Confused!

Any help reassurance or advice would be much appreciated.

I got referred for further testing in Dec 16 due to having increasing creatinine and low gfr (about 53) I went for an ultrasound which came back normal.

Since then I had another blood test which showed my creatinine levels had decreased and gfr had risen to about 67. Dispute this I have been referred to a nephrologist who I am due to see in June. He has also ordered for me to have a series of blood tests taken 2 weeks prior to the appointment. The blood tests are

Ana, bicarbonate, c3, c4, ck and full blood count (including liver, kidneys)

What can I expect- what may be going on with my body?I get quite worried about the outcome and what it may mean for my future?

Thank you

15 Replies

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  • Hi Naomi

    Firstly, how are you feeling in yourself? Are you having any symptoms? If not then it's a good sign that whatever is happening has been caught early. Also be reassured by the normal ultrasound. As for the blood tests, I don't know what the 'c' ones are, but a full blood count and u and es ( urea and electrolytes ) will be good indicators if there is a problem.

    What will the future hold? Who knows. It may mean medication, a change in diet or nothing. It will probably mean more tests... For now, try not to worry. You are booked to see a nephrologist. He/she will be able to answer some of your questions and decide on the next step. Good luck.

  • Thanks for replying. I don't feel too bad In myself. I have been dealing with a few symptoms such as increased thirst and a niggling pain in my calf,although I'm unsure if this is related.

    I've had numerous full blood tests but nothing has come back apart from the things mentioned above.

    Thank you

  • Hi. Naomi641

    Try not to worry too much, as most GPs dont refer to nephrologist until you reach stage 4. [with exceptions ]

    I have been at stage 3 for many years, my eGFR hovers around 38/40, and I have never been referred, last month it was 44 then it went down to 38 and last week it was back to 44, so it does fluctuate. I'm sure all will be OK with blood tests.

    good luck

  • It's interesting to hear that you were not referred until your gfr was a lot lower. I forgot to mention that I'm 27 so I'm guessing my gfr is not too great in relation to my age 😑

    Thanks for the reassurance

  • I feel your Dr. is being cautious at your age, so good for him. I think you will find several people on this site with stage 3 CKD have never been referred to a Nephrologist, and being managed by their GPs with regular blood tests, I have a blood test every 3 months.

  • Oh I see- I was not aware of this, I just assumed that you would be under the care of a neph. Thanks.

  • This is good to hear because I was wondering about that too. I have not been referred to a nephrologist and I do have stage III kidney disease.. I am being managed by the blood test to every three mionths..

  • One GP said to me "if we referred everyone with stage 3 CKD to the Nephrology clinic they wouldn't be able to cope" I have been well looked after with my regular blood test, I also had an x/ray of my kidneys, which showed i had one kidney smaller than the other with some cysts, and was told "nothing to worry about as lots of people have cysts which don't cause any problems." I also have hypertension, which I take meds for.

  • You sound just like me. I have one kidney also that is bigger than the other and I have hypertension which I'm having a little problem with right now.. my blood pressure is a little higher than it should be right now and I'm not sure why.

  • With CKD it's good to have your b/p under control, however mine has been higher than normal recently so my GP has upped my dose of Ramipril. to 7.5mgs from 5mgs. I have been on many b/pressure meds in the past and finally ended up on Ramipril, I see my GP tomorrow to see how I'm getting on with the higher dose, and my B/P is much lower.

    I have already seen my eGFR results which is 44 so it's gone up from 38 so that's good.

  • Hi Naomi , it has been found a decline in kidney function can be due to auto immune problems so your ANA titre anti body is being checked before you see the nephrologist. You are very lucky to see a specialist so quickly so don't worry .. you will soon be sorted.

  • pl do not worry

    my gfr dropped from 51 to 20 over 4 years , you can live with it , if USscan is ok that means your kidneys seems to be normal, how ever avoid high protein , red meat, high potasium goods, take less salt.

    im 72 now my gfr rose to 27 from 20 , this is not fatal , find the real cause of grf drop , are u

    hypertensive OR diabetic? go to this link u will get more information " GFR Calculator – Glomerular Filtration Rate- Davita "

    Further more u may get many other links about kidney problems.

    wish u good health

  • Thanks I'll take those tips on board. My blood pressure is fine as I've had this checked quite a few times and I've had tests for diabetes too which were negative

    Just a mystery?

  • Write down any questions you may have FOR the appointment with your nephrologist and get answers.. If your GP has referred you its better to see a specialist sooner rather than later .

    Remember the NKF's main site has a lot of information for patients.

    kidney.org.uk/help-and-info/

    As well as a helpline:

    kidney.org.uk/helpline

  • Thanks- I don't have many questions yet as I don't know entirely what I'm facing as of yet.

    I am on the waiting list so not much I can do apart from wait until the appointment with the nephrologist

    Thanks for the links

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