Managing Potassium Deficiency - Share your experience

[Idie]

BP just now 96/63. That's way too low. God I've been drinking HIGH potassium drinks. I just can't control this. I'm afraid to drink even more.

Hi Tina——the low potassium has really been miserable the last two days. The folate is driving the potassium almost beyond my control. Very rapid heart rate and scary high of blood pressure. So, had no choice but to talk to my doctor about helping with the high blood pressure and and fast heart rate. No matter how much potassium I took I could not get it down nor could I get any relief from the symptoms of low potassium. I have been at this a month and with no end in site and I’m forced to seek some help in the event this doesn’t start to turn around soon. I hope it is short term. I’m backing down on the folate….not stopping but I’m slowing down. Unfortunately that means that this is going to take longer than I had hoped. Interestingly, I had a potassium blood test today after drinking potassium every two hours all day yesterday and all night last night–result 4.5, Still having heart palpitations and significant symptoms that only potassium will relieve.

How are you doing?

 

[TinaT]

Hi Tina——the low potassium has really been miserable the last two days. The folate is driving the potassium almost beyond my control. Very rapid heart rate and scary high of blood pressure. So, had no choice but to talk to my doctor about helping with the high blood pressure and and fast heart rate. No matter how much potassium I took I could not get it down nor could I get any relief from the symptoms of low potassium. I have been at this a month and with no end in site and I’m forced to seek some help in the event this doesn’t start to turn around soon. I hope it is short term. I’m backing down on the folate….not stopping but I’m slowing down. Unfortunately that means that this is going to take longer than I had hoped. Interestingly, I had a potassium blood test today after drinking potassium every two hours all day yesterday and all night last night–result 4.5, Still having heart palpitations and significant symptoms that only potassium will relieve.

How are you doing?

Hi Idie. I'm so sorry to hear this. That is really scary. Have you considered that you may just have to cut back the dosing amount or frequency? And maybe try again with hydroxy and / or folonic acid? I hope it get this under control soon. Please keep me updated. You must be so scared.

But we're you doing well for the entire time before this latest refeeding?

Have you tried eating liver every day?

I had an absolutely terrible night last night. I drank a bunch of high potassium electrolyte drinks, which made my throat absolutely raw, and caused a gigantic, very noticeable and horrible spike in my Tinnitus volume (Tinnitus normally low but still gets bad occasionally -- and when it does, life barely worth living). I also learned that potassium gluconate is known to spike Tinnitus. That was really, really bad news.

So today I didn't exercise. I'm starting to feel shaky (5:30 p.m.)

I had my primary care today tell me that I might need to find another doctor if I won't get a psychiatric consult, because "there's no evidence that your potassium levels are low," and he has patients who get B12 shots without having any problems. He basically said the entire thing was psychosomatic. Oh also -- he was totally questioning whether I need B12 at all, even though all of my symptoms could be caused by a B12 deficiency and I think they are.)

I have been so incredibly upset today, with loud Tinnitus, and without nearly enough sleep.

He could not answer my question, which was how he could possibly know my potassium levels in the middle of the night. 🤬

 

[TinaT]

Hi Tina——the low potassium has really been miserable the last two days. The folate is driving the potassium almost beyond my control. Very rapid heart rate and scary high of blood pressure. So, had no choice but to talk to my doctor about helping with the high blood pressure and and fast heart rate. No matter how much potassium I took I could not get it down nor could I get any relief from the symptoms of low potassium. I have been at this a month and with no end in site and I’m forced to seek some help in the event this doesn’t start to turn around soon. I hope it is short term. I’m backing down on the folate….not stopping but I’m slowing down. Unfortunately that means that this is going to take longer than I had hoped. Interestingly, I had a potassium blood test today after drinking potassium every two hours all day yesterday and all night last night–result 4.5, Still having heart palpitations and significant symptoms that only potassium will relieve.

How are you doing?

By the way, I consulted with a woman who isn't a doc but very knowledgeable about B12. She said hydroxy might be a totally different experience.

That's really, really scary that you can't improve the low potassium. And I mean you can't just keep taking more and more, either.

Do you think taking less folate might help?

 

[TinaT]

Hi Tina——the low potassium has really been miserable the last two days. The folate is driving the potassium almost beyond my control. Very rapid heart rate and scary high of blood pressure. So, had no choice but to talk to my doctor about helping with the high blood pressure and and fast heart rate. No matter how much potassium I took I could not get it down nor could I get any relief from the symptoms of low potassium. I have been at this a month and with no end in site and I’m forced to seek some help in the event this doesn’t start to turn around soon. I hope it is short term. I’m backing down on the folate….not stopping but I’m slowing down. Unfortunately that means that this is going to take longer than I had hoped. Interestingly, I had a potassium blood test today after drinking potassium every two hours all day yesterday and all night last night–result 4.5, Still having heart palpitations and significant symptoms that only potassium will relieve.

How are you doing?

Also I've been wondering. Had you been mostly good since the first time you went through the refeeding? And how often were your shots in that first six weeks you said it took to feel better? And didn't you say that it came back bc you stopped supplementing? (Which, no judgment at all, I'm just trying to remember.) So basically you don't really have chronic fatigue, but rather just a hopefully limited time B12 deficiency (round 2)?

 

[Idie]

Also I've been wondering. Had you been mostly good since the first time you went through the refeeding? And how often were your shots in that first six weeks you said it took to feel better? And didn't you say that it came back bc you stopped supplementing? (Which, no judgment at all, I'm just trying to remember.) So basically you don't really have chronic fatigue, but rather just a hopefully limited time B12 deficiency (round 2)?

Hi Tina——The first time, I deteriorated rapidly over a 2 year period. Chronic Fatigue is a rather large grouping of all kinds of issues that cause debilitating symptoms. I had many of those. I went to a number of physicians and no one every thought to question my B12 status. As it turns out I have some pretty naughty genes and since my grandfather had pernicious anemia, it seemed pretty obvious. I will have this problem for life which is why I want to be very aggressive on treatment. When I went through refeeding the first time, it was intense too but the larger doses of folate were not part of the protocols back then. That has been particularly challenging. Had I stayed on the supplements and added folate over the years as this forum‘s experience with folate grew it may not have been so tough. I was pretty well for over 10 years and then really deteriorated about 10 months ago after a bout with COVID and a number of pretty bad viruses back to back. I am not sure that there really is a limited one time B12 deficiency, it will be lurking within us pretty much always.

I hope to stay on the protocol and get over the hump but am coming to the realization that this is going to be a long haul——-not embarrassed to admit that is very disheartening.

As to a physician suggesting that someone is faking a B-12 deficiency…..that is just shameful. No one would want to go through this. I had a friend you got diagnosed several years after I did and I remember her apologizing to me that she didn’t realize how bad it can make you feel. You know how that is—-until you experience it, it is hard to believe that the impacts of it can be so painful.

 

[Idie]

Also I've been wondering. Had you been mostly good since the first time you went through the refeeding? And how often were your shots in that first six weeks you said it took to feel better? And didn't you say that it came back bc you stopped supplementing? (Which, no judgment at all, I'm just trying to remember.) So basically you don't really have chronic fatigue, but rather just a hopefully limited time B12 deficiency (round 2)?

Oh, I forgot to answer your question. The first time I went through this I used sublinguals for over a year. Initially, I was given Cynocobalamin shots for 14 days and it helped but did give me any sense that it was the right treatment. I was told no more shots so I went out on my own with the sublinguals. I got better but things like my gastritis, etc never improved until I was able to get injections. This time, it looks like I won’t be better in 6 weeks as I’m already over a month into this. While I wasn’t perfect in 6 weeks, the worst of it was over in about 6 weeks and I only got better and better with very few reversals. The protocol seems much more daunting this time around, I think because the folate is so bullish.

 

[TinaT]

Hi Tina——The first time, I deteriorated rapidly over a 2 year period. Chronic Fatigue is a rather large grouping of all kinds of issues that cause debilitating symptoms. I had many of those. I went to a number of physicians and no one every thought to question my B12 status. As it turns out I have some pretty naughty genes and since my grandfather had pernicious anemia, it seemed pretty obvious. I will have this problem for life which is why I want to be very aggressive on treatment. When I went through refeeding the first time, it was intense too but the larger doses of folate were not part of the protocols back then. That has been particularly challenging. Had I stayed on the supplements and added folate over the years as this forum‘s experience with folate grew it may not have been so tough. I was pretty well for over 10 years and then really deteriorated about 10 months ago after a bout with COVID and a number of pretty bad viruses back to back. I am not sure that there really is a limited one time B12 deficiency, it will be lurking within us pretty much always.

I hope to stay on the protocol and get over the hump but am coming to the realization that this is going to be a long haul——-not embarrassed to admit that is very disheartening.

As to a physician suggesting that someone is faking a B-12 deficiency…..that is just shameful. No one would want to go through this. I had a friend you got diagnosed several years after I did and I remember her apologizing to me that she didn’t realize how bad it can make you feel. You know how that is—-until you experience it, it is hard to believe that the impacts of it can be so painful.

What a sad story. I've been sick so many times this year that I've lost count. I think possibly covid destroyed my immune system, and now I just can't recover. But I just can't imagine dealing with this for ten years. What a terrible shame. I don't think about much of anything else besides how to get better. I'm just so, so tired.

Would you mind explaining how folate is understood on this board? What has changed? I know nothing basically, other than we need folate, methylfolate is more powerful, but it's also difficult for some people (I'm one of those people). Why can't you just take a reasonable dose every day? Why do you need massive doses, especially considering how that's making you feel?

I had my last methyl B12 shot 4.5 days ago. I can't do another one without trying hydroxy. I'm also taking folonic acid. I know those may not work as well, but I guess some people get lucky? I know some people don't, and that's very scary.

I cannot handle this potassium situation. On top of the terror, both low potassium and the supplement itself are making my tinnitus much worse. I can't even express how much I can't handle that. And low potassium makes reflux, my other huge problem, also much worse. Plus the fear that I'll harm my heart or kill myself. I just really can't handle any of that.

One question I'm really wondering: if you stop methyl B12 (and methylfolate) completely, do you think the potassium would then go away?? Or like have we flipped a switch that could be permanent or can't be flipped back? I'm so upset with that thought that I can't even focus on much of anything in life.

Also do you drink enough potassium to stop constipation and the muscle twitching? And the extreme tiredness? And how long does that take (30 min? An hour?)

I have been taking trace minerals "potassium" version. It has 99 mg of potassium, but around 60 of sodium (and some magnesium, calcium, and other trace minerals). (Tonight I just finished two doses -- so almost 200 mg, and I'm nervous.) Do you think that's just not going to help bc the potassium will stay unbalanced?

And I wonder whether the shot itself could be causing like the leg muscle twitch.

I'm sorry I've asked so many questions. I'm trying to stay awake, so tired from low potassium..

Again I will write more later. It was great to hear your story although I'm sorry you've been through so much. That's a tragedy.

I just can't help but think maybe you should try again on hydroxy and folonic acid. I've had that recommended to me. But still wondering for both of us -- can we fix the potassium? Did you have the potassium problem when you went through this before?

Thank you for your wisdom and friendship!

 

[linusbert]

did any of you guys finally did the glucose or whey protein test? just to see if it is indeed potassium.
just because potassium might help with some symptoms doesnt mean its the reason it actually is the culprit.
potassium induces a insulin release in the body, it has blood sugar LOWERING effects, especially for sensitive people. tina was very heavy sportsman for decades - that suggests insuline sensitivity.
https://diabeteslibrary.org/insulin-and-potassium/ (forget the diabetes part, and focus on the physiology of potassium and insulin)

for me i thought at first it was potassium, because potatoes helped me a lot with all symptoms. then i did electrolyte drinks with potassium and glucose, helping me also a alot. then i just did glucose... still did help me. and then i realized, even whey protein did help me a lot.
i finally came to realize that it was the insulin spike which caused the improvement. i get the improvement from raw insulin shots without anything else.

what could happen for you guys, you take potassium, your body releases insulin to push the potassium away (homeostasis! excess potassium is eliminated by insulin and over urin!).
you feel a bit better because of insulin... but then you get side effects of hypOglycemia because too low sugar in the body.
if this is the case you guys are shooting your selfs in the foot with excess potassium , because you start a vicious cycle of hypoglycemia episodes. ... which could be easily fixed with less potassium and some food or sugar.
also you risk to actually get hypERkalemia symptoms.

freddd said his blood levels of pot even at best times barely scratched 4.0 ... a value of 4.5 indeed suggests that potassium might not be the actual problem.

also it mustnt be insulin. it could be any other cofactor as well. dont get to fixed up on the potassium. always try and research.

 

[TinaT]

did any of you guys finally did the glucose or whey protein test? just to see if it is indeed potassium.
just because potassium might help with some symptoms doesnt mean its the reason it actually is the culprit.
potassium induces a insulin release in the body, it has blood sugar LOWERING effects, especially for sensitive people. tina was very heavy sportsman for decades - that suggests insuline sensitivity.
https://diabeteslibrary.org/insulin-and-potassium/ (forget the diabetes part, and focus on the physiology of potassium and insulin)

for me i thought at first it was potassium, because potatoes helped me a lot with all symptoms. then i did electrolyte drinks with potassium and glucose, helping me also a alot. then i just did glucose... still did help me. and then i realized, even whey protein did help me a lot.
i finally came to realize that it was the insulin spike which caused the improvement. i get the improvement from raw insulin shots without anything else.

what could happen for you guys, you take potassium, your body releases insulin to push the potassium away (homeostasis! excess potassium is eliminated by insulin and over urin!).
you feel a bit better because of insulin... but then you get side effects of hypOglycemia because too low sugar in the body.
if this is the case you guys are shooting your selfs in the foot with excess potassium , because you start a vicious cycle of hypoglycemia episodes. ... which could be easily fixed with less potassium and some food or sugar.
also you risk to actually get hypERkalemia symptoms.

freddd said his blood levels of pot even at best times barely scratched 4.0 ... a value of 4.5 indeed suggests that potassium might not be the actual problem.

also it mustnt be insulin. it could be any other cofactor as well. dont get to fixed up on the potassium. always try and research.

Your knowledge of physiology is seriously impressive.

I haven't had the test.

FWIW I asked doc for diabetes test today and he basically rolled his eyes. However he also didn't agree with potassium. My level was 4.1 after ingesting a lot of potassium, both times.

(I need to get an RBC potassium, however I'm not sure how accurate those might be.)

You have very slightly increased my interest just bc of any possibility that we could be making things worse.

But I still have to say that I think all signs point to potassium. You haven't addressed the BP issue, which is huge. And you'll not convince me that mine is fine (sorry) bc it's been both too high and too low, for me. Also the very, very noticeable constipation, which improves with potassium (however, I still haven't taken enough potassium to fully resolve that; I'm getting backed up and more bloated). You can't convince if you ignore what I'm sure are effects from the shots.

And the other thing... Many guides online and that study that I shared above... Focus on potassium. The docs in the refeeding study, giving B12 and iron, had the guy on a high potassium diet bc of the known risk of hyperkalemia. There was another medical guide that said constant potassium monitoring is needed. So this is a known complication -- and I haven't seen any after extensive reading that have mentioned glucose as a risk after the shits.

Also I'm still kind of an athlete. I haven't stopped lonh enough for that to be past tense.

I'm not sure how much potassium can increase after ingesting potassium.

As far as other cofactors, I can only research at much. But this is a very well known issue that seems to fit. And these guides don't mention other issues as needing monitoring on the same level.

That all being said, if doing the test didn't involve about 5 or 6 products that my husband night, that required me to learn how to use, then I probably would have done it, just to make you happy. 😁 Is there a blood test like at the self pay lab? Something simple wood be preferred. I can't do the glucose test at night, which is when this is the worst for me. I'll try if I have a milder reaction during the day.

I have ordered a micronutrient panel. But that was fairly early in this process. Maybe around the second shot. Still, I should find out soon if, at least then, I had any other deficiencies.

I'm also taking quite a few other known cofactors. I'm not sure whether the amounts are correct, based on needs. But i don't think it's possible to know exactly what I might need when taking numerous different vitamins daily. I'm sure nothing could ever be perfect.

That all being said, I am really glad you shared and persisted. I learn something new and interesting from you, every time you post. You should be working with patients or in a lab or something!

 

[TinaT]

One thing about which I do wonder is anxiety. And I think possibly the B12 increase itself possibly could cause the muscle twitching in my legs. However anxiety would not explain the fairly serious BP drops. I'm not sure about the noticeable increased heart rate. I might be forgetting something.

But there's no test for anxiety and I really don't think that's what it is. However that possibly is one big reason that I'm not comfortable taking high doses of potassium, other than a few times as part of an electrolyte mix.

Anything that I consider, in my mind, has to be able to explain all of the symptoms. I don't think I've just randomly started having these problems. The shots caused them.

 

[TinaT]

I just ordered another blood glucose monitor, just to be sure. Hopefully it will not be too complicated to figure out, esp since I really don't think this is the problem -- again bc it doesn't address all of the symptoms. And I just looked up the symptoms again. Some do fit, but several others don't.

 

[linusbert]

FWIW I asked doc for diabetes test today and he basically rolled his eyes. However he also didn't agree with potassium. My level was 4.1 after ingesting a lot of potassium, both times.

dont ask for diabetes! you are sporty and slim. normal doctors are morons they do not even know the official symptoms for diabetes.
they say only fat people are diabetics. i was BMI 19 and already insulin resistent! and the doctor rolled his eyes as well...
thou i do not believe you have any diabetes. i believe you have rollercoaster glucose levels in blood.
this is completely different from diabetes. diabetics have too much glucose on average.
there are problems with blood glucose levels with are not diabetic.
my girlfriend has those kinda problems. and she knows a few ex-anorexics which also have this kinda weird blood sugar drops. they constantly slide into hypoglycemia.. they have blood levels of sugar where normal people would be in a coma. need to constantly eat at night to stabilize it again.
i am not saying you have that either, just making a example what can happen on a blood sugar level - besides diabetes.


btw, the correct test for diabetes is a OGTT on empty stomach in the morning. where glucose and insulin/c-peptid levels are measured in intervals at like 0, 30, 60, 120, 240 minutes. people can have normal blood glucose levels and a low A1C but already be insulin resistent (pre diabetic) - i was.
but again, i doubt you have that. i dont think you need to do a OGTT. especially as you have to drink 75g glucose/fructose on an empty stomach. YIKES
the usual test for blood HBA1C levels and morning glucose in serum are completely useless for you. only severe diabetics have those elevated. you need to measure yourself in the acute sitation what the current blood sugar of yours is.


the best thing is you get one of those flash glucose monitors like this one https://freestylelibre.com/ - or whatever products u have in USA available (dexcom maybe?). this freestylelibre costs like 70$.
you plug it into your arm, it is there for 2 weeks and records your blood glucose every second. you also can check your current blood glucose on your handy.
you only need to do this once, to get a understanding how your glucose levels develop under certain conditions.. if there is a connection with your symptoms.


any high dose vitamin especially b12, fcks sensitive bodies up. you can have any symptoms just by this.
also then there could be overmethylation , axiety is typical for this... methyl trap and a zillion other things related to it. and of course potassium.


i am not saying , that you do not have no potassium issues.
just saying, keep your eyes and mind open to different possibilities. you still can follow the potassium route while checking for other things at the same time.


the sad thing i discovered, there are things that help me on certain symptoms, e.g. diabetes, but make other things worse like muscle weakness... or asthma. this whole situation is insanity inducing. everyone with cfs for 10+ years going through this and is not insane should get a medal. this is the ultimate test in life.


btw your primary care doc knows nothing about diabetes. he better shut up.

 

[TinaT]

Another thing. Fredd said I think 99% of the time, the problem is either folate or potassium. I'm too scared to take folate later in the day (bc of any possible effect on sleep).

That's interesting about his potassium levels. 🤔

My levels have been 4.1 when tested, both after ingesting a lot of potassium in the preceding 24 hrs. So I'm not sure.

 

[TinaT]

You plug it into your arm for two weeks??!! Like in a vein or ???

That's all interesting stuff again. Thanks for explaining. I don't want to wear you out!

The methylation thing is really confusing.

 

[linusbert]

You plug it into your arm for two weeks??!! Like in a vein or ???

yes, not a vein , its subcutaneous.
watch this

 

[TinaT]

yes, not a vein , its subcutaneous.
watch this

Thanks!! That's pretty cool. I'll order one soon. You know I still don't think that's what it is. But I'll get the data and owe you an extra huge thanks if it is. If it's not, I still owe you thanks because you are being a friend and trying to help me despite all my stubbornness.

 

[TinaT]

In the meantime, I'm still gonna proceed like this is potassium, and try to figure that out. Except if it happens in the daytime, I'll try eating something first (however food has potassium and the problem has been that I don't want more calories like I just ate a little while ago, so I don't want to drink C water or eat more, sometimes.)

 

[TinaT]

Just did my first self injection of hydroxy. It was 2 mg. I hope that's the same amount I've been receiving! I wasn't sure. Now we'll see if this helps as much as it methyl. 🙏

If it doesn't, then I'm going to try lower dose but maybe daily or EOD methyl.

Mix and match also a possibility.

I need to figure out something better for my iron

 

[linusbert]

I need to figure out something better for my iron

lactoferrin?

Just did my first self injection of hydroxy. It was 2 mg. I hope that's the same amount I've been receiving! I wasn't sure. Now we'll see if this helps as much as it methyl. 🙏

keep posted but do not mix too much or you dont know what changed.

 

[TinaT]

lactoferrin?


keep posted but do not mix too much or you dont know what changed.

I think I'll know by tonight and tomorrow whether there's noticeable improvement in my reflux, which has happened with every methyl shot so far. And I'll definitely wait through days 3-5 bc that's when the potassium hell is at its worst. What I'll do next week -- I'm not sure. It's going to SUCK for the entire week if I don't continue improving. Bc once the methyl shots wear off -- my reflux and Tinnitus both start going crazy. That would be a week of total hell. 😫

I did order lactoferrin (on your suggestion)! I actually had that out, thinking about it, yesterday and this morning. But I want to read more about it. And I don't really like to add multiple new things.

One bad thing is that I drank an electrolyte drink today (with relatively high potassium). Even though I added it to alkaline water, it has malic acid, and totally burned my throat. 😭 My throat is still hurting from that.

I also picked up a prescription for potassium. But I'm nervous about that making my tinnitus worse (which, again -- NOTHING is worse and life isn't worth living, not even a little worth living (okay maybe a little bit not much)).

I skipped my workout yesterday. I'm tempted to try again today. Feeling decent although I had some challenges last night. Drinking trace minerals potassium + melatonin (2 am) + Zolpidem at 6 :30 am together gave me halfway decent sleep. Woke up at 9:40. Not great but it will do.

@linusbert I hope you enjoy your day! Thank you again for the suggestions! I keep thinking about your situation and just really wish there were something you could be trying to start improving.