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Author Topic: Potassium - bloody potassium  (Read 2341 times)
JW77
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« on: March 01, 2018, 03:05:33 AM »

Rant time...


I have been 'good' within a given standard of good.  Cut out coffee, tomato based sauces chocolate, mushrooms and hell knows what else from my diet.  And still my Potassium is high..   Its been like that for a while..  A long while and I 'function' fine.

A diet diary for 1 week has been thrown at the dietitian for feedback..  I've tried and failed to tolerate a low K tank (of 1, instead of 2, where my potassium dropped down nicely below 3!!! )

So what am I supposed to do, live off water and bowls of white rice!..

Rant over...
 :banghead;

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Creator of London Kidney Social: https://www.facebook.com/groups/LondonKidneySocial/

Medical stuff, includes 3 kidneys, cancer, meningitis, 1 heart attack and its long and not that interesting! Maybe one day I'll write a book.! `

I have an eclectic taste in music, I fly kites, I read, write, tog, blog and have a bit of a passion for multicellular eukaryotes, and kites.

Founder of Kites4Kidneys - Start making your kites for WKD 2015..
https://www.facebook.com/kites4kidneys
Michael Murphy
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« Reply #1 on: March 01, 2018, 03:57:51 AM »

There is a way to lower potassium that is not a binder or diet.  Bizarre yes but dropped mine.  After I had a heart attack I was put on lasix.  Twice a day.  My Nephrologist disagreed with the Cardiologistand said once a day because it would cause my potassium to drop.  So now if I am retaining water I take 2 and my potassium levels have been ok.  I still urinate so it works for me.
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Charlie B53
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« Reply #2 on: March 01, 2018, 04:14:39 AM »


If a food comes in a can or a box, it most likely is loaded with potassium and we should limit how much we eat of it.  Notice I said LIMIT as we cannot avoid everything, merely limit how much.

Fast food must be limited as well.

Careful selections and reasonable limits can lower our potassium well enough for most of us.

It takes a lot pf practice and attention to reading labels.
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JW77
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« Reply #3 on: March 01, 2018, 05:47:40 AM »

Thanks for the replies..

I guess I'll see if the dietician can pinpoint anything in particular. She's had a week diary of a usual day to day meals/drinks etc for me without me making drastic changes to suit.

 I avoid processed foods as much as possible, but as neither of us drive its usually Ocado or Morrisons delivery, and we read the ingredients/additives very very carefully.
My phospate and calcium are pretty brilliant this month so..

Haven't been out for a meal in months, nor had a takeaway...  Been doing this gig for too fecking long I think..:( 
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Creator of London Kidney Social: https://www.facebook.com/groups/LondonKidneySocial/

Medical stuff, includes 3 kidneys, cancer, meningitis, 1 heart attack and its long and not that interesting! Maybe one day I'll write a book.! `

I have an eclectic taste in music, I fly kites, I read, write, tog, blog and have a bit of a passion for multicellular eukaryotes, and kites.

Founder of Kites4Kidneys - Start making your kites for WKD 2015..
https://www.facebook.com/kites4kidneys
Cupcake
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a good year for Chevys

« Reply #4 on: March 01, 2018, 07:35:16 AM »

Make sure you're not using any salt substitutes- some ate potassium chloride
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PD for 2 years then living donor transplant October 2018.
Paul
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That's another fine TARDIS you got me into Stanley

« Reply #5 on: March 01, 2018, 10:01:20 AM »

I guess I'll see if the dietician can pinpoint anything in particular.
Do not rely on your dietitian. I have been told some stupid and widely inaccurate things by hospital dietitians. Best method is to type into Google the search"How much potassium in XXXX" (without the quotes), where XXXX is whatever you want to know the potassium content of.

I have never been over on potassium or phosphate levels in the monthly bloods, yet I overeat, eat out sometimes, have takeaways sometimes, eat processed food for lunch (bacon sandwiches on dialysis days, ready meals on most non dialysis days) eat some bad things (just finished a takeaway fried chicken meal), and sometimes have coffee. This is because I juggle my intake. I make sure that my daily intake of potassium, phosphate, and calcium is sensible by cutting back heavily on the next meal if I went over on one. However to do this you need to look up the comparative phosphate/potassium/calcium content of food, just listing "good" and "bad" is no good, because there is a big range in each of those - something that only just made it into the good range will have very nearly as much bad stuff as something in the bad range.

It sounds complicated, but it is as easy as managing a calorie controlled diet, and millions of people do that every day. It keeps you healthy, and it keeps you happy - try it.
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
Michael Murphy
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« Reply #6 on: March 01, 2018, 11:11:29 AM »

Until my heart attack and two angioplasties I never had a problem with phosphorus or potassium either because I urinated what ever I drank.  The dye from the angioplasties reduced my output enough I began to have problems with mostly phosphorus.  The problem with ESRD is that there is as almost as many varients as patients.  But if you have Residual Kidney Function (you still produce urine) good lab work is much easier than it is for patients with minimal to no urine output.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #7 on: March 01, 2018, 01:06:43 PM »

Some BP meds have potassium in. Not just started maybe Losartan or an other med ending in an?


Love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
JW77
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« Reply #8 on: March 04, 2018, 08:22:50 AM »

Make sure you're not using any salt substitutes- some ate potassium chloride

Nope.. Not that daft!  And I do watch out for those in additives..  One of the problems with so many foodstuffs that aren't raw!
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Creator of London Kidney Social: https://www.facebook.com/groups/LondonKidneySocial/

Medical stuff, includes 3 kidneys, cancer, meningitis, 1 heart attack and its long and not that interesting! Maybe one day I'll write a book.! `

I have an eclectic taste in music, I fly kites, I read, write, tog, blog and have a bit of a passion for multicellular eukaryotes, and kites.

Founder of Kites4Kidneys - Start making your kites for WKD 2015..
https://www.facebook.com/kites4kidneys
JW77
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« Reply #9 on: March 04, 2018, 08:27:09 AM »


If a food comes in a can or a box, it most likely is loaded with potassium and we should limit how much we eat of it.  Notice I said LIMIT as we cannot avoid everything, merely limit how much.

Fast food must be limited as well.

Careful selections and reasonable limits can lower our potassium well enough for most of us.

It takes a lot pf practice and attention to reading labels.

Yes..  Seems I'm doing something wrong still after my latest stint of 10 years on home heamo..    Obviously grasshopper isn't ready yet!
Logged

Creator of London Kidney Social: https://www.facebook.com/groups/LondonKidneySocial/

Medical stuff, includes 3 kidneys, cancer, meningitis, 1 heart attack and its long and not that interesting! Maybe one day I'll write a book.! `

I have an eclectic taste in music, I fly kites, I read, write, tog, blog and have a bit of a passion for multicellular eukaryotes, and kites.

Founder of Kites4Kidneys - Start making your kites for WKD 2015..
https://www.facebook.com/kites4kidneys
JW77
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« Reply #10 on: March 04, 2018, 08:30:27 AM »

I guess I'll see if the dietician can pinpoint anything in particular.
Do not rely on your dietitian. I have been told some stupid and widely inaccurate things by hospital dietitians. Best method is to type into Google the search"How much potassium in XXXX" (without the quotes), where XXXX is whatever you want to know the potassium content of.

I have never been over on potassium or phosphate levels in the monthly bloods, yet I overeat, eat out sometimes, have takeaways sometimes, eat processed food for lunch (bacon sandwiches on dialysis days, ready meals on most non dialysis days) eat some bad things (just finished a takeaway fried chicken meal), and sometimes have coffee. This is because I juggle my intake. I make sure that my daily intake of potassium, phosphate, and calcium is sensible by cutting back heavily on the next meal if I went over on one. However to do this you need to look up the comparative phosphate/potassium/calcium content of food, just listing "good" and "bad" is no good, because there is a big range in each of those - something that only just made it into the good range will have very nearly as much bad stuff as something in the bad range.

It sounds complicated, but it is as easy as managing a calorie controlled diet, and millions of people do that every day. It keeps you healthy, and it keeps you happy - try it.

Ta..  I know how google search algorithms work..  Did you know a + adds to the search, a minus omits a word..

I've been on heamo for over 10 years, 9 of them home, and my fistula is coming up to 30..  So just trying to work out where I'm going wrong..  Maybe I should

I know about the K content of food.. I grow the bloody stuff! :)
Logged

Creator of London Kidney Social: https://www.facebook.com/groups/LondonKidneySocial/

Medical stuff, includes 3 kidneys, cancer, meningitis, 1 heart attack and its long and not that interesting! Maybe one day I'll write a book.! `

I have an eclectic taste in music, I fly kites, I read, write, tog, blog and have a bit of a passion for multicellular eukaryotes, and kites.

Founder of Kites4Kidneys - Start making your kites for WKD 2015..
https://www.facebook.com/kites4kidneys
JW77
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« Reply #11 on: March 04, 2018, 08:31:51 AM »

Until my heart attack and two angioplasties I never had a problem with phosphorus or potassium either because I urinated what ever I drank.  The dye from the angioplasties reduced my output enough I began to have problems with mostly phosphorus.  The problem with ESRD is that there is as almost as many varients as patients.  But if you have Residual Kidney Function (you still produce urine) good lab work is much easier than it is for patients with minimal to no urine output.

Yep I agree..  The meningitis sort of killed off any remaining kidney function..  Not unexpected..  It is indeed a problem,  but I piss no more...
Logged

Creator of London Kidney Social: https://www.facebook.com/groups/LondonKidneySocial/

Medical stuff, includes 3 kidneys, cancer, meningitis, 1 heart attack and its long and not that interesting! Maybe one day I'll write a book.! `

I have an eclectic taste in music, I fly kites, I read, write, tog, blog and have a bit of a passion for multicellular eukaryotes, and kites.

Founder of Kites4Kidneys - Start making your kites for WKD 2015..
https://www.facebook.com/kites4kidneys
JW77
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« Reply #12 on: March 04, 2018, 08:32:57 AM »

Some BP meds have potassium in. Not just started maybe Losartan or an other med ending in an?


Love, Cas

No not on BP meds.. I did recently have a fairly high potassium based antibiotic but that should have dialysed out.   And its finished now.
Logged

Creator of London Kidney Social: https://www.facebook.com/groups/LondonKidneySocial/

Medical stuff, includes 3 kidneys, cancer, meningitis, 1 heart attack and its long and not that interesting! Maybe one day I'll write a book.! `

I have an eclectic taste in music, I fly kites, I read, write, tog, blog and have a bit of a passion for multicellular eukaryotes, and kites.

Founder of Kites4Kidneys - Start making your kites for WKD 2015..
https://www.facebook.com/kites4kidneys
cassandra
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When all else fails run in circles, shout loudly

« Reply #13 on: March 04, 2018, 01:33:39 PM »

Is your dialysate changed? My K+ kept rising, turned out the bath was changed from 1K to 2K.


Also you could increase your sodium bicarb (with permission from a dr maybe)
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
JW77
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« Reply #14 on: March 05, 2018, 06:46:45 AM »

Is your dialysate changed? My K+ kept rising, turned out the bath was changed from 1K to 2K.


Also you could increase your sodium bicarb (with permission from a dr maybe)

See above, I tried a 1K tank, my potassium drops below 3, which is equally dangerous.  Saw one of the team today, and he's going to chase things up.

Logged

Creator of London Kidney Social: https://www.facebook.com/groups/LondonKidneySocial/

Medical stuff, includes 3 kidneys, cancer, meningitis, 1 heart attack and its long and not that interesting! Maybe one day I'll write a book.! `

I have an eclectic taste in music, I fly kites, I read, write, tog, blog and have a bit of a passion for multicellular eukaryotes, and kites.

Founder of Kites4Kidneys - Start making your kites for WKD 2015..
https://www.facebook.com/kites4kidneys
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