Help me figure out sudden sodium/electrolyte intolerance?

[Aspen]

Hey folks, I’d be happy for any pearls of wisdom you can toss my way. About a month ago I suddenly developed extreme symptoms that seem sort of like an electrolyte imbalance - crampy/tense muscles, big headaches & migraines, diarrhea, kidney pain, inability to sleep, extreme thirst. I got a blood and urine workup and everything showed normal. But my GP and I wondered if it was maybe due to the Hydralite I was taking to manage my POTS, since it has sodium bicarbonate which can be hard on the kidneys, and I’m waiting to see a specialist for that already anyways due to an irregularity that showed up on a CT scan. So I stopped taking all my supplements for a week, and these new symptoms disappeared after about 72 hrs.... except of course my POTS went through the roof.

About a week after I felt like whatever it was had left my system, I started taking just sodium and water to manage the POTS. I started out slow and after a few days I had 3 really good days taking around 8 g/day of sodium (My POTS used to be stable-ish on 1-2 L of electrolyte fluid and a small dose of sodium in the morning to kick start the day). But then all the same symptoms started coming back again about 48 hrs ago, except no kidney pain this time. My doctor and I are stumped (she’s awesome but I’m her first ME/POTS patient so we’re figuring it all out together). I’m going for more lab work tomorrow, but I doubt anything will come up. I’m back to taking no supplements again, and the POTS is starting to really do a number on me. I can barely sleep or rest at all without some kind of support for my blood volume.

Any suggestions of other labs I could ask for? Or what the heck could be causing this reaction? I was so happy on my electrolyte solution before... I really hope I can go back to something like that again soon, but this is a very confusing turn of events.

 

[Aspen]

Is there any way it could be related to Vitamin C? I had stopped taking Vit.C for about 6 months because I realized I have an orange intolerance, but about a month ago I started taking it again to see what would happen and everything seemed fine. Just trying to think of what else has changed recently that could be contributing.

 

[L'engle]

Have you tried potassium? Leg cramps and headaches are symptoms that happen when potassium is low. The extra salt might be causing a potassium need as the two have to be kept in balance. Welcome to the electrolyte game.

 

[dave11]

Bicarbonate is a negatively charged ion. It combines with a positively charged ion to leave the body. ---- potassium, magnesium?

"The kidney responds initially to an abnormal bicarbonate load by inducing a bicarbonate diuresis in which there will be loss of sodium, chloride, potassium, and volume. The reduction in volume can decrease the glomerular filtration rate, which will further decrease the filtered load of bicarbonate [9]. Hypokalemia and hypochloremia also contribute to bicarbonate retention"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3770998/

 

[dave11]

Is there any way it could be related to Vitamin C? I had stopped taking Vit.C for about 6 months because I realized I have an orange intolerance, but about a month ago I started taking it again to see what would happen and everything seemed fine. Just trying to think of what else has changed recently that could be contributing.

High dose vitamin C (ascorbic acid) is highly acidic in the digestive tract, and can have a diuretic effect. The diuretic effect could possibly influence the mineral balance.

Have you tried potassium? Leg cramps and headaches are symptoms that happen when potassium is low. The extra salt might be causing a potassium need as the two have to be kept in balance. Welcome to the electrolyte game.

"The electrolyte game" A magnesium, potassium, or other mineral deficiency may be worth considering.

 

[wabi-sabi]

I'm not sure, but here are my thoughts...

1) Are you sure it's kidney pain and not back pain in the area of your kidneys? Have you had kidney function tests to make sure they are OK?

2) Could your symptoms be an ME/CFS crash enabled by better blood pressure? This happens to me sometimes. I tank up on salt and fluid, feel a bit better, and promptly crash myself with overdoing it.

3)Are you taking more supplements than water and salts? If so, could they be related to these symptoms?

4) Is there something else going on here that's unrelated to the fluid and salt, but for some reason is happening at the same time? What was going on when the symptoms first happened? What made them go away (if they did) other than stopping your POTS treatments?

5) Are you monitoring your blood pressure at home? Do the symptoms track with fluctuations in BP?

 

[Aspen]

Thanks everyone, super helpful.

The extra salt might be causing a potassium need as the two have to be kept in balance. Welcome to the electrolyte game.

Hahaha, anyone got the ‘electrolyte game’ rulebook handy? My potassium came up normal after the first episode, but since all my bloodwork always comes back normal I’m not always sure how seriously to take the results. We’ll see what this round of labs say. The Hydralyte I was initially taking has potassium in it, and I do eat bananas and coconut products regularly, but it easily could be too little for the amount of sodium I took this last week.

High dose vitamin C (ascorbic acid) is highly acidic in the digestive tract, and can have a diuretic effect. The diuretic effect could possibly influence the mineral balance.

I take 500mg of Vitamin C along with 1000 IUs of Vitamin D3 so I was thinking the levels would be safe. I also supplement with Calcium/Magnesium (have been for 20 years to help with migraines), but it definitely feels like something happened to throw things off balance so maybe I need to re-evaluate the whole supplement regime with my Dr and start from scratch. I am a bit worried about the kidneys, since so far all I know is I need to see a specialist... makes me want to steer clear of the bicarbonate for now, in my very uneducated opinion.

Is blood work a reliable way to get electrolytes evaluated, or is there some whacky thing my body could be doing that prevents what’s in the blood to be used properly by my cells?

 

[wabi-sabi]

Is blood work a reliable way to get electrolytes evaluated

Yes.

 

[Aspen]

1) Are you sure it's kidney pain and not back pain in the area of your kidneys? Have you had kidney function tests to make sure they are OK?

I’m totally guessing this was kidney pain and not back pain, haha! All I know for sure is that it’s in the kidney region and I haven’t had that pain before, and my urine has been totally clear during these episodes. I’m thinking kidneys because a CT scan from the summer showed scarring on them and I’ve been waiting to see a specialist ever since (8 months and counting). They did all the standard blood tests for kidney function, I can’t remember the details at the moment but nothing was really conclusive. I was working with walk-in docs at the time, hadn’t been matched with a GP yet so I don’t think anyone was really paying close attention at the time.

2) Could your symptoms be an ME/CFS crash enabled by better blood pressure? This happens to me sometimes. I tank up on salt and fluid, feel a bit better, and promptly crash myself with overdoing it.

Ooo, this has totally been me sooo many times! But not this time, I’ve been keeping myself on a very short leash lately. Very proud to tell you that. I recently adopted the 10% pacing rule, thanks to Dr. Stein’s self-management course. I have to feel stable for 2 weeks before trying 10% more activity. So far I’ve made it to 7 days of stability, being 99% bedbound. No new activity yet.

3)Are you taking more supplements than water and salts? If so, could they be related to these symptoms?

4) Is there something else going on here that's unrelated to the fluid and salt, but for some reason is happening at the same time? What was going on when the symptoms first happened? What made them go away (if they did) other than stopping your POTS treatments?

Good questions. I’ll keep paying attention in case more clues come up. I don’t take too many supplements - probiotics, Cal/Mag, VitC, VitD, Omega 3 and Cyano VitB. I stopped taking all of them until the symptoms subsided, and then started taking them again for a week until the second episode. I did experiment with Ubiquinol for a few days leading up to the first episode, come to think of it. I haven’t taken it in the last 2 weeks but it is something else new that could have thrown the system off.

5) Are you monitoring your blood pressure at home? Do the symptoms track with fluctuations in BP?

Yes, BP has fluctuated wildly ever since I got sick, both high and low, so I check it daily. It seems like it spiked after the new symptoms showed up and went even higher (140/120) when I stopped drinking electrolytes/sodium. I was relieved when the first episode was over and I could go back to POTS treatment, cuz it dropped to a normal range within a morning after starting sodium water again. It’s a bit high again now, but I’m wearing compression stockings and seems to be keeping things in check. But I learn something new every week about what affects what in our bodies, always interested to see what the next puzzle piece will be.

 

[wabi-sabi]

The trouble with ME/CFS is figuring out what tests to run. So many routine lab tests come back normal for us despite being desperately sick. If your electrolyte levels are normal you can trust that test result and start looking for other causes of the problem.

 

[Aspen]

After reading this all, I feel very cared for, thank you.

 

[wabi-sabi]

It seems like it spiked after the new symptoms showed up and went even higher (140/120) when I stopped drinking electrolytes/sodium.

I think this would be an important clue to talk over with your doc. I thought BP normally went too low in POTS...

 

[wabi-sabi]

After reading this all, I feel very cared for, thank you.

@Aspen that's so sweet! Glad at least that part is better even if the medical stuff is weird and scary.

 

[dave11]

I take 500mg of Vitamin C along with 1000 IUs of Vitamin D3 so I was thinking the levels would be safe

500 mg of vitamin C daily is a low dose, and I do not think it would have any impact on electrolytes.

1,000 IUs of vitamin D daily is a low dose. I do not think it would have any effect on electrolytes. For purposes of warding off covid, a higher dose may be prudent.

 

[L'engle]

Is blood work a reliable way to get electrolytes evaluated

That's debateable. It reliably tells you what the electrolyte level at that moment is, but they can be very volatile and change throughout the day, night, so a one time reading is just an indicator of the levels at the moment of the test.

As well the amount of stored minerals in your system, the amount your body has to work from in regulating your bloodstream levels, can't be measured from a standard blood test (I believe there is some other way of doing this. @pamojja was it you who was writing about a whole blood test or some such?).

If the blood levels become unbalanced your body is supposed to seamlessly pull from stored amounts to regulate the blood levels. However, the number of ME/cfs people and others who take minerals to relieve symptoms points to how this doesn't always work flawlessly.

Also you ask if there are factors that can prevent the amount of electrolytes in blood from being used in cells and the answer is unfortunately yes, at least in the case of magnesium and calcium, vitamin K2 is needed for proper transport to cells, though most people won't likely need to supplement with it. Potassium and sodium transport are similarly affected by multiple co-factors.

Hopefully you won't have to think about any of that. If you can get your potassium from food sources that's ideal. If you feel better after eating a potassium rich food then it's a good indicator. Bananas take about an hour to get a noticeable relief in low potassium symptoms for me. I hope your issue is simple and easily solved!

 

[pamojja]

As well the amount of stored minerals in your system, the amount your body has to work from in regulating your bloodstream levels, can't be measured from a standard blood test (I believe there is some other way of doing this. @pamojja was it you who was writing about a full serum test or some such?).

I used easily available whole blood tests along with regular serum mineral tests to get indications of what the red blood cell (RBC) intracellular content of a mineral really might be. Especially important with my main deficiency in magnsium. Which usually is best tested directly in RCB (a test not available to me), because it is thightly regulated in serum by homeostasis (ie. before it falls too low in serum, all your tissue and bone-stores of magnesium became depleted).

This tight regulation in serum might also be a problem with some other electrolytes. Additionally 'normal ranges' are only statistical constructs by subtracting the lowest and highest 2.5% of all tested. Which is based on the misleading assumption that 95% of all tested would be healthy, and would have healthy ranges. In reality most who get tested are ill to begin with.

Therefore to get better indications even from serum electrolye tests I also compare it not only to 'normal', but also to 'optimal' serum levels. Unsually derived from decreased mortality in population studies, or clinical observations from functional medicine practitioners.

Examples (with the understanding even those 'optimal' ranges due to individuality might not really be; and that any blood test is only a temporary evalution not worth freaking out over):

Sodium mmol/l: 136 - 145 normal / 142 -145 optimal range
Cacium 2.2 - 2.55 / ~2,4
Potassium 3.5 - 5.1 / 4 - 5
Magnesium 0.66 - 1.07 / > 0,86
Chloride 98 - 108 / ~107
Phosphate 0.87 - 1.45 / ~1,29
Ferritin ng/ml: 30 - 400 / 50 - 90
Copper µg/dl 65 - 165 / 75 - 100
Zinc 73 - 127 / 90 - 130

For RBC Magnesium mg/dl: 4.2 - 6.8 / ≥ 6

 

[Aspen]

Therefore to get better indications even from serum electrolye tests I also compare it not only to 'normal', but also to 'optimal' serum levels. Unsually derived from decreased mortality in population studies, or clinical observations from functional medicine practitioners.

So interesting, thanks. Yesterday’s bloodwork all came back in the normal range, but Calcium and Magnesium were low normal. I have a phone call with the doctor at the end of the day to review so I’ll ask her about that.

The other thing I realized this morning after looking back through my charting is that I’ve been having increased mast cell activation symptoms since about the week before the first episode. The most acute reactions were definitely from hidden corn sources, which I always react to quite badly. And then I realized that I think my Vitamin C supplement AND the electrolyte solutions I’ve been using all have corn products in them. So maybe this is all MCAS symptoms from corn? A promising theory, but difficult to fix... where in the heck do you find glucose powder for ORS that isn’t from corn or rice (another severe intolerance)??

 

[Aspen]

I think this would be an important clue to talk over with your doc. I thought BP normally went too low in POTS...

I thought that too and was very confused by my high/low pattern until recently, when someone posted in a thread here that high BP can sometimes be the body overcompensating for low blood volume. Since then, every time I get high BP I try ORS or saline water, and my numbers drop within a couple of hours, often within 20 mins. Not that I fully understand the whole thing, but it does seem to work in my case.

 

[Aspen]

I used easily available whole blood tests along with regular serum mineral tests to get indications of what the red blood cell (RBC) intracellular content of a mineral really might be. Especially important with my main deficiency in magnsium. Which usually is best tested directly in RCB (a test not available to me), because it is thightly regulated in serum by homeostasis (ie. before it falls too low in serum, all your tissue and bone-stores of magnesium became depleted).

I’ll follow up on this too, great suggestion.

 

[wabi-sabi]

Since then, every time I get high BP I try ORS or saline water, and my numbers drop within a couple of hours, often within 20 mins. Not that I fully understand the whole thing, but it does seem to work in my case.

I think you've figured out something important here. It does make me wonder/think if the issue is your POTS getting worse and maybe the spasms, migraines, diarrhea stuff are your body hopping itself up on adrenaline to try to compensate for the low volume and low BP. Then you get that high BP, as you said, when the body is trying to compensate for the low and just overdoes it.

Has anyone who knows about POTS evaluated it lately?