• 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.

how likely are potassium problems on simplified protocol?

Messages
10
I'm keen to get started on Rich's simplified protocol having just had a Methylation Panel from Genova Diagnostics showing poor methylation (raised MMA). I'm really worried about the potential problems with a sudden drop in potassium levels, can anyone advise me please?
 

snowathlete

Senior Member
Messages
5,374
Location
UK
I did the simplified protocol for a month or two without taking potasium. No problems. Then moved to Fredds protocol and had big potasium problem when I forgot to take it. If doing simple then just take a small amount of potasium perhaps. You get potasium in lots of foods, bananas, tomatoes etc. unlikely to be any harm in taking a supplement also.
 

clive powney

Senior Member
Messages
206
Location
coventry
I'm keen to get started on Rich's simplified protocol having just had a Methylation Panel from Genova Diagnostics showing poor methylation (raised MMA). I'm really worried about the potential problems with a sudden drop in potassium levels, can anyone advise me please?
My potassium shot down VERY quickly when I started equilibrant. It went from something like 4.3 to 3.0. My doctor prescribed me with amiloride which gradually bought it back up. This is a diretic and lowers your BP so that may be anissue for you if you have POTS or low BP anyway.
 
Messages
10
Thanks snowathlete that's good to know. Clive, thanks too, I'll bear that in mind. I have no issues with BP or POTS.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I'm keen to get started on Rich's simplified protocol having just had a Methylation Panel from Genova Diagnostics showing poor methylation (raised MMA). I'm really worried about the potential problems with a sudden drop in potassium levels, can anyone advise me please?

I'd watch potassium on both. I don't whether it was the Simplified Methylation Protocol or some other reason but I have had problems with low potassium and now am careful about it.

Sushi
 

Sparrow

Senior Member
Messages
691
Location
Canada
I would suggest you eat lots of potassium-rich foods (avocado, banana, white beans, coconut water, etc.), and keep and eye out for symptoms. The most common here seem to be headaches or muscle pain. In my own experience, my husband gets headache, I get intense but brief stabbing sensations in my muscles. ...They're hard to miss. ;) Of course, if those are standard symptoms for you anyway, it could be hard to distinguish.

A doctor can do a simple blood test for potassium levels and let you know where you are in the range. If you have a cooperative doctor, it would probably not be a bad idea to keep an eye on your levels now and then for a while just in case. A lot of people do seem to have this issue (not just with the methylation protocol, but with correcting B12 deficiency in general), though I'm not sure how many doctors would be familiar with it.
 
Messages
10
I would suggest you eat lots of potassium-rich foods (avocado, banana, white beans, coconut water, etc.), and keep and eye out for symptoms. The most common here seem to be headaches or muscle pain. In my own experience, my husband gets headache, I get intense but brief stabbing sensations in my muscles. ...They're hard to miss. ;) Of course, if those are standard symptoms for you anyway, it could be hard to distinguish.

A doctor can do a simple blood test for potassium levels and let you know where you are in the range. If you have a cooperative doctor, it would probably not be a bad idea to keep an eye on your levels now and then for a while just in case. A lot of people do seem to have this issue (not just with the methylation protocol, but with correcting B12 deficiency in general), though I'm not sure how many doctors would be familiar with it.

Thanks Sparrow, for the food suggestions and explaining the possible symptoms I may experience. My doctor has offered to monitor me, but if a dip came on really quickly that would be no use, so I need to be able to self monitor somehow as well. She is not familiar with any of this but thankfully happy to monitor me where she can :thumbsup:
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Take a few potassium tablets around with you, in your car or whatever. When I was on Fredds protocol and forgot to take potassium one day when I went out, I ended up in extreme pain in my shoulder muscles. Bad enough to call an ambulance. I had a banana and was fine pretty quickly after that.
You may not get it as strong as I did but if you start getting pain or whatever you can take a tablet or two and if it is low potassium then that will resolve it.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Sushi, what do you take and how do you get it measured? Or do you just feel some symptoms when you're low? Thanks

I get heart arrhythmias! Potassium stops them within a half an hour. I take supplementary potassium every day. My blood tests were borderline low. Now they are in range.

Sushi
 

arx

Senior Member
Messages
532
Hi,

I'm on the Active B12 Protocol, and experience hypokalemia which causes crazy symptoms. I have to monitor my potassium throughout the day. I can't say about the Simplified Methylation Protocol, but I would watch out very carefully.
As for symptoms, I experience the following when my potassium drops:

-Headaches
-Muscle cramps(anywhere in the body)
-Sinking feeling
-Extreme fatigue
-Dizziness
-Tinnitus
- Palpitations
-Mood changes( major one is extreme irritability!!)
- Frequent urination and extreme thirst
- As I already face neuro symptoms such as tingling and twitching sensations in my nerves, when I'm low on potassium, the tingling intensifies and there is numbness too.

Also, regular potassium blood tests should be done to keep it in check.

Good luck.

P.S: I also need some help with potassium, do check out this thread:

Managing Hypokalemia with Potassium Citrate. Urgent!
 
Messages
10
Thanks for sharing your experiences with me everyone. Arx, I have been reading the replies on your thread too, how are you monitoring your levels? The list of symptoms is very useful.
 

arx

Senior Member
Messages
532
Thanks for sharing your experiences with me everyone. Arx, I have been reading the replies on your thread too, how are you monitoring your levels? The list of symptoms is very useful.

Hi Bonnielass

Well, in the beginning I didn't know anything. When I started off with 500 mcg mb12 injections, I had read that low potassium occurs with high dosage B12. Then I used to take bananas and coconut water sometimes and I would feel better. So I had some symptoms which I could attribute to low potassium.

When I started off on Freddd's Protocol, I read here and there about how much potassium people are taking. On his protocol, the amount of mb12 and other co-factors was also very high, so potassium supplementation seemed necessary. With regular blood tests which measure potassium levels, potassium rich diet and supplementing with a potassium citrate solution, I came to an understanding of myself of what symptoms can be attributed to low potassium. The above list is those symptoms which over time I have found that occurred because of low potassium in my body. I guess with time one does come to know how much potassium one needs,as we all face different symptoms with different doses. It is an experimental custom approach, which is unfortunate at times because hypokalemia is dangerous, and Freddd has warned about it on many of his posts.

I take around 2 bananas, 2 coconut water and around 2000mg of potassium daily.(earlier I thought i was taking more, but that was a misunderstanding of mine with potassium citrate)

You might want to consider reading Rich's posts about potassium, to get a better idea about how people are doing on his protocol and how much potassium is needed. You can use the search option in the forum to search for his posts.
 
Messages
10
Hi Bonnielass

Well, in the beginning I didn't know anything. When I started off with 500 mcg mb12 injections, I had read that low potassium occurs with high dosage B12. Then I used to take bananas and coconut water sometimes and I would feel better. So I had some symptoms which I could attribute to low potassium.

When I started off on Freddd's Protocol, I read here and there about how much potassium people are taking. On his protocol, the amount of mb12 and other co-factors was also very high, so potassium supplementation seemed necessary. With regular blood tests which measure potassium levels, potassium rich diet and supplementing with a potassium citrate solution, I came to an understanding of myself of what symptoms can be attributed to low potassium. The above list is those symptoms which over time I have found that occurred because of low potassium in my body. I guess with time one does come to know how much potassium one needs,as we all face different symptoms with different doses. It is an experimental custom approach, which is unfortunate at times because hypokalemia is dangerous, and Freddd has warned about it on many of his posts.

I take around 2 bananas, 2 coconut water and around 2000mg of potassium daily.(earlier I thought i was taking more, but that was a misunderstanding of mine with potassium citrate)

You might want to consider reading Rich's posts about potassium, to get a better idea about how people are doing on his protocol and how much potassium is needed. You can use the search option in the forum to search for his posts.
 
Messages
10
That's really useful thanks, Arx, just getting used to this site and all it's workings. I have already read some posts of Richs on the subject but will continue to search for more. I have a few emails of his on how to get started but there was no mention of potential potassium probs.
So you were self monitoring according to how you felt, and I suppose the best advice is always to make changes slowly and note what happens, along with having levels tested by a doctor from time to time?
 

arx

Senior Member
Messages
532
That's really useful thanks, Arx, just getting used to this site and all it's workings. I have already read some posts of Richs on the subject but will continue to search for more. I have a few emails of his on how to get started but there was no mention of potential potassium probs.

Hi Bonnielass,

You're welcome.Yes,getting used to the site will take some time, but when you do, the search feature is pretty awesome.Rich has mentioned potassium in some posts. I will provide you with links to some I could find, hope they help. For more you can go to the search option and search for 'potassium' and in the 'Posted By Member' section you can type 'richvank'. This is what I did to get the following links. I've done this a lot to read many of Freddd's posts.

1.
Why is potassium supplementation needed in methylation treatmt?

2.
http://forums.phoenixrising.me/inde...ol-august-25-2012-revision.19050/#post-290945
3.
Potassium: How much supplemental potassium is safe and what form?


So you were self monitoring according to how you felt, and I suppose the best advice is always to make changes slowly and note what happens, along with having levels tested by a doctor from time to time?

Well yeah, potassium is a serious thing after all. Low potassium and high potassium,both are dangerous. So getting the levels tested is absolutely necessary. I was self monitoring with getting tests done regularly and noting my symptoms. Also, posting on this forum a lot and asking others on Freddd's protocol about their potassium needs.Changes made slowly are not a bit safer, but also helps in one's analysis of oneself, as we all experience different things with different dosages. Still, it helps a lot to know how others are doing.

I can't say about Rich's protocol, as I have not tried it. Perhaps others on the Simplified Methylation protocol will be of more help to you, as their experiences can relate to yours.

I posted on a thread explaining how one can see all posts and threads by Rich. If it helps you, here is the post:

http://forums.phoenixrising.me/inde...h-saved-on-their-computers.19778/#post-305864

Take care.
 
Messages
10
Thanks arx for looking out all that info for me, I really appreciate it and will work through it in the next few days. Hope you too get the info you need on your other thread, you take care too...
 

Phred

Senior Member
Messages
141
My symptoms are very similar to Arx's. With the extreme thirst and fatigue (in combination) I started to question if I was developing diabetes. However, if I get some potassium into me that seems to go quickly. Also I want to talk about the irritability. For me it's almost a murderous rage. I can feel it welling up and once I realize what it is, I have to take a breath and get some form of potassium into me. I feel much better after that. My muscles don't just spasm, they ripple. You can actually see it ripple down my arm or thigh. That one really scares me.

There's a place in Canada that sells a time release potassium supplement and I'm going to order that this week. I've drastically upped my b12 intake and have found I really need a lot more potassium now.

I just wanted to add potatoes into the mix of foods rich in potassium. In fact, a good baked potato (with the skin) has almost a 1000mg of potassium.
 

Phred

Senior Member
Messages
141
Whoops. I forgot to ask my question about the headaches people get from hypokalemia. I was wondering where on your head this happens? I know when I have a headache around my eyes it's a sinus headache. Are the potassium headaches in the front of the head (forehead area)? By the temples? In the back of the head? Near the base of the head? I'm just trying to figure out if some of the headaches I've been experiencing are potassium related. Thanks.
 

arx

Senior Member
Messages
532
My symptoms are very similar to Arx's. With the extreme thirst and fatigue (in combination) I started to question if I was developing diabetes. However, if I get some potassium into me that seems to go quickly. Also I want to talk about the irritability. For me it's almost a murderous rage. I can feel it welling up and once I realize what it is, I have to take a breath and get some form of potassium into me. I feel much better after that. My muscles don't just spasm, they ripple. You can actually see it ripple down my arm or thigh. That one really scares me.

There's a place in Canada that sells a time release potassium supplement and I'm going to order that this week. I've drastically upped my b12 intake and have found I really need a lot more potassium now.

Hi Phred,

I have also felt rage many times. Mostly with carnitine, but can also be because of potassium. I have also experienced my muscles ripple twice or thrice but it happens when I'm really low on potassium. I try not to get to that point now and take potassium before only, as experiencing spasms, an increase in tingling and palpitations is really scary.

How much potassium do you take everyday?

I just wanted to add potatoes into the mix of foods rich in potassium. In fact, a good baked potato (with the skin) has almost a 1000mg of potassium.

Yeah, baked potatoes are good. I read about it when I started the protocol and have had them sometimes.I remember reading that French Fries also have a decent amount of potassium and ordered McDonalds right away. :D (Don't know if it's true or not,though)

Mostly I concentrate on bananas and coconut water everyday. Thanks for reminding me about the baked potato. It's always better to get the most from the diet.

Whoops. I forgot to ask my question about the headaches people get from hypokalemia. I was wondering where on your head this happens? I know when I have a headache around my eyes it's a sinus headache. Are the potassium headaches in the front of the head (forehead area)? By the temples? In the back of the head? Near the base of the head? I'm just trying to figure out if some of the headaches I've been experiencing are potassium related. Thanks.

The hypokalemia headaches that I experience are mostly in the forehead and temple area. As I have mentioned before that I experience nerve sensations in my spine and head, with low potassium they get worse. So the headaches I experience are from those nerve sensations(which can be anywhere in my head) and probably another ache in my forehead. Hard to distinguish which is from what.

I think it's the hardest thing at that point when one is experiencing such symptoms and wondering what is causing it. I have also experienced low sugar and sometimes I get confused what is causing all this. It's hard to assess at that point of time, so I eat something sweet and take some potassium.It would be really helpful to have a potassium meter,so I can check my levels at that time to figure out if this is from potassium or not. As one has to be very careful with potassium and not take too much, I'm pretty much in the same doubt as you are.

If you are on Freddd's protocol, he has written some posts on potassium. I am reading them to see if they are of help. Here they are:

1..WARNING - LOW POTASSIUM IS DANGEROUS


2..EXERCISE and Folate and Potassium Balance

3..Low potassium and folate deficiency/insufficincy symptoms decision tree - Beta


4..Some inforamtion on titrated mb12-Metafolin-potassium ratios and startup