and many others that phosphorus is a factor, I'll continue to monitor my benfotiamine dosage and see if that tired, achy feeling comes back.

I'm not saying that you shouldn't use potassium gluconate, once thiamine levels are restored I would think that 1 gram or so of potassium gluconate per day would take a very long time to deplete it again. I think in my case there was a number of contributing factors, massive overmethylation from excessive b2 which led to large amounts of potassium gluconate being consumed which very quickly depleted thiamine that was already probably pretty low.

However, if you are getting a positive reaction from thiamine, it's likely that your on the low side.