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eGFR 29 and Stable - Mayo Clinic Follow-up

Posted by mrainne @mrainne, Aug 24, 2023

I've posted several times. Quick recap: My local nephrologist diagnosed me with ADPKD. Mayo Clinic ordered a genetic test and it came back negative. I do not have this disease. My low eGFR is due to long-term lithium use (35 years). Dr. Dahl explained in my Zoom appointment yesterday, that end-stage kidney disease is unlikely from lithium use. We will follow up with bloodwork. BUN is 29. She did not think that was a concern. Many people can live years with a range of mid to low 20s eGFR with my disease - Nephrogenic Diabetes Insipidus (not be confused with diabetes). I have no symptoms. I feel great with energy but watch my diet, salt, and potassium, and drink lots of water. All my blood levels are normal except for calcium, but not a concern unless it rises significantly.
I plan to keep my relationship with Mayo on a yearly basis. This surprises me. But I trust Dr. Dahl, an expert and so knowledgeable. So I will continue to live normally, I guess 🙂

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windyshores | @windyshores | Aug 24, 2023

I personally know three people with severe kidney disease from Lithium. My daughter has been on it for 14 years. That may not be your issue. But I am surprised that a nephrologist would say that and wonder if it is true, for my kid's sake.

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1 reply
mrainne | @mrainne | Aug 24, 2023

Here is an excellent article that goes into detail about lithium and kidney disease. There is clearly not enough research to verify the risk of ESRD and lithium use. That is why I requested an ongoing relationship with Mayo just in case I get to the ESRD place. If I need a transplant, that's where I want to go. My local nephrologist kept telling me "No worries, you'll live to 100" which is one of the reasons I made the appointment at Mayo. There is no treatment for damaged kidneys from lithium use. But I didn't want to be coddled into thinking there's no risk.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5537577/
"There are conflicting studies in this article. There is not enough research.
Discrepancies among studies were largely due to methodological differences such as varied parameters to assess renal function and definitions of renal impairment, short-term follow-up, a lack of patients on long-term lithium therapy, combining high-risk and low-risk groups, choice of control group (healthy v. psychiatric patients), and an inability to control the confounding variables. Definitive data on the magnitude of the risk are still lacking. Moreover, in the absence of any pathognomonic histological or biochemical changes, lithium-associated CKD remains a diagnosis of exclusion."

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1 reply
windyshores | @windyshores | Aug 25, 2023
In reply to @mrainne "Here is an excellent article that goes into detail about lithium and kidney disease. There is..." + (show)
@mrainne

Here is an excellent article that goes into detail about lithium and kidney disease. There is clearly not enough research to verify the risk of ESRD and lithium use. That is why I requested an ongoing relationship with Mayo just in case I get to the ESRD place. If I need a transplant, that's where I want to go. My local nephrologist kept telling me "No worries, you'll live to 100" which is one of the reasons I made the appointment at Mayo. There is no treatment for damaged kidneys from lithium use. But I didn't want to be coddled into thinking there's no risk.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5537577/
"There are conflicting studies in this article. There is not enough research.
Discrepancies among studies were largely due to methodological differences such as varied parameters to assess renal function and definitions of renal impairment, short-term follow-up, a lack of patients on long-term lithium therapy, combining high-risk and low-risk groups, choice of control group (healthy v. psychiatric patients), and an inability to control the confounding variables. Definitive data on the magnitude of the risk are still lacking. Moreover, in the absence of any pathognomonic histological or biochemical changes, lithium-associated CKD remains a diagnosis of exclusion."

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My friend told me she has an eGFR of 17 from Lithium. I assume her doc told her Lithium was the culprit.

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1 reply
mrainne | @mrainne | Aug 25, 2023
In reply to @windyshores "My friend told me she has an eGFR of 17 from Lithium. I assume her doc..." + (show)
@windyshores

My friend told me she has an eGFR of 17 from Lithium. I assume her doc told her Lithium was the culprit.

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How does she feel, does she have adverse symptoms? I mentioned in another post my cousin has lived with eGFR 20 for over 10 years. Her kidney disorder is due to taking ibuprofen every day for years. Many medications can damage the kidneys over time. Honestly, lithium gave me a normal, happy life for many years. I'm 65 now and would not do anything differently. It's a risk that was worth it to me.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Aug 25, 2023
In reply to @windyshores "I personally know three people with severe kidney disease from Lithium. My daughter has been on..." + (show)
@windyshores

I personally know three people with severe kidney disease from Lithium. My daughter has been on it for 14 years. That may not be your issue. But I am surprised that a nephrologist would say that and wonder if it is true, for my kid's sake.

Jump to this post

@windyshores I always need to remember that every person is different. Not only how a chronic issue presents itself, but how our body responds to a stimulant. That is, how we deal with a medication may have some similar effects/side effects, but still be different. Like you, I have known people with kidney issues from Lithium use. And, like @mrainne, I know people who have had no issues with it.
Ginger

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