Low potassium

[Scotiaspirit]

Just curious, does any other PALS here have problems with low potassium? My doc just doubled my liquid supplement from 20 mEq 2x daily (15ml Potassium Chloride liquid 2x daily) to 40 mEq 30 ml 2x daily. This is in addition to 2880mg Potassium (total) 480mg x 6 @240ml cans of my IsoSource with my tube feed. I have a total of 1 to 1.5 litres of distilled water in my flush with my tube feeds daily. Not sure what my actual potassium level was, but my docs office called me saying my potassium levels were very very low.

Paul

 

[KimT]

What kind of formula do you use? Maybe an acacado/banana/yogurt smoothie would help. They are all very high in K.

 

[Scotiaspirit]

I am on Potassium Chloride prescription and have to now take 40 mEQ of potassium twice per day which is equivalent to 6000mg of Potassium daily in addition to what is in my tube feed. (20 mEq of Potassium is equivalent to 1500 mg).

 

[KarenNWendyn]

Paul,
Usually people who have low potassium levels ate because they are on diuretics (hydrochlothiazide or furosemide) or combination blood pressure medication containing one of these diuretics. Occasionally low potassium can be the result of some kidney conditions or due to gi losses (diarrhea or malabsorption). I can’t think of how it would be related specifically to ALS.

 

[Scotiaspirit]

Its a bit of an enigma, for me this seemed to happen after I had the PEG tube put in. I take a low dose of hydrochlorothiazide for over twenty years, this problem is fairly recent. I take in 1 to 1 1/2 litres of distilled water in addition to my feed through my PEG tube. I don't beleive my ALS is the cause of this, but more wondering if the PEG tube flush (extra liquid making kidneys work overtime) yet my kidney enzymes are on high end of normal, but still considered in the normal range. Magnesium is normal as well. My doctor is unsure to why this is happenning.

 

[KW1234]

I am on potassium as well but it is because I had a colostomy and had trouble for weeks getting my digestion under control. I had a setback with Radicava as well but I switched to Kate Farm formulas from Realfood and I feel better. Will test again in a couple weeks at my next clinic.

 

[Atsugi]

I'm a former CALS. I'm on potassium because another of my meds causes me to pee out my salts, so I take the potassium chloride to replenish what I pee out.

Paul, you take 1-1/2 liters of distilled water every day? That reminds me of the radio station that challenged a listener to drink as much water as she could in a short time. The woman drank 6 liters in 3 hours and did not pee. Of course, the kidneys can't process this much water so quickly, so the water fills up our cells, which can expand. But brain neurons cannot expand. Shortly after she got home, her brain "exploded" or something and she died.

Remember the old "drink eight glasses of water each day?" That was bogus, and unsupported by science. Just drink to satisfy thirst.

I'm not saying that 1-1/2 liters is bad for you. I'm just saying that perhaps all that distilled water needs to be supplemented. Ask your doctor.

 

[KarenNWendyn]

in response to Mike’s concern, drinking too much water is mainly a problem in causing a low sodium rather than low potassium. There is a condition caused by developing too low a sodium level that can cause cells in the brain to rupture, but this is extremely rare and not at all likely to be a concern for Paul with the amount of water he reports drinking. It is way more common for most of us not to get enough water.

Potassium levels are less responsive than sodium levels to fluid intake because most potassium in the body is in the cells, whereas sodium is outside the cells.

Getting back to Paul’s concern, it probably does have something to do with your HCTZ and fluids/ feedings, even though you’ve been on HCTZ for years. It’s reasonable to add extra potassium supplementation, carefully monitor your levels, and consider a renal consultation if they don’t normalize — or a gastroenterology consultation if chronic diarrhea or malabsorption is suspected.

 

[Scotiaspirit]

The extra potassium chloride which I take via my feeding tube as I can no longer swallow the tablets and capsules; it burns my stomach, despite having each 15ml of potassium chloride mixed with 250ml of water. I get very sweaty, and my blood pressure drops about 20 pts in both my diastolic and systolic numbers after I complete the administration of it. My nurse is unsure if this is temporary or if this will be a prolonged effect. Now I take 30ml of potassium chloride twice daily mixed with 500 ml water via drip through my tube feed at a rate of about 250ml/hr. (Morning and again at night). My old gastroenterologist who also specialized in cardiology has since retired. Once a person is considered having a terminal illness, there seems to be no urgency in getting other problems looked after. That is the way it seems to be here in Atlantic Canada.

 

[KarenNWendyn]

Paul,

Assuming you’re taking the HCTZ for high blood pressure and the potassium supplementation bothers your stomach, I would recommend you see if your doc would consider switching you to a “potassium-sparing” med such as Lisinopril or Losartan.

 

[Scotiaspirit]

I have been on the HCTV for many years, the same dosage. But all possibilities need to be considered. This all seemed to change for me after getting an attack of pancreatitus back in June, which happenned less than two weeks of getting my PEG tube replaced with the button. KarenNWendyn. I appreciate your suggestions and will be discussing that with my doc, to try and get this low potassium problem better managed.

 

[Scotiaspirit]

My potassium has improved with the 30ml 2x daily. It is now 3.4 mEq/l which is one point below the low end of normal. The pharmacy is getting me to mix 30ml of Potassium Chloride with 500 ml of distilled water and I take it paraenternally via gastronomy tube 2x daily. I am being referred to a neprhrology(?) Internal medicine specialist regarding my electrolytes and to look at my kidney function. I have to have a CT scan in the next week or two, and will be seeing the specialist soon thereafter. Still waiting for both appt dates at the time of this writing.

 

[KarenNWendyn]

Sounds like you’re on the right track.

 

[bigmark1954]

Talk to your cardiologist before making changes in your meds. The HCTZ is for your heart and BP.

I take Lisinopril HCTZ and don't have a potassium deficiency.