I was just curious if anyone’s had their nephrologist say the creatinine only is more important then Gfr? My creatinine is 340 and my gfr is at 14 and he says I’m still going to be a while away from a transplant. He says that my creatinine would need to be more like 600 to need a transplant. They are hoping I skip dialysis and get a living donor transplant. But anything I read says the gfr is really what indicates your kidney function because it takes into account your creatinine and other things.
I’m currently waiting to hear from my transplant centre to get a date for their work up but it feels like I’m going to be waiting a long time. All I got was a letter in the mail saying they know who I am and that I will get a new letter with dates. And if I had any questions to ask my nephrologist....but anytime I ask him something he says I’m fine and I have a hard time believing him. I asked him in my last two meetings why my pth was so high and now he has asked for it to be checked only every three months instead of monthly. If it’s high shouldn’t it be something we look at at a regular basis? I think he’s just trying to “put it out of site, out of mind” but that doesn’t work for me, I just worry more. I know I can’t control any of this but if I at least had all the information I could feel more informed.
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My nephrologist definitely pays more attention to my creatinine then my eGFR. He also watches my BuN as it's an indication of how well my body is clearing toxins. But from the beginning my nephrologists (I've seen three different nephrologists at this point) have all focused pretty exclusively on my creatinine.
Have you tried asking your nephrologist to take time to explain your lab results to you as well as his or her interpretation of your results? I do this in every appointment. I also arrive with a list of symptoms I'm presenting consistently. I ask him if any of these symptoms are associated with my CKD. And, if so, I ask him if we can resolve any of. them, etc. He usually gets very focused on the symptoms and tweaking my treatment plan to address them.
I left my second nephrologist specifically because he would not provide any patient education. He also seemed to be "avoiding" treating anything that surfaced as a change in my data. I can't take care of myself well at home if I don't understand what's going on in my body; I have to understand my data. Similarly, I will not see a doctor who won't spend at least 5 minutes of every 10 minute appointment engaging in patient education. We can't cure this, but we can very likely have me feeling and functioning fairly well. And we certainly can have me understanding what's going on and what I should be doing on a daily basis at home to take care of myself. IF my doctor isn't committed to that, he or she isn't the right doctor for me.
And finally, our anxiety and stress levels are lower when our doctors take time to explain our data to us, even if it's bad news.
Thank you for your feed back, I think I do need to get a new nephrologist. Once I get my appointment with the transplant team I will be given a new nephrologist from them.
My nephrologist has never said either was more important. He did set eGFR of 15 or below as the level at which I should plan for dialysis and start the work up to be put on the transplant list. I certainly agree with Jayhawker that you must go to your consultation with a written list of questions (or you’ll forget) and if your consultant won’t answer them then you need to change consultant.
Hi I had my transplant last November ‘18 and all appears to be going well at the moment. I had suffered kidney disease since 2 years old, and am now over 50. My eGFR had been steadily reducing for many years, especially the last 10. My eGFR got down to 10, whilst creatinine went up to 450 by which time they did my live transplant, and I avoided dialysis. My advice with eGFR below 20 is a pretty strict diet keeping high protein and potassium foods quite low e.g red meat, dairy, bananas, potatoes, tomatoes, and literally avoiding adding any salt to every thing. There’s plenty of good tips on the internet for kidney diets. This can help slow the eGFR & stabilise creatinine, but as we know are not a cure. Live transplant as mentioned is the best option, but don’t be in too much of a rush to get it until eGFR is below 10, as at this level there can be a sudden crash, or if your eGFR levels are above 500. I’ve seen plenty of people at 7 & 700, and surprisingly they can still manage. Timing is critical, but the nephrologist is the expert, and takes their info from world experience. In London we seem to have some of the very best, as I don’t recognise the problems with communication that some seem to be having. To sum up ‘don’t panic - trust advice’.
Yes!!! my K.D also watch's my creatinine level and my B.U.N as well, a healthy functioning kidney creatinine level should be at 0.1 as of September 5th of this month it will make my third year for my transplant my creatinine level has rose up to 1.34 they were concerned back in May I had to get a kidney biopsy done to make sure the kidney was not trying to reject so your creatinine level plays a big part, An your B.U.N
But my B.U.N clearance is good, just a little dehydrated I was, and they said they will just keep an eye on my creatinine level as time goes on. So not to tell you what to do but just get more information the more knowledge we have the more we will know and understand. Knowledge and understanding plays a big role in anyone's health never just let any doctor tell you, ask questions do your research ask more questions that is their job to answer all your questions until you fully understand. Peace&Blessing🙏
Creatinine seems to be the key indicator my doctors were concerned about. I had a kidney transplant six months ago. Pre transplant my creatine was 5.6 and I felt like crap which forced me to go on dialysis. I was lucky to get a transplant six weeks after starting dialysis. The GFR did not seem to factor into my nephrologist’s concerns more than the creatinine levels. Post transplant my creatinine averages 1.4. My GFR is at a level considered stage 3 CKD but my nephrologist says it will probably not come down because age is factored into the GFR calculation and at 63 I am only getting older.
I had high PTH numbers also....they should be In the 20 to 80 range...mine were 350 plus...and my bones ached constantly...my Neph said it was just part of having CKD.....i went to a parathyroid clinic and they found that 3 of my 4 parathyroid glands were non cancerous tumors..they removed those three and left me with one perfect one...the bone ache went away immediately...my PTH level now sits at a perfect 25...that was over 3 years ago..dont let just anyone do this procedure tho...do your research...so very glad i did...
Wow thank you! I’m in the same boat as “it’s just part of your ckd” so I’m going to get a second opinion. I’m not in constant bone pain but I feel the ache often.
The Surgeons who took care of me at the Parathyroid Clinic told me they thought my Parathyroid Disease damaged my Kidney....not the other way around. .
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