Stage 5 CKD but potassium levels dropping

[rabbit01]

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?

[Bassetmommer NKF 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 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 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 in reply to Crinkster]

Thanks.

[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 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 NKF 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 in reply to Bassetmommer]

Thanks very much for that.

[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 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 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 in reply to lowraind]

Very few do know anything.

[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 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 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 in reply to CNeb]

Thanks for the encouragement. It helped pick me up.

[RoxanneKidney in reply to CNeb]

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

[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 in reply to CNeb]

Will do. Thanks

[KidneyCoach NKF 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 in reply to KidneyCoach]

Thanks.

[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 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 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]

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 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]

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 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 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]

Hi, for the high PTH I am on alphacalcidol.

[SN23 in reply to rabbit01]

Thanks!

[CA_Coast]

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