Managing Potassium Deficiency - Share your experience

[Idie]

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!

Hi Tina——Friday was a pretty tough day so I’m late in replying. The thing that is different this time as to the folate is that we may have been taking too little all a long. Yes, potassium was challenging last time too. I found a pretty small dose in water sustained me once I got far enough along in my protocol and healing.

I think I may have figured out part of my problem——-the injections could be weakened as a result of poor handling (too much light during the mixing of the methyl). Freddd has said he doubts there are very many “excellent” methyl shots out there. The Methyl sublinguals have improved in a number of ways——high doses and a few new kinds.

I really upped my sublinguals and I could definitely tell. So frustrating to go through this and not be able to count on the expensive shots.

I have all kinds of tingling happening once I took big doses of the sublinguals. That is always an indicator for me that I am getting penetration of the B12. Nerves waking up if you will. Twitches are part of that too.

As to stopping the methyl and its impact on potassium. I know numbers of people who are on Cyno and they still have the potassium need. I really think a good quality, deep penetrating B12 is going need potassium supplementation.

Today was such a relief once I figured out the sublingual vs. injection thing.

 

[chrism]

Lots of concern in the last few pages about potassium and glucose.

I was having a lot of issues that mirrored poor blood sugar/insulin handling. It's gotten a lot better since starting multivitamins.

Coconut water always seems to help when I'm having muscle twitching. I don't know about how it affects insulin or glucose, but it seems to help more than hurt so far. However, I'm not sure if it helps with body aches (torso). Still trying to figure that out.

One thing that I am trying to understand is if amino acids play a larger role in all of this. I've watched videos where people with MTHFR often have amino acid imbalances when taking micronutrient tests. B vitamins play a role with some amino acids (B6), but I'm wondering if there is a lot here that still hasn't been uncovered.

For example, I did a micronutrient test and was low in almost all b vitamins (not B12). I am also REALLY low in glutamine and Isoleucine. Isoleucine has research showing it is very involved in blood glucose. I am still learning, but it made me think that maybe this could be more common with others.

Just some thoughts. I'm trying to work with a dietician. I'm becoming more interested in trying to correct my Isoleucine (glutamine had side effects) but since I'm peeing out amino acids we need to rule out other concerns first.

Anyways, I'm wondering if protein powders would help with amino acid imbalances. I've seen conflicting info, some concern over them making you pee out b vitamins, others saying it helps with glucose/insulin.

 

[TinaT]

Hi Tina——Friday was a pretty tough day so I’m late in replying. The thing that is different this time as to the folate is that we may have been taking too little all a long. Yes, potassium was challenging last time too. I found a pretty small dose in water sustained me once I got far enough along in my protocol and healing.

Hi Idie -- I have been wondering what happened to you all day. Your post sounded like you were in an emergency situation. I'm glad you figured out what you think is different. And I hope that means you have a plan and, most importantly, are feeling better.

I have a few burning questions for you.

--do you have any recollection how long before your potassium was under control? And then did you forever need that low dose? That really scares me given the active lifestyle that's just a huge part of my identity really (and joy). If I'm not back to normal as far as electrolytes, that's going to be over. Plus, the potassium seriously aggravates my Tinnitus, something that, after two years of complete hell, was finally better and not bothering me before the shots. That has gone completely haywire. And potassium makes it worse. That's life isn't worth living category. It's almost impossible for me to enjoy anything with loud Tinnitus. I think the B12 has actually activated that nerve (making the sound louder), because during the first two days after each shot -- the sound has been quieter than ever. But I can't handle the effect of the methyl bc of intense potassium. And the hydroxy has been really bad for my Tinnitus (unlike the methyl). I'm in a desperate bind and have cried and cried tonight.

--I've really been wanting to ask you this. Do you remember when you healed in 6 weeks, how often did you receive the shots? Every other day or once or twice a week?

-- do you think you're needing more potassium bc really you need more folate or better B12? That's a real frustration with the quality. I received a script from a compound pharmacy. They sent me methyl in a cloudy jar. I guess that isn't ideal? I can't imagine going further with that. And I don't think I can handle the sublinguals bc of my reflux / mouth soreness. I can't handle most sublinguals bc of the acidity. I would be glad to share the compound pharmacy info if you're interested. They are local to me but they ship everywhere.

--when people say "it gets worse before it gets better," how much worse is normal? I mean I'm trying to endure but I'm a LOT worse. I'm trying to decide if i could be flipping a permanent switch for the negative, or just going through a somewhat normal reaction. The Tinnitus is really a tough unique problem bc too much of any drug can cause permanent damage -- so that will always be something I have to consider. Like I can't risk needing blood pressure or heart rate medication, if I can help it at all, because there is a serious risk that would make my Tinnitus worse. I make every medical decision with my Tinnitus in mind. But besides the Tinnitus -- is my experience normal for people who eventually improve? And again how much worse are we talking??

I'm sorry to ask so many questions. My biggest one is the second one, if you're busy. And again that's how often did you receive shots during your first 6 week protocol?

Again I'm glad to hear that you are doing relatively well. Just sorry any of us have to go through this pain and suffering.

 

[chrism]

My understanding is the potassium is only needed until your cells are at normal levels and happy. You would only need to permanently supplement if your lifestyle requires more potassium then your diet gives you. I'm pretty sure a lot of athletes just adjust their diet to their activity.

When you are sick/malnourished you have below optimal levels of all kinds of things. Potassium is in all body tissue and required for cell function. How long you need it really depends. Fixing malnutrition takes 3-6 months usually but can be as long as 1 year. I've read people stating that after 3 months they felt much better but still needed extra potassium, however, at a reduced amount.

When I started this I had new and old symptoms come back and get worse. Freddd has his theories on this. One was my hearing would lose frequencies briefly (very short, minute or less). That no longer is happening (4 weeks on b vitamins). However it might come back. It felt to me like my body was moving things around which can give temporary side effects, others think it means you need to correct a deficiency.

B12, from my understanding, is what pushes potassium and other nutrients into the cell. It is why Rich preferred Hydroxocobalamin. He was concerned with all of the side effects of MeCbl/AdoCbl since they are so effective, to the point that some struggle with side effects/deficiencies more extreme than what Hydroxocobalamin did. The potential issue here is your body needs to process Hydroxocobalamin more. Freddd didn't seem to tolerate Hydroxocobalamin well and doesn't like it. So it may be a little based on genetics, don't know. I've been using a mix of AdoCbl and Hydroxocobalamin and for me it has been "softer".

I'm not doing an active protocol because it was too much for me. I'm doing a slow approach where I don't constantly adjust dosing. On the active protocol I had a harder crash and I was not okay with it. However the active protocol seems to have more profound results, but I'd rather try it again when I'm less sick.

I'm still not healthy but I think I'm no longer going downhill. Lots of ups and downs but I'm better than 3 weeks ago. Who knows though, I'm still expecting months of this rollercoaster and hopefully it turns out well.

 

[Idie]

Are you referring here to folate or potassium? I'm trying to deal with water weight gain.

I believe he is referring to potassium

Hi Idie -- I have been wondering what happened to you all day. Your post sounded like you were in an emergency situation. I'm glad you figured out what you think is different. And I hope that means you have a plan and, most importantly, are feeling better.

I have a few burning questions for you.

--do you have any recollection how long before your potassium was under control? And then did you forever need that low dose? That really scares me given the active lifestyle that's just a huge part of my identity really (and joy). If I'm not back to normal as far as electrolytes, that's going to be over. Plus, the potassium seriously aggravates my Tinnitus, something that, after two years of complete hell, was finally better and not bothering me before the shots. That has gone completely haywire. And potassium makes it worse. That's life isn't worth living category. It's almost impossible for me to enjoy anything with loud Tinnitus. I think the B12 has actually activated that nerve (making the sound louder), because during the first two days after each shot -- the sound has been quieter than ever. But I can't handle the effect of the methyl bc of intense potassium. And the hydroxy has been really bad for my Tinnitus (unlike the methyl). I'm in a desperate bind and have cried and cried tonight.

--I've really been wanting to ask you this. Do you remember when you healed in 6 weeks, how often did you receive the shots? Every other day or once or twice a week?

-- do you think you're needing more potassium bc really you need more folate or better B12? That's a real frustration with the quality. I received a script from a compound pharmacy. They sent me methyl in a cloudy jar. I guess that isn't ideal? I can't imagine going further with that. And I don't think I can handle the sublinguals bc of my reflux / mouth soreness. I can't handle most sublinguals bc of the acidity. I would be glad to share the compound pharmacy info if you're interested. They are local to me but they ship everywhere.

--when people say "it gets worse before it gets better," how much worse is normal? I mean I'm trying to endure but I'm a LOT worse. I'm trying to decide if i could be flipping a permanent switch for the negative, or just going through a somewhat normal reaction. The Tinnitus is really a tough unique problem bc too much of any drug can cause permanent damage -- so that will always be something I have to consider. Like I can't risk needing blood pressure or heart rate medication, if I can help it at all, because there is a serious risk that would make my Tinnitus worse. I make every medical decision with my Tinnitus in mind. But besides the Tinnitus -- is my experience normal for people who eventually improve? And again how much worse are we talking??

I'm sorry to ask so many questions. My biggest one is the second one, if you're busy. And again that's how often did you receive shots during your first 6 week protocol?

Again I'm glad to hear that you are doing relatively well. Just sorry any of us have to go through this pain and suffering.

Hi Tina

I used sublinguals and was better in 6 weeks. The shots came much later (about a year) after the initial 6 weeks. Even with the shots I went through an additional start up phase (only about a week). The nice thing was that I knew I was getting better so the motivation was part of the psychology for me. It is hard to see that when you are miserable…..even now. The need for potassium was reduced but I found out later I always needed more than I was going to get in my diet. 1/4 tsp of the powder in glass of water a couple of times a day.

The tinnitus was the worst. My ears rang so loud sometimes, it felt like it drowned out everything. That went away after a couple of months. Importantly, symptoms continued to improve—it was not like everything that was wrong just stopped overnight. The 6 week timeline that I refer to was that I was enough better in 6 weeks that I was sleeping better and generally feeling better, and symptoms continued to improve for another 4-5 months. I was so ill the first time that I literally thought I was dying so when I started to get better 6 weeks in, it was such a relief.

Acceptance of this rotten hand that we have been dealt is the hardest part. It is a period of grief I think. That said I have seen the turn around so I know it exists although this time is harder and it appears it is going to be longer. I’m trying to wrap my head around that. I am beginning to doubt comments like “you can be better in weeks”—-honestly now, that could be 6 weeks or 52 weeks. The folate is the real challenge this time. I had to slow down, it was getting out of control (the potassium) so much so that I could not manage it. As I write this, I am trying to figure out how to soften the impact so I can continue the protocol.

 

[Idie]

My understanding is the potassium is only needed until your cells are at normal levels and happy. You would only need to permanently supplement if your lifestyle requires more potassium then your diet gives you. I'm pretty sure a lot of athletes just adjust their diet to their activity.

When you are sick/malnourished you have below optimal levels of all kinds of things. Potassium is in all body tissue and required for cell function. How long you need it really depends. Fixing malnutrition takes 3-6 months usually but can be as long as 1 year. I've read people stating that after 3 months they felt much better but still needed extra potassium, however, at a reduced amount.

When I started this I had new and old symptoms come back and get worse. Freddd has his theories on this. One was my hearing would lose frequencies briefly (very short, minute or less). That no longer is happening (4 weeks on b vitamins). However it might come back. It felt to me like my body was moving things around which can give temporary side effects, others think it means you need to correct a deficiency.

B12, from my understanding, is what pushes potassium and other nutrients into the cell. It is why Rich preferred Hydroxocobalamin. He was concerned with all of the side effects of MeCbl/AdoCbl since they are so effective, to the point that some struggle with side effects/deficiencies more extreme than what Hydroxocobalamin did. The potential issue here is your body needs to process Hydroxocobalamin more. Freddd didn't seem to tolerate Hydroxocobalamin well and doesn't like it. So it may be a little based on genetics, don't know. I've been using a mix of AdoCbl and Hydroxocobalamin and for me it has been "softer".

I'm not doing an active protocol because it was too much for me. I'm doing a slow approach where I don't constantly adjust dosing. On the active protocol I had a harder crash and I was not okay with it. However the active protocol seems to have more profound results, but I'd rather try it again when I'm less sick.

I'm still not healthy but I think I'm no longer going downhill. Lots of ups and downs but I'm better than 3 weeks ago. Who knows though, I'm still expecting months of this rollercoaster and hopefully it turns out well.

Hi Chrism,

How sick were you when you began the B-Vitamins? Were you homebound or were you semi functional?

 

[TinaT]

The folate is the real challenge this time. I had to slow down, it was getting out of control (the potassium) so much so that I could not manage it. As I write this, I am trying to figure out how to soften the impact so I can continue the protocol.

Thank you for explaining your prior experiences. I've read several differences of opinion on folonic acid. Have you thought about trying that? Also, at least so far, hydroxy has been slightly easier but not as extreme as methyl, as far as potassium. And I've also seen those in the B12 communities (kind of the experts including the doc who created the Seeking Health line) recommend hydroxy and folonic acid. Maybe just try them? My theory is that even if the relief is slower, it's still better than the strongest potassium draw down. I still need potassium so something must be happening. And have the twitches just not as strong. However, Fredd says folonic acid causes water weight gain (and impairs healing). And I'm dealing with the water weight gain right now -- trying to figure out how to stop that. That doc also insists that glutathione is essential to tolerating methylated vitamins. He warns strongly against ignoring his advice on that issue.

**Btw I haven't made a decision about whether to continue hydroxy or go back to methyl (or do a combo). Tonight will be the third night after hydroxy. That's usually the worst night after methyl. So I'm waiting to see. And also monitoring my symptoms. I felt better for the first two days after methyl, as far as all of my deficiency symptoms. But then the improvement turned downward and the low potassium symptoms started around the third night. So I'm not sure.

I hope you figure something out soon Idie. 🤗

 

[TinaT]

@Idie @chrism

Below is an excerpt from a private message I wrote, which I wanted to share publicly in case anyone might benefit or have thoughts or comments. (Normally I would never share private info but this is all from me and nothing personal as far as the person on the receiving end);

Thanks. That was really helpful. It's frustrating that they disagree on a few things including glutathione and folonic acid. I've received advice from those outside the CFS community, but in the B12 community, to take both hydroxy and folonic acid. Plus the doc who created the popular Seeking Health vitamin line insists that having electrolytes straight, and taking glutathione, are both essential *before* taking anything methyl. He warns strongly against not following his advice on those two points -- and says many people have a hard time recovering when they ignore that advice. He really seemed to be speaking from experience. Then you have Fredd warning people not to take glutathione (plus folonic acid, which Seeking Health sells as an easier to tolerate form of folate to support methylation). Fredd also basically says that both of those will cause harm and deterioration. I really wish he shared sources for his theories. However, so far his warnings / advice align with my experiences on a few issues like potassium symptoms (just as an example). But his advice on other issues is inconsistent with the advice of others who also have a lot of experience. So basically this leaves me feeling very stuck and always worried.

The folonic acid thing is a big deal bc he says that it causes water weight gain. And that's what I'm experiencing (improved some after stopping the coconut water, but not enough), after not too long ago starting folonic acid. But methylfolate is really bad for me. I mean the symptoms are miserable. I guess I could tolerate them if I knew they were causing me to heal and would go away within a few weeks. But it's pretty bad.

Then with glutathione -- I really wonder whether that would help. And with that in particular -- I want to know Fredd's source.

Thanks again for sharing those. At least I can see that there are other theories. Still leaves me not knowing who is right though, which really sucks. 🤷🏻‍♀️

 

[TinaT]

@Idie

Would you mind sharing: about how much water do you use in your bedtime / overnight 1/4 tsp potassium solution? And how quickly do you drink it? I've been worried that if I drink too fast, my levels will be shocking to my heart or something. But then sometimes I just want to drink it down and go back to sleep! Like right now 😅

 

[TinaT]

The shots came much later (about a year) after the initial 6 weeks. Even with the shots I went through an additional start up phase (only about a week).

Do you remember the frequency of your shots? I guess there is no way to compare the frequency on your first six weeks with sublinguals (to shots).

The tinnitus was the worst. My ears rang so loud sometimes, it felt like it drowned out everything. That went away after a couple of months

I have a very long history with Tinnitus. Or actually only 3 years but extensive knowledge. I've seen several experts, had ear surgery (major surgery), and have seen an ENT every two weeks for about 3 years. And of course I've read everything bc that was completely destroying my life before it started improving. (which took about 2 years living with catastrophic Tinnitus volume). My Tinnitus from a ruptured eardrum had improved a lot. But never fully healed like it should have, after the surgery. Then about 2 months before I discovered this B12 issue (about 3 months ago), my Tinnitus volume started dramatically increasing again, even though I wasn't doing anything differently, along with other B12 deficiency symptoms. That was actually about when I stopped my only remaining B12 source, which was fortified soy milk.

I'm not sure what is always causing the increase now. In my view, sometimes it could be the cochlear nerve "waking up" with the B12 shots. And that would be fine and, based on what I know, likely to calm down if the nerves continue to heal. But I know that sometimes it's also the potassium -- too much or too little will make Tinnitus worse (true for any electrolytes). I know this is sometimes the cause bc drinking potassium when the Tinnitus is loud makes it better (and drinking too much potassium makes it worse). Lots of things every day can affect Tinnitus. I have learned to be very aware of all likely culprits and to improve anything I can. Many medications can cause or worsen Tinnitus. Also loud sound exposure. I'm aware of these issues on a nearly constant basis, and can usually improve my Tinnitus by modifying my behavior. That stopped always being true about 3 months ago. I think B12 deficiency was making it worse and that I couldn't control. However after each shot besides the hydroxy, my Tinnitus got really quiet for a couple of days, then went up and down until the next shot. But quieter than I've heard it since before the surgery. I'm sure B12 was an issue.

But with potassium, when the volume goes up or down lately, I can tell that I need more potassium. In that case, with too much or too little potassium, that can damage the hair cells in the ear and become permanent. That is a serious serious risk from low potassium if that is happening, to be avoided at ALL costs. I mean short duration then back to baseline is probably fine for most people (everyone is different). But I would be very concerned if that were ongoing. And that's one huge reason that I will not do any protocol that requires extremely high doses of potassium. Even if that's what your body otherwise needs, high doses of potassium are a risk for causing permanent very loud tinnitus. You absolutely do not want that situation.

Source regarding tinnitus + potassium (I've met with this guy several times before; he is not a doctor but has written several well-researched books about Tinnitus; he has profound hearing loss and tolerable volume tinnitus himself):

https://hearinglosshelp.com/blog/potassium-gluconate-and-hearing-loss/

 

[Idie]

Thank you for explaining your prior experiences. I've read several differences of opinion on folonic acid. Have you thought about trying that? Also, at least so far, hydroxy has been slightly easier but not as extreme as methyl, as far as potassium. And I've also seen those in the B12 communities (kind of the experts including the doc who created the Seeking Health line) recommend hydroxy and folonic acid. Maybe just try them? My theory is that even if the relief is slower, it's still better than the strongest potassium draw down. I still need potassium so something must be happening. And have the twitches just not as strong. However, Fredd says folonic acid causes water weight gain (and impairs healing). And I'm dealing with the water weight gain right now -- trying to figure out how to stop that. That doc also insists that glutathione is essential to tolerating methylated vitamins. He warns strongly against ignoring his advice on that issue.

**Btw I haven't made a decision about whether to continue hydroxy or go back to methyl (or do a combo). Tonight will be the third night after hydroxy. That's usually the worst night after methyl. So I'm waiting to see. And also monitoring my symptoms. I felt better for the first two days after methyl, as far as all of my deficiency symptoms. But then the improvement turned downward and the low potassium symptoms started around the third night. So I'm not sure.

I hope you figure something out soon Idie. 🤗

Interesting——-Freddd would tell you potassium intensity is usually 3 days after you have added something. Sounds like what you are describing as to the 3rd day after the shot being the worse. I did consider trying Folinic but decided not to because I do know from past experience that I tend to be similar to Freddd as far as symptoms and many times when I have not followed that “experience” I have paid the price. I’m trying to stay with what works—-I’m in it for the long game if I can get through this dreadful start up. I have read about so many disasters with glutathione that I personally would never risk it. I also have the strong twitch’s or jerks as I describe them. They have been very pronounced the last 3 days—-happens at least a dozen times a day. Just has to be nerves coming alive.

 

[Idie]

Do you remember the frequency of your shots? I guess there is no way to compare the frequency on your first six weeks with sublinguals (to shots).


I have a very long history with Tinnitus. Or actually only 3 years but extensive knowledge. I've seen several experts, had ear surgery (major surgery), and have seen an ENT every two weeks for about 3 years. And of course I've read everything bc that was completely destroying my life before it started improving. (which took about 2 years living with catastrophic Tinnitus volume). My Tinnitus from a ruptured eardrum had improved a lot. But never fully healed like it should have, after the surgery. Then about 2 months before I discovered this B12 issue (about 3 months ago), my Tinnitus volume started dramatically increasing again, even though I wasn't doing anything differently, along with other B12 deficiency symptoms. That was actually about when I stopped my only remaining B12 source, which was fortified soy milk.

I'm not sure what is always causing the increase now. In my view, sometimes it could be the cochlear nerve "waking up" with the B12 shots. And that would be fine and, based on what I know, likely to calm down if the nerves continue to heal. But I know that sometimes it's also the potassium -- too much or too little will make Tinnitus worse (true for any electrolytes). I know this is sometimes the cause bc drinking potassium when the Tinnitus is loud makes it better (and drinking too much potassium makes it worse). Lots of things every day can affect Tinnitus. I have learned to be very aware of all likely culprits and to improve anything I can. Many medications can cause or worsen Tinnitus. Also loud sound exposure. I'm aware of these issues on a nearly constant basis, and can usually improve my Tinnitus by modifying my behavior. That stopped always being true about 3 months ago. I think B12 deficiency was making it worse and that I couldn't control. However after each shot besides the hydroxy, my Tinnitus got really quiet for a couple of days, then went up and down until the next shot. But quieter than I've heard it since before the surgery. I'm sure B12 was an issue.

But with potassium, when the volume goes up or down lately, I can tell that I need more potassium. In that case, with too much or too little potassium, that can damage the hair cells in the ear and become permanent. That is a serious serious risk from low potassium if that is happening, to be avoided at ALL costs. I mean short duration then back to baseline is probably fine for most people (everyone is different). But I would be very concerned if that were ongoing. And that's one huge reason that I will not do any protocol that requires extremely high doses of potassium. Even if that's what your body otherwise needs, high doses of potassium are a risk for causing permanent very loud tinnitus. You absolutely do not want that situation.

Source regarding tinnitus + potassium (I've met with this guy several times before; he is not a doctor but has written several well-researched books about Tinnitus; he has profound hearing loss and tolerable volume tinnitus himself):

https://hearinglosshelp.com/blog/potassium-gluconate-and-hearing-loss/

Hi Tina—-

As to my frequency of shots, I did a 10 mg. Methylcobalmin shot everyday. Over time I was able to do every other day BUT it always caught up to me over the long haul. This darn B12 thing is so sneaky. I think I read something from Harvard about how B12 deficiency sneaks up on you with you not even knowing it and then bam. Same is true with treatment (get lax and it will almost certainly sneak up on you again). My personal experience and many others is that the deficiency was there for a long time but a) the symptoms seemed minor at the time b) we didn’t know anything about a B12 deficiency. Oh, how I regret not knowing—-could have saved myself a ton of misery and not to mention the impact to my quality of life. I went to physicians for the symptoms—-No body ever said we better check this out. Looking back I had symptoms for over 20 years.

As to the tinnitis——so loud that I couldn’t sleep. Talk about sending me a loud signal. That was a tough recovery. I have it back some now but not as severe as it was. Ironically I had a deep pain in my ear today for just a split second—-nerve endings. If we “listen“ close enough to our body, it will send you signals. I actually want to feel nerves waking up—-then I know I’m making an impact. What is the hardest is the overall lousy feeling and weakness. I just remembered the first time, crying to my husband because every time I put a B12 sublingual under my tongue, within minutes I felt terrible. I even made him put one under his tongue to see if he felt anything. He felt nothing———that is when I knew that B12 deficiency was very real. I also remember dreading putting the sublingual under my tongue because I knew what was coming I was doing that 3-4 times a day and trying to hold down a job. As an aside, while i was typing this post, I had 4 of those very strong jerks right in a row……

 

[TinaT]

Okay I'm probably going crazy but now I'm concerned about liver and heart failure! I have been eating liver at least every other day and I guess maybe that could have already damaged my liver. And I seem to be retaining water. Oh joy.

And I cannot ask my doc about further testing when he just last week told me that this was all psychosomatic. 🤬

 

[TinaT]

also remember dreading putting the sublingual under my tongue

Like I'm dreading even weekly shots 😓 and my husband is dealing with a lot of tears from me, too. I'm sorry you're going through this again. Thank you for explaining so much. ❤️

 

[Idie]

@Idie

Would you mind sharing: about how much water do you use in your bedtime / overnight 1/4 tsp potassium solution? And how quickly do you drink it? I've been worried that if I drink too fast, my levels will be shocking to my heart or something. But then sometimes I just want to drink it down and go back to sleep! Like right now 😅

I have tried two different ways. I bury 4 tablets of potassium gluconate in food and eat that just as I crawl into bed. The other way is one teaspoon of potassium gluconate powder which is equal to 350 mg in 8 ounces water, I also try to have a little something in my stomach when I drink that but not always. I also mix up another batch to have by my nightstand because tablets are just two slow when the symptoms hit In the middle of the night. I have drank it right down when I need it now and have done ok…last night was one of those times.

I should add that I do way better when I don’t let the potassium need get too far out ahead of me….meaning I may dose every two hours if the symptoms are really bad.

Been doing potassium very frequently for about a month. The only trouble I have had is waiting too long and that can happen fast.

Right now I am doing about 2,000 mg through out the day sometimes even that isn’t enough….ugh!!! I guess there is no argument that refeeding is going gangbusters———-why does it take so long to improve???

 

[Idie]

Like I'm dreading even weekly shots 😓 and my husband is dealing with a lot of tears from me, too. I'm sorry you're going through this again. Thank you for explaining so much. ❤️

Cry a lot——-you need to. This is tough. I cried everyday for 6 weeks the first time and I also cry now. I still get scared by some of the symptoms. My husband remembers some of the first time and he is confident it will turn around BUT when you are the one going through it, it is hard to see the other side, It is worse for people who do not have a supportive spouse. In fact sometimes, we don’t look that sick from the outside.

 

[Idie]

Okay I'm probably going crazy but now I'm concerned about liver and heart failure! I have been eating liver at least every other day and I guess maybe that could have already damaged my liver. And I seem to be retaining water. Oh joy.

And I cannot ask my doc about further testing when he just last week told me that this was all psychosomatic. 🤬

Well, what needs to happen is that he needs to give you reassurance. To tell you that this is psychosomatic, tells me that he doesn’t get it. I just had a discussion with a physician who told me that the doctors are getting a lot of criticism for being “box checkers”——in other words, checking a box and send you on your way. We had a nice conversation about that and patients are starting to stand their ground more and more. Might be time to find a different physician. It’s ok to say this isn’t a good fit for me.

 

[chrism]

@TinaT
"Plus the doc who created the popular Seeking Health vitamin line insists that having electrolytes straight, and taking glutathione, are both essential *before* taking anything methyl"

This is interesting to me. Also, by having electrolytes straight, do they mean drinks/ supplements instead of food?

I've read mixed stories on glutathione. I tested normal for it (intracellular) but I'm also not testing poor for B12 (B9 is my curse). Another thing to keep in mind is I took really high B9 before stopping and everything got way worse. So my levels might not be traditional from someone who is doing corrections for the first time.

The major issue is that everyone had slightly different variations of what they are lacking. No silver bullet until knowledge and testing improves.

I think electrolytes is good advice rather than just potassium. Potassium works for me when I have twitching or cramping.

 

[TinaT]

Right now I am doing about 2,000 mg through out the day sometimes even that isn’t enough….ugh!!!

I wish I had the courage to keep increasing. The problem is that I've always been a very risk averse person. And usually careful / safe. I research things, try to avoid doing things that aren't recommended for safety, etc. So when I realized low potassium could be my problem, I researched potassium. There are warnings after warnings about the risks of death from taking too much (and of course the risks of not having enough). Then I had two docs tell me not to supplement bc of the risk of heart attack (in the same week; not the idiot who said this is all in my head).

Anyway, at least I've become comfortable with supplementing potassium a little more. I think the low potassium is causing my ongoing reflux and possibly (?) water retention. I'm so confused really.

Thank you for explaining your dosing situation.

 

[TinaT]

This is interesting to me. Also, by having electrolytes straight, do they mean drinks/ supplements instead of food?

Here is the blog post:

https://mthfr.net/preventing-methylfolate-side-effects/2014/11/26/

(Warning: comment section is a rabbit hole that even I could not finish.)

But he recommends an electrolyte drink that he sells. I have that in my pantry and drinking that helps with what I think is a potassium problem, at least until evening (package says not to take at night bc could interfere with sleep). (Drink is high in potassium.) Unfortunately, that's too acidic for me. It's been hurting my throat so I had to stop. If you don't have reflux, I recommend trying that product, first thing in the morning.

I'm still not sure about glutathione. But he says that is part of the cell and necessary for a bunch of stuff. He also *strongly warns* against not taking glutathione before taking anything methyl. He says that he has watched people not doing those things (meaning electrolyte and glutathione), then going downhill and not being able to recover.