1. < Kidney & Bladder

Chronic Kidney Disease of Unknown origin

Posted by ralfie @ralfie, Feb 23 7:54pm

Officially diagnosed 1 year ago egfr was 51, now efgr at 40. I have basic blood panel done at 3 months and full blood work an urinalysis at 6 months. Im nervous as efgr is getting lower fairly quickly with some minor increases at times. Creatinine was at 1.88 and blood urea nitrogen at 32. All other blood levels are normal.

When nephrologist request cystatin c blood test my efgr is usually 10 points less than efgr in Basic blood panel. Also all levels in urine are normal.

The only other test he has done was renal ultrasound and all was normal.

What other test can be done, i feel helpless? Dietitian has me making diet changes and nothing is changing. I have none of the health conditions that usually lead to ckd and no family history of it.

I feel like I’m fighting a losing battle. What can i ask my nephrologist to try or do next ?

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Feb 28 12:11am

@my44 diabetes and hypertension are the two most common causes of kidney problems. But as you know there are other reasons. Is your sarcoidosis being treated? Congratulations on your kidney transplant! How is the function of your new kidney?

REPLY
1 reply
my44 | @my44 | Feb 28 12:59am
In reply to @cehunt57 "@my44 diabetes and hypertension are the two most common causes of kidney problems. But as you..." + (show)
@cehunt57

@my44 diabetes and hypertension are the two most common causes of kidney problems. But as you know there are other reasons. Is your sarcoidosis being treated? Congratulations on your kidney transplant! How is the function of your new kidney?

Jump to this post

Hi, @cehunt57

My sarcoidosis affected several of my organs, so it was treated with prednisone for 13 months. There is no cure for it, but it went into remission; and there is no further treatment required as long as it remains in remission.

Thanks for the transplant congrats. I am about 15 months post transplant now, and so far so good. My kidney is doing well, my labs are good, my transplant team is happy, and they've been able to reduce the doses of all of my immunosuppressant meds. And I now only need to see my transplant team twice a year.

REPLY
diane | @dks | Mar 3 11:34am

When kidney function decreases, life can get scary. I'm so sorry you're experiencing a decrease in function. Have you been on any new meds recently? If so, you might want to check online to see how they might adversely affect your kidney function. That happened to me with methenamine. Once I cut way back on that drug for my bladder IC, my kidney function increased. I hope you're able to learn what the cause may be & it can be rectified.

REPLY
kathymiami | @kathymiami | Mar 15 2:07pm
In reply to @ralfie "Thanks for commenting. I’m 61. Also Thanks for the reassurance and my nephrologist has told me..." + (show)
@ralfie

Thanks for commenting. I’m 61. Also Thanks for the reassurance and my nephrologist has told me this as well. I feel great. Part of my frustration is with different diet changes or maybe it’s just typical with ckd that may be causing other blood levels to be off. For example i cut way back on dairy, then my calcium levels dropped too low. One if my other doctors recommended i take a low dose vitamin d for seasonal adjustment disorder and my vitamin d level increased to toxicity level. My hemoglobin level decreased but iron levels and ferritin were normal but i was anemic for a while.

Im not used to not used to having a condition that nothing seems to improve and its not stabilized.

I talked with the kidney foundation and they recommended that I ask for a kidney biopsy. They too were puzzled with my ckd being labeled as “unknown origin.”

I'm not diabetic, I’m not obese, i don't drink alcohol (accept a couple of drinks during holidays), i drink plenty of water, cut back on salt etc. i have had a mitral valve repair surgery many years ago and more recently cardiac ablation for a heart flutter, which is not unusual with my calve surgery. My blood pressure/ heart rate was slightly high but under control with the lowest dose of metropolol. Nephrologist doesn't believe my blood pressure is a cause because its very much controlled.

My cardiologist talked with my nephrologist about trying a newer blood pressure med that helps protect kidney function, but my nephrologist said he wasn’t ready for that switch because my blood pressure is so well controlled with current med.

I just would like to have a biopsy to try to find a cause and perhaps try a nephrologist that nay be mire experienced with ckd of unknown origin. Where i live there are nit many nephrologist but I’m less than an hour from Boston as well as the Dartmouth medical center in New hampshire

Sorry for venting, but its nice to communicate with someone who understands.

Jump to this post

As a former north shore Bostonian, I would certainly seek doctors opinion at Dartmouth or one of the Harvard teaching hospitals...Brigham. That said, there are good and not good doctors at any hospital.

I don't have a cause for my CKD (dxd 2 months ago). I just had genetic testing done which could take up to a month to get the results. Then a biopsy might be a next step.

REPLY
1 reply
ralfie | @ralfie | Mar 16 10:19am
In reply to @kathymiami "As a former north shore Bostonian, I would certainly seek doctors opinion at Dartmouth or one..." + (show)
@kathymiami

As a former north shore Bostonian, I would certainly seek doctors opinion at Dartmouth or one of the Harvard teaching hospitals...Brigham. That said, there are good and not good doctors at any hospital.

I don't have a cause for my CKD (dxd 2 months ago). I just had genetic testing done which could take up to a month to get the results. Then a biopsy might be a next step.

Jump to this post

Thanks for your reply. I haven't had genetic testing done but i will ask about this and the biopsy, when i meet with my nephrologist in early April. I have another round of full bloodwork and urinalysis with samples taken this coming Friday.

Its been a year since i started with my nephrologist and feel like I'm just spinning and not getting aware.

I hope they figure out what is causing yours. You are the first person I have communicated with that so far had kidney disease of unknown origin.

REPLY
1 reply
wdytys | @wdytys | Mar 17 11:07am
In reply to @ralfie "Thanks for your reply. I haven't had genetic testing done but i will ask about this..." + (show)
@ralfie

Thanks for your reply. I haven't had genetic testing done but i will ask about this and the biopsy, when i meet with my nephrologist in early April. I have another round of full bloodwork and urinalysis with samples taken this coming Friday.

Its been a year since i started with my nephrologist and feel like I'm just spinning and not getting aware.

I hope they figure out what is causing yours. You are the first person I have communicated with that so far had kidney disease of unknown origin.

Jump to this post

I was diagnosed with stage 4 kidney disease about two years ago. My kidney doctor couldn’t figure out why, since I didn’t have hypertension or diabetes. I did my own research and figured that it was the smoothies that I had almost every day (for three years) which contained one cup of spinach. Spinach is one of the foods with the highest amount of oxalates. I changed my diet and and my last blood work was normal. I couldn’t post a link to a research article because I am a new member, but you can search for “Diet-induced oxalate nephropathy from excessive nut and seed consumption”.

REPLY
1 reply
Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Mar 19 12:17am
In reply to @wdytys "I was diagnosed with stage 4 kidney disease about two years ago. My kidney doctor couldn’t..." + (show)
@wdytys

I was diagnosed with stage 4 kidney disease about two years ago. My kidney doctor couldn’t figure out why, since I didn’t have hypertension or diabetes. I did my own research and figured that it was the smoothies that I had almost every day (for three years) which contained one cup of spinach. Spinach is one of the foods with the highest amount of oxalates. I changed my diet and and my last blood work was normal. I couldn’t post a link to a research article because I am a new member, but you can search for “Diet-induced oxalate nephropathy from excessive nut and seed consumption”.

Jump to this post

@wdytys oxalates are one of the things that can be troublesome to kidney function. A nephrologist can order tests for that. I’m sorry it took your own research to figure that out. That is good your blood work is normal now. What does your kidney doctor think about this change?

REPLY
wdytys | @wdytys | Mar 19 5:56pm

My doctor never accepted that oxalates can cause kidney disease - even though I printed articles from credible institutions like NIH, for her to read. When she saw my last tests, she couldn't believe it, and just told me to keep on doing what I was doing. If I hadn't been proactive, I would be on dialysis by now.

REPLY
View MoreView Less
Please sign in or register to post a reply.