Protein in urine, kidney biopsy. Can anyone hold my hand?

[grumpybat]

Been to the doctors today to get my blood results. I have very low albumin levels and very high levels of protein in my urine. I've got a scan and biopsy booked for Mon/Tues as an urgent case.
Has anyone been here before? Could use some hand holding

Hi, I realise this was a LONG time ago, but there’s lots of stories here that are similar to mine. If you are still active on mumsnet I would really appreciate any info you have.
What conditions did you all have & how are you doing now? @grumpybat @ScaredKittyWitchyKitty @whyme2

Hi there.
I had a condition called nephrotic syndrome which meant my kidneys were a bit too keen on filtering the good stuff out of my blood.
However I've never had a reoccurrence since the first episode and that was 17 years ago now.
I'm fine and healthy ( as healthy as a menopausal late forties single parent of four teenagers could be ).

@whyme2 thanks so much for replying!
Did you have a lot of protein in urine? & How did you know you had it?
High creatinine & protein in urine has been picked up during a bloodtest for something else so I’m wondering if I’ve had it a long time already.

To be honest I didn't know I had it until my feet swelled up and I went to the GP. She did a urine test with those testing strips and my urine was full of protein.
I was shipped off to A&E then for further investigations. I felt quite well but clearly something was going on.

Also nephrotic syndrome here. I had recurring relapses and was on medication for it for 11 years! I’ve been medication free and in remission since March ‘22.

Thanks so much for replying @grumpybat
do you mind me asking a few qs? if you can remember what happened at the start!

Did you notice any symptoms or did it come up on tests for something else?
Did you have albumin in urine?
Did creatinine show high on bloodtest?
Do you have any other conditions linked to it?

I don’t have any symptoms, I went for a blood test for something else and this showed up. I’m worried it’s something that’s been going on for years as it doesn’t seem believable that I just happened to have a test at the time something was starting! It seems things go on for a long time typically lead to more chronic issues. Lots of things I’ve read about Nephrotic Syndrome say you get swelling but I don’t have that.

I gradually gained weight until one weekend the fluid came on so heavily that you could poke your finger into my thighs and draw pictures with the pressure!
My albumin was off the scale and my cholesterol reading was 28 - the highest my consultant had ever seen!
Incredible fatigue followed and then my face swelled up so much I couldn’t see.

It took years to get it under control with different drugs and combinations but we got there in the end. The biggest difference was when I had my tonsils out (I’d had recurring tonsillitis for years) - I had a massive relapse and since then it’s not come back.

@grumpybat thanks so much for all the info. I don’t have any swelling at all so perhaps it’s not this for me!

@grumpybat @whyme2 did either of you have an ultrasound? If so, what did it show please?

@Metalhead I realise this was a long time ago so not sure if you are still active on here.
i have just had an ultrasound last week which showed kidney inflammation, did a biopsy tell you an autoimmune disease caused yours? Did the steroids work for you? Were you able to repair any of the inflammation?

Hi @Meagain24, my diagnosis was from a combination of symptoms, blood tests and the biopsy. I was on the steroids for a few months and then had regular checkups at the kidney centre for about 2 year before they discharged me. I’m pleased to say that I didn’t suffer any long-term effects and have not had any further issues since! Wishing you all the best and that you get a similarly positive outcome.

Thanks so much for replying @Metalhead did you have protein in urine at all?

I can’t honestly remember. The main thing I do remember was that on the blood test, my CRP was through the roof, along with some of the other things they tested for.