Comment by mmorse1217
3 months ago
Thank you so much for sharing your experience and your research in the other comment. I understand that it's just a hypothesis, but I had almost given up and believed that this is just how life is now. I went to the ER for heart palpitations and told the doctors to check electrolyte levels and they flat out refused and discharged me. Between this and the potential renal issues, I at least have another avenue to try to address the underlying problem.
I'll try the potassium supplements and report back. Around how much are you supplementing each day? People shy away from potassium supplementation because it can cause heart palpitations, but I already have those, similar to yours, and RDA of potassium is over 3000mg, so it's only up from here :) Thanks again.
I hear you, I was in the same boat. I had been to the doctor many times without much luck. I am outwardly healthy looking. Thin, fit with no other problems. I had a good doctor, but doctors are used to dealing with acute problems in people that are simply unhealthy. When they see me they are often dismissive that I have any real problems. I had a pretty good rapport with my doctor so he would do tests and we would have some good dialog, but he retired and, honestly, it is just too frickin difficult to go through the process of bringing a doctor up to speed on what my history is.
Fortunately for me I was able to retire at 50 and I am an avid consumer of information, so I spent an inordinate amount of time educating myself. I went down many wrong paths (as another commenter pointed out, diabetes can cause a lot of these symptoms). I wish I could say I brute forced my solution, but it was some innocuous comment on HN about potassium deficiency that made me look into it, and the rest is history. It was my “break through”, so to speak.
I take anywhere from 600mg to 800mg most days spread throughout the day depending on meals and activity level, but as much as 1000mg some days. Never all at once.
On a related note, here is the thing about measuring electrolytes – your body goes through great efforts to make sure your electrolyte levels in your blood are in balance. But here is the kicker, only sodium ‘primarily’ resides in your blood. The other electrolytes primarily reside in your other tissues. For example, potassium is mostly held inside your cells like muscle tissue. As a matter of fact, this is how muscles contract. When muscles contract, potassium temporarily moves out of the cell and sodium moves in. Then in a minute potassium and sodium reverse back to normal. This is one reason your muscles fatigue and then become usable again a short time later. When your cells are short potassium then your muscles fatigue quickly and don’t bounce back.
You can’t measure this level of potassium. Your blood levels might be just fine, but your cells may be deficient and you will never know. It is the same with calcium and magnesium (bone). If you ever get a blood test and your electrolytes are off, you probably need to be in the hospital. It means shit is so bad that your body has lost its ability to compensate. But it also means that if you go to the doctor and get your electrolytes tested, they will likely be in the normal range, but that does not mean you aren’t deficient.
Sorry for the late reply, I pick up 99mg potassium + 200mg magnesium and had an unbelievable night's sleep and many symptoms improved dramatically. The second night was confounded by an evening workout, which can mess with electrolyte levels, but you have given me hope again. I just want to thank you again for continuing the tradition of changing someone's life with an innocuous HN comment :)
I see what you mean regarding the electrolyte measurements. After reading a bit about the disorders that you mentioned, it seems like they test for serum and excreted electrolyte levels to make a diagnosis. But based on your point above, these tests can be inconclusive. Were there certain diagnostic tests that were helpful to you in coming to your conclusion, or was it largely trial and error based on symptom management?
No, I never had any tests beyond the simple blood tests checking my electrolyte levels. This was before I realized that those tests won’t show you the problem. I simply made a hypothesis and tested, over and over.
I have toyed with the idea of visiting a nephrologist, but I just can’t psych myself up for the long slog that would be. I live in a fairly large city but given the rarity of these syndromes, it would not surprise me at all if any local nephrologists have even encountered anyone with one of these conditions. I have also considered seeing a ‘functional doctor’, but just have not gone down that road. Honestly, I seem to have my symptoms under control, so what they could add at this point? There is no treatment or cure for this, only managing symptoms (assuming this is what I have, to be fair).
It all makes sense to me though. Though this is something that got bad enough for me to make a concerted effort to figure out just in the last decade, if I reflect back on my life I have seen problems associated with it back into my 20’s. In my case, I don’t think it is something that “happened” to me, but something I was born with that is just progressing as I get older.
By the way, I was re-reading a comment of yours from up above and I realized that you were referring to heart palpitations like you were already getting too much potassium. Here is the thing – you can get heart palpations from too much AND too little potassium. Also from too little calcium. Just food for thought.
I have updated my profile with my contact info. If you ever go down the route of getting diagnosed or have any other questions, feel free to contact me anytime. Good luck!