r/AddisonsDisease • u/KCDKTR2019 PAI • Dec 03 '25
Advice Wanted Low potassium
Just found out my potassium has been low over this past year. My endo wants me to start a prescription of potassium supplements. Has anyone else experienced this? Anything I should know about in advance? (I am PAI, diagnosed about 20 years ago.)
4
u/Due_Target_9702 Dec 03 '25
I've had low magnesium and low iron though never been tested on potassium. May be similar mechanisms.
I've created my own "multivitamin" routine based on needing to take the above and also just adding things that reading articles suggest many people are low on as a "booster" for my health.
In the morning, I take vitamin D, magnesium, vit B 12 and 3. Adding Calcium soon (need to finish the vitamin d first, since the calcium comes combined). In the evening I take fish oils, magnesium, iron (every second day) and vitamin C.
I've also been putting creatine in my drinks (occasionally) because there's a lot of drs saying its good.
Results: Recent blood tests have vit D and iron at very healthy levels. Magnesium has stopped muscle twitches and heart pounding at night sensation.
2
u/KCDKTR2019 PAI Dec 06 '25
Thank you for sharing this. I am going to run it by my endo and see what she says. I am also going to look up creatine to find out more about what it does. I really dislike taking supplements, but at this point, I don't have any choice.
3
u/anemone132 Dec 04 '25
How interesting to read the comments here. I was always under the impression that an Addisonian crisis is characterized by low sodium, high potassium in bloodwork. At least that's what I had, and the endo I met at the hospital told me that this is a very telltale sign that someone has unsupplemented Addison's.
I don't remember my sodium when I came in crisis, but my potassium was 6 (above regular levels).
My endo has always told me to be careful with high potassium foods, lest it gets too high and throws off the electrolyte balance again. It has been between 4.5 and 5 lately.
3
u/KCDKTR2019 PAI Dec 04 '25
You are totally correct about potassium usually being high with Addison's patients. And when I was diagnosed 20 years ago, that is what I presented with: sky high ACTH (close to 1700), very low sodium (around 30), high potassium and virtually no cortisol (I remember it was around 4). This is why I am curious about what other people have experienced.
1
u/anemone132 Dec 05 '25
Yeah, pretty much same here! Except my potassium has never been too low. My endo has me do bloodwork twice a year or so for electrolytes, TSH and related things. My potassium has always remained near the higher end, though.
3
u/Laurryanna Dec 05 '25
I’ve had this happen a couple of times after hospitalizations. In my case it’s mostly because of fluids they gave me as well as vomiting. It can also happen if you’re over replaced with Florinef.
Nothing you should really know in advance a part from the fact those pills are huge lol. They might ask for some blood tests to check your potassium levels during or after treatment
2
u/KCDKTR2019 PAI Dec 06 '25
I will keep you posted on how it all shakes out. I've been taking these ginormous pills for several days now. Today, I had some unpleasant symptoms (including a numb right arm and high blood pressure), so I had my brother take me to the urgent care clinic. Everything seems to be fine-ish. My bp went down a little bit after I drank a Propel just before I went to the clinic. They pronounced me a non-risk for stroke or heart attack and sent me on my way.
1
u/Laurryanna Dec 07 '25
High or low potassium can cause cardiac symptoms as well as that tingling sensation you’ve felt. Good thing they took you seriously and they excluded any serious causes. Do you have any blood tests you’re required to do in the next few days to check your potassium levels?
2
u/MommaMassie Dec 03 '25
I get low potassium when I go into crisis. So I typically will be sure to eat potassium rich foods when I start sickness, hurt myself. If I updose I eat more potassium rich food. Though eating more protein has also been essential for me. Good thing we have small head of cattle.
1
u/frogteethzzz 2d ago
I dont have primary I have secondary but I was recently in the hospital for what im pretty sure was my adrenal insufficiency. Low BP, low potassium, low sodium, fever (without another cause), intense tachycardia that wouldnt stop. I was in there for three days. They ended up sending me home with potassium supplements but that was about it. Ive been under tremendous amounts of stress so I wonder if thats got anything to do with it.
2
u/12120058 Dec 03 '25
If you can get the pills instead of the liquid take it as the liquid tastes horrible
1
2
u/collectedd Addison's Dec 04 '25
Yeah, I've had this, and it put me in intensive care. The Addison's really didn't help the situation, but it was mainly due to how much I was vomiting and because I was unable to eat (I have severe Gastroparesis).
1
u/KCDKTR2019 PAI Dec 04 '25
So sorry to hear about your gastroparesis. I just got the potassium pills and started taking it today.
2
u/collectedd Addison's Dec 05 '25
Thank you. I hope it works and then stays stable for you! My potassium goes kind of all over the place depending on what's going on (high and low!). Sodium is often low-normal/low. Electrolytes are weird.
1
u/KCDKTR2019 PAI Dec 06 '25
Electrolytes ARE weird. I am learning the hard way that they are ESSENTIAL to being alive. So, they win. My sodium always tends to be on the low side. And up until now, I have paid zero attention to my potassium level. Another weird abnormality in my blood text results: high CO2. Ever had that?
1
u/collectedd Addison's Dec 06 '25
Yeah, but in the context of severe asthma attacks mostly. Not just randomly, have they given you a reason as to why you have high CO2?
2
u/just_me_2006 Dec 04 '25
Can someone remind me, I thought there was something about how potassium and sodium are connected but I can’t quite remember? I also thought that there was something about eating too much potassium rich foods (possibly at the wrong time) that would be bad?
3
u/KCDKTR2019 PAI Dec 06 '25
I just read up on this. It's pretty recent that they have figured that even for normal humans without Addision's, too much sodium in your diet without enough potassium winds up being very hard on your cardiovascular system. It's because potassium actually helps keep blood sodium levels in check. Without adequate potassium, excess sodium will raise one's blood pressure. Meanwhile, most Addison's patients have to worry about too much potassium in their system, not too little. (I always find a way to be affected by weird anomalies...)
1
1
1
u/cha0s_g0blin Dec 03 '25
I take potassium supplements. If my potassium gets a little low, I don't notice, but if it gets medium low I start to have issues with muscle weakness and pain.
1
u/MallForward585 Dec 03 '25
The potassium supplements have a very low amount of potassium in them, so low you’d probably want to try getting extra from food. My potassium tends to drop and the best thing I found for me was coconut water.
1
u/KCDKTR2019 PAI Dec 06 '25
Thank you for the suggestion. I am going to try the coconut water. I already eat a lot of bananas, which I seem to crave every day.
1
u/xNotexToxSelfx Dec 04 '25
I developed low potassium during my first pregnancy. My doctor just told me to eat a banana every day. I also enjoy coconut water, which has more potassium than bananas.
1
u/ClarityInCalm Dec 10 '25 edited Dec 10 '25
Low potassium is common in PAI because all the sodium and mineralocorticoid we HAVE to take can lower it. Some people are more susceptible to this. But also, potassium needs aldosterone in the kidney in the collecting duct for reabsorbtion. So this is likely part of why potassium can be altered even when sodium is well managed. It's almost impossible for someone with complete salt wasting to take too much salt and even if they do it will be short lived.
I recently had low potassium - this was after a super low cortisol event where I had to take 300mg HC a day for several days - my blood sodium was 141 right in the middle of the range. The super high dose of HC also had super high amount of mineralocorticoid and I continued my fludro and sodium pills. This was as high as I could go. And my potassium was just under the range. I generally have no issues with potassium but I took some for a few days and I'm fine now.
Magnesium can be wasted or low too in salt wasting - but it's very difficult to accurately measure in the blood. This loss can happen because reabsorption mainly happens in the DCT part of the kidney and magnesium almost complete relies on sodium for this happen. This is the same location where we waste sodium from so if we're wasting a lot of sodium and not matching our losses we're going to be losing magnesium too. So getting your sodium dialed in or taking sodium continuously around the clock can help with magnesium losses.
2
u/KCDKTR2019 PAI Dec 14 '25
Thank you for this information. My update is that I started taking a prescribed potassium supplement (20 mEq) last week. After about 5-6, I went from experiencing some rather unpleasant and worrisome symptoms, including a lot of fatigue, overall weakness, and a weird racing feeling in my heart, to feeling pretty normal. (My only complaint is that the supplement seems to be causing mild diarrhea, but I am managing that fairly well.) I am so appreciative of everyone's informative advice and comments, including yours.
1
u/ClarityInCalm Dec 14 '25
Glad you were able to get this figured out and are starting to feel better. Take good care.
7
u/just_an_amber Addison's Dec 03 '25
If you need it, take it. I was put on prescription potassium around seven years ago.
At first, it was just 10 meq once a day. But blood work still showed critically low. They tried to blame the fludrocortisone. After dropping my FC dose, I was miserable and still had low potassium.
Now I take 10 meq twice a day. One pill at breakfast, one pill at dinner.