Test result guidance

[Justinealexx]

Hello all. Happy new year!

I haven’t posted in a while. It’s been a hectic year of cataract surgery and elbow surgeries. Hoping 2020 will be calmer.

Today I had a rheumy appointment. I was due a follow up 6 months ago but my consultant has grown a two year backlog so today I was seen by another doctor I haven’t seen before. I would be grateful for any experience in understanding my test results.

My diagnosis is Lupus SLE with Sjogrens. I take hydroxy and use multiple eye drops. I don’t have a copy of my test results but understood my white blood cell count is low (I have had auto immune neutropenia for more than 20 years though my lupus diagnosis was only 2017) and liver function is slightly abnormal (this is a common theme for me though the extent varies but the doctor says liver involvement is not usually associated with lupus).

Blood pressure was low at 98/68.

What was unusual though was he mentioned there were white cells in my urine. I’ve not had this previously. I have no other bladder or kidney symptoms, no UTI that I’m aware of. I don’t want to worry unnecessarily but I’m not sure what might be causing this?

I would have asked but the questions were coming thick and fast and the conversation moved on quickly and I’m easily distracted! Grateful for any help understanding. Thank you.

[Hidden]

Hi there and happy new year to you.

I have Sjögren’s with overlap CTD, Raynaud’s, small fibre neuropathy and other stuff. I don’t have chronic low WBC count but my lymphocytes are always just a little under range. I have trace blood in my pee and no one has ever found out the cause. Sometimes I have white blood cells too - usually due to upper UTIs which I don’t usually become aware of until the reach further up the tract. Could this be what’s happening for you too perhaps?

Re your liver - don’t underestimate the potential impact of Sjögren’s on your organs - it is often associated with various forms of liver disease including PBC and fatty liver disease. Rheumatologists and those with secondary Sjögren’s often don’t seem to be aware of this so much. Similarly with UTIs - sometimes the proximity to our other female anatomy and the inflammation and atrophy of Sjögren’s seems to contribute to these subtle infections and changes in urine and blood.

Re questions coming thick and fast and getting easily distracted - oh yes this also describes me to a tee!! X

[Justinealexx in reply to Hidden]

Thank you. That’s really helpful. I’ll be on the lookout for any signs of UTI developing. I really appreciate you sharing your experiences.

[KayHimm]

I know how any abnormality in the urine can cause worry. I have had this experience. Did your rheumatologist ask for a repeat test or a 24 hour test for protein? Did he tell you to follow up with your GP?

I can share my experience. With red cells and protein the next test was the 24 hour test for protein. After that was negative I had urinalyses very frequently - every two weeks - for a long time.

Can you contact your rheumatologist? If it is hard to reach him, just go to your GP. Your GP can do all the tests to rule out infection and monitor kidney function.

Good luck with this. Totally understand your concern.

K

[Justinealexx in reply to KayHimm]

Hi. Thank you K. No repeat tests were requested. To be honest I wonder if he got as distracted as I did. He went on to prescribe fluoxetine for treating Raynauds and then gave me a steroid injection in a dodgy hip! Previously I’ve waited months for these injections so it rather took me by surprise (pleasantly) that it was offered then and there. Thanks for the GP suggestion 👍

[KayHimm in reply to Justinealexx]

That is a great sign if he got distracted. A rheumatologist would never get distracted from results that could mean kidney involvement in a lupus patient.

I would still check in with your GP to ease your mind and keep him in the loop.

[Lupiknits]

On my very first appointment I had white blood cells in my urine too, which didn’t seem to faze them. It was a UTI brewing in my case.

[Justinealexx in reply to Lupiknits]

Uh oh! I'll get to drinking plenty of fluids I think and try to flush out any signs of infection. (I rarely drink enough water - I'm rubbish!)