Stage 5 CKD but potassium levels dropping - Kidney Disease

Kidney Disease

11,001 members4,755 posts

Stage 5 CKD but potassium levels dropping

rabbit01 profile image
32 Replies

Hello all. Here is a question for you. I have stage 5 CKD with 14% eGFR but my potassium levels remain normal. In fact the latest blood test shows a drop from 4 to 3.5 mmol/litre. My phosphate is pretty good as well at 1.16. I am not complaining but all articles I have read say that potassium increases as the kidneys decline. Any ideas why mine is stable?

Written by
rabbit01 profile image
rabbit01
To view profiles and participate in discussions please or .
Read more about...
32 Replies
Bassetmommer profile image
BassetmommerNKF Ambassador

Potassium levels can fluctuate. I tired to find some information for you but everything basically talks about hyperkalemia ( high potassium). I would ask your doctor why your levels are so normal and then...count your blessings. I am at stage four and dropped both my potassium and phosphorus levels to a normal range just from changing what I eat.

rabbit01 profile image
rabbit01 in reply to Bassetmommer

Thanks very much. I will ask the nephrolgist at the next appointment on 20th of this month. I have not consciously tried to limit food with high potassium yet it's better now than it was when I was diagnosed over three years ago. Never had any diet advice from the docs apart from limit salt.

Crinkster profile image
Crinkster in reply to rabbit01

I have never been out of range with potassium. Even when I dropped suddenly to eGFR 15 recently. I guess it’s proof that no two people/bodies are the same.

rabbit01 profile image
rabbit01 in reply to Crinkster

Thanks.

steve680 profile image
steve680 in reply to rabbit01

Anyone in stage 5 needs to limit protein, sodium, potassium and phosphorus. You should have been referred to a renal dietician by now.

rabbit01 profile image
rabbit01 in reply to steve680

Thanks. You would have thought that I should have been by now. I have asked several times about diet over the three years since diagnosis and never got anything aside from limit sodium. I will bring it up again on 20th when I see the consultant. I think that as I was already late stage 4 with 18% eGFR when diagnosed they thought I was heading straight for dialysis within 6 months. I did have one doctor actually say that it was not worth making diet changes at my late stage.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to rabbit01

Oh my, what a bizarre thing to say to you. Many people are able to stay off dialysis by maintaining a kidney friendly diet. You will be put on a diet if you have to go on dialysis. I would recommend that you look into what is a good kidney diet to see if there is a way you can maintain what function you have.

Davita.com has a lot on good diets, davita.com/diet-helper/ and this site: kidney.org/nutrition/Kidney...

rabbit01 profile image
rabbit01 in reply to Bassetmommer

Thanks very much for that.

Cazzy41 profile image
Cazzy41 in reply to Bassetmommer

I was on dialysis for 3 and half years and was never put on a specialised diet at all. My potassium and phosphates were absolutely fine. I suppose your dietary restrictions depend on your blood results. I was also never restricted on my fluid as even though I only had one kidney my urinary output was at least 4 1/2 litres a day. So yes everyone is different in their own bodily situations.

lowraind profile image
lowraind in reply to rabbit01

Sometimes I wonder about what some docs actually know! I have radically changed my diet and it has made a huge difference. My nephrologist had also indicated that there was nothing I could do except limit sodium and stop taking Celebrex. However, my thinking was and is, if they are eventually going to tell me to limit potassium, phosphorous and protein, it makes sense to do it now. That has worked out well for me.

rabbit01 profile image
rabbit01 in reply to lowraind

Yes I know what you mean. I was actually at my worst and feeling very rough with eGFR 12% three weeks ago and have been referred to the dialysis centre. My first visit is tomorrow afternoon to me the team and discuss the two different types. Since that low point I have gone veggie and my eGFR was recovered to 14% and I do feel better in myself.

RoxanneKidney profile image
RoxanneKidney in reply to lowraind

Very few do know anything.

CNeb profile image
CNeb in reply to rabbit01

I disagree with that comment saying it’s not worth changing your diet. I had vein mapping done right after going completely plant-based for my diet. My numbers got better and kept myself off dialysis for 7 months before my transplant. I was two weeks away from having a graft done.

rabbit01 profile image
rabbit01 in reply to CNeb

Thanks very much for the replying. I will certainly do the same. I had cut right down on red meat in any case and was mostly having chicken and fish but even that makes me feel quite rough sometimes so I am going to stick with the vegetable and fruit diet. Obviously I want to delay having to start dialysis as long as possible.

CNeb profile image
CNeb in reply to rabbit01

My renal dietician said I could 4 oz of red meat a week, 6 oz of either chicken or fish a day and I kept feeling worse. Daily headaches, joint pain, muscle pain, and at 40 years old I was getting out of bed and moving around like someone twice my age. Once I switch after about a week or so those symptoms plus my edema went away. My BUN was normal for the first time in probably 10 years or so, my creatinine went from the 6’s down to 4 and all my other ranges were normal.

rabbit01 profile image
rabbit01 in reply to CNeb

Thanks for the encouragement. It helped pick me up.

RoxanneKidney profile image
RoxanneKidney in reply to CNeb

Diet is a huge thing. I just eat to live now.

CNeb profile image
CNeb in reply to steve680

It all depends on other factors that people may be experiencing. In my instance I have no large intestine, therefore I don’t absorb potassium like a normal individual. Therefore my potassium had to be boosted with prescribed supplements and didn’t have to worry about potassium intake through my diet even at Stage V at 11% function. Make sure your dietician is aware of all medical issues.

rabbit01 profile image
rabbit01 in reply to CNeb

Will do. Thanks

KidneyCoach profile image
KidneyCoachNKF Ambassador in reply to steve680

Dialysis actually removes protein from the system. Anyone on dialysis will need to make sure they are getting enough protein (as shown in lab results of "albumin"). Dietitian will encourage dialysis patients to eat more protein to be sure they're not becoming malnourished. Potassium, sodium and phosphorus should be limited per your individual labs and dietary needs. Remember "limited" individually not "E" liminate. Anyone with an albumin level below 3.5 may need supplements to increase protein levels. Eggs (whites) are a great source for protein. Blessings

rabbit01 profile image
rabbit01 in reply to KidneyCoach

Thanks.

SunshineMonster profile image
SunshineMonster in reply to steve680

Just wanted to chime in here & say that when you get to ESRD you actually need to up your protein intake. My 12 year old daughter has stage 5 CKD & anything past stage 4 should eat more protein than the lower stages.

rabbit01 profile image
rabbit01 in reply to SunshineMonster

Thanks. Nobody including my nephrologist has ever mentioned this. In fact as I may have already said I have never had any advice on diet except cut back on salt. I will discuss with the nephrologist at the next appointment I have. cheers

steve680 profile image
steve680 in reply to SunshineMonster

Stage 5 and not on dialysis one should restrict protein; any nephrologist can you tell that. Once you're on dialysis it's a different story.

Frankie24 profile image
Frankie24

Hi, stage 5, eGFR of 13 %, I had a severe problem with both potassium and phosphate, limiting potassium and phosphate intake corrects the problem with both. When I eat to much potassium, blood levels go way up pretty quickly. I agree, you should probably see a nutritionist versed in kidney friendly diets, however my nephrologist also gave me very in depth lists of foods to avoid all together or ones I should eat less of, as did the transplant team. I would guess that you are doing a good job with your diet. I agree, you should still definitely get advise on the matter at this point in your disease.

rabbit01 profile image
rabbit01 in reply to Frankie24

Thanks very much for your response. I think it is just by chance that most of the food I have (with the exception of tomatoes!) is low in potassium. Since being diagnosed 3 years back I eat a lot more healthily ie not junk food and don't add salt so that it probably why my levels are quite good. I see the nephrologist next week so I will ask if she has a list like the one you were given. Thanks again.

RhenDutchess123 profile image
RhenDutchess123

hello rabbit.....i am gfr 16...but all my electrolytes are normal too...i dont understand it either...our kidney function must be enough to sustain us...or maybe we are eating the right things for ourselves....dont know at what level they will just go crazy...so i will just enjoy it while i can.....ate you on dialysis yet ?

rabbit01 profile image
rabbit01 in reply to RhenDutchess123

Hello, no still not on dialysis but my eGFR is down to 10%. I gave up working about this time last year as I was too exhausted and certainly not having the stress of work has helped me feel better. The doctors wanted me to start dialysis in February this year but I am leaving it now as long as I can. My blood results are pretty good in terms of potassium and phosphate. Urea and creatinine are very high as is PTH. Other than getting very tired and felling sick on waking I am not doing too bad. I did have Gout in November but controlled that with cherry juice.

SN23 profile image
SN23 in reply to rabbit01

Hello rabbit,

Best wishes to you for staying strong. And great that your potassium and phosphorus are so low. For PTH are you doing anything? Sometimes low vitamin d can also increase PTH.

rabbit01 profile image
rabbit01

Hi, for the high PTH I am on alphacalcidol.

SN23 profile image
SN23 in reply to rabbit01

Thanks!

CA_Coast profile image
CA_Coast

Perhaps the cause of your ckd also determines to some extent, which diet can make a difference to your egfr????

You may also like...

Stage 5 CKD with no warning

I'm in stage 5 CKD & new here. A month ago I did not know I had Kidney disease at all! Doctors do...

Stage 5 CKD - foods to avoid?

Hi I am 52yo with stage 5 CKD with kidney function at 11% Are there foods that I should avoid/cut...

CKD Stage 4 now Stage 5

but hoping that my gfr will maybe increase now that my uric acid levels are normal and the gout has...

Stage 5 CKD

and had a cancerous kidney removed 3 months ago. My remaining kidney is stable and not improving. I

GFR drop-potassium high

labs and my GRF dropped from 15 to 10 & creatinine went from 3.16 to 4.67. Potassium level went up...