• 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, 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.

Does donut hole deficiency increase potassium loss?

Messages
50
I saw this quote by Freddd and I wanted to clarify if being in a donut hole deficiency state increases potassium loss?

"If I were in your situation KNOWING everything I now know, I would move up to 4 mg of methylfolate 4 times a day after removing or reducing all of the items I mentioned. You will know in a few days,(you might know in a few hours) move out the area with the worst potassium loss I experienced and the worst intensity of methylfolate deficiency symptoms I experienced in my whole excessive painful slow titration. I would never do it so ,miserably as I did then, now that I know. I was doing it for maximum knowledge, not fastest healing, of course I didn't know that then.."

I do believe I may have thyrotoxic period paralysis which causes drops in potassium. However, since it takes approximately 4 weeks to adjust to a lower dose of thyroid hormone I wanted to make sure I was exploring other possibilities for my symptoms.

I was having shortness of breath while taking 670 mcg of methylfolate and 500 mcg of b12. It got bad enough I had to stop methylation. I am new to all this, so now looking back I think I may have induced a donut hole deficiency with the low dose of methylfolate. This is where I left things off at and I haven't been feeling well since. I went to the ER and they found low potassium. Now, a week after taking the supplements they gave me, I am experiencing low potassium symptoms again. They kind of come on like episodes for me. I am titrating up my potassium...currently at 400 mg potassium citrate and eating a few bananas.

To fix this, do I need to address the donut hole deficiency I caused? The idea of taking 8 mg of methylfolate scares me, especially if it will make my potassium issue worse.
 

nerd

Senior Member
Messages
863
Serum potassium has to be differentiated from intracellular potassium. It's possible that one thing is elevated while the other is deficient. Supplementation of electrolytes will only correct serum levels initially.
 
Messages
50
Serum potassium has to be differentiated from intracellular potassium. It's possible that one thing is elevated while the other is deficient. Supplementation of electrolytes will only correct serum levels initially.

Yes, I realize that serum blood levels do not reflect intracellular levels. I guess considering the fact that I stopped methylation over a month ago and have been taking potassium supplements made me wonder why I haven’t seen improvement. That’s why I was wondering if it was because I left things off in a state of donut hole deficiency. Maybe there’s no connection though.
 

Mary

Moderator Resource
Messages
17,376
Location
Southern California
. Now, a week after taking the supplements they gave me, I am experiencing low potassium symptoms again. They kind of come on like episodes for me. I am titrating up my potassium...currently at 400 mg potassium citrate and eating a few bananas.
That's not very much potassium. The RDA is 4700 mg. You might try drinking a couple of glasses of low-sodium V8 and see what happens. It's high in potassium, I've seen it recommended by cardiologists. I've found it's a good way to see if someone's issues are low potassium because if the problem is low potassium, they usually start to feel better in a couple of hours after drinking 2 or 3 glasses. And it's a good choice for me (and many) because it's low in sugar.

When I started taking methylfolate in 2010, I had a nice energy boost for a day or so followed by severe fatigue, and I ended up needing to take 1000 mg of potassium (in divided doses, 200 with each meal, 200 before bed and 200 middle of the night). And I still have to take this, in addition to any potassium I get in my food.

The idea of taking 8 mg of methylfolate scares me, especially if it will make my potassium issue worse.
That would scare me too. I'd first try to normalize my potassium levels before increasing methylfolate.
 

seamyb

Senior Member
Messages
560
That's not very much potassium. The RDA is 4700 mg. You might try drinking a couple of glasses of low-sodium V8 and see what happens. It's high in potassium, I've seen it recommended by cardiologists. I've found it's a good way to see if someone's issues are low potassium because if the problem is low potassium, they usually start to feel better in a couple of hours after drinking 2 or 3 glasses. And it's a good choice for me (and many) because it's low in sugar.

When I started taking methylfolate in 2010, I had a nice energy boost for a day or so followed by severe fatigue, and I ended up needing to take 1000 mg of potassium (in divided doses, 200 with each meal, 200 before bed and 200 middle of the night). And I still have to take this, in addition to any potassium I get in my food.


That would scare me too. I'd first try to normalize my potassium levels before increasing methylfolate.

You've probably answered this a load of times Mary, but how much mfolate do you take. Also how much B12?
 

Mary

Moderator Resource
Messages
17,376
Location
Southern California
You've probably answered this a load of times Mary, but how much mfolate do you take. Also how much B12?
I take 3200 mcg. methylfolate (1600 mcg with breakfast and 1600 with lunch) and 5000 mcg. methylcobalamin (sublingual liquid). I used to need 10,000 mcg. methylcobalamin but now do okay with 5000 mcg.

I just arrived at these doses through experimentation. Also my MCV (mean corpuscular volume) is always on the high side of normal, which can indicate a folate and/or B12 deficiency.
 

seamyb

Senior Member
Messages
560
I take 3200 mcg. methylfolate (1600 mcg with breakfast and 1600 with lunch) and 5000 mcg. methylcobalamin (sublingual liquid). I used to need 10,000 mcg. methylcobalamin but now do okay with 5000 mcg.

I just arrived at these doses through experimentation. Also my MCV (mean corpuscular volume) is always on the high side of normal, which can indicate a folate and/or B12 deficiency.

Thanks for that.

Do you see yourself ever replenishing this deficiency, or have you accepted this as a medicine required forever?

I'm only a year into this and only seem to experience energy from the B12, but the mfolate is needed to offset some of the side-effects. I only take 200mcg of the latter. Did you titrate up slowly on the folate or just jump in?
 

Mary

Moderator Resource
Messages
17,376
Location
Southern California
Do you see yourself ever replenishing this deficiency, or have you accepted this as a medicine required forever?
I think it will be required until the mystery of ME/CFS is solved. I think that persons with ME/CFS have difficulty absorbing or utilizing or metabolizing various nutrients. Pre-ME/CFS I never had to take everything that I do now just to function with any quality of life. I have to take a high dose of B6 and thiamine, as well as branched chain amino acids and some other things, in addition to the methylfolate and B12. This is all in addition to a B complex. I don't think I can get all the nutrients I need from food and I know many others here can't either. Hopefully this won't be forever however!
Did you titrate up slowly on the folate or just jump in?
I titrated up. I can't remember what I started with, maybe 1600 mcg (which of course is too much for many and not enough for many also), and then I stuck with 2400 mcg for a long time and in the last several months raised it to 3200 mcg. The methylfolate I take is by Solgar, called metafolin, and each tablet has 800 mcg.

So if you want to try increasing your methylfolate, I always think it's good to go slowly, whatever new thing someone may be trying.
 
Messages
50
That's not very much potassium. The RDA is 4700 mg. You might try drinking a couple of glasses of low-sodium V8 and see what happens. It's high in potassium, I've seen it recommended by cardiologists. I've found it's a good way to see if someone's issues are low potassium because if the problem is low potassium, they usually start to feel better in a couple of hours after drinking 2 or 3 glasses. And it's a good choice for me (and many) because it's low in sugar.

When I started taking methylfolate in 2010, I had a nice energy boost for a day or so followed by severe fatigue, and I ended up needing to take 1000 mg of potassium (in divided doses, 200 with each meal, 200 before bed and 200 middle of the night). And I still have to take this, in addition to any potassium I get in my food.


That would scare me too. I'd first try to normalize my potassium levels before increasing methylfolate.

I can’t drink V8 unfortunately because tomato gives me a bad histamine reaction. I ordered potassium gluconate powder though. A serving side is 175 mg and it says not to take more than 4 servings a day. So that’s 700 mg. I hope that’s enough to make a difference.
 
Messages
50
I take 3200 mcg. methylfolate (1600 mcg with breakfast and 1600 with lunch) and 5000 mcg. methylcobalamin (sublingual liquid). I used to need 10,000 mcg. methylcobalamin but now do okay with 5000 mcg.

I just arrived at these doses through experimentation. Also my MCV (mean corpuscular volume) is always on the high side of normal, which can indicate a folate and/or B12 deficiency.

@Mary , how come you did not need to continue titrating your dose further? Based on everything I have read from Freddd, you need to continue increase your dose to accommodate for healing up to 15-30 mg? Sorry, I am still trying to understand all of this. How come you don't experience donut hole deficiency symptoms at your dose?
 

nerd

Senior Member
Messages
863
Yes, I realize that serum blood levels do not reflect intracellular levels. I guess considering the fact that I stopped methylation over a month ago and have been taking potassium supplements made me wonder why I haven’t seen improvement. That’s why I was wondering if it was because I left things off in a state of donut hole deficiency. Maybe there’s no connection though.

Both can be measured and compiled to a whole blood to plasma/serum potassium ratio. The same thing should be done for sodium because sodium and potassium are interactively regulated. For CFS/ME, there is often a deficiency of intracellular potassium due to cell damage and acidosis, sporadic Succinylcholine release mediated by the methylation cycle, decreased insulin sensitivity, and a dysbalance in the Renin-Angiotensin-Aldosterone system. Here, Medscape describes the involved metabolic factors of potassium influx and efflux.

Of course, we can take potassium to increase its plasma availability. But what can we really influence regarding cellular uptake. I currently try a keto diet to eliminate insulin issues. But my pH hasn't changed. Nutrition doesn't change the pH issues. I think this is all mediated by cellular damage to some extent. For example, if you also have chronic mild anemia, there will be more circulating bile acid in your system to get rid of the excessive bilirubin. I have tried so many things, but haven't managed to fix the anemia yet.
 

Mary

Moderator Resource
Messages
17,376
Location
Southern California
@Mary , how come you did not need to continue titrating your dose further? Based on everything I have read from Freddd, you need to continue increase your dose to accommodate for healing up to 15-30 mg? Sorry, I am still trying to understand all of this. How come you don't experience donut hole deficiency symptoms at your dose?
@xinamatusx - we're all different. What works for Freddd doesn't work for everyone else. I go by how I feel and I feel well at the doses I'm taking. I don't have symptoms of a paradoxical folate deficiency. From what I understand Freddd needs very high doses of these nutrients and those doses are too much for many people. He's describing what worked for him and again, we're all different. So I would not go by what Freddd takes. He does give a lot of very good information (e.g., re potassium) but again, re proper doses, we're all different.
 

Oberon

Senior Member
Messages
214
@xinamatusx - we're all different. What works for Freddd doesn't work for everyone else. I go by how I feel and I feel well at the doses I'm taking. I don't have symptoms of a paradoxical folate deficiency. From what I understand Freddd needs very high doses of these nutrients and those doses are too much for many people. He's describing what worked for him and again, we're all different. So I would not go by what Freddd takes. He does give a lot of very good information (e.g., re potassium) but again, re proper doses, we're all different.

Not only that, but in Freddd's later postings he discovered he has an extremely rare genetic CBLC disease. I doubt what worked for Freddd will be a miracle cure for other patients unless they have the same rare genetic disease. I'm certain Freddd's advice has helped many, there are many accounts on this forum of people who had at least some success with high dose methylation. There are also many accounts of those who had a terrible time with even low dose methylation supplements and an even worse time at extremely high doses.
 
Messages
19
You could try betaine, it helps with the potassium balance - there are even microbes which can withstand high salinity because they have more betaine.
If you have acolyte issues add sufficient B6 (and B1), because it’s glycine after all.