Thiamine and low potassium

Discussion in 'Fibromyalgia Main Forum' started by mbofov, Mar 27, 2014.

  1. mbofov

    mbofov Active Member

    Well, I think I figured out my problem with thiamine. It was revving me up (I think boosting my thyroid) but making me tired and achy at the same time. This morning I was so tired and achy, very discouraged, and had decided to just stop the thiamine, and then I remembered how when I started taking folate in the form of metafolin, which I badly needed, it caused my potassium levels to tank, and caused severe fatigue. I knew about this potentiality because of posts by Freddd on the Phoenix Rising board. Because the folate started up processes and healing, it increased my need for potassium. If I hadn't known about this, I would have stopped the folate. As it was, because of Freddd's posts, I started taking potassium, titrating up to 1,000 mg. a day for several days or a week maybe, the horrible fatigue went away, and I felt a lot better and was able to continue taking the folate. I gradually reduced the potassium and have been taking 400 mg. a day as a maintenance dose.

    For one of Freddd's posts, see:

    So I think it quite likely that thiamine was doing the same thing as the folate in terms of potassium. This morning I took 400 mg. of potassium after breakfast and feel better already, will probably take up to 1,000 mg. today and for several days and will restart the thiamine, which I believe is very good for me.

    The RDA for potassium is around 2500 mg. and it's very hard to take too much unless one's kidneys don't work right.

  2. mbofov

    mbofov Active Member

    I took 1,000 mg. potassium yesterday and woke up feeling a lot better today, will take 800 today and probably stay at that dose for several days. I temporarily stopped the thiamine because I so tired, and think I will take 1/2 a dose (50 mg.) today.

  3. TigerLilea

    TigerLilea Active Member

    Mary, did you have blood work done to confirm that you need potassium? I can't see that taking a vitamin supplement for a day or two is going to suddenly cause a deficiency in another vitamin or mineral. Usually they take time to occur. I see so many people following Fredd over on PR and hanging on to his every word, but what are his qualifications? Is his information backed by science, or are these his opinions? It worries me that some people blindly follow people like Fredd without knowing if any of his recommendations are actually safe. o_O
  4. mbofov

    mbofov Active Member

    Hi TigerLilea - I did research on my own and read that when one is deficient in B12 or folate, or both, resulting in macrocytic anemia, and a person starts treatment for this - taking B12 and folate - it can cause a sudden increased need for potassium, which can cause a sudden drop in potassium levels. Freddd first alerted me to this possibility and then I did my own research. I had tried Rich Van K's methylation protocol off and on for over 3 years. It was always very difficult for me, I assumed it was causing detoxing or something so kept at it but had to keep stopping because I felt so crappy. And I then I read Freddd's posts on B12 protocol - very similar to Rich's but some differences (especially no folic acid - only folate), and I think most importantly, he wrote about the potassium issue. And it is very possible that the reason I could not tolerate Rich's protocol was because it was causing my potassium levels to tank without me being aware of what was going on.

    So when I tried Freddd's protocol, adding in folate in the form of Metafolin, my energy markedly picked up within a couple of days. It may be difficult for you to believe, but this is what happened within just a couple of days. It was great. I had already been taking B12 for years with no noticeable results but knew I needed it. My MCV (mean corpuscular volume) number was always near the top of the "normal" range for many years. A doctor finally told me that that could be an indication of a B12 deificency (which I knew I had trouble with - on hair analysis my B12 was always almost undetectable even though I took lots and even did shots). And then in my reading about it I found that high MCV could also be caused by a folate deficiency. So it makes perfect sense to me that starting to take metafolin could cause me to feel better rather quickly. If a person has typical anemia, if they start taking iron, they usually feel results pretty quickly. A large percentage of the population has difficulty converting folic acid, which is synthetic, into a form useable by the body - folate - and folic acid can actually cause a folate deficiency because it competes for absorption with folate.

    Once I had uncontrolled bleeding from my period. I literally lost half my blood in a couple of days, was white as a sheet. We finally got the bleeding stopped, and I had to start taking lots of iron - a severe deficiency in a mater off days, and, once starting the iron, started to feel better in a matter of days. So things can happen quickly.

    Now - re the potassium deficiency issue - if you do some research you will see that this is a real issue when treating macrocytic anemia. As to how potassium levels could drop so quickly, within a matter of days, I don't know the chemistry but I'm sure you've heard of athletes who over exert themselves in hot weather without replenishing electrolyes (which include potassium) and who can become depleted in potassium and other electrolytes very quickly - in 1 day. And can get in serious trouble if they don't replenish the electrolytes. It would seem that electrolyes are different than typical vitamins and minerals. I agree that in general it would seem abnormal to develop a vitamin or mineral deficiency within a matter of day, but again, elctrolytes are different.

    And finally, my own experience bears this out. Since I started taking metafolin some 3 or 4 years ago, I have just felt better overall. Of course I'm still taking the B12 too. Although this hasn't stopped my crashing. And I still take extra potassium - 400 mg. a day - my doctor knows about this and it's fine. But when I started the thiamine as I wrote above, it made me feel better and worse at the same time and I finally theorized that it might be doing the same thing to my potassium levels as the folate did. And when I increased my potassium yesterday, my energy picked up. When I first was taking potassium after starting the metafolin, I had to take 1000 mg. a day for about a week and then backed off to my 400 mg. maintenance dose. So I'm thinking I'll probably have to do something similar. I did a lot of reading about potassium before I started taking it - RDA is around 2400. It's extremely difficult to get too much taking it orally, if your kidneys work well. It's much more dangerous to have low potassium. Also, people with CFS tend to be low in potassium despite a good diet because one needs activity - exercise - to get potassium moving into and out of cells.

    I didn't follow Freddd's recommendations blindly. I tried them, and they worked. I've tried a mllion things. Some have helped, some haven't. If Freddd's didn't help me, I would have stopped.

  5. mbofov

    mbofov Active Member

    Tigerlilea - One more thing - the doctors I saw for years and years KNEW that my MCV number was high-normal, just about at the top of the range. They all knew I had energy problems. No one said a word about this, much less the folate issue. My one doctor who finally mentioned that the high MCV might be a problem only had me taking B12. He didn't say a word about folate. I stumbled across the folate issue by reading Freddd's posts (and then did more research on my own). So the regular scientifically-trained doctors had their best shot at me for years and years, and failed miserably. Freddd helped me very simply and quickly. I think this might be why he has so many people who listen to him, even though he's not an M.D.

  6. TigerLilea

    TigerLilea Active Member

    Hi, Mary, and thanks for your thought provoking reply. I find that interesting about the MCV because when I check my test results from over the years I can see that my number has always been at the high end of normal. I don't know if that means anything or not. I've never been told that this was a problem and it wasn't flagged by the lab either. I'll be seeing my doctor next week so I will talk to her about this is see what her thoughts are. My B-12, folate, and potassium levels have always come back in the mid-normal range.
  7. mbofov

    mbofov Active Member

    Hi Tigerlilea - I'm not surprised neither your doctor nor your lab ever mentioned your high-normal MCV. None of my doctors did either, except one, and even he didn't seem to be aware of the folate connection. He's the one who had me taking B12. Like I said, I stumbled across the folate info through Freddd and doing my own research on MCV. In my experience if a number is in the normal range, doctors just don't look at it.

    MCV stands for mean corpuscular volume. It refers to the size of the red blood cells and if there is a B12 or folate deficiency (and there can be other causes but I think these are the most common), the cells get larger in an attempt to compensate for missing nutrients. So the larger the MCV, the worse the macrocytic anemia.

    For what it's worth, my B12 blood test numbers were high, probably from all the B12 I've been taking. However, on a hair analysis, it's almost undetectable. I believe this means that I'm hardly using any of it. So I don't think the blood tests for B12 at least are that meaningful.

    I strongly urge you to do your own research regarding MCV and folate and B12, and look at some of Freddd's posts. He has a lot of good information. Here's a good starting point:

    Do some reading about folate vs. folic acid if you like. This article looks good:

    And I would urge you to give Freddd's protocol a try. It felt like a miracle when my energy picked up on day 2 or 3 after starting the folate (again, I was already taking methylcobalamin so did not need to add that in). I actually began to feel what I would call normal, for the first time in years. Unfortunately, I continue to crash when I over do but I at least can feel halfway decent when I'm not crashed. so I think you would know pretty quickly whether or not it was going to help you. It wouldn't take weeks to find out. I take two 800 mcg. of folate a day and 5,000 mcg. sublingual methylcobalamin, as well as my potassium. (and a bunch of other stuff too of course!)

    And my potassium levels were always in the normal range, although on the low side. But like I said, a couple of days after the energy boost from the folate (Solar metafolin), I felt like I'd hit a wall, or, more accurately, like a wall had hit me :) And the interesting thing was, this feeling was familiar - I'd had it before. It wasn't a crash. I never knew what it was, just some weird CFS symptom I thought. So looking back I realized that I had experienced low potassium before - it feels like crap (and of course too low is dangerous). And it's quite possible that it had been due to taking Rich's supplements, only I didn't know anything about the folate-B12-potassium connection back then.

    Rich did eventually attach a caveat to his protocol talking about potassium, but he didn't emphasize it and it was not part of his protocol for several years.

    So now the thiamine seems to be giving me another boost. It's supposed to help utilize magnesium and ATP production. And I seem to have the same potassium issue but at least I know what to do now. And the potassium is helping, a lot.

    Take care -

  8. TigerLilea

    TigerLilea Active Member

    Thank you, Mary! :) I'm going to make a cup of tea and then settle down with my keyboard and do some research. I'm also going to make up a list of questions to ask my doctor on Wednesday. I swear the more I learn, the more confused I am about what I should be taking for CFS!! :confused: And this is usually when I end up stopping taking anything.
  9. TigerLilea

    TigerLilea Active Member

    Fredd recommends holding sublingual B12 in your mouth for a minimum of 45 minutes, however, mine has totally dissolved within 2 minutes.
  10. mbofov

    mbofov Active Member

    Yeah, mine dissolves in about 2 minutes too. I also take the dibencozide (another form of B12) that he recommends. I don't know how important it is, but I know it's not hurting me.
  11. TigerLilea

    TigerLilea Active Member

    Hi Mary - I talked to my doctor today about my MCV levels and she said that they are perfectly normal even at the high end of normal and there is no indication that I have any problem with my red blood cells or with B12 or folate levels. :)
  12. mbofov

    mbofov Active Member

    Hi Tigerlilea - well, I'm not at all surprised about what your doctor said. All I can do is state my own experience. Most of my doctors over many years saw nothing wrong with my high-normal MCV. Then one doctor mentioned it might be a problem, I tried Freddd's protocol, and I am eternally grateful that I did. I can't overstate how much better I felt once I started taking folate (metafolin trade name) with the extra potassium in addition to methylcobalamin. But no doctor told me to do this (take the folate and potassium). I had to try it on my own. But I am extremely grateful that Freddd took the time to share his experience and knowledge. I would be much worse off if he hadn't done so.

    I've gotten more benefit out of others' experiences on this and other boards than I have from any MDs. I think that's why we're all here - we need more help than we're getting from our doctors. If my doctors had been able to solve my energy problems and the mystery of CFS, I wouldn't be here. So I keep trying different things and sometimes they work and sometimes they don't, and I do my own research and I'm careful about what I do. I have made some progress too. Sometimes I feel like giving up, but then something new comes along and I keep hoping the mystery will be solved.

    I wish you the best -

  13. TigerLilea

    TigerLilea Active Member

    Don't worry, Mary, I'm still going to follow the different protocols that I read about here and on PR until I find something that helps me with the fatigue and PEM. All that my doctor meant was that the size and shape of my red blood cells aren't sending up any red flags. I got my test results last night and everything came back normal. My B12 levels are at the very high end of normal. It does say though on the test results that "Clinically significant B12 deficiency may occur with B12 levels in the normal range, particularly in elderly patients". I am going to continue taking 5 mg of methyl B12 several times per week.

    I haven't felt great for the past few weeks and at times feel almost like I have mono again. My doctor says that it is possible that I have a dormant viral infection that is flaring up every once in a while as I get like this at least once a year, if not several times throughout the year. She didn't expect anything to show up on tests (which it didn't) but that it is very possible to have something going on in the background that is enough to make me feel unwell but not enough to show up on tests. I've been reading about high dose Vitamin C for infections so I'm taking 1,000 mg every hour until bowel tolerance and see if that helps at all. If that doesn't work then I will increase it another 500 mg and go from there.
  14. mbofov

    mbofov Active Member

    Hi Tigerlilea - my doctor would likely disagree with your doctor about whether the size of your red blood cells (your MCV value) is a problem or not. MCV measures the size of red blood cells, and the larger the number, the larger the size of the cells. The larger the size of the cells, the more likely there is to be a problem with macrycytic anemia, generally associated with B12 and folate deficiencies. So a red blood cell which ranges near the top of the normal range is a larger cell than one in the middle of the normal range. The top of the normal range on tests I've seen is usually in the high 90's or 100 or so. My number was 96, 97, 98, thereabouts for several years, and even though it was "normal", the folate made a huge difference. And it was this number which raised a red flag for one of my doctors. So despite what your doctor says, and despite the fact that your MCV is in the normal range, you still might have a folate deficiency. And I'm concentrating on folate because I already was taking a lot of B12 and it was the folate which kicked up my energy. Or you might be just fine. But I wouldn't rule out the possibility of a folate deficiency. It's simple and inexpensive to find out.

    Good luck with the vitamin C, I hope it helps you. I've done that before, taken lots of C. It's helped me some, though not as much as I wished it had.

    One more thing you might check out is eating foods high in potassium. I think I had a problem with low potassium for quite awhile - not low enough to cause serious problems, but low enough to make me feel draggy. My numbers on blood work were normal, though on the bottom half of the normal range. Anyways, I've written about potassium before. And it wasn't until I took the folate that I finally realized that some of my earlier symptoms had been due to low potassium. And just ignore this suggestion if you like, it's just something I thought of. :)

    Good luck!

  15. TigerLilea

    TigerLilea Active Member

    Mary, it occurred to me recently that I don't eat a lot of foods that are high in potassium anymore. I used to drink orange juice and have a banana every morning and ate potatoes most days. I very rarely have any of those foods anymore as I was reading that fructose and white foods weren't considered healthy. I made the decision a few weeks ago to go back to how I used to eat as I swear I felt a lot better before trying to eat "healthy".

    My latest MCV is 95. It's been 96 for the past 10 years approximately. My B-Com has 800 mcg of folate (as Folic Acid). I read differing opinions as to whether folic acid is as good as folate. I don't know if it was here or elsewhere that I read that in the US they can no longer list "folate" but must use the term "folic acid" so a person will have no way of knowing which form they are using.
  16. mbofov

    mbofov Active Member

    Interesting about the potassium foods - that might be part of the problem for you. I take a potassium supplement. I'm so damn sedentary due to CFS my blood sugar is borderline high - in the normal range but near the top so I'm very leery of things with sugar in them (like OJ etc.) I'm really careful about what I eat but it doesn't lower my blood sugar so I just take potassium capsules (400 mg. a day - my doctor knows this) and I haven't had symptoms of low potassium since (except I think the B1 caused it to drop)

    A large percentage of the population cannot convert folic acid (which is synthetic) into a form useable by the body. I think I'm one of those people. And again, folic acid can actually cause a folate deficiency as it competes for absorption with folate. So your number is up there. I think it's worth an experiment with folate. I'd try it if were you (I did try it!)

    The FDA (Food and Drug Administration) is considering new rules which would ban the use of the word "folate" on supplements, thus forcing supplements makers to use folic acid instead of folate. It's completely insane! These proposed new regs were submitted by a drug company (who else! they are truly evil sometimes) who want exclusive right to use folate in their product. arggg! Hopefully the rules will not get passed.

  17. TigerLilea

    TigerLilea Active Member

    Mary, I just read the FDA's new recommendations and the way I am interpreting it is that the term "folic acid" will only be allowed on supplements, not on food items. It doesn't say anywhere that supplements can't use the term "folate". I think that people are misinterpreting what is being said.

    This is from the Federal Register:

    >>Consistent with the proposed amendments related to the units of measure for folate that take into account the differences between folate and folic acid, we are reconsidering appropriate terms for declaration of folate content in foods and dietary supplements. We are proposing to (1) eliminate the synonym “folacin” specified in §§ 101.9(c)(8)(v) and 101.36(b)(2)(B)(2); (2) require, in proposed § 101.9(c)(8)(vii), that the term “folate” be used in the labeling of conventional foods that contain either folate only or a mixture of folate and folic acid; and (3) require that the term “folic acid” be used in the labeling of dietary supplements only. As proposed, conventional foods would not be permitted to use the term “folic acid.”<<
  18. mbofov

    mbofov Active Member

    The wording is very ambiguous where it says: "(3) require that the term “folic acid” be used in the labeling of dietary supplements only." Is it saying that only dietary supplements can use the term folic acid (meaning that they can also use the term folate when appropriate), or that dietary supplements can only use the term folic acid (and not use the term folate at all). It's crucial where you put that little word "only" and there's evidence that drug companies may have an interest in how this plays out.

    If dietary supplements can only use the word folic acid, then it effectively bans them from selling folate.

    But you could be right - hopefully it is just a matter of extremely awkward wording- thanks for pointing this out - I hadn't read the actual language before -