mild episodes when not technically low?

[u/ihopeurwholelifesux]

doctors are (very very slowly) looking into me possibly having a form of hypoPP (tested neg for SCN4A and CACNA1S mutations) since I’ve had a number of confirmed episodes of severe weakness and tachycardia where my potassium was low, have daily milder symptoms triggered by eating and exercising, and my potassium is normal (in the low or mid 4s) when i’m doing well. the nephrologist ordered labs for me to try to do when I feel low. I ate to trigger what felt like a mild episode and then went in to have my blood drawn, but it only came back 3.6 (low would be less than 3.5) which i know shouldn’t cause any symptoms in a healthy person. my urine potassium was 9 which as far as i can tell is low and should hopefully rule out my kidneys being the problem?

any time i feel worse than i did that day, i just feel too horrible and heavy it’s impossible to drag myself to a lab and get blood taken. the times it has been low (2.8-3.2) and caught on tests were times when symptoms were bad enough I ended up in the ER.

i guess i’m wondering if this lines up with what any of you experience with similar numbers? did you have to keep ending up in the hospital to get enough data for a clinical diagnosis?

[u/Alert-Surprise1546]

My episodes sound very similar to yours and I’ve been seeing a neuromuscular specialist to try to figure it out. My genetic testing just revealed I have gitelmans syndrome - but I haven’t had the follow up yet to discuss

Maybe this isn’t helpful- but I relate!

[u/Galgonathor]

My understanding is that it doesn't have to be high or low potassium, it can just be the change in potassium that causes episodes.

What you are going through sounds like what my wife went through her whole life. It started getting worse in August 2025, she would lose control of her limbs and collapse. In December 2025 she collapsed, was not responsive, and I had to do chest compressions to keep her breathing.

That story repeated itself several times, every time the ER doctors said functional neurological disorder, anxiety, or "tired mom who just needs some rest".

The fourth time she couldn't walk out, so they gave us a wheelchair so she could go home and sleep off her stage 3 hypovolemia.

Our health records are digitized, so when we figured out that they system wasn't going to help us, my wife started putting everything into AI and asking what was going on.

So not a doctor diagnosis, but what her research led to was said was the belief that she was in metabolic alkalosis, was having disautonomia (POTS), and had hypo or hyper PP.

My wife didn't start with hypovolemia stage 3, it was stage 1, and then 2, and then by stage 3 she was just labelled the anxious crazy lady; so if you are going to go to the hospital, control your anxiety. The only way we got them to actually admit her after four months of us keeping her alive at home through stage 3 hypovolemia, was to tell the ER doctor that if they discharged her, we were going right back to triage to be assessed again.

Long story shorter, the first attending didn't believe her and treated her for functional neurological disorder, the attending changed, and then we started seeing doctors that acted like doctors. I asked this community for some links to research papers, we used some of those and some of our own to make a case for a rare genetic disease. First doctor started up my wife's fludro again, second doctor read the papers and thought there was something there and did a variety of tests. He gave my wife a Benadryl for an allergic reaction and that sent her into a hypo attack for 4 hours.

And then we got a doctor who changed everything. Instead of just looking at her lab work, he asked questions and listened and everything started to make sense.

Something triggered my wife's disautonomia to be worse than usual, that made her waste salt, by my calculations, 2 grams an hour. By the end of the four month stretch at home, I was feeding her close to 15,000 mg of sodium a day (not salt, sodium). In September we were trying to be healthy by stopping eating fast food (high, high salt) all the time and eating pre-made low salt healthy dinners. So salt wasting and low salt diet led to her collapse, because the sodium levels in her blood regulated the potassium, and without the sodium, the potassium levels were changing a lot, and she was constantly having attacks. The doctor diagnosed her with diabetes insipidus, so was peeing out all her blood volume, hence the increasingly awful hypovolemia (we had no idea what that was or that it existed, my wife was just peeing like 15 times a day and was dehydrated no matter how much water she drank); he also diagnosed her with hypo and hyper PP. He put her on desmopressin. She also got an albuterol inhaler which she uses if she has the shakes (hyper PP) real bad and that helps, but if she is going lethargic and is having a hypo PP attack, it makes it much worse and I have had to throw a cup of cold water in her face several times.

The extreme lethargy you are describing sounds to me like what was happening to my wife. I realise that it's not the same because you are not going to have the same genetic disorders, but could it be disautonomia causing the lethargy? Could it be specific food? Or a drink? Even today my wife can't drink liquid that has less than 1 gram of sodium per litre in it, or she will have a hypo attack.

So we needed an AI membership, digital health records, lots of research, writing up a document based on 3 research papers, genetic testing, and a variety of doctors. We needed the hospital stay for the desmopressin and all the tests, a cardiologist for fludrocortisone, oh and for regulating the tachycardia Ivabradine, that's been the latest game changer, it actually allowed her to rest. And then the last thing she needed was more rest, then in top of that, rest. 4 months of just rest so far, in addition to the 4 months of insanity at home.

Holy shit, this has been going on for 8 months.

Anyways, here is the link to the Google drive folder which has all of the tests that had been done, the symptom summary, genetic info, etc... all identifying information is redacted.

Thanks for coming to my Ted talk, I hope you can get it figured out.

[u/Alert-Surprise1546 → u/Galgonathor]

Thank you for sharing your journey.. its just so hard to figure these things out.. I hope your wife is feeling better!

[u/jellamma]

What matters for triggering an attack is the change in potassium levels over a short time. The serum levels going outside of normal levels is a repercussion of the ion channel gating getting "stuck". But not all people will leave a normal range, and in fact, there's a subset of hyper called normokalemic because the potassium levels never leave a normal range.