I've been hovering between stage 3a and 3b for 18 months, egfr fluctuating, lowest has been 40, highest 50.I've had a yearly health check, and for the first time it's coming back that I have micralbuminuria present, 48.4mg/l and my acr is 8.5 mg/mmol.
I've been getting a lot of oedema and breathlessness. Should I be worried that things are taking a downward trend, last test was December 23, and as I'm based in the UK, does anyone know if this now means a referral to a specialist?
Good morning Blackcat122. I believe they don't usually refer you to a Speacialist kidney doctor until your Egfr gets worse. But there's no harm in asking. I have not heard about the other 2 readings you mentioned but there is a Facebook group. Chronic kidney disease uk. Where people are very friendly and will be able to help you. Hope this helps. Brian
Thanks Brian, I'll take a look
Oh this really annoys me..the lack of support from doctors!! I'm based in Scotland and went back at forth to get tested over a period of months. Kept getting told oh we just have to repeat a couple more tests. I was aways brought up to put my faith in the NHS...my mum and sister used to be nurses. Those days are long gone. I was only told I had issues by a locum who accidently read my notes and couldn't believe I hadn't been referred to a specialist. I was at stage 3My advice is insist on being referred. Even of you have to wait a few months at least you are on the list. Do NOT wait for your GP to be proactive. I'm on dialysis now and the amount of people who are admitted to hospital suddenly because of illness only to discover its their kidneys failing is unbelievable. I'm not trying to scare you, only give you advice on what I have experienced on this wretched journey.
Regarding your symptoms of endema and breathlessness..do not ignore these!!..again I do not want to scare or worry you..however the first thing we get asked at dialysis is..have you had any breathlessness or swelling.
Go to your doctor and insist you be referred. Ask for blood test results and the actual levels. Then do your own research. Once you have been seen by your specialist sign up for the PKB app so you can keep a check on your results. Anything that isn't normal, question your doctor.
I have seen so many failings since diagnosed and I'm determined not to see other patients just fobbed off.
It's your health and at the end of the day, YOU are the only one that cares..not the doctors. Sorry if I come across brutal but I wish someone had given it to me straight at the beginning. All the best.
Hi ziggydoodah. Thanks for your support. I have the airmid app on my phone that gives me access to my blood test results, it's a godsend as it allows you to research the outcome of the tests. I'm still waiting for my GP to get in touch regarding test results, still think there's still one result to come, but I'll certainly take heed of your story and be more proactive. Take careSusan
Hi Susan
So here in Australia people aren’t usually referred to a nephrologist until stage 4. However a GP can absolutely refer someone who is at stage 3 with a combination of symptoms (like you). I’m stage 3a but bordering on 3b with negative protein in my urine. Last week I asked my GP many questions that she couldn’t really answer so I told her that that was why I needed to be referred to a specialist. I also said that I’d been talking online with people from a kidney foundation blog who told me that I should ask my doctor the questions and that she was my doctor and couldn’t answer them. She then said okay if you’re anxious about it I will and that the specialist could also assess my medications as the clinic is a Renal and Hypertension Clinic. I suggest that you do the same. Also in future please don’t wait for an annual health check. With your unstable results you should be looking at three months or whatever your specialist recommends.
What’s more concerning is your pulmonary oedema. That can be very serious. I don’t know how old you are or if you usually have high blood pressure or are being medicated for it but you need to see someone urgently. Like today if possible. Your body is clearly overloaded with fluid. There are medications that you can be given straight away to address this. In late stage CKD it is far more common but in stage 3 it could be a cardiovascular cause like congested cardiac failure for example. Sorry to be so blunt. Let us know how you go. Take care xx
Thanks badger2024It's the same over here for referrals, usually stage 4, it's just I've never had a problem with my kidneys leaking urine and wondered if this was the beginning of the rapid decline.
I usually get tested every 6 months for kidney function, previously last December, but this was an annual health check invitation from the GP which I accepted.
I'm 65, (still young!!)and I've always said I should have better kidney function for my age, so I'll go back to the doctor's ready for a fight!!
Thanks for your concern
Susan
Hi! Going through the same thing just ADVOCATE FOR YOURSELF! DON'T WAIT! Change Dr's if you have to! Huggs XOXO
Thankyou caringkriket. Huggs back. Take care x
If I had to choose between a GP & nephrologist here in the UK, Id select the latter but that's only because our GPs are generally so poor. In my mum's case, her GP has been little help and generally refers to the nephro (understandable) but tbh her nephro has failings too, as below! The main benefit of either of them is to get relevant tests done.
Re your results and concerns, there may or may not be a need to be concerned. The more I research CKD (including anecdotal evidence on here), the more I believe there are many unknowns which even nephrologists may not fully understand or agree with.
A comparison of your results and mum's may illustrate some variables for different individuals which different "specialists" may disagree on so be aware of that:
(i) eGFR: Yours 40-50, mum's ave past 18m = 53 (min 46, max 56)
(ii) Microalbuminuria latest: Yours 48.4mg/l , mum's 160.4 ug/ml (or mg/l)
(iii) ACR: Yours 8.5 mg/mmol, mum's 31.4 mg/mmol.
(iv) Symptoms (possible)*: Yours oedema & breathlessness, mum's on/off insomnia.
*using listed NHS symptoms nhs.uk/conditions/kidney-di...
In mum's case, her nephro is unconcerned by the latest results above though he never explains why (his main failing). He's just happy with her u/protein =0.23g/l, 24h est 0.45g.
Maybe that's because albuminuria is more relevant with diabetes and more common with solitary kidneys like hers? Dunno but these 2 resp. links via my research indicate that:
pubmed.ncbi.nlm.nih.gov/205...
sciencedirect.com/science/a...
Thanks for your reply. I've been called back to repeat the urine test from the GP so I'll see what happens next.Take care
Susan
Forgot to ask, whats your blood pressure as it's key in terms of albuminuria? I suspect your GP may suggest ACE-I or ARB medication if it's anything like high. In mum's case after latest results, her GP recommended the former but her nephro rebuffed that as her BP is normal at `130/80. Another difference of opinion!
BP is fine, usually 120/70 so that's one less problem to worry about!
Lab test results. I'm happy.
Test results
Just received blood test results 
Test results 
Test Results Are In
