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Gross hematuria (blood in urine): Can't find cause

Posted by carolak @carolak, May 13 4:50pm

I’ve been having gross hematuria for the last 20 days. Very bright red I’ve had blood tests and CT scans,
There is no infection and the scan show nothing. Urologist seems baffled.
There has been significant amount of blood and some clotting nearly everytime pass urine.
Has anyone had this happen?
My red counts are low ( due to blood loss)
Help

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tobytink | @tobytink | Jun 11 1:45pm
In reply to @carolak "Hi and thanks for reaching out. Any help and information is so appreciated. How did they..." + (show)
@carolak

Hi and thanks for reaching out.
Any help and information is so appreciated.
How did they “ find” that you had CAD ? What kind of dr diagnosed it?
What steps and questions should I ask the Drs to get them to “ test” for it?
I have had gross hematuria about every 4-6 months for almost 6 years. Sometimes it lasts 5/6 days sometimes it last 30 days. It’s not a couple drops it’s quite a bit.
I’ve had CT scans .. scopes … even a kidney biopsy about 5 years ago. All have been clear. I’ve had about 5-6 different urologist over the years. Occasionally my red count will be low. Usually my wbc is low.
I have a history of breast cancer 30 years ago. And have AFIB. But that’s all good. This is just annoying and gets scary after a couple weeks of the hematuria.
Anyway. Thanks for the reach out. Hope you are staying healthy

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Hi Carolak...I'm sorry I haven't gotten back to you before now. I haven't figured out this site yet and I didn't know you had responded to my post.

CAD (Cold Agglutinin Disease) is really a rare autoimmune disease (1/1,000,000). I was diagnosed when I literally peed blood and they could not get a CBC because my blood had hemolyzed (the red cells had burst and were useless). My underlying cause for CAD was NHL. Some of the tests they ran included multiple tests by rheumatology trying to look for autoimmune diseases such as lupus, etc. They realized my blood sample had to be kept at body temperature or it would be useless. Another test they often run is a thermal amplitude test and a coombs test. Cool/cold temperatures cause my red blood cells to be killed and when they are filtered out of the body it appears as blood in my urine. Unfortunately, I don't make new red bloods cells quickly enough to avoid becoming anemic. I've had several blood transfusions to help me stay leveled out.

The likelihood of you having CAD is remote, but I would certainly ask your doctor about it. There is a cold agglutinin titer he/she can run easily. It will help to decide if you need further testing.

I wish you all the best!

Donna

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