Managing Potassium Deficiency - Share your experience

[linusbert]

Thank you. You know a lot. Do you have a medical background? I know you are right about the arm thing. Thankfully the blood draw lady this morning knew this, and didn't use a band around my arm.

just following this board. lots of good information here.

even RBC might not be reflective for intra cellular levels. nutritional status is complicated. but its another "clue" what the internals might be.

But if even my RBC potassium isn't low, I'm going to have to consider whether this is just a side effect of the shot or low folate or iron or ??? I can't take especially high doses of potassium without seeing real numbers indicating a need.

i believe that in our chronic sickness state there is a narrow band between hyper- and hypo. switching between states therefore both can be true at the same time.
its like diabetes, too much sugar in blood, too less in the cells. the cells have receptors for everything. its known even in medical literature that a (for example) chronic hypo sodium condition cannot be fixed with sudden high shots of sodium which could be deadly. because the cells adapted to low sodium contents and when a high flow of sodium comes in, it completely overflows. the cells need to adapt to sufficient state again.
i think this principle applies for many things in the body.

 

[TinaT]

always have all electrolutes, sodium, chlorid, mg, pot, phosphor, calcium drawn together. all are cheap and required to see the complete picture of electrolyte balance.
also when they draw potassium, it must be quick, they shouldnt apply much pressure and some even say not to put a stanch on the arm... as pressure and trauma can make the tissue release potassium and therefore invalidating the results. usually the potassium would be high in blood then.
in your case i also would get
- Transketolase in Erythrozytes for B1 status
- vitamin D

Also I've still been thinking about your glucose suggestion. I looked at the symptoms and some overlap, but many don't. However... Since the shots... I've been drinking C water all day and some of the night. That has been one drastic change to my diet.

just following this board. lots of good information here.

even RBC might not be reflective for intra cellular levels. nutritional status is complicated. but its another "clue" what the internals might be.



i believe that in our chronic sickness state there is a narrow band between hyper- and hypo. switching between states therefore both can be true at the same time.
its like diabetes, too much sugar in blood, too less in the cells. the cells have receptors for everything. its known even in medical literature that a (for example) chronic hypo sodium condition cannot be fixed with sudden high shots of sodium which could be deadly. because the cells adapted to low sodium contents and when a high flow of sodium comes in, it completely overflows. the cells need to adapt to sufficient state again.
i think this principle applies for many things in the body.

I actually read an article by an MD saying that if you have really low potassium, then your cells can't absorb potassium, and then you would get high potassium. That's really friggin scary bc that means, from my reading, if things get too bad, there are no easy answers.

So I think you're right in certain scenarios. I'm just trying to review the symptoms of both often, and behave accordingly.

But man I absolutely must stop drinking coconut water. I probably had 8 servings yesterday. No one can or should drink that many calories. That's totally unsustainable at my age and given reduced activity levels.

Today I've been searching for a low calorie, non acidic electrolyte mix. I'm too nervous to take straight potassium. I just finished reading a long reddit post and comments about potassium. Several medical professionals including heart doc, a few nurses, an EMT, and a pharmacist... All warning that they've seen high potassium cause heart attacks and other dangerous heart conditions. This is f ing scary.

 

[linusbert]

I actually read an article by an MD saying that if you have really low potassium, then your cells can't absorb potassium, and then you would get high potassium. That's really friggin scary bc that means, from my reading, if things get too bad, there are no easy answers.

that is exactly the reality many here are facing. the longer the sickness, the harder and more complicated it gets.
thats why some take even just grains of a thing.. or just the end of a toothpick.

if you can drink 8 servings which i believe are 2 litres? ...of coconut water, than your body absolutely does not have problems with getting rid of potassium!
(no medical advice)
i would not swallow a capsule , but open capsules and put them in a glass of water. or even get a potassium powder.
i have caps, i open them and just make them in whatever i drink.. just a bit.
sometimes i sprinkle the capsule contents over my food like salt.

All warning that they've seen high potassium cause heart attacks and other dangerous heart conditions. This is f ing scary.

there are only 3 dangers of potassium i am aware off:
1. kidney not working properly -> ... you drink liters of coconut water, i hardly believe this is your case!
2. potassium CAPSULE disolving in one narrow space in your guts or stomach and damaging the lining. -> dont swallow caps, drink the powder instead in a glas of water.
3. taking in a thiamin deficient state lots of potassium, this can damage the heart.. -> take thiamin with your potassium and also put some sodium into your potassium.

But man I absolutely must stop drinking coconut water. I probably had 8 servings yesterday. No one can or should drink that many calories. That's totally unsustainable at my age and given reduced activity levels.

my coconut water has like 2,5g of sugar per 100ml... makes 50g sugar for 2 liters... though i only drink like 330ml a day at max. i btw get the same potassium side effects from coconut water as i do from capsules disolved in water.

 

[TinaT]

that is exactly the reality many here are facing. the longer the sickness, the harder and more complicated it gets.
thats why some take even just grains of a thing.. or just the end of a toothpick.

if you can drink 8 servings which i believe are 2 litres? ...of coconut water, than your body absolutely does not have problems with getting rid of potassium!
(no medical advice)
i would not swallow a capsule , but open capsules and put them in a glass of water. or even get a potassium powder.
i have caps, i open them and just make them in whatever i drink.. just a bit.
sometimes i sprinkle the capsule contents over my food like salt.


there are only 3 dangers of potassium i am aware off:
1. kidney not working properly -> ... you drink liters of coconut water, i hardly believe this is your case!
2. potassium CAPSULE disolving in one narrow space in your guts or stomach and damaging the lining. -> dont swallow caps, drink the powder instead in a glas of water.
3. taking in a thiamin deficient state lots of potassium, this can damage the heart.. -> take thiamin with your potassium and also put some sodium into your potassium.



my coconut water has like 2,5g of sugar per 100ml... makes 50g sugar for 2 liters... though i only drink like 330ml a day at max. i btw get the same potassium side effects from coconut water as i do from capsules disolved in water.

My concerns are:

-- coconut water safer bc it's a mix, not just straight potassium. It has phosphorus, calcium (added from aqua source), and a little magnesium.

--in addition to the C water, yesterday I took 350 mg total of potassium, basically when symptoms started bothering me, I took 100 (50 overnight, which didn't help as much as the combination of coconut water plus the added potassium). I did that 3 times yesterday. That was still a mix bc it was trace minerals, "potassium" blend. So it has sodium, magnesium and a bunch of other trace minerals.

--I'm taking B minus. Only half today bc sleep really bad last night. I'm hoping that helps with thiamine even though not taken at the same time.

-- even if I make my own no calorie electrolyte mix, someone said that "elemental" potassium was different (more potent, equivalent to a higher dose) than potassium from any food source including potassium. So I don't know what dosing would be the equivalent.

--also with a mix: kinda doesn't make sense if I'm just low in potassium (bc the imbalance would continue). But the C water has helped. Just not enough.

I don't know how long potassium takes to get through your system. But my level today, fasting before breakfast, was 4.2, which is exactly the same as in the ER about 10 days ago. I don't know whether what I took yesterday would still be in my system. But you would think that maybe my level would be higher given how much I've added to my diet, unless it was being artificially removed.

I would really like to find a recipe for an electrolyte mix. And to read from some study or something that having a mix is, in fact, safer than just taking potassium alone (and just as effective). I'm totally guessing otherwise.

 

[linusbert]

I would really like to find a recipe for an electrolyte mix. And to read from some study or something that having a mix is, in fact, safer than just taking potassium alone (and just as effective). I'm totally guessing otherwise.

use the OHD from the WHO , modify it to your needs. for rehydration.
or any electrolyte mix from pharmacy used for diarrhea.
usually its salt + sugar + potassium.

take your potassium a best near a meal. insulin puts potassium into the cells.
actually for hyperkalemia , the antidot is insulin

 

[TinaT]

use the OHD from the WHO , modify it to your needs. for rehydration.
or any electrolyte mix from pharmacy used for diarrhea.
usually its salt + sugar + potassium.

take your potassium a best near a meal. insulin puts potassium into the cells.
actually for hyperkalemia , the antidot is insulin

Thank you. I'll take near meal. I really want something without calories, however.

I just learned something maybe big! I just finished lunch. Was feeling pretty calm although exhausted. This morning took B minus, D, and got the shot. Nothing else.

Before lunch today, I decided to take the third iron pill I'm trying (made from plants by global healing). I knew that I needed some kind of folate so took 1/4 of life extension methylfolate pill (which equaled about 425 mg of methylfolate). Now about 30 min after lunch, my muscle twitching, which I thought was potassium, is going full force. Plus I just watched some doc talking about methylfolate side effects and becoming more anxious is one of them (he said 50 mg of niacin every 30-45 min until symptoms go away will help, but my Tinnitus got VERY loud the last time I took niacinamide, which I'm guessing is similar enough. I have some here but really don't want to take any). So that could maybe explain my symptoms. I'm basically just "over methylating"? That wouldn't explain yesterday bc I didn't take any. So I don't know. Shoot. I mean the BP and shaking and other symptoms...I guess those could be caused by the methylcobalamin, too. Maybe this isn't potassium???

Or maybe it is??

This shaking is the twitching I've been feeling though... Not sure about the other stuff or what to do about the whole thing. I would switch to hydroxy but there are studies showing that's not always effective. And I am waiting to receive folonic acid.

 

[TinaT]

use the OHD from the WHO , modify it to your needs. for rehydration.
or any electrolyte mix from pharmacy used for diarrhea.
usually its salt + sugar + potassium.

take your potassium a best near a meal. insulin puts potassium into the cells.
actually for hyperkalemia , the antidot is insulin

Also what is the OHD? And don't you agree I shouldn't need sugar if eaten near a meal? I need to be done with this coconut water for real. Besides weight gain, I'm just feeling crappy from too much intake and overly full ALL of the time...

 

[Idie]

Thank you. I'll take near meal. I really want something without calories, however.

I just learned something maybe big! I just finished lunch. Was feeling pretty calm although exhausted. This morning took B minus, D, and got the shot. Nothing else.

Before lunch today, I decided to take the third iron pill I'm trying (made from plants by global healing). I knew that I needed some kind of folate so took 1/4 of life extension methylfolate pill (which equaled about 425 mg of methylfolate). Now about 30 min after lunch, my muscle twitching, which I thought was potassium, is going full force. Plus I just watched some doc talking about methylfolate side effects and becoming more anxious is one of them (he said 50 mg of niacin every 30-45 min until symptoms go away will help, but my Tinnitus got VERY loud the last time I took niacinamide, which I'm guessing is similar enough. I have some here but really don't want to take any). So that could maybe explain my symptoms. I'm basically just "over methylating"? That wouldn't explain yesterday bc I didn't take any. So I don't know. Shoot. I mean the BP and shaking and other symptoms...I guess those could be caused by the methylcobalamin, too. Maybe this isn't potassium???

Or maybe it is??

This shaking is the twitching I've been feeling tho

Thank you. I'll take near meal. I really want something without calories, however.

I just learned something maybe big! I just finished lunch. Was feeling pretty calm although exhausted. This morning took B minus, D, and got the shot. Nothing else.

Before lunch today, I decided to take the third iron pill I'm trying (made from plants by global healing). I knew that I needed some kind of folate so took 1/4 of life extension methylfolate pill (which equaled about 425 mg of methylfolate). Now about 30 min after lunch, my muscle twitching, which I thought was potassium, is going full force. Plus I just watched some doc talking about methylfolate side effects and becoming more anxious is one of them (he said 50 mg of niacin every 30-45 min until symptoms go away will help, but my Tinnitus got VERY loud the last time I took niacinamide, which I'm guessing is similar enough. I have some here but really don't want to take any). So that could maybe explain my symptoms. I'm basically just "over methylating"? That wouldn't explain yesterday bc I didn't take any. So I don't know. Shoot. I mean the BP and shaking and other symptoms...I guess those could be caused by the methylcobalamin, too. Maybe this isn't potassium???

Or maybe it is??

This shaking is the twitching I've been feeling though... Not sure about the other stuff or what to do about the whole thing. I would switch to hydroxy but there are studies showing that's not always effective. And I am waiting to receive folonic acid.

Hi Tina——-sometimes the personal experiences help navigate so here are mine. The twitching, internal vibrations as I call them, more tingling, even more pronounced brain fog, and a whole host of other symptoms that I never outwardly had began to show themselves strongly once I started on the B12/Folate. As the nerves and body finally begin to get the nutrients (the body functions/nerves are waking up), lots of strange sensations happen. Many years ago, I took Cyancobalamin and was not told to take folate or even told to take a B-complex. My potassium levels hardly moved and I still had symptoms. It wasn’t until I switched to Methylcobalamin that I really saw the improvements AND the potassium challenges. You point out that it is hard to know what symptom is tied to what and you are so right. I know that for me the twitching, internal vibrations, etc. are tied to the healing affects of Methylcobalamin/Folate. For example——3 weeks ago I had internal vibrations upon waking and they were strong and very unsettling. Those have faded away.

Interesting that you saw some doctor talking about the side effects of Methylfolate and specifically mentions anxiousness. Anxiousness was my first indicator that I had a folate problem. I know this because when I took folate, it stopped the anxiousness very quickly. The challenge is MethylB12 and Methylfolate together are like accelerators for me and low potassium comes with that sometimes at a speed that is hard to manage. I am hoping that the potassium need will stabilize once I get all the added nutrients in. I have accepted that I may need to take some potassium for the rest of my life but large doses all the time is a scary thought.

I saw something on YOUTUBE the other day (it was nearly a decade old) but it was a researcher that basically said something to this effect, “we have known for a long time that some people could not process certain folates but we also found that those same people could not tolerate pure folate”. It was a short clip but I remember thinking so then what——they didn’t get the folate they needed?? Maybe they could not tolerate folate because they were having the potassium and start up issues.

My point is that there is so much wrong thinking out there around B12 and Folate deficiencies and the medical profession is not necessarily immune to that wrong thinking. There are some really smart people and great physicians who can help sort through all the misinformation. I have found some of those smart people within these dialogs and other dialogs and they have helped me sort through some of that misinformation.

Read and try to understand as much as you can—-it will help you settle on a pathway.

 

[TinaT]

Thank you.

So I guess you never decided to try hydroxy (B12) and / or folonic acid? I know the hydroxy isn't as good as methyl (ineffective for some people). But it would seem maybe worth a try since you are having low potassium problems with methyl.

 

[Idie]

Thank you.

So I guess you never decided to try hydroxy (B12) and / or folonic acid? I know the hydroxy isn't as good as methyl (ineffective for some people). But it would seem maybe worth a try since you are having low potassium problems with methyl.

I didn’t try hydroxy because Methyl B12 has worked for me in the past AND it is the superior form (even with its challenges). I think for me it has the been the underlying folate issues and trying to get my folate level up. I keep my B12 level high all day via injections and sublinguals. I’m having a heck of a time balancing just those two things because of the potassium needs and and it’s hard to move on to adding the other needed items if I can’t get those two balanced. I don’t want the potassium need to get beyond my ability to manage it.

My previous experience was that taking Methyl B12 and adding the additional co-factors got me through the worst of it in about 6 weeks. I had some trouble titrating the additional items but it was short lived. I also only took a small amount of folate 800 mcg twice a day. B12 was the big player for me back then AND now folate seems to have reared its head. I do have all the yucky genes that affect my ability to process B12, Folate and Vitamin D. My grandfather had the same issues. Bad genes suck.

Now I am taking higher amounts of folate and that has been really challenging.

I was rereading your previous post where you said on the days that you run, your nights seem much worse. I think it is pretty common for people to relapse or not improve faster if they over extend. I know running is extremely important to you but maybe for the short term as you get your B-12 under control you could do a smaller amount of running then resume when you get better. I did have to chuckle little bit when you said it would have to be a pretty bad disease for you to give up running. Your spunky tenacity will be what will get you through this...ha! ha!

 

[TinaT]

I didn’t try hydroxy because Methyl B12 has worked for me in the past AND it is the superior form (even with its challenges). I think for me it has the been the underlying folate issues and trying to get my folate level up. I keep my B12 level high all day via injections and sublinguals. I’m having a heck of a time balancing just those two things because of the potassium needs and and it’s hard to move on to adding the other needed items if I can’t get those two balanced. I don’t want the potassium need to get beyond my ability to manage it.

My previous experience was that taking Methyl B12 and adding the additional co-factors got me through the worst of it in about 6 weeks. I had some trouble titrating the additional items but it was short lived. I also only took a small amount of folate 800 mcg twice a day. B12 was the big player for me back then AND now folate seems to have reared its head. I do have all the yucky genes that affect my ability to process B12, Folate and Vitamin D. My grandfather had the same issues. Bad genes suck.

Now I am taking higher amounts of folate and that has been really challenging.

I was rereading your previous post where you said on the days that you run, your nights seem much worse. I think it is pretty common for people to relapse or not improve faster if they over extend. I know running is extremely important to you but maybe for the short term as you get your B-12 under control you could do a smaller amount of running then resume when you get better. I did have to chuckle little bit when you said it would have to be a pretty bad disease for you to give up running. Your spunky tenacity will be what will get you through this...ha! ha!

Thank you Idie for sharing your experiences and your nice compliment. I'm sorry you have gone through this so much and for so long. I guess this is a new "episode" for you, for lack of a better word?

I've been thinking a lot about the potassium issue. I don't know. I can see merits in both strategies. I'm just really not sure about taking whatever form of B12 often enough to cause potassium levels to dip as they have. I think I was very near my ability to handle it, add you said. And that was 3 days between doses, something I just can't repeat unless maybe with hydroxy. Isn't it the case that maybe some people do better on hydroxy, so at least worth a try? There is no way anytime soon I'm going to get another methyl shot so soon after the previous one. I have been doing the sublingual but, even with that, right now I might hold back for a couple of days and see how I respond to this latest shot.. I'm really afraid of nights 3 & 4 (and maybe 5) upcoming. I'm really looking forward to receiving the folonic acid and hoping that will help. The methylfolate is not good for me. I get flu like symptoms and know now that the twitching could be either, methylfolate or potassium. I haven't had any C water or potassium so far today, other than lots in food. I think I'm going to let my blood pressure be the guide. I'm about to check that.

I do appreciate hearing that you think (and I know everyone agrees) that methyl is the best. I really hope for me that this time is better, and I can handle it. I can't keep repeating last week and I just don't think that's healthy or healing. Also, is good to know that the timeframe for you was 6 weeks! What a dream. I'm pretty hard core about most things. So I'm sure I'll continue with methyl if this time is tolerable. But I'm also a big believer in not pushing beyond the point that the body can't handle it. So I'm just not sure. I have hydroxy injections arriving Wednesday. Another idea is to get hydroxy injections in between. But right now -- I'm just bracing for the upcoming days and definitely will not be taking anything with methyl in the name.
As far as running, I'm sure you're right. It's tough. I'm like programed to go. However, I have been taking it much easier. I used to run 5-10 miles at a time. Now I'm running 3-5 with a lot of walking, like 3 min very easy pace (for me) jog, then 2 min walk, and, after 5 miles just about killed me the other day, as far as potassium later, the next two days I only went 3 then 4 miles. And very easy. Another idea is to do this indoors where there would be less heat and therefore less sweat. I might need to walk easy instead, at least through this next few days. I'm really concerned and scared.

I wish I could make a suggestion that might help you. You sound pretty tough yourself! I can't imagine just accepting the low potassium. I mean I would rather get better slower than take that kind of risk. I did order a bunch of powders to try to make my own electrolyte drink and discussed at length with a pharmacist. But I'm still just really not comfortable taking potassium or even continuing to drink so much C water. You have nerves of steel my friend!

 

[TinaT]

I didn’t try hydroxy because Methyl B12 has worked for me in the past AND it is the superior form (even with its challenges). I think for me it has the been the underlying folate issues and trying to get my folate level up. I keep my B12 level high all day via injections and sublinguals. I’m having a heck of a time balancing just those two things because of the potassium needs and and it’s hard to move on to adding the other needed items if I can’t get those two balanced. I don’t want the potassium need to get beyond my ability to manage it.

My previous experience was that taking Methyl B12 and adding the additional co-factors got me through the worst of it in about 6 weeks. I had some trouble titrating the additional items but it was short lived. I also only took a small amount of folate 800 mcg twice a day. B12 was the big player for me back then AND now folate seems to have reared its head. I do have all the yucky genes that affect my ability to process B12, Folate and Vitamin D. My grandfather had the same issues. Bad genes suck.

Now I am taking higher amounts of folate and that has been really challenging.

I was rereading your previous post where you said on the days that you run, your nights seem much worse. I think it is pretty common for people to relapse or not improve faster if they over extend. I know running is extremely important to you but maybe for the short term as you get your B-12 under control you could do a smaller amount of running then resume when you get better. I did have to chuckle little bit when you said it would have to be a pretty bad disease for you to give up running. Your spunky tenacity will be what will get you through this...ha! ha!

Also, would you mind sharing how often were you dosing during the 6 weeks? And how bad were your symptoms before you started B12? And how much did they improve?

Thank you ma'am!!
Tina

 

[Idie]

Also, would you mind sharing how often were you dosing during the 6 weeks? And how bad were your symptoms before you started B12? And how much did they improve?

Thank you ma'am!!
Tina

Well I wouldn’t say I have nerves of steel….I have my tough moments . Here is the short version…….

When I began my b12 journey I was desperate. I had been to multiple doctors, the ER twice, and had multiple sheer panic moments but no diagnosis.…all the major things on tests looked good but I felt dreadful. No sleeping, fatigue, chest pain, dizzy, weak,. I started putting the symptoms together and I guessed that I might have a B-12 problem..thank goodness for the internet. I was never tested for B12 during all those medical visits. I started taking small amounts of B-12 and didn’t improve so as you can imagine, it created all kinds of doubt that it was a B12 deficiency. I was smart enough to know that a B12 test was now unreliable because I was supplementing. I went back to my doctor and literally demanded a B12 shot. I received my shot in the afternoon and by the next morning I felt great and thought I was ok—-it is a B12 problem and I was fixed. Ah, no. 24 hours after that I crashed. The first shots were cynocobalamin and the medical doctor would only give 14 days of shots. I went out on my own after that and found Freddd and a few others who told me not to be fooled, I clearly had a b12 issue and they told me what to do about it. So, I started with dosing 4 times a day with B-12 sublinguals (5,000 mcg) and started adding a B-complex, one folate tablet and boy did I have a reaction. I didn’t think I was going to make it through I felt terrible…didn’t really know about the potassium problem at that time. That intensity lasted about lasted six weeks. I did kinda ok for the next year but knew after a lot of research that I was going to need injections if I was ever going to heal and my mouth was getting sore from having sublinguals in my mouth all the time. When I received my injections, I gave myself a shot everyday and on day 3—bam! Startup/refeeding hit me. I was scared so I quit the injections BUT the most miraculous thing happened, my worst symptoms were literally gone in a week. Then I knew how important the injections were and when I went back to the injections…..no more symptoms, no refeeding. I felt back to myself. More than 10 years passed and I got lax on my B12 and so here I am. Shame on me.

More is known about folate now (Freddd has referenced his lessons on folate). This time is as hard as last time as it relates to starting up. The potassium thing seems different this time and more challenging. Trying to understand that and work through it.

This B-12/Folate thing is messy and so important to our overall health..of that I am certain. As an aside…I found out years into this that my Grandfather had pernicious anemia and likely died an early death as a result. I know he suffered greatly from under treatment, he did not have a good life as it was full of suffering……so very sad.

 

[linusbert]

I do appreciate hearing that you think (and I know everyone agrees) that methyl is the best.

i actually don't.
methyl* has nothing to do with either folate nor b12. its just a methyl donor. it makes no sense to me that only methyl*B12*folate can be used for fixing folat or b12 deficiency - except for the very few who have genetic disorders converting between forms (i think freddd has one of those?). - of course in this forum, after all we are a collection of very special sick folks , there could be more of those genetic disorders than in general population.
in the medical literature, they treat b12 deficiency with cyanocobalamin... the worst form... and at best with hydroxocobalamin. and that works for most people.
tina, thats why i am asking, why dont you try hydroxo or adenosyl shots?

assuming i am not having those disorders, why do i need methyl*b12*folate? why not take a passive form like hydroxo or the active adenosylb12 and take a separate methyl donor like phosphatidylcholin from eggs for example to offer body a choice of a source of methylgroups.
i have no problems with natural methylrich foods like eggs. i only get the problems from supplements.

i generally like the idea more of supplying passive nutrients and let the body handle when he wants it active or when not. i suppose this comes with much less side effects. but of course makes only sense if the body can handle the conversion efficienctly.

@TinaT vibrating of legs and this stuff, comes to me if i take B6. i take it mornings or midday and in the afternoon i get those weird twitching and vibrating in my legs.

 

[TinaT]

Well I wouldn’t say I have nerves of steel….I have my tough moments . Here is the short version…….

When I began my b12 journey I was desperate. I had been to multiple doctors, the ER twice, and had multiple sheer panic moments but no diagnosis.…all the major things on tests looked good but I felt dreadful. No sleeping, fatigue, chest pain, dizzy, weak,. I started putting the symptoms together and I guessed that I might have a B-12 problem..thank goodness for the internet. I was never tested for B12 during all those medical visits. I started taking small amounts of B-12 and didn’t improve so as you can imagine, it created all kinds of doubt that it was a B12 deficiency. I was smart enough to know that a B12 test was now unreliable because I was supplementing. I went back to my doctor and literally demanded a B12 shot. I received my shot in the afternoon and by the next morning I felt great and thought I was ok—-it is a B12 problem and I was fixed. Ah, no. 24 hours after that I crashed. The first shots were cynocobalamin and the medical doctor would only give 14 days of shots. I went out on my own after that and found Freddd and a few others who told me not to be fooled, I clearly had a b12 issue and they told me what to do about it. So, I started with dosing 4 times a day with B-12 sublinguals (5,000 mcg) and started adding a B-complex, one folate tablet and boy did I have a reaction. I didn’t think I was going to make it through I felt terrible…didn’t really know about the potassium problem at that time. That intensity lasted about lasted six weeks. I did kinda ok for the next year but knew after a lot of research that I was going to need injections if I was ever going to heal and my mouth was getting sore from having sublinguals in my mouth all the time. When I received my injections, I gave myself a shot everyday and on day 3—bam! Startup/refeeding hit me. I was scared so I quit the injections BUT the most miraculous thing happened, my worst symptoms were literally gone in a week. Then I knew how important the injections were and when I went back to the injections…..no more symptoms, no refeeding. I felt back to myself. More than 10 years passed and I got lax on my B12 and so here I am. Shame on me.

More is known about folate now (Freddd has referenced his lessons on folate). This time is as hard as last time as it relates to starting up. The potassium thing seems different this time and more challenging. Trying to understand that and work through it.

This B-12/Folate thing is messy and so important to our overall health..of that I am certain. As an aside…I found out years into this that my Grandfather had pernicious anemia and likely died an early death as a result. I know he suffered greatly from under treatment, he did not have a good life as it was full of suffering……so very sad.

That's a great and sad story. I wonder why things are different now. Your situation is a cautionary tale for sure. I'm sorry you are going through this again. I will definitely be supplementing forever. The only question might be whether I continue injections (versus sublingual). I know that's typically advised but I've read a few conflicting things and there are risks with the injections. I don't know how high those risks are. But, in an ideal world, I would prefer to get better, then use sublinguals.

Have you heard of using 50 mgs of Niacin (every 30-45 min when you have side effects) to deal with methylfolate?

Longer explanation:

I haven't tried that yet. But I ordered the product yesterday, just in case. I'm hoping folonic acid will do the job instead, and that I can kiss methylfolate goodbye forever.

Last night my reflux was really bad. I have either managed to get sick *again* or the methylfolate was screwing with me. But I've been trying a combo of melatonin (3 mg per studies) and reflux Gourmet. That's the first night I've needed any meds since I started the shots. So that sucked. The methylfolate has been giving me sore throats consistently, which could be caused by reflux. So I need something different.

However, when I finally fell asleep, I managed 5.5 solid hours of natural sleep. Then decided to take Ambien just to make sure I had enough sleep for a change.

No potassium crash. I didn't even drink C water yesterday. I am learning the two nights after the shot are the calm before the storm. I sleep decently and the potassium crashes haven't started.

I think I could have avoided the reflux if I hadn't taken methylfolate. (However being sick is possible. I've been getting sick every several weeks for months, and we went to our first crowded event with friends this weekend. It was an outdoor concert, but still. My friends disabled sister was coughing. God I hope that isn't it bc then I know the drill, slow moving train, includes shaking and insomnia for several nights then usually PEM for a week or two. I'm hoping the B12 and iron improve my immunity and exercise tolerance after getting sick, and I've read several sources that have convinced me that they should.)

I hope you enjoy your day and get your folate and potassium under control.

 

[TinaT]

i actually don't.
methyl* has nothing to do with either folate nor b12. its just a methyl donor. it makes no sense to me that only methyl*B12*folate can be used for fixing folat or b12 deficiency - except for the very few who have genetic disorders converting between forms (i think freddd has one of those?). - of course in this forum, after all we are a collection of very special sick folks , there could be more of those genetic disorders than in general population.
in the medical literature, they treat b12 deficiency with cyanocobalamin... the worst form... and at best with hydroxocobalamin. and that works for most people.
tina, thats why i am asking, why dont you try hydroxo or adenosyl shots?

assuming i am not having those disorders, why do i need methyl*b12*folate? why not take a passive form like hydroxo or the active adenosylb12 and take a separate methyl donor like phosphatidylcholin from eggs for example to offer body a choice of a source of methylgroups.
i have no problems with natural methylrich foods like eggs. i only get the problems from supplements.

i generally like the idea more of supplying passive nutrients and let the body handle when he wants it active or when not. i suppose this comes with much less side effects. but of course makes only sense if the body can handle the conversion efficienctly.

@TinaT vibrating of legs and this stuff, comes to me if i take B6. i take it mornings or midday and in the afternoon i get those weird twitching and vibrating in my legs.

Hello. It's a tough decision. There are sources saying basically hydroxy isn't as effective for everyone. Fredd says that it's only effective for a very small percentage of people. I've read conflicting info as far as the percentages. Like I've read it should work for most people. I did read one case study where an elderly woman was improving a lot on methyl for two months, then she started hydroxy, and all of her progress was reversed over the next two months. I don't know my genetic profile. But I would rather try to tolerate the methyl.

That being said, holy hell, if the potassium thing is just as bad this time -- then I'll definitely be trying hydroxy. That is not something I want to need to overcome. That's just way way way too stressful.

I don't have access to adeno other than it's in a nice sublingual I use (which is a combo of methyl, hydroxy and adeno). The compound pharmacy that I use only has methyl and hydroxy.

It's definitely something to think about.

Another big problem lately is sleep. Some nights are reasonably acceptable given what I'm going through with B12. But others are a complete nightmare with only an hour or two of sleep. That might have been caused by waiting for so long for this latest shot. But that's been very tough and scary -- like it might never get better, which I was reading yesterday a bunch of people on Reddit never recovered from taking methylfolate or methyl B12 as far as sleep especially. That is extremely, extremely concerning.

 

[Freddd]

Thank you.

So I guess you never decided to try hydroxy (B12) and / or folonic acid? I know the hydroxy isn't as good as methyl (ineffective for some people). But it would seem maybe worth a try since you are having low potassium problems with methyl.

It doesn't need potassium because it isn't active in healing and making cells much unlike MeCbvl and AdoCbl. Same with folic acid, pretty useless. Methylfolate also increases cell making and healing and usually each time something starts healing , say with an increment of methylfolate, usually a neded for more potassium is usual.

 

[linusbert]

It doesn't need potassium because it isn't active in healing and making cells much unlike MeCbvl and AdoCbl. Same with folic acid, pretty useless. Methylfolate also increases cell making and healing and usually each time something starts healing , say with an increment of methylfolate, usually a neded for more potassium is usual.

@Freddd , i do not understand the physiology of this. if the body is able to convert passive to active forms. why would i need to supply active forms at all? i understand that there are people with genetics who cannot do this good enough, but what about those folks who do?
i am in no way arguing right now, i am just asking honestly from a standpoint of absolute absence of knowledge how those biochemical processes work.
sorry , i am probably the 1000th dude who asks this the last 10 years since you maintain those protocols.


i really read a lot of content from you and i like your work. i recommended your protocol to multiple people outside of this forum as i believe this seams to be a reasonable explanation for a lot of things.
but at this point all this information is sooo fragmented.
for example, in your "standard guide" which you also have on (https://www.quora.com/Has-someone-u...nd-what-were-the-outcomes/answer/Fred-Davis-7) you talk about the methyl trap and the deadlock quartet meb12+adob12+LCF+methfolat.
though a few days ago i read here that you wrote that also other things like vitamin D can unblock the meth trap in addition to the other 4. i'd never known , vitamin D isnt even mentioned in that protocol.

and there is a lot more little detailes i found here which are not in the protocol. and i am pretty sure you answered the question about passive/active b12/folat a zillion times.


i used to be a IT guy before i got sick. i dont know if you heard about "Obsidian" https://obsidian.md/. its a free tool to write, gather and organize information. they call it "second brain" , but it really is just a markdown editor with fancy useful tools like a canvas and relationship graph.

PLUS you can use the publish plugin, to publish your "project" aka vault on the web, this looks for example like this:
https://integralguide.com/️+Start+Here/About
or the obsidian handbook is itself published like this:
https://help.obsidian.md/Obsidian/Index

i think this could be a good way to present your work.
i'd even donate a few bucks but i have not much spare, sorry for that.

 

[Freddd]

Also I've still been thinking about your glucose suggestion. I looked at the symptoms and some overlap, but many don't. However... Since the shots... I've been drinking C water all day and some of the night. That has been one drastic change to my diet.


I actually read an article by an MD saying that if you have really low potassium, then your cells can't absorb potassium, and then you would get high potassium. That's really friggin scary bc that means, from my reading, if things get too bad, there are no easy answers.

So I think you're right in certain scenarios. I'm just trying to review the symptoms of both often, and behave accordingly.

But man I absolutely must stop drinking coconut water. I probably had 8 servings yesterday. No one can or should drink that many calories. That's totally unsustainable at my age and given reduced activity levels.

Today I've been searching for a low calorie, non acidic electrolyte mix. I'm too nervous to take straight potassium. I just finished reading a long reddit post and comments about potassium. Several medical professionals including heart doc, a few nurses, an EMT, and a pharmacist... All warning that they've seen high potassium cause heart attacks and other dangerous heart conditions. This is f ing scary.

There needs to be the right mix of calcium, potasium, magnesium and other such minerals. I have some genetic problems with nutrients. For the last 20 years I've been on the merry-go-round refeeding syndrome. I get the symptoms of NOT having enough of mostly methylfolate increase causing need for more potassium . I've also needed to increase Boron one time and it took me 7 years how to learn to absorb enough copper to satify my body and be in mid range. I had to take lithium for 5 years with AdoCbl, MeCbl and methylfolate and cofactors for making cells. After taking 20 mg of lithium orotate for 5 years my homeostasis of minerals got much better and it allowed my body to make Transcobalamin receptor - Li. T=hat absorbs and manages the B12 much better than withoiut lithium and changes injecdtions to having 24 hour or more halflife instead of 20 -50 minutes as most studies indicate. However, most of that was done after fluoride became common in this country and it blocks TCR-Li. We are mammals. We are animals. We have the same carnivoire B12 system that ALL ANIMALS HAVE that is much better than the scraps of B12 with the IF and gut absorbtion if we take enough lithium. It used to be gotten in food and water. The fluoride in almost everybody's diet destroys the TCR-Li for B12. Lithium is not properly recognized for what it does and is mostly ignored. It is a needed mineral for metabolism to work well. It also appears to cuase better homeostasis of minerals, like portassium and copper and other minerals;.

 

[TinaT]

@Freddd thank you. Do you happen to have a link to your latest version of all nutrients that you think are necessary? And should I be taking lithium? Drinking distilled water?

How did you know that you needed boron, copper, and lithium? Was this from something like a full micronutrient panel every 3 months? Or some other faster way?

Also, as far as potassium (and folate), do you just go by symptoms? Bc that's pretty scary when many of the symptoms could be other issues including B12 deficiency. And what symptoms cause you to decide how much you need of which nutrient (as far as potassium or folate)?

I'm still incredibly nervous about supplementing potassium. Yet sitting here feeling abnormally tired at 5 p.m. BP low, pulse rate fast. And I'm so tired already of drinking coconut water, which makes me feel a little better as far as safety bc there's a mix of electrolytes. So you think a mix of electrolytes accomplishes the same thing as far as potassium (even though an imbalance would continue)?

I spoke with a woman today who has a B12 website. She's not a doctor but has done extensive research and has experience with B12. She thought increasing iron might help. Have you ever heard of that idea?

@linusbert I have the same questions. Thank you for chiming in. I'm sure Fredd has heard it all. This is just so upsetting and I'm extremely concerned that this low potassium situation my new normal. That definitely could cause chronic fatigue in a hurry, I would think. It's just devastating.