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nevadagirl
@nevadagirl

Posts: 1
Joined: Aug 19, 2017

GFR of 39 and microhematuria over 3 mo

Posted by @nevadagirl, Aug 19, 2017

I have a question. I have been having chest pain and dizzyness and occasional loss of vision. All tests and scans have come out normal, including kidney and bladder ultrasound…but I have ongoing microscopic hematuria and a GFR that has been steadily declining and is now 39. I am very well hydrated. BUN is elevated, slightly anemic etc…
sounds like kidneys but nothing showed on the ultrasound. Waiting to see Urologist but still have a few weeks wait.
Wondering if there can still be bladder and kidney issues that were not visible on scan? What might the possibilities be?

REPLY

Welcome to Connect, @nevadagirl.
While we surely wouldn’t be able to diagnose here in this patient to patient community, I’d like to tag fellow members @predictable @rosemarya @jjwest and @ryman, who know quite a bit about bladder and kidney issues from their own experiences. I’m confident that they can give you some ideas of questions to ask the urologist when you see him/her in a few weeks.

You may also be interested in reading or taking part in these past discussions:
– Possible low kidney function https://connect.mayoclinic.org/discussion/possible-low-kidney-function/
– Diminished kidney function http://mayocl.in/2l9m1P9

It must be concerned to have chest pains, dizziness and occasional vision loss. Have cardiac and neurologic issues been ruled out?

@nevadagirl, I join Colleen in extending my welcome to Connect. Am I correct to believe that you have been seen by a nephrologist?
How long have you been experiencing the dizziness, chest pain, and loss of vision? I think that a visit or call to the doctor who ordered the kidney and bladder scans is in order.

From my experience as a kidney transplant recipient, I would guess that the urologist might be able to determine a reason for the ongoing microscopic hematuria and thus provide a treatment. Or at least rule out possible problems from his standpoint. Since my transplant, I have been seen by a urologist for a scan. I am sorry that this is all that I have to offer from my experience. My kidney issues came fast and furious with my liver failure, so I never had an opportunity to learn much. I will be happy, though, to try to help you with any further questions.

I would want to know from the urologist – Is anything going on? and is it causing my GFR, BUN, anemia issues.
Rosemary

Hi @nevadagirl, Colleen and Rosemary are spot on and very helpful. It sounds like you are being followed by nephrology and urology. I am diabetic and post pancreas transplant. I’m also awaiting a kidney transplant. The chest pain, dizziness and loss of vision sounds scary. I’ve had dizziness and loss of vision associated with the diabetes and high/low blood sugar fluctuations (also blood pressure issues). So many things can cause those symptoms. I agree with Colleen’s suggestion of ruling out cardiac and neurological issues; plus I’d add endocrine concerns. Last but not least, I’m a former psychologist. Chest pain can be associated with stress, anxiety and panic attacks. I probably don’t need to tell you, this stuff is stressful and can lead to anxiety. I hope your providers can get to the bottom of it and recommend a plan that works for you.
Wishing you best outcomes from Cheryl.
I forgot, I have anemia issues also that once resulted in dizziness and loss of vision.

Hi @nevadagirl. I too would press for involving a nephrologist for thorough analysis of the beginning of your urine removal process. Microscopic red blood cells can escape inside the kidneys, and ultrasound scans might show no evidence of it. I note that your GFR has declined to 39; so has mine, but my medical team is not alarmed with that without other evidence of problems. Your anemia raises questions that a nephrologist might be able to answer.

I had surgery to remove part of my prostate 8 years ago, and that exposed small veins to the urinary tract, so my hematuria is more than microscopic but less than gross and recurs about once every three months. So we’re watchful and waiting. That surgery also exposed a number of small tumors in the lining of my bladder; regular scans (annually now) of the bladder lining with a cystoscope revealed no suspect sites for bleeding. Hopefully your medical team can provide you more information about possibilities all along your urinary system — kidneys, the ureter to your bladder, the bladder itself, and the urethra.

In my case, my nephrologist called in an endocrinologist to help with the lab tests, in part because my hypertension was driven by reduced kidney function (inability to reclaim potassium) and because hormones are so important to kidney and adrenal gland functions. Could hypertension be a factor in some of your symptoms now? Martin

Hi, @nevadagirl Your first move should be to have a SERUM Protein Light Chain assay done, as designed by Bindings Site and Mayo in UK , and a 24-hr urine collection Protein assay..If it shows anything but complete absence of misfolded protein in the 24-hour, there is probably your problem. There should be no more than 0.5 mg/deciliter protein in your urine. Anything over 0.2 is enough to cause the burning feet, and over 0.5 is enough to threaten your heartbeat, and thus your life. Over 1.8 mg/mL protein in your serum can easily kill, and no one will every know what did it.

@oldkarl

Hi, @nevadagirl Your first move should be to have a SERUM Protein Light Chain assay done, as designed by Bindings Site and Mayo in UK , and a 24-hr urine collection Protein assay..If it shows anything but complete absence of misfolded protein in the 24-hour, there is probably your problem. There should be no more than 0.5 mg/deciliter protein in your urine. Anything over 0.2 is enough to cause the burning feet, and over 0.5 is enough to threaten your heartbeat, and thus your life. Over 1.8 mg/mL protein in your serum can easily kill, and no one will every know what did it.

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I was unfamiliar with Serum Free Light Chain assays, so I looked it up and found this information for others who may also be unfamiliar with this lab test. https://labtestsonline.org/understanding/analytes/free-light/tab/test/

Karl, you seem quite knowledgeable about these tests. Are you a medical professional or a well-studied patient? Which protein test was being analyzed in your case and for what condition?

@oldkarl

Hi, @nevadagirl Your first move should be to have a SERUM Protein Light Chain assay done, as designed by Bindings Site and Mayo in UK , and a 24-hr urine collection Protein assay..If it shows anything but complete absence of misfolded protein in the 24-hour, there is probably your problem. There should be no more than 0.5 mg/deciliter protein in your urine. Anything over 0.2 is enough to cause the burning feet, and over 0.5 is enough to threaten your heartbeat, and thus your life. Over 1.8 mg/mL protein in your serum can easily kill, and no one will every know what did it.

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Hi, Colleen. First off, I am not a med pro, although I have spent more time in hospitals than many MDs I know. My body was going to pieces, and it was very similar to @nevadagirl. GFR in the 40s would bounce up to 60s and back in a couple days time. Blood Glucose all over the place, running from 50 to 400. All measurement tests of every organ were off minimally, usually around 10% or less, but always showing larger than normal size. This started during high school. Kidney, lungs, throat, liver, thyroid, heart, nerves, brain, eyes, spleen, pancreas, larynx, cancers everywhere, macular skin on arms, legs, etc., all going bad. So I started spending a lot of time trying to figure it out. I read in some daily newspaper a brief article about Amyloidosis. Then I started looking at symptom checking sites, and found this strange word again and again. Then an online doc said I had Amy. So I started looking. I found the classic Amy book from Mayo, Morey Gertz ed., “Amyloidosis–Diagnosis and Treatment” , started reading. Expensive, but worth it. Found the Amyloidosis Foundation, and the NIH library. And the doc did the sFLC and 24-hr proteinuria analyses, and both showed results well above the safe range. So I studied harder, and kept track of my lab tests and observations, such as purpura in the eyelids, macular skin, petechiae, daily BP, etc. Well, you have seen the rest of the story. There are many more signs. Hematuria, proteinuria, corneal dystrophy, nail splitting, carpal tunnel, shoulder tendon issues, RA, PA, cardiac QRS low voltage, etc.

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