1. < Blood Cancers & Disorders

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

Posted by carolak @carolak, May 13, 2024

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, 2024
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

REPLY
johnsky | @johnsky | Jan 19 4:40pm
In reply to @carolak "I understand thanks I’ll keep pushing them for answers. Sure don’t want to do this everyday...." + (show)
@carolak

I understand thanks
I’ll keep pushing them for answers.
Sure don’t want to do this everyday. Ugh

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Hello, did you find a reason maybe? I have blood in urine withouth UTI and crystals. It is gross and im scared.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jan 20 9:24am
In reply to @johnsky "Hello, did you find a reason maybe? I have blood in urine withouth UTI and crystals...." + (show)
@johnsky

Hello, did you find a reason maybe? I have blood in urine withouth UTI and crystals. It is gross and im scared.

Jump to this post

Welcome to Connect, @johnsky. Having blood in the urine can be very unnerving. You mentioned you don’t have a UTI or crystals. What other tests have you had done? Has your doctor ordered an ultrasound to check for possible kidney stones?

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sb2512 | @sb2512 | Feb 1 10:31pm

I am too having this issue. Looks like pure blood with very large clots, (difficult to pass at times) but obviously there is urine there too. Been ongoing since November 2024. Had a rigid cystoscopy no tumours or stones, no infection nothing at all could be found...I'm 69 (almost). Can't make sense of it at all and now dread going to pee. My blood loss lasts for between 3 and 6 days (so far) with a break of one to two weeks before it starts again.

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1 reply
carolathequeen | @carolathequeen | Feb 1 11:42pm

Consult another urologist.

What was the diagnosis?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 12 8:53pm
In reply to @sb2512 "I am too having this issue. Looks like pure blood with very large clots, (difficult to..." + (show)
@sb2512

I am too having this issue. Looks like pure blood with very large clots, (difficult to pass at times) but obviously there is urine there too. Been ongoing since November 2024. Had a rigid cystoscopy no tumours or stones, no infection nothing at all could be found...I'm 69 (almost). Can't make sense of it at all and now dread going to pee. My blood loss lasts for between 3 and 6 days (so far) with a break of one to two weeks before it starts again.

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@sb2512, it sounds like you've been seeking the help of medical professionals. But they haven't yet found the source of the bleeding? I agree with @carolathequeen. Have you been to a specialist?

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1 reply
sb2512 | @sb2512 | Feb 12 10:37pm
In reply to @colleenyoung "@sb2512, it sounds like you've been seeking the help of medical professionals. But they haven't yet..." + (show)
@colleenyoung

@sb2512, it sounds like you've been seeking the help of medical professionals. But they haven't yet found the source of the bleeding? I agree with @carolathequeen. Have you been to a specialist?

Jump to this post

I have seen a specialist and had a rigid cystoscope under anethsthesia. They have not found any cancer/tumour. However 15 months ago I had a prostrate reduction by way of a gren light surgery. They found my prostrate is again growing rather quickly and have put me back on Finesteride 5mg daily. That is it for now they are taking no further action. So I am at a loss and have given up. I'm too tired to be fighting. Life goes on until it no longer does.

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