1. < Kidney & Bladder

GFR dropp 19 points 63 to 44 in less than a year

Posted by jeffh @jeffh, Jan 13, 2023

I was diagnosed with Non Hodgkins Lymphoma last year and had radiation treatment in December and it went well. My cancer is stage 1 and treatable. In my labs in May 2022, I had a GFR of 63. I had labs Jan 3 this year and GFR are at 44! A 19 point drop in one year! I have a referral starting yesterday to see a Nephrologist. No appt yet. What in the world could cause such a huge drop? Anybody? I'm freaking out.

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

Mentor
Ginger, Volunteer Mentor | @gingerw | Jan 15, 2023
In reply to @collegeprof "Most docs like a PCP, an endocrinologist, a cardiologist, and various others use the common method..." + (show)
@collegeprof

Most docs like a PCP, an endocrinologist, a cardiologist, and various others use the common method of eGFR to measure creatinine serum in your blood. That creatine level is calculated to show your eGFR in numerical terms, and further into stages of kidney disease. Many researchers say that this is accurate, perhaps 77% - 85% of the time. It is a measurement of kidney function.

Another kidney diagnostic method that is accurate 90% of the time is called Cystatin C. It is more common to see this used with diabetics with kidney disease. However, if there is a question regarding your eGFR, this test will confirm or validate your eGFR result.

Lastly, another sign and test of kidney disease is protein in the urine. Someone could have a eGFR of 60. for example, but have no protein in the urine which may/may not indicate kidney damage.

So being tested often, six to twelve weeks, establishes a relevant trend for those who wish to keep track of these values. For me, my labs are done within and outside of Mayo, so I keep track of the labs by date of service. You may wish to keep track of creatinine, eGFR and Cystatin C to establish your personal trend of values for each. It is that trend that guides us for the long term.

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In 1988 I was diagnosed with Systemic Lupus. Even at the beginning, there were massive amounts of protein in my urine. It was always attributed to the lupus, not kidney disease, and even now I wonder what might have happened if my knowledge base had been better at that time. Kidney disease was formally diagnosed in my chart about 2006, but the cause was still given as the lupus. It wasn't until 2014 that an astute nephrologist followed through and did more diagnostic testing. The result was diagnosis of an ultra-rare autoimmune kidney condition. All this is to say, knowledge is power. And yes, there is still the large amount of protein, as related to that kidney condition, not related to lupus nor my blood cancer,

Keeping track of testing, of different health conditions that may affect another, being ready to question what is not clear. Sometimes we are the best person to put the pieces together. It is not for the weak-hearted, nor for those who want to take an easy way out. But it is for our best health.
Ginger

REPLY
jeffh | @jeffh | Jan 15, 2023
In reply to @collegeprof "The idea behind this forum is to learn and share from our experiences. The one that..." + (show)
@collegeprof

The idea behind this forum is to learn and share from our experiences. The one that continues to help all of us constantly is @gingerw, our mentor. She has experienced so much, and has offered so much sound advice. When she says to follow the trend of lab results, she means it. I went from an eGFR of 45(stage 3A) to 18(stage 4) in less than 3 months, because I was dehydrated. My Mayo NP nephrologist prescribed a diuretic "Torsemide" for me. My endocrinologist later prescribed a diabetic and diuretic dose of "Farxiga", and my eGFR started to fall again so I stopped that as well. When you get dehydrated, your eGFR goes down quickly. There is a possibility that happened to you, but I am far from being your doctor or trying to diagnose you. What Ginger says about the trend of your labs is so important, and that you must make decisions and consult that information with your doctor. In my case as a college computer science teacher, I gave my docs spreadsheets showing the downward trend of the 2 medications based on eGFR, and they were both convinced that I was right. Lastly, nephrology people are so busy helping those in Stage 4 thru dialysis, it sometimes is difficult seeing them on a regular basis, and those at stage 3 to stage 1 can be vulnerable to 6 months or longer wait times. Thus, perhaps the non urgency with you. There truly is an epidemic of kidney disease, and having a team of docs including a dietitian, an acupuncturist, an endocrinologist, a nephrologist, a PCP , a great Mayo mentor, and many others here give you the best shot.

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Thank you!
About a year ago a PA showed the my eGFR had dropped below 60 to 58. He wrote I had CKD type 2 and to drink more water. I looked back at labs from as far back as 2017 and I always hovered around low 60's to high 50's without anyone mentioning anything. Creatinine usually around 1.2 -1.3. I had labs done in Oct at oncologist center. Hadn't fasted. Creatinine was 7.0 and eGFR 1.12. The newest labs were done at another lab. My glucose has been slightly over 100 a few times. Maybe I'm diabetic. I hope I can see a specialist sooner than 6 months. Or at least get another lab done to check. Not knowing is the worst.

REPLY
jeffh | @jeffh | Jan 15, 2023
In reply to @gingerw "@jeffh High blood pressure and diabetes are two of the leading causes for kidney disease. Controlling..." + (show)
@gingerw

@jeffh High blood pressure and diabetes are two of the leading causes for kidney disease. Controlling those two conditions can have a big say in how the resulting kidney problems can help to be resolved. You didn't mention what type of lymphoma you have, but there is some indication it can affect kidney function.

You may need to push for the appointment with a nephrologist. Be your own advocate!
Ginger

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Hi Ginger.

I have a Non Hodgkins Lymphoma. Marginal Zone Lymphoma. It's very rare but very treatable. 3 weeks of radiation early Dec. Even though it was near my eye, maybe the whole thing put my body in stress mode. My wife, my patient care advocate, will be on the phone tomorrow pushing to get me in to see a nephrologist. In the meantime, I do have an appt with my radiology oncologist tomorrow morning and believe me, I'll bring this up with him.
Thanks for the support!

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 15, 2023
In reply to @jeffh "Hi Ginger. I have a Non Hodgkins Lymphoma. Marginal Zone Lymphoma. It's very rare but very..." + (show)
@jeffh

Hi Ginger.

I have a Non Hodgkins Lymphoma. Marginal Zone Lymphoma. It's very rare but very treatable. 3 weeks of radiation early Dec. Even though it was near my eye, maybe the whole thing put my body in stress mode. My wife, my patient care advocate, will be on the phone tomorrow pushing to get me in to see a nephrologist. In the meantime, I do have an appt with my radiology oncologist tomorrow morning and believe me, I'll bring this up with him.
Thanks for the support!

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Hi Jeff, jumping in here to let you know there is also a support group for Blood Cancers & Disorders https://connect.mayoclinic.org/group/blood-cancers-disorders/

There are many discussions, but I think this one might interest you should you wish to connect about NHL.
- Want to connect with others with Splenic B cell Marginal Zone Lymphoma https://connect.mayoclinic.org/discussion/would-like-to-know-anybody-with-splenic-b-cell-marginal-zone-lymphoma/

REPLY
1 reply
jeffh | @jeffh | Jan 15, 2023
In reply to @colleenyoung "Hi Jeff, jumping in here to let you know there is also a support group for..." + (show)
@colleenyoung

Hi Jeff, jumping in here to let you know there is also a support group for Blood Cancers & Disorders https://connect.mayoclinic.org/group/blood-cancers-disorders/

There are many discussions, but I think this one might interest you should you wish to connect about NHL.
- Want to connect with others with Splenic B cell Marginal Zone Lymphoma https://connect.mayoclinic.org/discussion/would-like-to-know-anybody-with-splenic-b-cell-marginal-zone-lymphoma/

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Thank you Colleen!

REPLY
jeffh | @jeffh | Jan 15, 2023
In reply to @sammyloue "Could it be the radiation treatment?" + (show)
@sammyloue

Could it be the radiation treatment?

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Thanks. Might be a possibility.

REPLY
diane | @dks | Jan 15, 2023
In reply to @collegeprof "Most docs like a PCP, an endocrinologist, a cardiologist, and various others use the common method..." + (show)
@collegeprof

Most docs like a PCP, an endocrinologist, a cardiologist, and various others use the common method of eGFR to measure creatinine serum in your blood. That creatine level is calculated to show your eGFR in numerical terms, and further into stages of kidney disease. Many researchers say that this is accurate, perhaps 77% - 85% of the time. It is a measurement of kidney function.

Another kidney diagnostic method that is accurate 90% of the time is called Cystatin C. It is more common to see this used with diabetics with kidney disease. However, if there is a question regarding your eGFR, this test will confirm or validate your eGFR result.

Lastly, another sign and test of kidney disease is protein in the urine. Someone could have a eGFR of 60. for example, but have no protein in the urine which may/may not indicate kidney damage.

So being tested often, six to twelve weeks, establishes a relevant trend for those who wish to keep track of these values. For me, my labs are done within and outside of Mayo, so I keep track of the labs by date of service. You may wish to keep track of creatinine, eGFR and Cystatin C to establish your personal trend of values for each. It is that trend that guides us for the long term.

Jump to this post

Thanks so much for you answer to my question. I'm still just a bit confused though. Is Cystatin C an additional test, and not ordinarily included in a metabolic panel?

REPLY
2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Jan 15, 2023
In reply to @dks "Thanks so much for you answer to my question. I'm still just a bit confused though...." + (show)
@dks

Thanks so much for you answer to my question. I'm still just a bit confused though. Is Cystatin C an additional test, and not ordinarily included in a metabolic panel?

Jump to this post

@dks From what I figured in @collegeprof's response was, is that test is used more for diabetic patients with kidney issues, not necessarily us "other folk" I have never had that test, myself.
Ginger

REPLY
1 reply
collegeprof | @collegeprof | Jan 15, 2023
In reply to @dks "Thanks so much for you answer to my question. I'm still just a bit confused though...." + (show)
@dks

Thanks so much for you answer to my question. I'm still just a bit confused though. Is Cystatin C an additional test, and not ordinarily included in a metabolic panel?

Jump to this post

@dks It could be an additional test but my new Mayo PA nephrologist included it with my bloodwork. From what I understand from her is that it is 1) a more accurate marker for kidney disease and damage than eGFR and it is 2) a confirmation of eGFR should there be a discrepancy with the eGFR result. I was introduced to the lab test by Mayo around 8 months ago. For me, protein in urine, eGFR, and Cystatin C provide me with the information I need. Your nephrologist or another medical person may/may not wish to to include Cystatin C within your lab report values. As I said before, not all nephrologists and outside docs use this.

REPLY
1 reply
diane | @dks | Jan 16, 2023
In reply to @collegeprof "@dks It could be an additional test but my new Mayo PA nephrologist included it with..." + (show)
@collegeprof

@dks It could be an additional test but my new Mayo PA nephrologist included it with my bloodwork. From what I understand from her is that it is 1) a more accurate marker for kidney disease and damage than eGFR and it is 2) a confirmation of eGFR should there be a discrepancy with the eGFR result. I was introduced to the lab test by Mayo around 8 months ago. For me, protein in urine, eGFR, and Cystatin C provide me with the information I need. Your nephrologist or another medical person may/may not wish to to include Cystatin C within your lab report values. As I said before, not all nephrologists and outside docs use this.

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@collegeprof ~ Thank you for the clarification. I will ask my Primary about the Cystatin C testing when I see her in Feb. Our area is considered "rural", so I've been on the waiting list to get into an actual nephrologist since last September. I'm hoping to be able to get in sometime this year. I'm lucky that I'm only a Stage 3a and not in more dire straits. There are a ton of very sick persons in our area who need to see him regularly.

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