Not sure what's next...?

Posted , 3 users are following.

Hello,

35yr old female here looking for advice (not diagnosis). If anyone can tell me what kind of problem the nephrologist might be looking for and what other tests might be considered (I'm assuming a biopsy is likely) I'm confused because my kidney function in blood tests is still 'normal' does that rule out serious kidney disease? I want to prepare myself that's all, not looking for a diagnosis. I can't seem to find enough specific info online relating to my situation.

My symptoms are:

-Hematuria often gross (in the morning my urine is dark rust coloured no matter how much water I drink) for 6+ months. Have used dozens of dipstick tests at home to check for changes, always highest level measurable and no reduction any time.

-Flank pain. Fairly constant but can get more intense at times. 6 months

- difficulty starting and maintaining urine flow (comes and goes)

- Pelvic pain when fully emptying (comes and goes)

- low grade fever 6 months

-Night sweats 4 months

- extreme fatigue 6 months

- proteurea 2 months+ but only low levels currently.

- sweat that turns yellow and smells like vinegar (no changes in diet or personal hygiene) <1month

So far tests and ruled out problems are:

- infection (blood and cultures multiple times)

- kidney stones (X-ray, CT)

- structural abnormalities (ultrasound)

- bladder conditions (cyscopy - bladder looked very healthy)

- Diabetes (bloods + dipstick)

- kidney function blood tests are 'normal'.

Because of other underlying conditions I drink 2ltrs of water a day minimum so dehydration shouldn't be an issue, I also have a healthy diet. Drs

Thank you for reading and any thoughts xx

0 likes, 7 replies

7 Replies

  • Posted

    Hi,

    The neph will more than likely start with a 24 hour urine collection, you can obtain so much more information from this than a small tuble and one wee.  They may do an MRI and inject dye into you so they can see exactly how your kidneys are working, this doesn't hurt. They may do an ultra sound of the area to rule out any problems and only if they can't see anything they may consider a biopsy.  Please do not worry about this if it needs to be done as long as you do exactly as you are told it is fine, I have had two on my on kidneys in the back and one on my transplanted kidney in the front (the one in the front was much worse). I won't go into the procedure unless you have to have it but I will say its not bad. I would look on the fact all of your blood results being normal as a good thing at this stage and as easy as it is to say try not to worry about what may or may not happen in the future.  Good luck with everything and do give updates as to how you are getting on.  I would avoid ibuprofen as kidneys don't like it. Hope this helps a little xx

    • Posted

      Thank you so much. That's really helpful and encouraging! I was hoping a biopsy would be the last resort but my GP said it's likely, I'll wait and see. I've had CT and MRI's before so I'm not too concerned about those, not keen on cannula's but having other (non kidney-related) chronic conditions you get used to being stuck with needles and tubes!

      Interesting about the ibuprofen as I do take a reasonable amount of those, I have constant pain which hasn't been controlled well so ibuprofen and paracetamol are my only relief :-/

      Thanks again!

    • Posted

      tiri, as Helen has said, please try and avoid the Ibuprofen, especially if you are already concerned kidney-wise. If you are suffering long-term, constant pain, have you been investigated as to the cause?
    • Posted

      Hi,

      I feel your pain I have been poked and stabbed my whole life lol.  Paracetamol are ok and the best thing for you meds wise.  I promise biopsys are not as bad as they sound.  You don't feel pain more of a pushing and I could here the needle going through all of the layers its like a clicking sound but not bad.  The biopsy on my front kidney was horrible but I think that was beacuse the dr kept forgetting to load the machine so had to stab me more than needed and I had only just had my transplant so was sore anyway.  Much preferrred it on my own kidneys you will be fine if you need to have one x

    • Posted

      Hello, thank you for your reply! Yes, the constant pain has a underlying cause which has been diagnosed.

      I have a connective tissue disorder and I suffer from regular soft tissue damage due to loose hours, it's also led to fibromyalgia type all over pain.

      I've tried a couple of "long-term" pain solutions that I've reacted badly to sadly so it's back to paracetamol and ibuprofen or codine when I can tolerate it. X

    • Posted

      Thanks so much Helen!

      I can imagine having a biopsy on a transplanted one was not fun :-(. I've heard mixed reports so it's good to have one that isn't awful ;-) xx

    • Posted

      Hello,

      Don't take ibuprofen kidneys don't like it, stick to paracetamol or cocodamol if need be but not for more than 3 days at a time.  You can also take 1 500mg paracetamol and 1 500mg cocodamol if the drug by its self makes you a bit off your face lol.

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