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Nephrogenic Diabetes Insipidus Diagnosis

Kidney Conditions | Last Active: Jul 12, 2023 | Replies (10)

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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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Replies to "I've posted several times. Quick recap: My local nephrologist diagnosed me with ADPKD. Mayo Clinic ordered..."

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.

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."