I’m just wondering, with your lab results, when you have high potassium do you also have high everything else? Sodium calcium etc?
Asking because my dad has consistently high potassium and low sodium. But right now he’s having mild edema on his legs. Our nephro keeps saying he is dehydrated and has given his en electrolyte drink to take 3x a day, but we have reduced it to 1/day due to the edema. Edema hasn’t improved though.
He also has low BP, possible anemia.
Honestly i’m thinking this looks like Addison’s, but apparently it’s very rare… any advise?
Thanks very much.
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Slaxx
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No, high potassium seems to be a separate issue that doesn't affect all CKD patients, seems to depend on the cause of the CKD. Though most patients at stage 3 and up should probably restrict sodium and phosphorous (meat and dairy) and be careful about calcium, which is tricky: total intake should be about .8G to 1 G if your kidneys are still processing it okay. Probably ask your doctor or a renal dietician when you can.
(I wanted to reply to your more recent post but I couldn't find it)When I was changing my diet, I gave up sweets first which was hardest since they are the most addictive, at least to me, everything else was easier. CKD basically lowers your appetite (or my appetite anyway) which helped. Meat was the next thing that was a little difficult, but I really wanted to try and after 3 months I'm all virtuous about it. So depending on your father's principles and desire to feel better and fear of dialysis, I'll bet he'll come around on his own. If eating meat is important to him, well its his life, hard to know in a specific case how harmful it is, just make sure he knows that its become bad for his health since his kidneys aren't functioning well. I also forgot to mention that it is important to restrict potassium if his levels are high- there are lists of the worst foods online, like bananas and sweet potatoes.
Hi, Why would you think your dad has Addison's Disease? Did his PCP suggest that or have you been googling symptoms? Has he been very ill, stomach pains, nausea, vomiting? Did he recently stop taking steriods like Prednisone? Having low sodium and low blood pressure doesn't mean you have Addison's. I have both and I certainly don't have Addison's. Does your dad have discolored skin and other symptoms? Addison's is very severe and he'd need to see an Endocrinologist. I had a brief episode after stopping Prednisone after 13 years of high dose steriods.
Low blood pressure can be a cause of CKD. My pressure always runs low around 88/58 and my sodium is low because I drink tons of water and don't eat that many foods with natural sodium or add a lot of salt to my food.
What type of anemia are you talking about? Iron, B12, hemolytic, or which type? There are many causes of anemia, some people need to see a Hematologist, I see one but my problem is not CKD related or mineral related. I have edema and take a diuretic, but my edema is from congestive heart failure, there is no reason to think your father has that either unless he's seen a cardiologist for a battery of testing. It's only symptom isn't edema, you also have fluid in your lungs and are short of breath. Is your dad elevating his legs and wearing compression socks? That helps with edema.
Basically the answer is no. All lab tests and electrolytes are not high. I dropped to Stage 4 CKD and never have had elevated potassium, only my creatinine has been high. It all depends on the cause of CKD and comorbid disease. My CKD is from an autoimmune disease. You should discuss concerns with your father's PCP or Nephrologist. Please don't google trying to diagnose or interpret tests. Almost everyone has at least one or two symptoms of every disease you could google. Each person is an individual and only your dad's Dr. knows what's wrong, the cause, and how to treat him. If you or your dad don't trust his Dr., then find a new one to address his concerns if he isn't get the treatment you both feel he needs.
admittedly yes i have been googling, because it's really hard to figure out why his numbers don't seem to be improving.he has Diabetes T2, and CKD. that's it. he did have a pancreatic mass back in 2017 but this was successfully and wholly removed. he has been cancer free since then, based on labs every 3mos.
CKD was diagnosed just this April when he had unplanned weight loss maybe over 2months and just lack of appetite, and fatigue.
but no extreme symptoms of Addison's, which yes i've read about, i just don't know how... clear?? the symptoms are, i guess. in the sense that a doctor would immediately think Addison's. i'm afraid that if it ever is (which sounds unlikely now), he would need to get into a crisis before being diagnosed, and i'm not sure if he'll survive it.
his BP, systolic has always been normal (mostly 105-120, rarely 140.), diastolic is kinda on the low border at 60-65, sometimes even 55. he used to have episodes where it seems like he's about to black out, but our nephro added more electrolyte intake to keep fluids and stabilize his BP. that seems to have solved the problem.
so far, his readings over 7months are:
potassium, mid-high at 4.8-5.4
sodium, low at 131-135
chloride, low at 95-96
calcium, magnesium, phosphorus are normal
BUN just starting to normalize the past 2 weeks, was high for a while.
Creatinine, high 1.74
eGFR is 38
Alkaline phosphatase, high 197
iron and TIBC are normal
ferritin normal
hemoglobin, hematocrit and RBC are down. peripheral smear has been done, there's a bit of abnormality in the cell shape.
it's very tricky to control his levels. we haven't exactly reduced his sodium intake as his levels started out already on the low end, and more has been added through electrolytes and sodium bicarb but still no change. potassium has always been high. i don't fully understand this. the way i picture it, if the kidneys are compromised, all minerals would be affected even at the slightest, but it's just potassium that is abnormally high.
i guess it just doesn't make sense to layman eyes... sigh.
anyway, thank you for the advise and for sharing your experience. it helps me a lot to find some real life bases i can compare with, so i can also ask our doctor if i find something different. (don't worry, i will never self-diagnose, i will always ask a doctor first). stay safe and healthy
Hi, Sorry about busting you on the googling, I'm a former paramedic and cardiology tech and can always tell when a patient had been playing Google Doc : ) It might be a good idea to ask his PCP for a referral to a dietician. There are many foods your dad should avoid with high potassium like potatoes, bananas, legumes and others. A dietician can help with a diet tailored to his T2D and CKD. Good luck. : )
Pcp,s are still behind locked doors in the UK. Nearly 2 years since I last saw nephrologist only 3 phone calls in that time. Only leaves Google to ask.
I'm sorry and surprised to hear that health care is so poor where you live. I am very lucky to have great health care in my area of the U.S. even being on Medicare/Medi-Cal (low income health plan). I see my PCP and Neph every 3 months. And see my PCP on a day's notice anytime something new comes up like bronchitis, cellulitis, etc. Goodness, what happens if you have an urgent problem? Are there Urgent Care Centers or do you have to wait all day and night at an Emergency Room for something a PCP could handle? I appreciate my PCP, he refers me to the dietician or physical therapy or anything I ask for with just a phone call to his office nurse. I'd better appreciate him even more after hearing what you are going through. I feel badly that you are not getting the care you need. This link is a great place for medical information that patients and physicians can use. There is so much misinformation on the web that a professional source or an organization for a specific disease is best. pubmed.ncbi.nlm.nih.gov
Best of luck to you. I hope I didn't offend you with my google remark, I was afraid the other person was misdiagnosing her dad with Addison's when he clearly didn't have it.
I do perhaps worry too much about my health but my last bloods revealed a drop in my eGFR of 4 to 18, it had been steady at 22. Not seeing an expert for nearly 2 years does not help. Other weaknesses are showing themselves and GP'S not acting as I am under a nephrologist leaves me out there on my own.
You're very kind to take such care for your father. One of the basics for blood tests is to drink a couple of glasses (25-35 oz) of water a few hours ahead, because dehydration will distort some values, eg creatine looks higher. Also, if you don't know this, serum creatine will fluctuate some, a little higher with more exercise, but CKD doesn't get better, the best hope is to stabilize it. Creatine is the basis for CKD staging. Many people on this site have done well changing to a plant-based diet, which is of course, also good for the planet and farm animals if not meat-producers. If you want to take it a step further, Lee Hull, a CKD patient, wrote a book on CKD and offers a fairly expensive non-nitrogen protein. A lot of research on this nitrogen free protein analogue shows it can slow or stop disease progression. Nitrogen is damaging for CKD patients, but too little protein is worse (.6G per kg body weight is minimal), so the ideal solution is half plant protein and half protein analogue to be sure he's getting enough protein. Moderate exercise is also important. Magnesium is in general good, but it interacts with calcium, and calcium is tricky, I haven't figured that one out yet. If your father eats plenty of fruits and veggies and nuts with little added salt and no or limited dairy, and sufficient protein, you shouldn't have to worry about individual nutrients. That's what I do. Hope it all goes well.
thank you v. much for all of this! this is the first time i read about nitrogen in particular. so it's not just meat protein, hmm.
i might not be able to completely remove meat protein (he won't be interested, lol) but at the moment we have been successful in limiting it to less than half the usual.
Hi Slaxx: as whats said: how good and kind of you to care for your father. I also want to say that a lot of us can feel confused about our lab chemicals and how to proceed. However, this is because we all have different underlying medical conditions, different stages of CKD, different dietary needs, different lab results. When you throw these all together, you get a lot of different combinations of what each of us need to deal with our health. No one size fits all.
I have CKD 4 but with the exception of my GFR, Bun, and creatinine all my other labs results fall in the normal range. My BP is normal with medication. No other medical problems. No edema. I'm having problems trying to find a dietitian that suits my needs as most menu plans offered by those I've contacted were vegan only. My nephrologist guided me into doing a vegetarian diet with meat only 2 times a week. Being a "meat and potato" person most of my life, this has been presenting problems, but after much confusion, I'm learning new simple recipes that I like and are good for me.
The best suggestions I can make is to go slow, know that you cant solve all the dietary issues at once, listen to the medical team but remain proactive and change the team if you have to learn as much as you can about the diseases from places, such as, Davita and/or the NKF site, and try to stay positive. it seems that CKD progression can be slowed, but it takes the right combination of diet, medication, and sound medical advice for your father's PARTICULAR combination of symptoms to be managed.
As usual (and others have suggested), it seems to be patient-specific. My mum's potassium now seems stabe at ~75% through normal range (was over-range 1y ago), sodium ~85% through & calcium just 55%.
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