Low potassium…

Tests went all good today.

However my symptoms of muscle cramps, sweating, elevated bp, pain, dyspnea, and nausea had become worse overnight.  I asked them to run a istat blood check on me while I was at the clinic.  My potassium was down to 3.0.  Since my doctor was out till tomorrow the in clinic heart failure doc just wrote me a new prescription for potassium supplements, told me to take a triple dose when I got home and follow up with my regular HF doctor.  The gal at the front desk was able to get me in tomorrow afternoon.

What I can't figure out is why my potassium was so low, I am on turosemide now 40mg a day, 25mg spirolactone, and the milrinone drip.  They had said I didn't need potassium anymore due to the spiro and milrinone.  Why would my levels drop so low all of a sudden?  The HF doctor seemed baffled as well.  I wasn't dehrated, no diarrhea etc.  He is guessing all my "new" worsening symptoms are due to the low p.  I am worried I am having a bad reaction to the milrinone, or a non responder.  After a short shower last night my bp jumped to 140/100 with a heart rate of 140 that did not resolve after rest and cooling off.  Can anyone tell me if this is a sign the milrinone is no longer doing its job, side effect, or sign of worsening pump failure.  Today was a miserable day physically for me.  We are scared we are running out of options if the milrinone does not work.  Any insight would be helpful.  Also I am curious if anyone else gets extremely sick with a p level of 3.0?


potassium level

by Tulp - 2021-06-09 01:25:10

Hi Asully

So happy to hear your tests went well !

As far as potassium level, I had a low level, (3.1) despite the daily potassium supplement I have since 6 months.

The doc told me that it goes together with sodium level. If one is too high, the other goes down. I don't have the impression it makes me sick to gave a liw level.

I must admit I do not always follow the low salt diet I'm supposed to follow...

I know nothing about milrinone. Not very helpful, sorry





Total body potassium...

by crustyg - 2021-06-09 03:27:30

Plasma potassium levels often reflect total body K: you can achieve very fast changes in plasma K by affecting the balance between intracellular K and extracellular, and IIRC milrinone will shift the balance towards intracellular K over extracellular => low plasma K.

The kidneys fairly quickly become adapted to spironolactone.  You've been on maximal doses of diuretics for ages, so have a low total body K.  The milrinone will shift what little extracellular K you have to the intracellular space, hence the need for K supplements.

I've seen a patient (with an extremely rare inherited disorder) with a plasma K of about 1.0mmol/L who couldn't lift limbs against gravity (caused by dramatic shift of K to the intracellular space).

In your shoes I'd avoid any of the 'Slow-K' massive tablets (they have a nasty habit of getting stuck in the lower oesophagus and then burning a hole there) and going for the (admittedly horrible) soluble K-tablets which you just drink.  You need the K and it will improve *all* muscle function, including your heart.

a little suggestion

by quikjraw - 2021-06-09 04:18:42

Hi Asully,

I do not know much about the issues you are facing but I do know that excessive caffeine has been shown to cause low Potassium.

I hope you improve soon.

Kind regards



Thanks crustyg!

by asully - 2021-06-09 05:01:40

Best explanation in less than a minute!  I spent a few hours reading up after posting and discovered the milrinone link but wasn't sure how it all tied together.  Then I found a recent 2020 article that showed hazard ratios for end stage HF patients with low K and risk of arrhythmias/SCD,  freaked myself out a bit and decided to get my nose out of the books.  According to the most recent article low k is just as dangerous as high p for advanced HF.  Apparently the new recommended guidelines are to keep serum k above 4.0 to avoid high risk of scd.  Considering this is the second time I have been below 3.5 since starting the milrinone I am going to make sure they keep me on supplemental k (honestly I don't really get why they ever stopped the klorcon, I have always had a tendency to run towards low normal even in spiro. 

I was on the horse tabs for most of the last five years and have had them get stuck a number of times and it's not a pleasant feeling.  I will have to ask about the other option.  I also read its standard operating procedure to give IV k when levels drop below 3.0, guess I am lucky I had that istat done before I got any worse and had to do another overnighted.

Hopefully it was just an oversight with not monitoring labs carefully with the added milrinone and my symptoms at least dip back to where they were.  I am still very worried about being a non-responder with milrinone and my 7 cup-450 polymorphisms.  I can't seem to find the specific metabolic pathway for milrinone and my docs don't know either (I usually do the leg work on checking my metabolism problems for them). I am curious if the repeat onset of peripheral cyanosis is because my body is doing wonky things with the milrinone metabolism.  If that's the case I wonder if they can try a different inotrope?  Many questions as always hopefully get some answers at my follow up today (although I tend to usually leave with more questions rather than answers, maybe I should stop asking so many questions lol).

If it was mostly a rapid drop in plasma K concentrations I will follow up in this link so people can reference it in the future.  The load of symptoms was awful!  

Good news is the last of my labs from today have loaded in and so far nothing has showed up in screening to disqualify me from being listed. The last gamut of tests are scheduled for Thursday all day, followed up with the surgical consult, crossing my fingers I get onto the next phase.  

On a slightly lighter/ dying humor note:  the dietitian tried to suggest marinol to stimulate my appetite.  When I laughed and told her I can't handle weed it makes me anxious and elevates my HR she got confused.  Apparently she was unaware that marinol is synthetic thc.  I a guessing most of the ignorance is due to the fact the even medical marijuana still is not legal in my state (not like where I moved from a year ago and even recreational Mary Jane is completely legal).  Either way no thc for me, the last thing I need is a drug induced state of paranoia lmao, I will stick with zofran.

You are making progress

by Gemita - 2021-06-09 05:57:08

Dear Asully,

My husband often has problems with low potassium which can be induced because of acid/alkaline imbalances.  He is also known to suffer from hyperventilation problems which seems to exacerbate his difficulties.  

It came to a head when he collapsed in Italy some years ago and they found he had both low potassium and low magnesium.  They suggested his low magnesium and an overactive thyroid needed treating as well.  His potassium level we were told was at 2.7 mmol/L.  His electrolytes were corrected intravenously in hospital and then he was given soluble potassium for around a week I believe.  

All I can say is please try not to overthink any of this or to suggest that Milrinone is the culprit.   There are so many possibilities.  Now you have evidence of a low potassium level, you can hopefully get this corrected and watched which might help with many of your symptoms in the future.   A soluble potassium supplement is all that you might need from time to time to correct any imbalances.  You have been through so much stress recently Asully both physically and emotionally, including the CRT-D procedure under a general anaesthetic, have suffered hypothermia, low blood pressure and other distressing symptoms.  Is it any wonder that your electrolytes are affected too.  Perhaps you have found a cause for your heart rhythm abnormalities, the tachycardia. You are gathering valuable information daily and this is vital for you.  Together with your doctors you are a strong team - and no you are not asking too many questions.  You need to keep everyone on their toes.

Great news so far on your evaluation process.  


Yes, step away from the google

by Julros - 2021-06-09 15:32:36

We can certainly get caught up in all the what ifs when we start searching, and I think confirmation bias will lead us to what we want to believe. You are worried about the milrinone, so you eye is drawn to the negative. Not your fault, but I think we are wired that way. My card office called the other week out of the blue to schedule an echo and I had a full out panic attack thinking something had shown on my remote interrogation. Nope, just their routinely poor communication that is just a normal follow-up. 

Electrolytes are so vital and so many things can influence them--diet and absorption, meds, kidneys, renin-angiotensin-aldosterone system. Good call to get a stat level checked. I hope this makes your provider aware that your potassium will need closer monitoring. 

My understanding is that oral potassium replacement is much more effective and quicker than IV, and is preferred unless a patient just can't swallow. As for big horse pills, if you can stomach it, applesauce is a great tool to help slide down the horse pills. 

K levels back to 4.0

by asully - 2021-06-10 01:00:29

The klorcon horse pills did the trick.  Doc says he isn't sure why it happend as it could have been any number of my medications or some other imbalance.  Today was better than the last 4-5 day, but still not as good as it was 6 days ago.  We are doubling my spirolactone dose to 50mg, and keeping me on one horse pill supplement a day to try and keep me balanced.  We are going to keep a closer eye on my blood work, which is already done weekly by my home nurse and make sure my levels are balanced.

He is not sure that is all that caused the exacerbation.  So next steps are to finish the transplant evaluation tomorrow, get my dental clearance for transplant listing Friday.  And hopefully get me on that list as status 4 the following Wendsday.

He is also having the the transplant psychiatrist speak with my clinical psychologist then meet with me to see if we can try and find some medications to help with QOL.

I see him again in 2 weeks unless I get rapidly worse and if at that time I am the same as today or worse he wants to do a repeat right heart catheterization to see what my actual heart function numbers are looking like with the Milrinone.  This will give him a better idea of whether it is worsening pump failure despite milrinone, or if some of the symptoms are being caused by medications etc.

Up again in 5 hours and back the hospital! What a week!  I will be relieved when the evaluation process is done.  I haven't had any solid REM sleep all week, and my anxiety and stress can't be any good for me either.

You know you're wired when...

You participate in the Pacer Olympics.

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