Managing Potassium Deficiency - Share your experience

[seamyb]

I think I'm starting to get Potassium deficiency symptoms.

I had been drinking lots of carrot juice in order to prevent K deficiency. This perhaps had been working, but I eventually started to look like the Donald - an orange tinge appeared on my skin. So I backed off on the carrot juice. Recently I started to have palpitations and I immediately thought potassium. Downed some carrot juice (who cares about having orange skin when your heart's going doolally) and they seemed to get better.

Has anybody experienced neck pain from K deficiency? It feels like if I move then my head might fall off. Kinda where the back meets the neck at the spine.

Gonna start crushing up 3 99mg potassium glyconate pills into water and down it. Pain in the bum on top of everything else I take. Plus it's still nowhere near the carrot juice amount!

 

[TinaT]

I also do salt with my electrolytes. I haven't done hair mineral analysis.

Yasko uses hair mineral analysis. I found out the blood analyses are more like a snapshot in time based on what you ate recently. So I can see where hair testing would be the way to go.

Hi. Where do you find the hair analysis? Do you know if that's backed up by studies as legit? I'm desperate to figure out whether I suddenly need much more potassium, yet levels come back as normal. I guess RCB (?) Potassium doesn't help. Or is it RSB? I'm losing it.. I'm not a chemist.

 

[Jyoti]

Has anybody experienced neck pain from K deficiency? It feels like if I move then my head might fall off. Kinda where the back meets the neck at the spine.

100%!

I'm desperate to figure out whether I suddenly need much more potassium, yet levels come back as normal.

Potassium is a bit tricky to play around with since too much or too little can both be serious. My levels are mostly normal, but I am deficient sometimes, even with those normal tests. I know this from the symptoms I have and from the symptom-alleviating results of drinking something potassium-rich like low sodium V-8 or coconut water.

I have learned through tracking symptoms and testing that my normal is not the standard normal. I've also learned that most doctors don't believe me so I just have to supplement when I have symptoms and try to watch the outcomes carefully.

There is increasing evidence that low potassium is a factor for many of us. Here is a small but important study of cellular sodium which references a tendency to lowered levels of potassium in ME/CFS:

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-022-03616-z

In an earlier paper total body potassium was found decreased by about 10% in a group of ME/CFS patients with severe fatigue [40]. In this study, there was a strong inverse correlation of the total body potassium and the total time spent resting as a measure of fatigue and exhaustion. Lower plasma potassium levels were also found in a recent study in patients with ME/CFS compared with healthy controls [41]. If potassium leaving the cell during the process of repolarization via potassium channels is not taken up fast enough by the Na+/K+-ATPase in the working muscles, it reaches the blood stream to be renally excreted so that loss of potassium occurs during exercise. Thus, the indirect evidence for a lowered intracellular potassium together with our direct demonstration of a rise in intracellular sodium provides very strong arguments for a diminished Na+/K+-ATPase activity in ME/CFS.

And here is a Health Rising blog deconstructing the paper. Cort does a nice job of simplifying the science, I think: https://www.healthrising.org/blog/2023/02/22/chronic-fatigue-syndrome-calcium-muscles-startup/

 

[TinaT]

Update on me. I ran into potassium deficiency again, even as low and slow as I was going. So my conclusion is, you absolutely must supplement with potassium, there is no way you can get it all from food. So my doc is wrong on that one.

So what I've done to get back into balance, is temporarily stop my folate containing supp, stopped my magnesium only supp, and started supplementing with a magnesium/potassium combo supplement. This seems to be working well.

I've been off for, I think, about a week and a half. My need for this supp is still increasing gradually. I can tell if I wake up from sleep with my feet twitching that I are she'sneed more. Also after I take the supp, I get little heart palps. These are getting less and less as (I assume) the potassium deficiency is getting less. I'm taking four capsules per day now. It contains 90mg each of mag and potass, so that's 360mg of each.

I wouldn't be surprised if I needed more, especially after I restart the folate containing supp. I'll restart when I feel I've gotten my mag/potass levels in balance.

Your comments are always helpful.

I'm struggling with potassium after methyl B12 shots followed by a multi with methylfolate and an iron pill with methylfolate.

I've decided to stop the multi for now. Still thinking about the iron bc I'm low so consider that almost as important as the B12.

I wonder whether we really need methylfolate to handle the B12.

But my question for you: would you mind sharing what brand of potassium / magnesium you're taking?

Thank you!!

 

[Freddd]

Hi. Where do you find the hair analysis? Do you know if that's backed up by studies as legit? I'm desperate to figure out whether I suddenly need much more potassium, yet levels come back as normal. I guess RCB (?) Potassium doesn't help. Or is it RSB? I'm losing it.. I'm not a chemist.

In MY EXPERIENCE of doing this since May 21st, 2003 is that I had dozens of episodes of refeeding syndrome symptoms. It took me 4 years for getting nutrients balanced out and semi stable. FOr the first 4 years I was having to increases methylfolate and potassium alternating. Then copper went low. It took me until I had been taking lithium for 5 years and suddenly I could was able to get my copper level into midrange after being too low for years and symptoms. The lithium growing TCR-Li and changing my B12 injection serum halflife from 20-50 minutes after injection to more than 24 hours before any B12 showed in the urine. Previous from that my eGFR went from 59% to 90+% in the 5 years since starting the lithium. After the 5 years of lithium and continued, the potassium has stayed stable. Potassium can be very difficult to get to steady in midrange when cell making goes up and down a lot. It is also difficult for me to get the level up as it is flushed out of the body so fast. Usually only people with kidney problems can actually get high potassium.

Right now I stay in low middle range with 200 mg a day approximately. A lot more K my gut doesn't tolerate long before getting towards upper range. The methylfolate is critical to making cells and largely controls how much healing you can have going on. I titrated methylfolate from 400 mcg to 30 mg daily over 4 years by increasing each time there were more folate deficiency symptoms. Then just about each time I needed another small amount of additional potassium, usually first notice I had was gut paralysis which could be relieved within an hour by a bit of an increase in potassium gluconate in water.

Along the way copper was a perrenial prpoblem until adfter 5 years of lithium. I also had one deficiency siotuation with low boron ("wildfire" bacterial infections attacking gums and teeth while low on boron. Selenium got in the upper third of range and I have discontinued for now at doctors suggestion. However, as that took 20 years of healing and a slowdown of healing for it to go higher than lower third of range.

Be careful and get tested. The minerals can be a real problem high or low, and low is much more common. They are desperately needed for good healing. I developed some problem symptoms that caused a more complete test than usual.

 

[TinaT]

In MY EXPERIENCE of doing this since May 21st, 2003 is that I had dozens of episodes of refeeding syndrome symptoms. It took me 4 years for getting nutrients balanced out and semi stable. FOr the first 4 years I was having to increases methylfolate and potassium alternating. Then copper went low. It took me until I had been taking lithium for 5 years and suddenly I could was able to get my copper level into midrange after being too low for years and symptoms. The lithium growing TCR-Li and changing my B12 injection serum halflife from 20-50 minutes after injection to more than 24 hours before any B12 showed in the urine. Previous from that my eGFR went from 59% to 90+% in the 5 years since starting the lithium. After the 5 years of lithium and continued, the potassium has stayed stable. Potassium can be very difficult to get to steady in midrange when cell making goes up and down a lot. It is also difficult for me to get the level up as it is flushed out of the body so fast. Usually only people with kidney problems can actually get high potassium.

Right now I stay in low middle range with 200 mg a day approximately. A lot more K my gut doesn't tolerate long before getting towards upper range. The methylfolate is critical to making cells and largely controls how much healing you can have going on. I titrated methylfolate from 400 mcg to 30 mg daily over 4 years by increasing each time there were more folate deficiency symptoms. Then just about each time I needed another small amount of additional potassium, usually first notice I had was gut paralysis which could be relieved within an hour by a bit of an increase in potassium gluconate in water.

Along the way copper was a perrenial prpoblem until adfter 5 years of lithium. I also had one deficiency siotuation with low boron ("wildfire" bacterial infections attacking gums and teeth while low on boron. Selenium got in the upper third of range and I have discontinued for now at doctors suggestion. However, as that took 20 years of healing and a slowdown of healing for it to go higher than lower third of range.

Be careful and get tested. The minerals can be a real problem high or low, and low is much more common. They are desperately needed for good healing. I developed some problem symptoms that caused a more complete test than usual.

Let me first day that your post on quora is what brought me here. And I have read many of your posts since then. I know il you have extensive, extensive knowledge and experience.

The problem is... It's just way too complicated for at least me to understand and follow. And I'm usually not a person to shy away from complexity (although I am not a scientist or medical professional).

I spend a lot of time online. I actually work online. I have read a lot over the years, including very complex topics. But I just told my husband: your posts are the most complicated I've ever read.

So basically .. I mean if it's that complicated, there probably is no hope for me or most people.

But I mean how did you know any individual nutrient was the issue? Like if you are taking many... How could you isolate each of them? And how in the world did you test so often?

I really would appreciate any advice from you. And I greatly appreciate what you've shared above. I'm just hoping to get very lucky bc I'm sure I will never be able to apply what you just said, unfortunately.

ETA: also I'm really afraid to experiment with potassium supplements. Is there anything you can say to ease my mind? I'm definitely having low potassium symptoms after starting methyl B12 shots weekly.

Oh and I did a micronutrient test. I checked into hair but read those are not reliable. And I don't know how you know things like how much your levels changed from day to day.

Do you think most people go through this complicated refeeding? Bc I read some people getting better quickly. And even on B12 society websites, they say things like low potassium only happens in the early stages of treatment.

 

[Idie]

Let me first day that your post on quora is what brought me here. And I have read many of your posts since then. I know il you have extensive, extensive knowledge and experience.

The problem is... It's just way too complicated for at least me to understand and follow. And I'm usually not a person to shy away from complexity (although I am not a scientist or medical professional).

I spend a lot of time online. I actually work online. I have read a lot over the years, including very complex topics. But I just told my husband: your posts are the most complicated I've ever read.

So basically .. I mean if it's that complicated, there probably is no hope for me or most people.

But I mean how did you know any individual nutrient was the issue? Like if you are taking many... How could you isolate each of them? And how in the world did you test so often?

I really would appreciate any advice from you. And I greatly appreciate what you've shared above. I'm just hoping to get very lucky bc I'm sure I will never be able to apply what you just said, unfortunately.

ETA: also I'm really afraid to experiment with potassium supplements. Is there anything you can say to ease my mind? I'm definitely having low potassium symptoms after starting methyl B12 shots weekly.

Oh and I did a micronutrient test. I checked into hair but read those are not reliable. And I don't know how you know things like how much your levels changed from day to day.

Do you think most people go through this complicated refeeding? Bc I read some people getting better quickly. And even on B12 society websites, they say things like low potassium only happens in the early stages of treatment.[/QUOTE

Your comments are always helpful.

I'm struggling with potassium after methyl B12 shots followed by a multi with methylfolate and an iron pill with methylfolate.

I've decided to stop the multi for now. Still thinking about the iron bc I'm low so consider that almost as important as the B12.

I wonder whether we really need methylfolate to handle the B12.

But my question for you: would you mind sharing what brand of potassium / magnesium you're taking?

Thank you!!

Hi Tina

Most people use NOW brand Potassium Gluconate Powder. Nature Made Potassium Gluconate tablets are also used—either crushed and put in water or taken with food. Gluconate seems to be the easiest on the stomach.

Idie

 

[Freddd]

Let me first day that your post on quora is what brought me here. And I have read many of your posts since then. I know il you have extensive, extensive knowledge and experience.

The problem is... It's just way too complicated for at least me to understand and follow. And I'm usually not a person to shy away from complexity (although I am not a scientist or medical professional).

I spend a lot of time online. I actually work online. I have read a lot over the years, including very complex topics. But I just told my husband: your posts are the most complicated I've ever read.

So basically .. I mean if it's that complicated, there probably is no hope for me or most people.

But I mean how did you know any individual nutrient was the issue? Like if you are taking many... How could you isolate each of them? And how in the world did you test so often?

I really would appreciate any advice from you. And I greatly appreciate what you've shared above. I'm just hoping to get very lucky bc I'm sure I will never be able to apply what you just said, unfortunately.

ETA: also I'm really afraid to experiment with potassium supplements. Is there anything you can say to ease my mind? I'm definitely having low potassium symptoms after starting methyl B12 shots weekly.

Oh and I did a micronutrient test. I checked into hair but read those are not reliable. And I don't know how you know things like how much your levels changed from day to day.

My internist does serum tests from time to time along with all the blood and other tests I have accumulatede with problems and symptoms.

Do you think most people go through this complicated refeeding? Bc I read some people getting better quickly. And even on B12 society websites, they say things like low potassium only happens in the early stages of treatment.

I would suggest that first you use the two lists of symptoms and make a list of all those you have. Then note wjich ones change in what ways as you add each item which if the correct one for next, you resp[onds usually in a few hours. I have fissure in my fintips and my edge of nail in various places and quantities. Also IBS. I can see and feel the differences in heqaling ort worsening of these fissures lets me see and feel which way things are going. You have to work with the symptoms you have and can get feedeback as you watch things heal or worsen. Daily records of changes and in some months you will know how your system works. You start with the small minerals, and suggested major electrolytes, b-complex and vitamins like E, A, C etc and start with those things. Observe what things change as you start the basics. Then the body starts asking for more methylfolate and often alternating with increases in potassium. SO if you are going to start with 99 mg potassium, Keep track how many you have to use in a day to . Use the groups of refeeding symptoms to identify, potassium is pretty obvious. Ity starts with feeling "bad" and usually gut paralysis pain.

As you heal things what yuou need can change. To keep good healing I have to take at least 4-5 doses of methylfolate daily. And when titrating I used 800 mcg doses and started with 4 daily doses and increased all doses each time.. I had things start with MeCbl in 20 minurtes I knew my life was changed and I just increased each thing that goes insufficient. The changes are 99% of the time methylfolate and potassium are the required.

 

[Freddd]

Hi. Where do you find the hair analysis? Do you know if that's backed up by studies as legit? I'm desperate to figure out whether I suddenly need much more potassium, yet levels come back as normal. I guess RCB (?) Potassium doesn't help. Or is it RSB? I'm losing it.. I'm not a chemist.

Most of the potassium is in the tissue. The serrum level is what is avalable for use. SOme people have trouble getting in serum. Others empty out the tissue to a dangerpous extent before getting even a warning. It can change with other things. Be careful. Know how your body handles it.

 

[Freddd]

Your comments are always helpful.

I'm struggling with potassium after methyl B12 shots followed by a multi with methylfolate and an iron pill with methylfolate.

I've decided to stop the multi for now. Still thinking about the iron bc I'm low so consider that almost as important as the B12.

I wonder whether we really need methylfolate to handle the B12.

But my question for you: would you mind sharing what brand of potassium / magnesium you're taking?

Thank you!!

II am taking Natures Bounty Magnesium Glycinate, 240mg. It is the best magnesioum supplement I've ever tried. The potassium I'm taking is Bulk Supplements potassium glycinate,. Its a power and I take a tiny amount in water. I have serum tests each 3 months and that has been difficult to get into a effective and stable range.

 

[TinaT]

Most of the potassium is in the tissue. The serrum level is what is avalable for use. SOme people have trouble getting in serum. Others empty out the tissue to a dangerpous extent before getting even a warning. It can change with other things. Be careful. Know how your body handles it.

Thank you for all of your help. I really appreciate it. Potassium is very scary for me. Right now I'm just drinking a lot of coconut water but that's a lot of calories, and it's still a lot of potassium, so I'm not even sure it's any safer. I'm trying to be careful. Thank you again.

 

[cheeseater]

Ok, this is really weird and i am confused, please help.
I get muscle cramps as the most noticeable symptom and I take k gluconate. Ok, now this is what is really puzzling, if I take one pill which is 99mg, I am better. This is not only confusing because everyone else talks about much larger doses, but 99mg is really low dose and shouldn't do really much of anything because a normal diet would have much more than that. For example a potato has 600mg. In it and I eat potatoes all the time and it doesn't help relieve my cramping symptoms. Heck with all the potassium in a regular diet, they say you easily get several grams a day, so why would 99mg help me at all ??

When US scientists first started looking seriously at nutrients in the 30's, to eventually come up with USRDA's etc they found that too much elemental potassium would cause a bellyache in most all people. For that reason the supplement industry has always followed a unique guideline for stamping out potassium pills. To my knowledge, potassium pills are the only US sold supplement pill that keeps a self imposed limit. Maximum pill form of elemental potassium is 99mg. When you look at the label of your potassium pill, it should tell you where the stated amount of elemental potassium came from, and how much. Potassium gluconate is common. To get 99mg of elemental potassium, it is around 622mg of potassium gluconate. So, are you taking 622mg potassium or 99mg when you take that pill? You are taking 99mg of elemental potassium. see the back label here for potassiun gluconate powder and you will see (if you do the math) that 99mg elemental potassium equal 622mg of potassium gluconate: https://www.iherb.com/pr/now-foods-...MIp5PJ4Kn4_QIVDAStBh1vCweaEAQYAyABEgJSLvD_BwE

When a source tells you that a good sized potato has 600mg potassium, they are saying it has around 99mg elemental potassium.

When you eat a banana and someone say it has 420mg of potassium, that is not like taking 4+ 99mg potassiumm pills. Rather, it is like taking 2/3's of a 99mg potassium pill.

There is no food you can eat a normal serving of that will give you more than 99mg of elemental potassium.

ALl the research I have done on potassium says no one source (potassium gluconate, citrate or chloride) is superior to any other source. Gluconate is generally the least expensive.

I take a 99mg (elemental) potassium pill with breakfast and dinner. I do that because over the years I have noticed that if I do not, my blood pressure creeps up.

 

[TinaT]

II am taking Natures Bounty Magnesium Glycinate, 240mg. It is the best magnesioum supplement I've ever tried. The potassium I'm taking is Bulk Supplements potassium glycinate,. Its a power and I take a tiny amount in water. I have serum tests each 3 months and that has been difficult to get into a effective and stable range.

Hey Fred. I know you must be extremely busy. Can I please just ask this very burning question: do you think this low potassium situation is likely to get better as my B12 improves, and my shots hopefully get further apart? I can't seem to keep my levels high enough. And I mean I can't be sure that the issue is potassium, although I am pretty sure that's what it is. Coconut water helps some, but is hurting me overnight bc that causes reflux when I go back to sleep (which could eventually cause me to need pepsid again, which is what caused this refeeding in the first place -- calories this close to sleeping are strictly prohibited for anyone with reflux and really risk reflux for anyone). I'm scared to just make my own although I might get there. Plus, I think I need more potassium.

I'm just really trying hard to figure out whether this is likely to improve. I think I've read in a few places that it just happens early in the treatment. But so far I can't get any verification that this should go away. It's been 9 days since my last shot, and so far I'm not back to normal.

It's really scaring me that you still need to get checked every 3 months and struggle to keep your levels good. Is that with potassium or just magnesium? Any reason why you think your situation might be different? I've read that eventually shots can be spaced further apart. Like once a month or something. I'm hoping at least that might help.

Thank you!!
Tina

 

[Freddd]

Hey Fred. I know you must be extremely busy. Can I please just ask this very burning question: do you think this low potassium situation is likely to get better as my B12 improves, and my shots hopefully get further apart? I can't seem to keep my levels high enough. And I mean I can't be sure that the issue is potassium, although I am pretty sure that's what it is. Coconut water helps some, but is hurting me overnight bc that causes reflux when I go back to sleep (which could eventually cause me to need pepsid again, which is what caused this refeeding in the first place -- calories this close to sleeping are strictly prohibited for anyone with reflux and really risk reflux for anyone). I'm scared to just make my own although I might get there. Plus, I think I need more potassium.

I'm just really trying hard to figure out whether this is likely to improve. I think I've read in a few places that it just happens early in the treatment. But so far I can't get any verification that this should go away. It's been 9 days since my last shot, and so far I'm not back to normal.

It's really scaring me that you still need to get checked every 3 months and struggle to keep your levels good. Is that with potassium or just magnesium? Any reason why you think your situation might be different? I've read that eventually shots can be spaced further apart. Like once a month or something. I'm hoping at least that might help.

Thank you!!
Tina

My metabolism is no where near normal. I have CBL-C disease and some other problems. Folic acid, folinoic acid, CyCbl, HyCbl are all worsre than useless for me. These casue deficient symptoms worse with no healing. I take testosterone too and it is possible for me to need to reduce some things if hematocrit gets too high. It took me 7 years of copper deficiency before I was able to get that working. It took 5 years of lithium to make enough transcobalamin receptor - Li. My homeostasis is much better now. Ther toughest parts were making sure of healing but not faster than my body can manage without dangerous deficiencies.

 

[Freddd]

I judge by symptoms. For the 20 years of healing I had during some early days I needed 4,000 mg of K a day. Now I use about 200 mg/day. I titrated by 100-200 mg when needed and added it to daily needs. I have tests regularly because my metabolism is so weird. I've never had "above range" any supplement except B12 which has a rather strong more MeCbl causes more cell making if there is enough of other things such as methylfolate. The main electolytes I nuge them whichever way they are a little low or high. I've never had any out of "range" except I have to have high MeCbl and AdoCbl. That amount that I need now is quite different from 15 years ago, before lithium was part of things. After 5 years of 20 mg/day of lithium orotate my minerals have gotten very steady.

 

[Idie]

Hey Fred. I know you must be extremely busy. Can I please just ask this very burning question: do you think this low potassium situation is likely to get better as my B12 improves, and my shots hopefully get further apart? I can't seem to keep my levels high enough. And I mean I can't be sure that the issue is potassium, although I am pretty sure that's what it is. Coconut water helps some, but is hurting me overnight bc that causes reflux when I go back to sleep (which could eventually cause me to need pepsid again, which is what caused this refeeding in the first place -- calories this close to sleeping are strictly prohibited for anyone with reflux and really risk reflux for anyone). I'm scared to just make my own although I might get there. Plus, I think I need more potassium.

I'm just really trying hard to figure out whether this is likely to improve. I think I've read in a few places that it just happens early in the treatment. But so far I can't get any verification that this should go away. It's been 9 days since my last shot, and so far I'm not back to normal.

It's really scaring me that you still need to get checked every 3 months and struggle to keep your levels good. Is that with potassium or just magnesium? Any reason why you think your situation might be different? I've read that eventually shots can be spaced further apart. Like once a month or something. I'm hoping at least that might help.

Thank you!!
Tina

Hi Tina,

The biggest problem with B-12 deficiency is more often than not it is under diagnosed and undertreated. For me and lots of others, once you start getting well, that is not the time to get lax—if you do, the symptoms will come back….too long between shots can mean that you generally don’t feel well but limp along on too little B-12. There is a facebook group with hundreds if not thousands of b12 deficient members that advocate strongly for daily injections until no further neurological issues and then every other day and then it is an individual thing but not months or even several weeks between injections. Even with all of Freddd’s improvements, he still takes B12 just not as frequent. Potassium is an issue for many B-12 deficient people and especially for those who are trying to get all the necessary cell-making items into their routine. Early on in treatment is not the only time that low potassium can rear up—-knowing the symptoms means you can do things to help. I also tried coconut water and for me—-it didn’t help quick enough which is why I chose to use both tablets and the powder.
It is wonderful news that Fredd was able to to find the missing link (Lithium) and that he has made such good progress——it gives a lot of us hope that we find the same improvements and won’t have to have such frequent injections and can stabilize our potassium needs.

Can you list the symptoms that you believe are potassium related? I think that would allow Freddd and others to help guide.

 

[TinaT]

I judge by symptoms. For the 20 years of healing I had during some early days I needed 4,000 mg of K a day. Now I use about 200 mg/day. I titrated by 100-200 mg when needed and added it to daily needs. I have tests regularly because my metabolism is so weird. I've never had "above range" any supplement except B12 which has a rather strong more MeCbl causes more cell making if there is enough of other things such as methylfolate. The main electolytes I nuge them whichever way they are a little low or high. I've never had any out of "range" except I have to have high MeCbl and AdoCbl. That amount that I need now is quite different from 15 years ago, before lithium was part of things. After 5 years of 20 mg/day of lithium orotate my minerals have gotten very steady.

Obviously you've really been through hell. At least it sounds like you are doing way better now.

Would you mind sharing... About how long until you know whether you've taken enough potassium for the day? A few hours? Or more like 24 hrs?

Because today I've already added 200 mg to my near constant drinking of coconut water (and a high potassium diet). The last dose was 6 hrs ago. But I'm *still* constipated (I'm sure this is from the B12 shot so I'm assuming from potassium), feel twitching getting worse again, and my BP is 102/63, pulse 65 (high for me; normally less than 50), and feeling abnormally tired. So I'm pretty nervous but taking another 100 mg in two servings of coconut water. I'm not even sure that will be enough. It's 9 p.m. I've really had a printer every night waking with pretty bad spasms and low BP, high heart rate. Is it possible to take enough before bed so that the potassium doesn't drop so low overnight? It just seems worse at night.

So again my main question is how long do you need to wait, assuming normal kidney function, to be sure that the last "dose" of K is probably gone, and, if you're still having symptoms, it's probably safe to take the same amount again? And can you normally take enough at night to get you through the night?

I really feel like I'm staying almost dangerously low. I'm constantly having these symptoms, just a few hours after I drink coconut water that barely helps. So today I've tried adding more and I'm still having a hard time in the evening.

I really appreciate your sharing your knowledge. Thank you.

 

[TinaT]

Hi Tina,

The biggest problem with B-12 deficiency is more often than not it is under diagnosed and undertreated. For me and lots of others, once you start getting well, that is not the time to get lax—if you do, the symptoms will come back….too long between shots can mean that you generally don’t feel well but limp along on too little B-12. There is a facebook group with hundreds if not thousands of b12 deficient members that advocate strongly for daily injections until no further neurological issues and then every other day and then it is an individual thing but not months or even several weeks between injections. Even with all of Freddd’s improvements, he still takes B12 just not as frequent. Potassium is an issue for many B-12 deficient people and especially for those who are trying to get all the necessary cell-making items into their routine. Early on in treatment is not the only time that low potassium can rear up—-knowing the symptoms means you can do things to help. I also tried coconut water and for me—-it didn’t help quick enough which is why I chose to use both tablets and the powder.
It is wonderful news that Fredd was able to to find the missing link (Lithium) and that he has made such good progress——it gives a lot of us hope that we find the same improvements and won’t have to have such frequent injections and can stabilize our potassium needs.

Can you list the symptoms that you believe are potassium related? I think that would allow Freddd and others to help guide.

Hi Idie. Thank you for sharing.

My symptoms were palpitations that wouldn't stop at night, serious muscle spasms, low BP, high heart rate.

Now that I've at least been taking coconut water, the palpitations have gone away. But then I'm 9 days since my last shot -- in part bc this potassium thing is really bad -- I'm planning another shot tomorrow then every 7 days until the potassium seems a little better. I can't deal with those. I'm also taking 1000 mcg daily of Pure B12, seems like a good combo with hydroxy, methyl, and adeno (?) These really bad potassium symptoms got far worse when I tried two shots per week. I just can't take that risk right now.

Current symptoms include: constipation, low BP, unusual tiredness, and muscle twitching. These will all get worse on days 2 or 3 to 4 or 5, after the shot. I guess mainly days 3 & 4. I've already been to the ER and I've only had 3 shots.

I'm drinking maybe 5 servings daily of C water. I'm kinda guessing. That's just the only thing I'm drinking. That has not been enough to stop these feelings. It calms then a little. But I'm always constipated (which I wasn't before the shots started).

I also run daily in the Florida heat. So I'm losing electrolytes. I've never had a problem with potassium before these shots though.

The most concerning thing is that I'm waking up with all symptoms worse, in the middle of the night, and having to drink more C water, which aggravates reflux. Thankfully that's improving overall despite the temporary worsening but still. I don't want to need to take anything in the middle of the night, especially with calories. And I really don't want to keep drinking so many calories. That's a recipe for disaster but right now I feel like I have no choice. I'm really afraid of liberally supplementing with potassium.

So today I decided to add, twice so far, 99 mg of potassium from the trace minerals brand (they have a potassium blend that has other minerals but is highest in potassium -- I'm hoping at least the blend is safer?) But tonight, 9 pm, and the symptoms got worse again (second dose was maybe about 2 pm, before a run in the heat).

I eat a lot of potassium.

Right now, I'm drinking two more servings of C water, and added another 99 mg of potassium. I'm kinda afraid to finish drinking, yet I think that might not even be enough. I'm trying to find out how long you need to judge whether you've had enough potassium for the day. An hour? Several hours? Or 24 hrs? Like is all of the potassium from earlier today gone from my body now? So that I can assume I'll be safe drinking more again?

(So bottom line tons of C water today, plus 200 mg of potassium added earlier today, now about to add another 100 mg for a total today of 300 mg plus a lot of C water. This is my first day adding so much. Before today, I had only added a max of 99 mg and that clearly wasn't getting the job done.)

And I've been waking with really bad symptoms (same ones). Is there any way to avoid having levels dip so much overnight? If not, what do you do in the middle of the night?

I would greatly appreciate any ideas. Thank you.

 

[TinaT]

Hi Tina,

The biggest problem with B-12 deficiency is more often than not it is under diagnosed and undertreated. For me and lots of others, once you start getting well, that is not the time to get lax—if you do, the symptoms will come back….too long between shots can mean that you generally don’t feel well but limp along on too little B-12. There is a facebook group with hundreds if not thousands of b12 deficient members that advocate strongly for daily injections until no further neurological issues and then every other day and then it is an individual thing but not months or even several weeks between injections. Even with all of Freddd’s improvements, he still takes B12 just not as frequent. Potassium is an issue for many B-12 deficient people and especially for those who are trying to get all the necessary cell-making items into their routine. Early on in treatment is not the only time that low potassium can rear up—-knowing the symptoms means you can do things to help. I also tried coconut water and for me—-it didn’t help quick enough which is why I chose to use both tablets and the powder.
It is wonderful news that Fredd was able to to find the missing link (Lithium) and that he has made such good progress——it gives a lot of us hope that we find the same improvements and won’t have to have such frequent injections and can stabilize our potassium needs.

Can you list the symptoms that you believe are potassium related? I think that would allow Freddd and others to help guide.

Also I'm a little cautious on the daily B12 injections for several reasons. I've read a few books and that's not what the authors recommend. Then I looked through some studies on Reddit, and those seem really conflicting. The most I could find was that Europe recommends every other day until symptoms stop improving. Some docs in Va who specialize in B12 recommended every day for seven days, then I think weekly for ?, Then monthly. The "could it be B12?" book recommends once or twice a week, for 6-12 times, then evaluate / depends on symptoms. I think three studies were all over the place (or didn't exist).

Since I also just can't tolerate them bc of the potassium, and bc I can't possibly get more than 3 per week (and that would involve driving across town twice a week), I'm just hoping maybe I will get lucky, and my personal symptoms aren't as bad or will respond sooner.

I really can't imagine life with constantly low potassium.. I've been obsessed every hour with what low and high potassium symptoms are. This is terrible. Really bad. It doesn't seem like much of a win with B12 if this is the permanent result. I mean I know B12 is not optional but this is extremely life-altering if it doesn't either go away or at least become far less frequent. That's esp true bc I'm personally so paranoid about potassium. I hope I can get over that, if I need to.

 

[Idie]

Obviously you've really been through hell. At least it sounds like you are doing way better now.

Would you mind sharing... About how long until you know whether you've taken enough potassium for the day? A few hours? Or more like 24 hrs?

Because today I've already added 200 mg to my near constant drinking of coconut water (and a high potassium diet). The last dose was 6 hrs ago. But I'm *still* constipated (I'm sure this is from the B12 shot so I'm assuming from potassium), feel twitching getting worse again, and my BP is 102/63, pulse 65 (high for me; normally less than 50), and feeling abnormally tired. So I'm pretty nervous but taking another 100 mg in two servings of coconut water. I'm not even sure that will be enough. It's 9 p.m. I've really had a printer every night waking with pretty bad spasms and low BP, high heart rate. Is it possible to take enough before bed so that the potassium doesn't drop so low overnight? It just seems worse at night.

So again my main question is how long do you need to wait, assuming normal kidney function, to be sure that the last "dose" of K is probably gone, and, if you're still having symptoms, it's probably safe to take the same amount again? And can you normally take enough at night to get you through the night?

I really feel like I'm staying almost dangerously low. I'm constantly having these symptoms, just a few hours after I drink coconut water that barely helps. So today I've tried adding more and I'm still having a hard time in the evening.

I really appreciate your sharing your knowledge. Thank you.[/QUOTE

Hi Idie. Thank you for sharing.

My symptoms were palpitations that wouldn't stop at night, serious muscle spasms, low BP, high heart rate.

Now that I've at least been taking coconut water, the palpitations have gone away. But then I'm 9 days since my last shot -- in part bc this potassium thing is really bad -- I'm planning another shot tomorrow then every 7 days until the potassium seems a little better. I can't deal with those. I'm also taking 1000 mcg daily of Pure B12, seems like a good combo with hydroxy, methyl, and adeno (?) These really bad potassium symptoms got far worse when I tried two shots per week. I just can't take that risk right now.

Current symptoms include: constipation, low BP, unusual tiredness, and muscle twitching. These will all get worse on days 2 or 3 to 4 or 5, after the shot. I guess mainly days 3 & 4. I've already been to the ER and I've only had 3 shots.

I'm drinking maybe 5 servings daily of C water. I'm kinda guessing. That's just the only thing I'm drinking. That has not been enough to stop these feelings. It calms then a little. But I'm always constipated (which I wasn't before the shots started).

I also run daily in the Florida heat. So I'm losing electrolytes. I've never had a problem with potassium before these shots though.

The most concerning thing is that I'm waking up with all symptoms worse, in the middle of the night, and having to drink more C water, which aggravates reflux. Thankfully that's improving overall despite the temporary worsening but still. I don't want to need to take anything in the middle of the night, especially with calories. And I really don't want to keep drinking so many calories. That's a recipe for disaster but right now I feel like I have no choice. I'm really afraid of liberally supplementing with potassium.

So today I decided to add, twice so far, 99 mg of potassium from the trace minerals brand (they have a potassium blend that has other minerals but is highest in potassium -- I'm hoping at least the blend is safer?) But tonight, 9 pm, and the symptoms got worse again (second dose was maybe about 2 pm, before a run in the heat).

I eat a lot of potassium.

Right now, I'm drinking two more servings of C water, and added another 99 mg of potassium. I'm kinda afraid to finish drinking, yet I think that might not even be enough. I'm trying to find out how long you need to judge whether you've had enough potassium for the day. An hour? Several hours? Or 24 hrs? Like is all of the potassium from earlier today gone from my body now? So that I can assume I'll be safe drinking more again?

And I've been waking with really bad symptoms (same ones). Is there any way to avoid having levels dip so much overnight? If not, what do you do in the middle of the night?

I would greatly appreciate any ideas. Thank you.

Hi Tina—-it sure sounds like low potassium. Fredd has often said that if he has 3 of the symptoms from this list (below) then that usually tells him what is wrong. You have constipation, increased pulse rate, muscle issues, palpitations (which can be low B-12 and low potassium). I used to drink 4-5 containers of coconut water a day. The label said it had 600 mg of potassium which I thought would suffice. It just didn’t work for me—I suspect that is because there isn’t enough elemental potassium AND because it takes too long to make a profound enough difference. Potassium has a very short half life which means it doesn’t stick around long…especially if you are making new cells. When I mix potassium in water, I can usually tell within 15-20 minutes if that is the issue as the symptoms reduce significantly. There are those on this site who dose every 2 hours depending on symptoms. Mine varies as to frequency but it is pretty frequent throughout the day.

The nights are the worst——I hear that over and over especially the palpitations are worse at night (It is for me too, right now). I has been doing the following the last few nights and it has helped some. I drink my potassium just as I get ready to sleep. I have another glass sitting on my nightstand for middle of the night needs. My dose is 1/2 to 3/4 teaspoon of Potassium Gluconate Powder in 8 ounces of water. I also take two Pure Encapsulations Magnesium Glysinate. Magnesium helps me quite a bit.—-I also use magnesium oil because it absorbs well without causing bathroom problems I am a believer in tumeric and I also take two of those for inflammation.

Freddd’s Low Potassium List

• Group 1 – Hypokalemia (low potassium) onset. Often called “detox”. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with CyCbl (Cyanocobalamin) it is very common with MeCbl (methylcobalamin) and AdoCbl (adenosylcobalamin) and less so with HyCbl (Hydroxycobalamin).There does not appear to be a clear order of onset. The order of onset varies widely from person to person but many appear consistent for each episode for any given person. There tend to be more and more intense symptoms as it gets worse. Some people have ended up in the ER because of not recognizing the symptoms.
• 
  
• IBS – Steady constipation, Nausea, Vomiting, Paralyzed Ileum,
• Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, spasms and excruciating pain in neck muscles, waking up screaming in pain from muscle spasms in legs. Muscle weakness
• Abnormal heart rhythms (dysrhythmias), increased pulse rate, increased blood pressure, intense sudden dizzy spells correctable potentially in minutes with water with potassium gluconate for instance
• Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.

Does this help?