My wife was borderline cushing's disease back in fall. For years she had a nodule on her adrenal gland that was creating significant health issues. Had surgery to remove the one gland back in November, and then was on a course of hydrocortisone for about 4 months (gradually decreasing dosage until done). At her recent bloodtest, it shows that the BUN - which has always been in the normal range - went from 18 in early January to 35 by end of January, with the most recent blood test being 39. We were shocked to see a diagnosis of CKD3 on her recent results, being that it was never discussed before. What happened to stage 1 and 2 ?! Bloodwork was done in preparation for hernia surgery in a few weeks, so the doctor told me that she needed to list all possible diseases, etc. for the pre-surgery. I was also told that kidney disease "was already on her chart". I looked back and prior visits and not a thing is mentioned.
Her creatinine - which also was always normal - went from .78 in early January to .94 by the end of the month, and now is 1.09.
Likewise, eGFR - also always normal - was 82 beginning of Jan. and 66 by the end, and now 55.
My suspicion is that the whole adrenal issue really is a probably link. I consulted with her endocrinologist and he indicates that taking the cortef would not cause kidney damage. So I guess the big question is - is there actual impairment or are we seeing weird numbers that have been generated as a result of whatever the adrenal / hydrocortisone issue caused. Her GP, at this point, doesn't seem all that concerned and simply says they should keep monitoring her bloodwork. BP at the recent visit last week was 126/82 -and has been around that range. All her other bloodwork is normal.
How concerned should we be with all this? We need to get through the hernia surgery first, and then we can address the kidneys. I have read some things that point to adrenal issues affecting kidney function, so have to wonder if we fixed one issue only to create another! The adrenalectomy had to be done. Following that November surgery, there were also some severe UTIs for which she was hospitalized in December. A referral was given to see a urologist but then we never followed up on it since everything resolved after two rounds of antibiotics.
Any advice or helpful feedback appreciated.
Best,
Keith
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three4rd
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Sorry but I don't see an edit function (sorry for some typos!), but I should have added that my wife is 69. I think I pretty well covered everything else. Hoping for some replies. I must say that the recovery from cushing's disease is a long haul. Her walking ability is still nowhere near back to normal. Never expected that somewhere along the way the kidneys were (apparently?) being compromised. That's the only thing I can come up with since there has been no gradual decline in bloodwork so as to indicate prior staging. All of a sudden....BOOM...stage 3. Could have knocked me over with a feather when I saw the visit summary. Sure hope we can stabilize this. Local office didn't say a word about maybe consulting with a nephrologist or treating with meds. Only advice was to stay well hydrated. In fact, they seem to be thinking that the numbers I referred to above could well be associated with dehydration. She drinks lots of water with her meds and otherwise with meals. I'm just puzzled as to what's going on.
I had an adrenalectomy for Cushing’s Syndrome performed in March 2024. I am recovering well and taking low doses of hydrocortisone daily. My last 2 lab tests revealed low eGFR results. I didn’t realize that an adrenalectomy could affect kidney function. I will be following up with my endocrinologist to find out more.
So sorry to hear about the Cushing's, but thanks so much for the reply! My wife's surgeon who did the procedure told her that it could take up to a year to regain some of previous facility (primarily with walking, balance, etc.) Was yours unilateral or bilateral surgery? My wife's node was on the right gland and so just removal of that one. Following the procedure the surgeon told me that the node had basically taken over the entire gland.
We also had no idea about a link with kidney function. Unless I missed something, I don't believe it was ever mentioned. Hate to be overly nosey, but when you say low eGFR, I'd be curious as to how much of a change you experienced from previous to the operation. What's weird is that, the chart explaining the eGFR numbers on her visit summary indicates that "normal value is >59", which makes no sense to me given that it also defines G3a as being 45 - 59, implying mild to moderate decrease in function. Shouldn't "normal" be defined as >90? I've quite honestly never paid any attention to these numbers on either of our test results since they were always in 'normal' range, except I see that I was already at eGFR of 70, which would indicate G2! So then why wouldn't a diagnosis of CKD2 have been on my paperwork? Totally confusing.
Glad to hear that you're recovering well and that all your test numbers will stabilize. I'm betting that her severe UTI got into the kidneys. That and a combination of whatever the adrenal issue had to do with it.
I had and continue to have muscle weakness, especially in my legs. I think that it is slowly improving. My surgery was unilateral. The left adrenal gland was removed. My endocrinologist said it does take time for the body to get back to “normal. “
Like your wife, I never really paid much attention to my eGFR unless the values were abnormal, which they never were. After the surgery, I’ve had 2 different tests where my eGFR was 84. I know it’s not horribly low, but it’s not normal for me. Yes, I think the normal value is 90 or higher. No one seems concerned about my decreased eGFR, but I’m keeping an eye on it. It seems like we have to be patient, but it’s good to be vigilant for any new health developments that come up. Hope your wife’s symptoms start improving, too! Although I wouldn’t wish this on anyone, it’s good to know that there are others who are going through this and we can all learn and support each other.
Yes. My eGFR is at 84 and no red flags for BUN and creatinine. Does your wife experience insomnia? I fall asleep quickly but it’s often difficult to fall back asleep once I wake up.
.they didnt tell me i had ckd until i was 3b.a lot of drs wont even tell you until youre at stage 4...hope things work out for you and you gotta advocate for yourselves because the docs wont.research,labs and questions as well as maybe trying to get a referral to a nephrologist?
Doesn't make sense to me to not be informed about a potentially very impactful medical situation. Agree completely on being one's own best advocate. The medical system can unfortunately be a bit impersonal at times. I'm going to let all this ride till my wife has the upcoming surgery and then in August she sees her GP, who will (hopefully) order more bloodtests to see where we are with everything.
My doctor didn’t tell me either. I was getting regular bloodwork done because of a medication I was on, and I noticed my creatinine slowly going up. When mine was 1.09 my doctor didn’t seem concerned at all and she told me the same thing, make sure you are hydrated. Apparently for some reason they don’t get concerned when your gfr is >59. My labs said the same thing until I dropped below that threshold. That was 2.5 years ago and now I’m at CKD stage 5 with a gfr of 13. I would make sure her doctor continues to monitor it just in case it continues to get worse. Good luck and I hope your wife starts to feel better soon.
Thanks. Most sorry to hear about your CKD5. Surely wishing you all the best with managing it. I appreciate all that advice and we'll stay on top of things. Her doctor might order additional testing in August at her next appt.
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