• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Wrong Diagnosis Site - Fredd's Protocol

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
How Do You Monitor Calcium-Potassium-Magnesium Balance?

I am currently slogging my way through the B-12 - The Hidden Story thread. I just came to the following, posted by Freddd:

One has to watch that calcium-potassium-magnesium balance. It can get out of whack so easily. For me it fluctuates and causes problems. Each time I get things stable for a while, something changes and I have to redo the balancing. It does change because of the healing itself too.

I am waiting to start increasing my B12 until my potassium comes up above barely detectable. I am doing hair tissue mineral analysis through a clinical dietitian.

How and how often do you monitor your mineral levels and ratios?

While I'm writing, should I be making any changes to my supplements until the K is up? I tried to get L-Carnitine Fumerate instead of Acetyl-L-Carnitine last week, but my health food store was out. Could the fumerate increase the activity of the methlyB12 that I am currently taking and cause a decrease in K?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I am currently slogging my way through the B-12 - The Hidden Story thread. I just came to the following, posted by Freddd:

One has to watch that calcium-potassium-magnesium balance. It can get out of whack so easily. For me it fluctuates and causes problems. Each time I get things stable for a while, something changes and I have to redo the balancing. It does change because of the healing itself too.

I am waiting to start increasing my B12 until my potassium comes up above barely detectable. I am doing hair tissue mineral analysis through a clinical dietitian.

How and how often do you monitor your mineral levels and ratios?

While I'm writing, should I be making any changes to my supplements until the K is up? I tried to get L-Carnitine Fumerate instead of Acetyl-L-Carnitine last week, but my health food store was out. Could the fumerate increase the activity of the methlyB12 that I am currently taking and cause a decrease in K?



Hi Little Bluestem,

Could the fumerate increase the activity of the methlyB12 that I am currently taking and cause a decrease in K?


Yes. However adb12 works far better with it as adb12 supplies the mitochindria better than a little bit of mb12 that converts to adb12. Muscles and neurons can suddenly start healing causing potassium to plunge. I have to take 1800mcg of potassium a day to stay out of trouble right now. You will never catch up and can ecen cause death it you level it low for a long time. Get on extra potassium for your own helath and sanity.

Thaty tells you where it was at last month. The serum potassium can fall to fatal levels in a matter of days, to levels that leave you screaming on the floor with spams or lying in bed paralysed and unable to help yourself or your heart goes into a fatal arrythmia. Take more potassium and keep your serum level at 4.5 -5.0 . You can get home test kits. Do the blood test type. You could die waiting. I kid you not. It takes too long to get blood tests back from a doc in these cases. Once you correct the deficiency you will know quickly when it is coming back. This is the most truely dangerous side effect. The others are merely unpleasant. This one can be deadly.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Freddd,

Thanks for the reply. Does the abd12 not effect the K level? I have ME/CFS, so really would like to take it now that I know about it. I have been taking 1000 mg Jarrow sublingual methyl B12 for several years and it helps me get up in the morning, so I have decided to continue with that amount despite the low K. I may not have been keeping the MethylB12 in my mouth long enough prior to reading this site, so my MethyB12 absorption may have gone up some since, however I am not having low K symptoms.

I have been taking over-the-counter supplemental K and drinking sodium/potassium salt water for a year and a half for maximum of 900mcg/day with very little change. After my recent hair mineral analysis I asked my dietitian if I should ask my physician for prescription K and she said No. I suspect she would say no to prescription anything. She did say that the Na in the salt water would block the uptake of the K, so not to mix them.

My mom is on Rx K, so the low K may be a partly genetic thing. I have since seen my physician and asked her about Rx K. She took a blood sample to test for K and I have not yet received the results.

I live in a really rural area and may have difficulty getting the home blood test kit. Would you give me the maker? I cannot get abd12 or methylfolate anywhere in the same county. Even the large-to-me natural food store in the city where I see my physician did not have either in stock, but since I knew the makers and they do business with both companies they were willing to special order them. I may have to special order the home test kit as well. Since I live an hour and a half from my physician, I would not likely be able to get to her to get a blood test if my K got dangerously low.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Freddd,

Thanks for the reply. Does the abd12 not effect the K level? I have ME/CFS, so really would like to take it now that I know about it. I have been taking 1000 mg Jarrow sublingual methyl B12 for several years and it helps me get up in the morning, so I have decided to continue with that amount despite the low K. I may not have been keeping the MethylB12 in my mouth long enough prior to reading this site, so my MethyB12 absorption may have gone up some since, however I am not having low K symptoms.

I have been taking over-the-counter supplemental K and drinking sodium/potassium salt water for a year and a half for maximum of 900mcg/day with very little change. After my recent hair mineral analysis I asked my dietitian if I should ask my physician for prescription K and she said No. I suspect she would say no to prescription anything. She did say that the Na in the salt water would block the uptake of the K, so not to mix them.

My mom is on Rx K, so the low K may be a partly genetic thing. I have since seen my physician and asked her about Rx K. She took a blood sample to test for K and I have not yet received the results.

I live in a really rural area and may have difficulty getting the home blood test kit. Would you give me the maker? I cannot get abd12 or methylfolate anywhere in the same county. Even the large-to-me natural food store in the city where I see my physician did not have either in stock, but since I knew the makers and they do business with both companies they were willing to special order them. I may have to special order the home test kit as well. Since I live an hour and a half from my physician, I would not likely be able to get to her to get a blood test if my K got dangerously low.

Hi Little Bluestem,


I want to make something clear. You must have potassium on hand. If it hits hard it could take you an hour to crawl to the kitchen, if you can make it that far. I keep it 10 feet away in the bathroom with a glass of water. Getting to the doctor for a blood test and waiting for results doesn't work. You need to test in advance of a problem and head it off if you are going to test. Once you have stopped it once or twice there will be no question if it is coming on. Hair is hopelessly out of date for serum potassium. If it were dangerously low you could already be dead before it would show up.

Where do you live. I just looked for home potassium test kists on the internet. You do the same and order on line. Remember you wanrt blood, not urine.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I live in rural Illinois and do not buy over the internet. I do not believe there is such a thing as a safe on-line database (which is where my personal information would wind up). Since my special order from the big-city store hasnt shipped yet, I will call them tomorrow and see if they have or can get an at-home blood test for potassium.

My physician recently had blood drawn for several tests, including K. I have not yet received the results. (I was being tongue-in-cheek about making it an hour and a half to my physician if my K dropped, but I guess you couldnt see that. ;) )

Does the abd12 effect the K level? Is it safe to take even if my K level is low?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I live in rural Illinois and do not buy over the internet. I do not believe there is such a thing as a safe on-line database (which is where my personal information would wind up). Since my special order from the big-city store hasnt shipped yet, I will call them tomorrow and see if they have or can get an at-home blood test for potassium.

My physician recently had blood drawn for several tests, including K. I have not yet received the results. (I was being tongue-in-cheek about making it an hour and a half to my physician if my K dropped, but I guess you couldnt see that. ;) )

Does the abd12 effect the K level? Is it safe to take even if my K level is low?

Hi Little Bluestem,

I think you misunderstand. It's not that b12 affects potassium, it doesn't. However anything that is the most limiting factor that was holding up cell formation that is taken and then cell formation starts up can then have a drop in potassium as a result of cell formation utilizing potassium. So mb12, adb12, Metafolin, magnesium, zinc, vit D, vit A, vit C, Vit e, l-carnitine fumarate etc etc etc can all be the missing vital item for one person or another. The answer is don't leave your potassium level low. It is dangerous. If it drops to low you could die. Anything that triggers healing could do that. Then there are meds that do drop potassium such as Lasix and other diuretics.
 

Rosebud Dairy

Senior Member
Messages
167
@ Little Bluestem

Monitoring potassium....
If I feel like I am going to vomit and float away at the same time, I know my potassium is low. If money is tight, you may be able to figure out without labs what your own low potassium symptoms are. I only inadvertently discovered low potassium after monthly blood loss after being on the Full Active Protocol (FAP), and NOT being super careful about getting morning potassium. It is just a generally nasty "This feels like I could die from this" kind of feeling.

I find my potassium drops occur nearing mid-day if I have rushed around in the morning, and have been a little slack with my vitamins.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Freddd

O.K., so I cannot make any changes that might trigger healing or boost my metabolism until the potassium is up.

I think part of the problem is using the tissue test for K. I was referred to the dietitian for the tissue mineral test by my physician for other reason and the extremely low K popped out, along with extremely low cobalt, i.e. cobalamin, and molybdenum. The molybdenum is the only one that is normal a year and a half later. I read the Why the Potassium drop with the methyl Bs? thread yesterday including Richs explanation of the sodium-potassium ATPase pump. If I understand it correctly, my tissue K will remain low even when my serum K is up.

I am not intentionally leaving my K low. I have been trying to bring it up under my dietitians direction for a year and a half. Since I thought the dietitian was taking care of it, I may not have mentioned it to my physician (there is only so much you can get to in 30 minutes). When I did tell her about it and ask about prescription K at my recent visit she did a serum K test. Her staff called with the results today. It is 4.2. They consider this normal, so no Rx K for me. I will have to keep slamming down the OTC K and salt water.

I know that I do not want to make any changes in my supplements until it is at least 4.5. Once I do start making changes and am doing at-home blood testing, is there a level that is almost too low - a level that if you get below you will be sorry?


rosebud

Thanks for describing you potassium drop symptoms. They do not sound at all fun. Unless the price is just exorbitant, I am going to get the at-home blood test, despite the fact that I really do not like to see my blood outside of my body. (Other peoples and animals blood is not so much of a problem.)

How long after you take your Bs and critical co-factors do the low K symptoms occur?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
@Freddd

O.K., so I cannot make any changes that might trigger healing or boost my metabolism until the potassium is up.

I think part of the problem is using the tissue test for K. I was referred to the dietitian for the tissue mineral test by my physician for other reason and the extremely low K popped out, along with extremely low cobalt, i.e. cobalamin, and molybdenum. The molybdenum is the only one that is normal a year and a half later. I read the Why the Potassium drop with the methyl Bs? thread yesterday including Richs explanation of the sodium-potassium ATPase pump. If I understand it correctly, my tissue K will remain low even when my serum K is up.

I am not intentionally leaving my K low. I have been trying to bring it up under my dietitians direction for a year and a half. Since I thought the dietitian was taking care of it, I may not have mentioned it to my physician (there is only so much you can get to in 30 minutes). When I did tell her about it and ask about prescription K at my recent visit she did a serum K test. Her staff called with the results today. It is 4.2. They consider this normal, so no Rx K for me. I will have to keep slamming down the OTC K and salt water.

I know that I do not want to make any changes in my supplements until it is at least 4.5. Once I do start making changes and am doing at-home blood testing, is there a level that is almost too low - a level that if you get below you will be sorry?


@Rosebud

Thanks for describing you potassium drop symptoms. They do not sound at all fun. Unless the price is just exorbitant, I am going to get the at-home blood test, despite the fact that I really do not like to see my blood outside of my body. (Other peoples and animals blood is not so much of a problem.)

How long after you take your Bs and critical co-factors do the low K symptoms occur?

HI Little Bluestem,

I get into trouble below 4.3 for serum potassium. I start having spasms at 4.2. If serum is LOW a long time tissue goes low. To get that up takes a top of range potassium for perhasp a year. For a lot of people two things can trigger low potassium, methylation startup, typically day 3 or later after starting. However, if you have edema with low folate as I do, I then get low potassium when I dump 3+ pounds of water in one day and methylation restarts. YOu can keep that serum potassium up if you titrate up on supplements and recognize what it feels like hen it goes low so you can take more.
 

Rosebud Dairy

Senior Member
Messages
167
@ blustem

How long after B's and co-factors do I get my K-drop symptoms?
______________________

After two days of a heavy period, and my body is trying to make red blood cells to keep up.........It was horrid, nightmarish.

I was faithfully taking B's and Co's, watching my folate timing before meals, as this appears to be key in my own situation with neuropathy control.

After one full month on the FAP, I felt very nauseated during the day. Previously, it was only on cycle days 14-28 when I might feel nauseated in the even, but had NO IDEA what it was. After reading a lot here, I put the dots together on potassium.

The cheapest solution for me was to get some salt substitute from the grocery store. I have used anywhere from 1/4 tsp to 1/2 tsp added to .5 Liter of water. I actually like the way is tastes, after remembering a lifetime of hating the way "fake salt" tasted. I can keep that in the car. But, now I know when I am likely to have a K-drop, and can be ready ahead of time next go round. I also found a metafolin containing multi at the pediatrician's office with potassium in it, too. So, if I am not careful, I can have k-drops three days in a row. Now I know.

Still having some edema issues I can easily gain and dump 4+ pounds of water weight in one day's time.

_____________________________

I will add:
I am re-starting the protocol, so i jumped in a little scattershot. I was always afraid of taking mag or potassium, as I was afraid of diarrhea symptoms. The raging IBS-d was likely more from my body being full of folic acid which I was using too slowly and/or being too full of folinic acid which I was also using too slowly, and my active methylfolate never had a chance to compete.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
If serum is LOW a long time tissue goes low. To get that up takes a top of range potassium for perhasp a year.

What are some top of range potassiums? Can I start treating the ME/CFS once the serum K is up? From what Rich said about the sodium-potassium ATPase pump, it sounds like the tissue K will not come up until mitochondrial function is restored.

I seem to be fairly OK at 4.2. I was not having a bad day the day the blood was drawn for the K test. I do not get muscle spasms or edema. I do get occasional inexplicable nausea such as rosebud mentioned.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
rosebud

I, too, drink fake salt salt water. I also drink regular salt water because my sodium is also low. I have become so accustomed to drinking salt water that regular water tastes bland. I use it with meals to take my supplements because I dont want salt interfering with the absorption of any of my supplements.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
What are some top of range potassiums? Can I start treating the ME/CFS once the serum K is up? From what Rich said about the sodium-potassium ATPase pump, it sounds like the tissue K will not come up until mitochondrial function is restored.

I seem to be fairly OK at 4.2. I was not having a bad day the day the blood was drawn for the K test. I do not get muscle spasms or edema. I do get occasional inexplicable nausea such as rosebud mentioned.

Hi Little bluestem,

My level hangs around there. I just take extra potassium as needed. You may never get it high enough to prevent it from dropping low with methylation startup. Just be aware of changes and increase and methylate and watch for symptoms.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I just want to get my potassium high enough that I do not have incapacitating K-drops when I start the active Bs. Besides not wishing the endure the unpleasantness, I do things for my elderly parents almost every day. They can get by without me for a day or two, but they dont necessarily eat very well, and the dirty dishes, laundry, and shopping list expand. Usually when I am not there I am accomplishing something that needs to be done for me or them. If I am accomplishing nothing, things really get back logged. With ME/CFS I cant just jump in and work long, hard days (or even normal days) to catch up. I need to guard the minimal level of energy/productively that I still have.

My bottle of potassium says that 99 mg is 3% of the Daily Value. That means that the DV is 3300 mg. If I work up to around 3300 mg supplemental K (tables and KCl salt water), do you think it would be safe to start the active Bs?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I just want to get my potassium high enough that I do not have incapacitating K-drops when I start the active Bs. Besides not wishing the endure the unpleasantness, I do things for my elderly parents almost every day. They can get by without me for a day or two, but they dont necessarily eat very well, and the dirty dishes, laundry, and shopping list expand. Usually when I am not there I am accomplishing something that needs to be done for me or them. If I am accomplishing nothing, things really get back logged. With ME/CFS I cant just jump in and work long, hard days (or even normal days) to catch up. I need to guard the minimal level of energy/productively that I still have.

My bottle of potassium says that 99 mg is 3% of the Daily Value. That means that the DV is 3300 mg. If I work up to around 3300 mg supplemental K (tables and KCl salt water), do you think it would be safe to start the active Bs?

That may very well be impossible. Instead just plan on taking daily sufficient potassium supplements and extra as needed. Recovery can be in 15 to 30 minutes and with practice you will feel it coming on quick enough that it is no problem at all.
 

Adster

Senior Member
Messages
600
Location
Australia
Bluestem, just be a bit careful with the potassium chloride in water, it can cause really unpleasant gut problems if you take too much in one go. I put some in a capsule once and took it before dinner. It was really really awful!
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Bluestem, just be a bit careful with the potassium chloride in water, it can cause really unpleasant gut problems if you take too much in one go. I put some in a capsule once and took it before dinner. It was really really awful!

There are warnings about potassium chloride which can form an acid and damge the stomach even causing necrosis. A LOT of dilution is in order.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Oh bummer, it is easy to get quite a bit of potassium down using KCl water, which is probably why it can damage the stomach. I have been doing 1/8 tsp/cup of water for over 1 year and a half. I was mixing it with 1/8 tsp NaCl. My dietitian told me not to mix them because the Na would interfere with the absorption of the K. I have recently upped the KCl to tsp/cup of water. I will go back to 1/8 tsp. Thanks for the warnings.