Diagnosed with CKD stage 3a

[Har40]

Hi all,

I have never posted on here before, just been reading other posts and reading up.

So I am looking for advice please.

I was informed by my doctor on 6th Dec. That I have CKD stage 3a - eGFR 58. She asked me to take a urine sample in which I did and looking on my online record that is all normal...no protein.

The doctor said on 6th Dec that she is checking if I need any further tests or investigation, as I am 47 yrs old, no diabetes, no high blood pressure.

Since the call on 6th Dec, during which I was sent a link about CKD to read, I have heard nothing. I rang for a follow up last week and still no response.

I am in Uk and this is NHS.

Is this normal? She didn't even contact me back about the urine sample, should I complain? I have been worried since I heard the news.

Thanks

H

[Partner20]

If test results are normal and no further investigations are required it is common practice nowadays not to hear further from your GP.An eGFR is an estimated reading, and can vary from day to day. A figure of around 60 does not seem to overly concern a GP. As other tests have returned no concerning results perhaps ask for the test to be repeated, making sure this time you are very well hydrated, as dehydration is a common cause of a lowered eGFR.

[Har40 in reply to Partner20]

Thanks for your reply, I'll wait to see if docs respond to my request for follow up 👍 Seems odd they leave you to it, prevention is surely better than cure!

[Partner20 in reply to Har40]

Unfortunately that is how the NHS appears to work nowadays. You have to contact them, abd do all the suggesting and requesting, instead of vice versa. There are many among us who know far more about our own particular conditions than even the consultants treating us appear to do. As for GPs, they can be even worse, if you can ever talk to them, that is.Hopefully you will get things sorted out soon.

[Har40 in reply to Partner20]

Thank you

[dolly2002 in reply to Har40]

I get my blood checked every 6months stage 3 82 years old cause had high b/p for 20 years but was on med for all those years. no one told me between 2 drs. i looked on the portal to see their notes and one of them put CKD stage 3 in there. see a nephrologist and he is not concerned with me at all. but check with your ins. might not be covered every month and I heard if ins doesnt cover it. it is very very very expensive. good luck

[Tuffcookie71]

I’m 71 and have stage 3a ckd. Mine was caused by high blood pressure. I am drinking a lot of water, watching the sodium. In addition, I requested my GP (general practitioner) give me a standing labwork order, to check my egfr every month. Sometimes you have to be pro-active in your care.

[Har40 in reply to Tuffcookie71]

Thank you, I'm realising that I need to push for answers/tests etc. I've also been drinking more water, no red meat and reading up on kidney friendly food.

[HeartyJames in reply to Har40]

Since urine ok, not a lot to worry about. Ask for another test then 3 monthly check, and you may find the next one has improved. If still at 3a then ask for a ultrasound

[Har40 in reply to HeartyJames]

I will do thank you

[bootsboots in reply to Tuffcookie71]

I am 78. I have Stage 3B--it has been stable for 6 years, since I was first diagnosed. I am in the US. I have my labs tested--including GFR--every 6 months. I am wondering why you want it done every month?

[Tuffcookie71 in reply to bootsboots]

I requested monthly labs because it makes me more accountable to myself! Knowing I have to have blood drawn, each month, keeps me on track of drinking enough water, watching my sodium and sweets! I also check my blood pressure twice a day.

[bootsboots in reply to Tuffcookie71]

I can understand that.

[orangecity41 NKF Ambassador in reply to bootsboots]

I am 83 and was diagnosed at Stage 3B also, when I was 76. I was put on a CKD diet and CKD has stabilized.

[bootsboots in reply to orangecity41]

I was never advised to go on any kind of CKD diet. In fact, my doctor said I didn't need to do anything. So I just eat whatever--regular American diet.

[orangecity41 NKF Ambassador in reply to bootsboots]

My bloodwork for phosphorus, potassium, sodium, and protein were high, (was a pattern of it) , so was reason put on a CKD diet.

[userotc]

In answer to your question, yes that's a typical response from medics and certainly NHS. To be blunt in order to make the point, healthcare is sadly often do-it-yourself, at least in the UK.

[Har40 in reply to userotc]

Thanks, that sadly seems to be the case.

[Skip56]

Bonjour ne vous alarmez pas , le médecin vous aurait contacté s il y avait quelque chose de grave, il faut surveiller par une prise de sang tous les 3 mois et analyse d urine de 24 h, surveillez votre tension, manger sans sel , et évitez le potassium comme les fruits bananes , kiwi

[Har40 in reply to Skip56]

Thank you, I will follow up. And yes I read about potassium, hoping I can still eat one banana every day if I'm careful in other ways!

[BlackCat3491]

I am afraid that it is up to you, the patient, to ask for what you want.

With my last blood test - when I rang up for the results, I was told by the receptionist they were "Satisfactory". I said that it was not good enough as I wanted details about my levels. He/She then consulted a GP in the office who then gave permission for my details to be told to me. They were as I suspected because I have been getting my own blood tests every 3 months. The custom (apparently) for CKD checks is every 12 months!!!

Fortunately I now have a new GP in the same practice and I made an appointment to see her. She was brilliant - I took in print-outs of all the blood tests I had taken over four years! She was extremely pleased - I told her that I felt it was up to me to be pro-active in my health care. I discussed my regime with her and she was happy with that - I also gave her a list of the supplements which I take in addition to my regular meds.

I now have confidence in this new GP and look forward to a good rapport with her. I will continue to get my blood tests privately, this gives me confidence in my health management.

[Har40]

Thanks for your reply, yes the reason I had the recent tests is because I asked for them after going through all my blood tests from previous years myself. However I naively thought that following diagnosis they follow up. But from all the replies I see that's not the case. I will also start logging and listing my bloods, diet etc myself too.

[KajNybom]

I have had a similar problem with my doctor so I changed doctors and hired a nephrologist. From my experience and what I have read from others, doctors don't focus on this kidney problem. 58 means your kidney is functioning more than half, but you have to watch your diet and make sure it doesn't drop. That said, once I learned about my ckd I quit eating out of fear of eating the wrong thing. Lost 30 lbs just from worrying. Really a dumb thing to do. My number was lower though. My suggestion is to read about ckd, get on a ckd diet and maybe get a new doctor!! Best of luck.

[Har40 in reply to KajNybom]

Thank you, I have purposefully been trying to lose weight and totally understand you not eating, all the foods that I cam eat on the diet I am doing seem unsuitable for CKD, so I feel like I'm not eating enough. I will look into nephrologists thanks

[Gunnison5]

It’s similar in US (yet not as long as in UK) but keep on reaching out to your MD to get the. information and understanding of your situation. Wishing you good luck.

[Har40 in reply to Gunnison5]

Thank you, I have contacted the GP again so am waiting for a response.

[WYOAnne NKF Ambassador]

I am one of those people that want to know the results. That way I can trend my results. It is your right to find out the results. Here, I have a patient portal and my lab results are posted 2-3 hours after my labs & urinalysis are done.

It is true that if your are dehydrated it will increase your creatinine & decrease your eGFR. I make sure that i drink enough water everyday so I don't run into being dehydrated.

[Har40 in reply to WYOAnne]

Thank you, I am the same. I want to know the details. I can access my results on a portal too which is good. And it's interesting to know about the dehydration affecting results.

[Pontios]

Hi Har 40,

you are in a good place all things considered. You still have plenty of kidney function left.

Now you need to do all you can to prevent or at least slow down further deterioration.

Since about two years SLGT 2 Inhibitors are prescribed to prevent deterioration in kidney function you need to ask and persuade your GP to put you on these.

Avoid NSAIDs under all circumstances. Avoid PPIs. Be wary of any new medication you are prescribed, read up on it on whether it damages kidneys. Be wary of contrast medium (used for some MRIs, Angiograms etc). Ensure you are hydrated at all times especially if you get ill. Reduce your protein intake. Reduce your salt intake. Monitor your BP. Consider going plant based. Excercise.

Flag your limited kidney function to any medics you deal with. They can be the greatest danger to you of all - prescribing for example NSAIDs for pain, inflammation etc or prescribing other nephro toxic drugs which may help the condition you are complaining about at the time but will damage your remaining kidney function.

I wish you all the best.

[Har40 in reply to Pontios]

Thank you for this, this is very helpful. Stopping any further deterioration is exactly what I want to do. I've taken both NSAIDs and PPIs in recent years, which is why I don't understand GPs not advising about reduced kidney function before stage 3, so we can start to do all these things sooner.