CKD from lithium, info needed

[Sphynxgirl]

Hi, new member here. Stage 4 CKD due to lithium treatment 30 years ago. There is very little info about this. Pretty rare, I guess. I'm trying to get an idea of prognosis. It doesn't seem to be just like CKD from diabetes, other causes?

Electrolytes still good, but lots of symptoms, ill feelings. Nephrologist doesn't address, or feel that I'm that sick.

[Bassetmommer NKF Ambassador]

Hi Again,

So no matter what the cause of CKD, there is little to do to bring back function. I am not sure how a treatment from 30 years ago has affected you now. Are you just finding out that you have CKD stage 4?

If you are diagnosed at stage 4, and your nephrologist does not feel this is an issue, RUN, do not walk, and find a new nephrologist.

At stage four, there are things you can do to maintain your kidney function, and in some cases improve some of your blood levels. Do you have your most recent labs? A professional should go over them with you. You need to know if you are at risk for high potassium and high phosphorous and/or anemia. These are all things you can deal with when you work with a renal dietician which you should see. A good doctor would also review any medications you are on to make sure they are kidney friendly.

Please find another doctor to help you.

[Sphynxgirl in reply to Bassetmommer]

Thanks for the reply. No, I was diagnosed stage 3 10-12 years ago and have been stable there. Just last 6 months worsening to 4. GFR 28 in February, 24 in May. Anemia for years, HBP, secondary hyperparathyroidism, osteoporosis. Doc is treating these. But I complain of malaise, restless legs, neuropathy in hands and feet, insomnia, diarrhea.. She doesn't seem to think this is kidney related? or important? I'm too healthy.. Electrolytes all in normal range. No proteinuria. Not overweight or diabetic. Just met with dietician.

I HAVE thought of second opinion. Good idea? Nephrologist is supposed to be excellent .

[Bassetmommer NKF Ambassador in reply to Sphynxgirl]

Hi Sphynxgirl,

A second opinion is up to you. I am not sure that actually there is much anyone can do for the symptoms you listed that is not already being done. The insomnia and diarrhea could be related to your CKD. Restless legs and malaise could be from the anemia.... COULD be, I am not a doctor. If your anemia is bad, there are options for improvement through medications. I was anemic when I was first diagnosed. I went on prescribed iron pills and it did the trick and now my anemia is gone and I have maintained my blood levels with just diet.

I am not sure what else the nephrologist can do that isn't being managed. You have a lot going on and all those conditions will and can contribute to the symptoms you have. But you need to have confidence in your health care team. I think you might find that working with the dietician will really help.

[camera in reply to Sphynxgirl]

sounds like vasculitis which is often triggered by hypertension "medication"

[Bet117 NKF Ambassador in reply to Bassetmommer]

Agreed.

[BMC46]

What is your GFR? Our son is same as you re lithium- neither prescriber nor GP watched any blood tests. His GFR is now 11 and 3yrs on transplant list.

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Bassetmommer offers sound advice. I am CKD-4. 79 years old. Right kidney/ureter removed in 2016, 1 year after bladder removal (cancer in both cases). I am also bi-polar, and took lithium for about 30 years until the doctors felt it was beginning to have an impact on my kidneys. I was switched to a "safe" anti-depressant. Docs felt there was little chance of further mania. My eGFR is now 27-29. I too ran away from my first nephrologist. Now I see one with whom I have confidence. I manage this (CKD-4) disease with diet and exercise.