Greetings and newbie question about potassium balancing

[auri]

Hello all!

I recently got my genetic tests back, and was hoping to be able to start methylation. However, when I attempted to begin methyl b12 supplementation, I learned a very valuable lesson: I'm apparently scary low on potassium. You see, I'd been having symptoms like muscle weakness, headaches, muscle pain and the like for a very long time now (I've been pretty much bed-bound since last November), but I could never be sure if they were from low sodium, low potassium, histamine (I'm working on a mast cell diagnosis), or something else. However, with what I've read on this board, having those symptoms in response to starting methyl b12 is invariably low potassium, so at least I now have that answer.

My problem is that I tolerate very, very few foods (5 right now), and when I try to eat any high-potassium foods, like butternut squash, I have one or more of three reactions:

1. I have what I call a "heart rollercoaster" effect. This is really weird, and hard to describe, but it's a very distinct feeling that I get only from high potassium. I can link it definitively to potassium because it first started after I was given potassium as a result of an ER visit. It is very scary, almost like my heart tries to stop, but then is re-started by a jolt of adrenaline, and it goes on for days, or until the offending food is eliminated from my digestive tract.

2. My body rejects it, via diarrhea.

3. I have a histamine reaction, for example with high potassium foods that are also high histamine like tomatoes or avocados.

So I actually have two questions:

1. Has anyone ever had the same sort of "heart rollercoaster" reaction to high potassium foods? I'm talking about eating as little as one-two ounces to produce these effects.

2. Has anyone successfully overcome such a severe potassium deficiency to the point that they could begin methylation, and if so, how'd you do it?

All suggestions as to what to study next are appreciated! I'm a voracious reader, and while information no longer sticks the way it used to, I usually eventually absorb what I need to.

Thanks to everyone for being here. This forum has an incredible amount of information!

 

[auri]

Sorry to reply to myself, but also wanted to let y'all know that I'm not just sitting and waiting for someone to do hand-holding; I'm finding answers already, albeit slowly. Specifically, this post: http://forums.phoenixrising.me/inde...low-potassium-is-dangerous.14410/#post-237726 and my extremely limited diet, make me think that I may be dealing with a vitamin C deficiency that may be a big contributing factor. I have had these weak-kneed, low potassium type reactions to Vitamin D (both oral AND from the sun) and I also had a negative reaction to a teeny bit of methylfolate, so maybe supping potassium and vitamin c would be a good place to start...

 

[Nana86]

Hi!
At the beginning of my therapy I almost had exactely the same problems as you are experiencing now (and I am a lot better now!)

I will try to answer your questions from what I know and experienced:

I don´t really think you´re reacting on the potassium in the food, but you might have a histamine or IGG4-induced reaction. Since you are so sick, your gut could be damaged and is "leaky". This condition is called Leaky Gut Syndrome - it means that some food molecules are, because of their structure, able to pass the gut wall and cause an immune reaction: Your immune system has to fight that molecules that don´t belong in your blood stream. If you google IGG4 you will find that many of your reactions fit to that condition.

Btw, what foods are you eating now? Which supplements are you taking? And have you done any testing about intracellular values of minerals and trace elements?!

RichvanK said that strong reactions to Methylfolate could be due to a deficiency of NADH - this is a cofactor needed by the body for various reactions and it is also important for folate metabolism. The body should be able to synthesize it by itself, but for that it needs various substances (like vitamins and minderals).

So in my opinion, you should:

1. Do some testing about mineral/ trace element levels (magnesium, calcium, potassium, selenium, copper, zinc, vitamin D, iron (->ferritin) etc.)

2. Get a good Vitamin B-Complex with all the necesarry B-vitams & take Vit. B12

3. already start supplementing trace elements you´re probably low in (most people, especially in such a condition are low in/ need a lot of magnesium, zinc, selenium and vitamin c - vitamin c also might help you to controll your histamine reactions to a certain extend)

4. Get amino acids: you could try to get a good supplement or try denatured whey protein (if your gut is able to handle it)

5. Take omega-3 fatty acids (DHA&EPA) - the body needs it to build up and regenerate cell membranes. In most sicknesses the mitochondrial walls are damaged due to oxidative stress etc. A good source is fish oil extract (available in capsules)

6. After a short while you could add fat-soluble vitamins: Vitamin A, Vitamin D3 (should be tested before), Vitamin K2 (MK-7; it has to be taken together with vitamins A&D) and Vitamin E (mixed tocopherols and tocotrienols)

I think that as important as taking supplements is the right diet. At the very beginning I was able to eat 8 foods and I also was having strong symptoms. Until now I´ve managed to be able to eat almost everything again (except for histamine-foods...but I think this is also going to improve by time ). What helped me (besides the above regimen) was figuring out what I could eat and strongly avoiding foods that were provocing reactions. Although I am not gluten intolerant a gluten-free diet helped me a lot, too. Also I tried to find out foods with a high nutritional value that my gut was able to digest (like Amaranth or Quinoa pops etc.).
By the time I was trying to add more and more foods to my diet and really had a hard time to get my body used to many things again (like meat, fish etc.).

I think it´s a hard way and you have to do a lot of reading and trying and probably failing, but in the end it is so much worth it!

Wish you all the best!

Nana

 

[auri]

Hi Nana! Thanks so much for your welcoming and super-complete response! I'll try to address things in order here, except I'll save the ones I have questions about for the end:

I'm very familiar with leaky gut, and have long suspected that it may be among my problems. Especially now that my food selection has gotten so limited! However, I wonder if perhaps some of that was not overzealousness (don't know if you've ever been histamine intolerant, but all it takes is a single food to make you utterly miserable, such that you can't tell if anything else is bothering you) in paring down my diet to safe foods. I'm actually working on broadening my diet right now, though several of my experiments (like butternut) have been failures. I've also tried to determine if there's any single unifying factor (salicylates, oxalates, sulfur, etc.) to the foods that cause reactions, but I'm not having any luck with it.

I'm currently eating peeled green bartlett pears, peeled golden delicious apples, steak from a specific grocery store, unsalted butter and a wee bit of cauliflower (too much and I have trouble). My supps are biotin and P5P.

My serum Vitamin D was 49 when I had it tested in December - well within range, yet I'm having the same symptoms I had when it was 18-20 (a couple years ago).

I will look into NADH. A little afraid of the Bs right now, especially en masse, but I'll think about the B complex. I've been supping teeeny crumbs of magnesium to keep my bowels moving at a stately pace, but anything more than that and everything starts going right through me. Haven't touched the other minerals you mention in a while, though I did try a tad of potassium chloride today. It took away my muscle weakness (yay!) but then also introduced muscle tightness. Guessing that might be the chloride component, but won't know until I can find a different type to try.

I stopped my fish oil back when I was reacting to "everything." It's another thing I should probably re-test, because while I doubt I could eat fish thanks to histamines, sometimes really good fish oil (and I do buy the good stuff) doesn't cause those problems. I have been supping flax oil here and there, mostly for angina, but not on anything like a regular basis because the stuff tastes horrid!

I actually do think I can tolerate denatured whey - I had some in the pantry when this all went down, and drank a tad with no obvious reaction. However, it tastes like crap, and given that I can't tolerate any flavorings or sweeteners right now (at least I don't think I can...everything for retesting eventually!), I've been ignoring it. But you're right, I should probably try to include at least a bit of it, as it's really heavy on the aminos.

I need to get some good A & E & test them out. I think what I have on hand is crap (and probably old & oxidized to boot). As for the D, well...that'll have to wait until I stop reacting.

I really hope I'm able to add more foods soon. I'm bummed out, because not only do I seem to be gluten intolerant (pain, anxiety), but my body seems to reject EVERY grain, nut or seed I put into it. Flax seed, pumpkin seeds, millet, rice, you name it! Makes it very hard to get any low glycemic carbs into me. I haven't tried quinoa lately, but I don't really hold much hope.

I have not had any intracellular testing done, and was not aware that it was even available to the general public. I found the Acu-Cell nutrition site ages ago, but when I tried to email them to find out where to get testing done, it always bounced back because their email box was full. Is there another way/place to get this type of testing done?

Thank you so much for sharing your story & your protocol! How long did it take you to go from only being able to tolerate 8 foods to where you are now?

 

[sleigh73]

Auri, did you ever figure out how to get your potassium up, and why you were getting muscle tightness after taking it at first? I'm having that issue just now .... Hope you are well!

 

[Thewonders92]

Hypomagnesemia induces hypokalemia, there is not enough magnesium to keep potassium in the cells.

Hypokalemia induces hyponatremia, the body tries to balance low levels of potassium by removing sodium.

Hyponatremia induces hypocalcemia, the body will drop calcium with sodium.

Hypocalcemia influences hypophosphatemia and hypomagnesemia.

Insulin has an effect on all electrolytes.

Making a drastic change to your electrolytes without understanding the first step that led to disregulation in your particular case will lead to refeeding syndrome, and likely serious damage, possibly death. Some die even under medical supervision, most Doctors are clueless and just throw a generic IV at you.

Refeeding potassium without sodium will further aggravate your hyponatremia, your body will be in what it considers a hyperkalemic state, which will further aggravate the rest.

Thiamine, potassium, sodium, phosphate, Magnesium and calcium end up all over the place, which as you'd imagine is pretty bad. I don't see a safe way anyone can do this at home really, from what I've seen on here potassium and magnesium (luckily) are the only two electrolytes to get any real concern, but the fact of the matter is megadosing magnesium will deplete calcium, calcium is still an essential mineral and electrolyte and seems forgotten.

Basically if you mess with one factor, 2 or more will work in opposing directions frequently, which will continuously cascade until you've done enough damage to your heart and kidneys that you'll have little chance of recovering from it.

This is one time I would recommend working with a Doctor to make sure you aren't overdoing it. I see some people on here taking 5, even 10 grams of supplemental potassium a day, and sometimes several grams of magnesium, not considering their diet, or how much calcium and sodium they're taking in, we're also seeing a lot of people going low carb which influences thiamine, which influences every electrolyte. And salt restricted diets, which will influence calcium, which will then influence magnesium causing one to wonder how they can keep taking all this magnesium and potassium for months and still not be any better, and more often worse off than before.

The heart can only take so much before it just gives up on our Guinea pigging.

Another thing to realize is that this complex tug of war directly between electrolytes is actually very simple when you consider how complex the situation actually is, how many interactions there are in the body through other vitamins, minerals, toxins, hormones, chemicals and drugs. There's no way to really keep track of it, it's not something where you can just take a x:x ratio of this electrolyte to that, that's impossible to figure out without frequent blood tests. Which unfortunately are likely going to be impossible to get because Doctors don't figure electrolytes matter I guess.

Hopefully you can get some help, sooner rather than later.

 

[Athene*]

Sorry to reply to myself, but also wanted to let y'all know that I'm not just sitting and waiting for someone to do hand-holding; I'm finding answers already, albeit slowly. Specifically, this post: http://forums.phoenixrising.me/inde...low-potassium-is-dangerous.14410/#post-237726 and my extremely limited diet, make me think that I may be dealing with a vitamin C deficiency that may be a big contributing factor. I have had these weak-kneed, low potassium type reactions to Vitamin D (both oral AND from the sun) and I also had a negative reaction to a teeny bit of methylfolate, so maybe supping potassium and vitamin c would be a good place to start...

Hi @auri Same here with the severe low potassium reaction to methyl b12 & methylfolate. I needed 3,500mcg to 4.5mg potassium supplements for two years, then it slowed down to 2000mcg potassium (gluconate) daily. I have undiagnosed pernicious anaemia going back decades (found evidence on old blood tests by getting my medical files). This was misdiagnosed as 'ME' and 'Fibromyalgia'. I also have hypothyroidism which further messes up electrolytes.

I am now having difficulty getting past 600iu vitamin D (and feel worse after sun too). However in the last few weeks I have found extra calcium supplementation has helped hugely and I need a lot of boron with that (and vitamin K2). I have also managed to keep taking a small amount of magnesium though I couldn't handle magnesium at all at the beginning of all this. I can now manage 62mg of elemental magnesium daily (supplement I take has 62mg elemental in each tablet of 520mg magnesium). Potassium demand has now increased again, but to a manageable level of 2,500mcg daily. @Kathevans just tagging you in case this helps. You seem to have the electrolyte havoc going on too...

My kidney function is very good, thankfully >90, despite all the supplementing. I get it checked a few times every year along with full blood count, liver, bone, iron studies, the lot. Potassium is usually around 4.5. If it goes to 4.4. or 4.3 I feel lousy.

I'm currently on the full @Freddd protocol now except for the low vitamin D which I am trying hard to increase, and I'm not making any daft mistakes anymore (hopefully) like causing a two-month set back by walking far too much far too soon. Now getting the energy back again.

Just realised this is an old post from aura who may not be around but @Kathevans I hope you see it because I know from another thread and message (which I will reply to later) that you're struggling with potassium too...

 

[Athene*]

P.S.Yes, lots and lots of vitamin C too (6mg daily). And @Kathevans, the calcium and boron really slowed down the low potassium (and low folate if I over do things) induced IBS...

 

[Kathevans]

@Athene* Thanks for tagging me. It's a wonder we ever work this out. I have a host of items to try to rein in my high potassium demand, but I hadn't thought of calcium or boron. I was thinking to begin my experimentation with the standard things that Freddd discusses--lowering the low Bs, limiting vegetable folate, pulling back on the Adenosyl B12 to just once a week.

My B-complex was fairly low, but I think I'm going to reduce it by half to something close to 5 mg per day, which is still above the Recommended Daily Amounts. I had begun to take Liposomal Vit C a few months ago, but am going to stop as I suspect it may be one thing that is pushing my refeeding. I will contnue to take 1,000mg or so of the buffered powder I mix into my water. Calcium I had stopped, but I do have some on hand. I need to check an electrolyte panel I had done recently to see what's included on it.

The really hard thing for me would be to stop the salads I love, which may fall into the area of increasing my folate need. I do know that. Am homozygous for a couple of the MTHFD1 snps, which @Freddd has said in the past relate to vegetable folate.

My problem right now is that raising my potassium levels enough during the day so that I'm not up all night drinking the stuff hasn't worked. I just woke after sleeping for an hour and a half to a palpitating heart. It took about 20 min for it to slow after drinking the potassium. And then I'm constantly in the bathroom...For me right now it seems to be about 4000+ of potassium that I need. It hadn't occurred to me that the IBS was low potassium. I'd thought of it as low folate, and as I refeed that, the potassium for rebuilding cells increased. The truth is, my symptoms for both low,potassium and low folate seem to be the same heart palpitations and IBS. I've been trying to differentiate lately, but haven't managed to.

All of this of course makes me nervous. Not to mention exhausted. I'm also going to look for a thread here on Boron as I have no understanding of that. I'm not sure I've ever had mine tested...or is it something that Fred has uncovered?

For the moment back to bed. It's clear I need a better understanding of electrolytes.

 

[Athene*]

Hi Kath,

The boron was something I read from one of @Freddd 's posts and because I was having great difficulty taking any calcium, vitamin D, or magnesium without massive potassium loss I thought I'd try the boron. After a week of one pill daily, it helped me absorb a small bit of calcium with d3 but as I increased boron to 3x3mg (I don't intend to do this forever) I was able to introduce more calcium, D3 & magnesium. Boron helps with calcium absorption and I'm no expert, but it's working for me so far. Today I managed 1,250mg D3, 500mg calcium and 500mg magnesium (i.e. 62mg elemental mag). I always take a MK7 (vitamin K2 from Jarrow) with calcium & D3 too. Vitamin A, small dose, is something else I take as I believe that works with calcium & D as well.

The symptoms I had before boron were what I always experience when my potassium drops i.e. within hours I have a raging thirst and constant peeing. (I thought I had some parathyroid problem but it turned out not to be that, thankfully.) I am very prone to fluctuations in aldosterone and cortisol, particularly at night time. I also got muscle stabs and joint aches, high blood pressure (scary, which I why I'm going very slowly with calcium etc) which seems to be settling with the addition of boron and increasing potassium again.

I have to say that eventhough it's all very challenging and I have made many mistakes along the way, that I'm hugely improved from two years ago when I was bed/couch ridden all day long and losing the will to go on. If it hadn't been for Freddd I would still be there. I am hopeful for further improvement and ability to exercise more without PEM though I need to get more D into me first. There is very little sunshine here and we all need it to make energy along with calcium and the multiple other elements we're missing for so long. Hope that's of some help...

 

[Athene*]

P.S. Kath, I have had to give up my big salads too. I loved them and felt I was helping myself by eating them! But I notice very marked low folate symptoms when I eat too much salad. I am able to eat a small salad though, along with three or four methylolate tablets (again from @Freddd's advice). It's so nice to be able to eat it again.

I meant to say to you before - did you know it's possible to have severe B12 deficiency without any macrocytic anaemia markers showing in your blood tests? I just remembered you once saying you weren't sure you were B12 deficient because you had no 'anaemia'...

 

[Kathevans]

I am able to eat a small salad though, along with three or four methylolate tablets (again from @Freddd's advice). It's so nice to be able to eat it again.

Yes! I was doing my own figuring and thought I'd recalled that Fred said that eating folate in foods blocked as much as 10x the methyl folate that we take...and like you, I thought, well, that means that if I eat my salads and veggies--and, frankly, it's hard to eat more than 400mcg of folate in a day with many basics (not, perhaps high folate foods). Ten times that is 4,000, right, or in this case, 5 tablets. I think your estimate of 3-4 is probably a good one! and once you're up to these high doses, what's another 3-4,000mcg of folate?!

I'm still struggling with refeeding, though, of either potassium or folate or both. Yesterday I had only 3500mg of K+, so that felt fa little better--I was responding to symptoms. But this morning after refeeding the potassiuma nd having not just palpitations, but also flutters and other irregularties, I realized that at 20,000 folate either yesterday's dose was too low, or, I needed to take an extra dose to see me through the night. In any case, once i got up to 6,400 folate this morning all symptoms stopped and I've been a happy camper since.

Right now I'm using 3 sprays of the Methyl B12/day. I think I've said before that yes, I test normal for B12, however I do know that with fm and chronic fatigue it may be that the B12 isn't getting into the cells or the cerebrospinal fluid, etc. And certainly, my snps (not to mention my past with nitrous oxide and mercury issues) indicate challenges with B12. Certainly the B12 has made an enormous difference. And most particular, the Adenosyl B12, which you and I have discussed, made huge differences. For me they were mostly good--major pain reduction in muscles and tendons--until they were bad--maybe. Unless it was something else! (I think I ought to post this on the transdermal oils thread as well...).

It's only three days since I stopped the Adenosyl/methyl B12 and, at Fred's advice (and that of a friend who did muscle testing...), pulled back on a few other things. To keep my lower Bs low, I actually went from 1/2 total of my B-Complex to 1/4 total in two doses, which yields only about 5mg of each of the lower Bs. I stopped using liposomal C and went back to only buffered C, went from taking 2 Gamma E tablets of 200mg ea to only 1. I skipped copper, selenium and manganese for day only and went back on them today as I think the minerals I've slowly titrated up on are pretty important...

Obviously, I'm nervous about going back on perceived gains, but then, we know that perception can be misleading. In this I'm speaking of the my B2 supplementation which was hard-won. But I feel forced to experiment.

Yes, lots and lots of vitamin C too (6mg daily). And @Kathevans, the calcium and boron really slowed down the low potassium (and low folate if I over do things) induced IBS...

I think you've been better at maintaining a stable dose of folate; I've really waffled, though the 20mg+ seems essential for me now. And it seems that my IBS comes from low folate alone. I say this because when I get heart palps I turn to Potassium first and if that is the issue, they disappear in 5 minutes. If not, I suspect folalte.

And as to vitamin C, I take less now, though I'm sure more would be good for my gut. Was it you who said that it ought to be taken away from folate? Calcium I was doing ok on (not taking any) when I last had my electrolytes tested in June. My levels were in range: 9.4 mg/dL in a range of 8.5 - 10.5 mg/dL ; Sodium 137 mmol/L in a range of 135 - 145 ; potassium 4.4 mmol/L in a range of 3.4 - 5.0 mmol/L; and chloride was 99 mmol/L in a range of 98 - 108 mmol/L. I can see that Phosphorus wasn't taken, so I don't know about that... But at least I wasn't completely out of wack.

Just to add to the confusion, early last March I did a strange mineral test at my dentists for another $200. and it reported that my Boron was 1.70 in a range of .84-2.87. But the truth is--I just don't know about some of these tests. My lithium came back low on this test as .050 in a range of .052-.120, whereas at my alternative doctors who did a Doctor's Data, Inc test later that same month it read as high at 78 ug/L in a range of .4-20. So I stopped taking lithium!

In the middle of this mystery, I am hoping that the Adenosyl B12 was the biggest culprit with regard to the insatiable potassium need, or that pulling back on the other things will help as wel. And for now I just have to try to get more than the 20mg of folate I took yesterday into me, hope that the 3 sprays of Methyl B12 are enough (or possibly do another in the middle of the night) to assist it in doing so, and hope that heart palpitations don't wake me hourly for another fill-up of potassium.

Meanwhile I may take out the calcium and take a tablet, and I'll look into Boron! Are these recommendations things that simply worked for you? or that were part of Fred's advice? Not that I don't trust your personal epxerience...on the contrary, I find it very helpful and often spot on for myself--even if it takes me a while to test to the same conclusion! And I do need to get my alternative doc to test for actual functional B12...is there a TEST for that??

Always, many, many thanks for all the support. It truly helps.

Sending along the hope that we all have a good night.

And @auri, though you seem to have long disappeared, I think I owe you an apology! While it does have very much to do with POTASSIUM, it may be that this bit of conversation belongs either on the Transdermal Oils Thread, or on the Refeeding Thread, either of which I'm happy to post it to. Of course, the potassium issue is germane to all of them! As for me, this is certainly a roller coaster of Potassium need, if not specifically of 'feeling'.

 

[Athene*]

Yes! I was doing my own figuring and thought I'd recalled that Fred said that eating folate in foods blocked as much as 10x the methyl folate that we take...and like you, I thought, well, that means that if I eat my salads and veggies--and, frankly, it's hard to eat more than 400mcg of folate in a day with many basics (not, perhaps high folate foods). Ten times that is 4,000, right, or in this case, 5 tablets. I think you're estimate of 3-4 is probably a good one! and once you're up to these high doses, what's another 3-4,000mcg of folate?!

I'm still struggling with refeeding, though, of either potassium or folate or both. Yesterday I had only 3500mg of K+, so that felt fa little better--I was responding to symptoms. But this morning after refeeding the potassiuma nd having not just palpitations, but also flutters and other irregularties, I realized that at 20,000 folate either yesterday's dose was too low, or, I needed to take an extra dose to see me through the night. In any case, once i got up to 6,400 folate this morning all symptoms stopped and I've been a happy camper since.

Right now I'm using 3 sprays of the Methyl B12/day. I think I've said before that yes, I test normal for B12, however I do know that with fm and chronic fatigue it may be that the B12 isn't getting into the cells or the cerebrospinal fluid, etc. And certainly, my snps (not to mention my past with nitrous oxide and mercury issues) indicate challenges with B12. Certainly the B12 has made an enormous difference. And most particular, the Adenosyl B12, which you and I have discussed, made huge differences. For me they were mostly good--major pain reduction in muscles and tendons--until they were bad--maybe. Unless it was something else! (I think I ought to post this on the transdermal oils thread as well...).

It's only three days since I stopped the Adenosyl/methyl B12 and, at Fred's advice (and that of a friend who did muscle testing...), pulled back on a few other things. To keep my lower Bs low, I actually went from 1/2 total of my B-Complex to 1/4 total in two doses, which yields only about 5mg of each of the lower Bs. I stopped using liposomal C and went back to only buffered C, went from taking 2 Gamma E tablets of 200mg ea to only 1. I skipped copper, selenium and manganese for day only and went back on them today as I think the minerals I've slowly titrated up on are pretty important...

Obviously, I'm nervous about going back on perceived gains, but then, we know that perception can be misleading. In this I'm speaking of the my B2 supplementation which was hard-won. But I feel forced to experiment.



I think you've been better at maintaining a stable dose of folate; I've really waffled, though the 20mg+ seems essential for me now. And it seems that my IBS comes from low folate alone. I say this because when I get heart palps I turn to Potassium first and if that is the issue, they disappear in 5 minutes. If not, I suspect folalte.

And as to vitamin C, I take less now, though I'm sure more would be good for my gut. Was it you who said that it ought to be taken away from folate? Calcium I was doing ok on (not taking any) when I last had my electrolytes tested in June. My levels were in range: 9.4 mg/dL in a range of 8.5 - 10.5 mg/dL ; Sodium 137 mmol/L in a range of 135 - 145 ; potassium 4.4 mmol/L in a range of 3.4 - 5.0 mmol/L; and chloride was 99 mmol/L in a range of 98 - 108 mmol/L. I can see that Phosphorus wasn't taken, so I don't know about that... But at least I wasn't completely out of wack.

Just to add to the confusion, early last March I did a strange mineral test at my dentists for another $200. and it reported that my Boron was 1.70 in a range of .84-2.87. But the truth is--I just don't know about some of these tests. My lithium came back low on this test as .050 in a range of .052-.120, whereas at my alternative doctors who did a Doctor's Data, Inc test later that same month it read as high at 78 ug/L in a range of .4-20. So I stopped taking lithium!

In the middle of this mystery, I am hoping that the Adenosyl B12 was the biggest culprit with regard to the insatiable potassium need, or that pulling back on the other things will help as wel. And for now I just have to try to get more than the 20mg of folate I took yesterday into me, hope that the 3 sprays of Methyl B12 are enough (or possibly do another in the middle of the night) to assist it in doing so, and hope that heart palpitations don't wake me hourly for another fill-up of potassium.

Meanwhile I may take out the calcium and take a tablet, and I'll look into Boron! Are these recommendations things that simply worked for you? or that were part of Fred's advice? Not that I don't trust your personal epxerience...on the contrary, I find it very helpful and often spot on for myself--even if it takes me a while to test to the same conclusion! And I do need to get my alternative doc to test for actual functional B12...is there a TEST for that??

Always, many, many thanks for all the support. It truly helps.

Sending along the hope that we all have a good night.

And @auri, though you seem to have long disappeared, I think I owe you an apology! While it does have very much to do with POTASSIUM, it may be that this bit of conversation belongs either on the Transdermal Oils Thread, or on the Refeeding Thread, either of which I'm happy to post it to. Of course, the potassium issue is germane to all of them! As for me, this is certainly a roller coaster of Potassium need, if not specifically of 'feeling'.

Yes, it's my own experience I'm going by, and I'm glad it's of some use to you, but I wouldn't have had a clue about what to take without studying @Freddd 's posts so I can't take any credit for that!

As for the vitamin C, yes, best to take it away from folate as it interferes with its absorption, as does potassium. I believe @Freddd's advice is to leave at least 30-45 mins between C & Potassium, and folate. I take my potassium along with C (C helps potassium to absorb) and leave it an hour or more before folate. I take my folate every six hours so it just happens that it doesn't often clash with my potassium & C, which I take more frequently, but if it does I like to leave at least an hour between them.

Just an aside - I've cut my thyroid meds by 1/5th over the past week and found the thirst and peeing lessened (the boron and extra potassium helped that too recently) and I managed to gain half a pound which I'm glad of. Yesterday and today I don't seem to need so much potassium. I think I may have got slightly hyperthyroid (uses up a lot of potassium) due to not needing so much thyroid meds anymore without realising it (so much to keep track of I forgot about thyroid levels). My free T3 has rapidly risen over the past couple of months too after years of being stubbornly stuck at very low level. I've lost a lot of water weight and fat with this protocol and am now back to where I was in my 20s. But I think I need to back off on thyroid meds. I don't want to be skinny. I was always too skinny when young (very high metabolism - ironic given the past 15yrs...) and I don't want to stress my heart or cause bone loss.

But anyhow, it goes to show, the methylcobalamin & methylfolate can definitely restore some lost thyroid function. If only I had found this protocol years ago...Anyhow, onwards, and good luck...

 

[Athene*]

P.S. My potassium is usually 4.4 or thereabouts on blood tests, but I need to take a lot to keep it there (currently 2,400mg to 2,600mg and used to be close to 4,000mg for a long while). My calcium is always mid to upper end of normal but I still feel huge benefits since increasing calcium, D & magnesium, particularly with lessening 'hyper' feelings and adding on a couple of hours of blissful sleep!

Serum blood tests don't seem to reveal much sometimes, though calcium is one to watch - it has a very narrow range and really shouldn't go above range. It's tightly controlled by the body. If it does go above range it needs to be investigated. My calcium was tested just a few days ago and it has remained in upper normal range despite all the extra intake plus Magnesium & D, so I take it as a sign the calcium is going to where it's needed.

If I had gone by my calcium blood test I wouldn't have supplemented calcium. But once I knew I had no parathyroid issues I was happy enough to supplement and trust my body to regulate it. In my experience it has been best to go by symptoms and responses than by blood tests...though I do keep an eye on calcium & thyroid (Free T3).

Another mistake I made was to shy away from calcium (and D3) supplementation due to having an elevated 1.25 OH D reading and quite high D3 (without any sunshine, which was puzzling). Once I supplemented with calcium, the 1.25 OHD came down to normal level and D3 dropped. I can't say I understand all of the biochemistry of this but I'm now doing well on calcium & D and wish I'd supplemented sooner. It's good to be able to raise magnesium too and I feel it's doing me good, though slowly does it. I hope this lasts and my calcium & 1.25 OH D remain normal. I'll keep an eye on it, but feeling good for now...

 

[Athene*]

PPS Just to mention I also take plenty of salt on my food (probably should ease off a bit!). Potassium and salt work together. I use pink salt. I'm not sure if all the hype about it is true but I prefer the flavour. My sodium reading is always around 139/140 in a range of 136-145.

And yes to folate - I've been consistent with that for 2 yrs now and have had huge healing. Most obvious to me is the skin healing. I was misdiagnosed (once again) with several skin disease labels because of paper cut type cracks which wouldn't go away. I have no skin problems whatsoever now. I also ditched the inhalers I used for 15 years (another misdiagnosis of asthma). I have no breathing problems anymore and not even one hay fever episode in summer though I was plagued with it for years. Yay!

 

[Kathevans]

Oh Athene*! The healing you've experienced is terrific. Even Greg says the body likes consistency, so I have to begin to be more consistent...

Here's a confession: last night as I could see that my potassium needs weren't slowing down, and I was up to 20,000 folate for the day, I began to drift back over my Excell Chart and could see that there were many days when the Adenosyl B12, especially at 2 squirts, occasionally 3, could yield a very good night, I talked myself into using it again at 10:00. Those old uncomfortable facial muscles had been returning, the weak and painful muscles in my back were burning and felt by evening as if they weren't strong enough to hold me up, my red-rimmed eyes were back. As I said, the Adenosyl Oil had some very good healing effects on my symptoms. Yet within two hours was regretting it. Worsening IBS, more varied heart irregularities, one more thing to wonder, do I need more or less?

It's 5:00 a.m. now, and I'm wondering now if it will take as long as it did earlier in the week when it was three days before I'd had sporadic 50 minute snatches of sleep for much of the night, and a reasonable, though tired day. And had dropped my potassium intake to 3500mg, which at least was something.

Oh my. Fred's advice on the Refeeding thread wasn't hopeful, that is, he gave the usual recommendations and said things changed for him within 24 hours when he got it right and good luck finding the supplement that would do it for me.

I lowered a lot yesterday, the Bs, Gamma E and dropped Liposomal C. I didn't pull out the calcium as recent levels looked ok, and magnesium is something I've worked on for years and tested levels seem fine--I take 400-500mg a day and many nights take Epsom Salts baths, which I love...with a very nice children's bubble bath by Aura Cacia. I also titrated up on Vit D about two years ago-- I use the NOW Liposomal spray with K2 since titrating up, and my levels have risen out of the deficit range. Recently, I added back about 1.5mg of copper because my alternative doctor said that Zinc:copper ratios had an effect on a-fib.

The odd thing is, this extreme need for potassium and folate took a while to settle in. Months on the combo oil. And it's effects- even as recently as last night--weren't so clear. As you say, better to go on symptoms and responses than by tests, anyway, and that's obviously what I do. Sometimes to no good effect. This trial and error seems to be the way we all move forward.

I was thinking too, about your saying that perhaps the difficulty in the Ado B12 for you might relate to your mitochondria, and I've had this thought as well. For me, the messed up microbiome with high bacterial levels. Or mercury toxicity.

With that, I'm stopping for now. I'll return to this when I have a bit more energy...,
I imagine you sleeping now!

 

[Athene*]

Hi Kath,

The main thing that really helped me through all of this is big doses of B12. Without very big doses (multiple injections daily) I would go into methytrap, because my high folate dose wasn't matched by enough B12.
That's just my experience.

I'm a bit stressed out today. I have to have minor surgery next week and my concerns about nitrous oxide general anaesthetic are being brushed off, so I'm now losing confidence in the consultant and he's supposed to be the best for the job (my third attempt at getting a competent surgeon)...

 

[Athene*]

Apologies for posting here but I've forgotten how to post a fresh question.

I don't know if @Freddd is still around here to answer this, but is it safe for me to have nitrous oxide anaesthetic next week, given that I'm not yet fully replete with B12 (i.e. much improved but still experiencing crashes after more than 10 minute walks) and still have work to do titrating vitamin D and LCF.

I have worked really hard to build up my B12 to where it is, and I still have a long way to go with it, and I'm terrified that the nitrous oxide could undo two years of B12 and folate replacement...

 

[Kathevans]

@Athene* I can't believe an anesthesiologist, or the surgeon he works with isn't aware of the issues with nitrous oxide. You can find many scientific pieces on the internet that reference this. I.e.:

Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency.
Flippo TS1, Holder WD Jr.
Author information

Abstract
Vitamin B12 (cyanocobalamin) is an integral component of two biochemical reactions in man: the conversion of L-methylmalonyl coenzyme A into succinyl coenzyme A and the formation of methionine by methylation of homocysteine. The transmethylation reaction is essential to DNA synthesis and to the maintenance of the myelin sheath by the methylation of myelin basic protein. Active vitamin B12 contains cobalt in its reduced form (Co+). Nitrous oxide produces irreversible oxidation to the Co++ and Co forms that renders vitamin B12 inactive. Five cases (four from the literature and one new case) are presented in which patients unsuspected of having vitamin B12 deficiency developed subacute combined degeneration of the spinal cord following nitrous oxide anesthesia. Patients with vitamin B12 deficiency are exceedingly sensitive to neurologic deterioration following nitrous oxide anesthesia. If unrecognized, the neurologic deterioration becomes irreversible and may result in death.

Well, this is a particularly scary one and I'm sorry for that. But I would be really irritated. Actually, appalled. It may be that with this issue you can supplement post surgery and it won't be an issue, but who knows? My advice, don't do it!

There are certainly alternative anesthesias.

And as to your thought s on methyl trap, or what I often refer to as paradoxical folate deficiency, yes I am certainly finding the same thing to be true. I am now up to 4 squirts a day of the methyl oil.

And yet, still the extreme craziness continues. I think it may be that there is huge detox going on...do we even believe in that? If I can gather and sort my thoughts on this, I will try to post, though I don't know where. It almost seems a shame to have all this good information hiding on this potassium thread!

Yet, perhaps my own current experience has to do with potassium levels, too, even more than refeeding. They were high...at about 5 in that range of 3.5 to what is it, 5.5? when I had my blood drawn yesterday, the highest they've ever been; and my sodium was, as usual low at 34, I think it was. For the moment as I sit up trying to figure out what's what, I'm sipping salt water with a teaspoon of sea salt in it--this after having 525mg of potassium at 11, 12:20 and 1:20. Way too much, right? But two nights ago in the frenzy of refeeding after the addenosyl/ methyl oil hyper excursion, it seemed to work. But that's the problem. For me anyway. The symptoms, or major symptom of heart palpitations is the same for folate, and for potassium, and for the methyl trap caused by low B12.

In any case, salt did the trick. My heart has returned to sinus rhythm. All of this makes me very nervous, of course, and not just for my heart. I don't know where here I mentioned it, but I have so-to-speak 'lost' my electrolytes, and know what it means. I was lucky to have my attentive husband get me to the hospital fast as he thought I was having a stroke. There I had a grand mal seizure, and remained unconscious for three days as they can't bring you back too fast or you develop brain swelling.

It was frightening. This loss of electrolytes is the very thing that scares me most about this methylation protocol...

For all of these reasons--B12 levels and electrolyte levels, we all need to be careful...

 

[Athene*]

Thanks for this, Kath. It's a good one. I found other articles too but he's not interested. I shouldn't be 'Googling so much' apparently. Couldn't agree more with you. It is appalling how they're brushing off my concerns about anaesthesia. I have decided not to proceed with this guy. I just don't trust him because of his refusal to engage about B12 and nitrous oxide.

He is a good surgeon and comes highly recommended so it's unfortunate for me, because I don't where to go next, but he's one of those doctors that believes b12 is 'just a vitamin, easily replaced'. He won't even let me meet with the anaesthesiologist until I'm in the hospital being prepped. And I'd be very of waiting to speak to him before the op, in case they give me some pre op sedation. Needless to say engaging with any medical personnel is very stressful and usually I stay well away from them except to get my blood tests...

Interesting about your potassium level. It is still in range though, so that's good. Did you ingest potassium shortly before the test? Yes, the salt. I find I need salt every day. I use about 1/4 teaspoon daily, including on food, sometimes more.

The electrolyte issue has been my main challenge too. I used to sink to the ground with weakness when they started me on hydroxocobalamin, then when I began methylcobalamin myself (no potassium knowledge until I found this site) and was unable to get up (muscles paralysed) then I'd get the alarming heart pounding through my chest and urgent need to pee (volumes!) followed by raging, insatiable thirst when the attack eventually passed and then I'd sleep for a day and night until the next attack. I was constantly breathless too. I didn't go the emergency services because I was afraid they'd do more damage to me and to be honest at that stage I was half hoping that one of the attacks would be the end of me. I'd had enough.

I feel your instinct about potassium is correct. I have often cast around wondering which supplement to try next, making all sorts of wrong choices, and so many times it was more potassium I needed. I was up to 4g daily at one stage but now I'm ok on 2,600mg. I was down to 2,200mg but demand increased again when I was finally able to tolerate some D3 and calcium which I'm slowly titrating.

I'm glad you have a vigilant husband there with you. I'm lucky to have mine too, but as the years go by I do worry about the toll this is all taking on his health. Happily though he's taking lots of B12 now since he had a HPylori infection (I didn't get it - phew!) and he's getting back to his old self. It only took 6 weeks for him to get back to his 8 hours deep sleep, non stop energy and no more anxiety. If only we had his genes!!