CKD or not?: Hi all, in need of advice please... - Kidney Disease

Kidney Disease

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CKD or not?

Calm2 profile image
8 Replies

Hi all, in need of advice please. Went to my surgery for a blood test a few weeks back just a FBC, when she looked at screen and said why have you not been having your annual checks ? Had HA 5 years ago and because of meds I’m on a check should be done annually. I guess I just thought they would send for me and so I just forgot they hadn’t! Anyway, she took bloods for Kidneys, liver, sugar levels etc. a few weeks later I attended surgery (unrelated) and the dr casually said “we can’t put you on that because of your chronic kidney disease.”?????? What chronic kidney disease???? To be followed with “And I have referred you to a diabetic clinic as you are pre-diabetic.”?????? All this info obviously came from my recent bloods but he was shocked I didn’t know! Anyway, he took another blood test at that point to check the kidneys. I get a message telling me my bloods came back normal?? How’s that? Normal as in not CKD or normal for CKD? As you can imagine I haven’t been able to get an appt yet to question this. Should I be on to dr about this? If I do have CKD I need regular checks don’t I? Sorry to ramble but as you can imagine it was like I just woke up one day and suddenly developed CKD and pre-diabetes! Also, the CKD could well have been caused by meds i am on and so surely that should have been checked? Thanks for reading my rant!😊

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8 Replies
Miss-guineapig profile image
Miss-guineapig

I too recently just found out just similar to you. However I spoke with my GP and she explained what stage I am at, plus about the automatic annual recall. I am stage 3a and have had great information from this group. It can be a bit daunting and difficult working out what is best eat for your Kidneys. As I say , it’s new to me but there are loads of people here that will advice must better than what I know. Keep us posted. Incidentally, I have had a scan and urine test for protein and GP referred me on to a nephrologist, I believe it’s because I have scarring on one kidney and showing protein in my urine, but we’ll see what he says. Please keep us posted on your journey, wishing you well x

Calm2 profile image
Calm2 in reply to Miss-guineapig

Thank you so much for your response and yes I will let you know where this is going if I ever get to find out 😕

KajNybom profile image
KajNybom in reply to Calm2

Calm2: I had a similar problem. My health portal said I had kidney cancer. I called the doctor and the nurse said it was an error and they'd change it. They changed it to 3aCKD! Not what I expected at all. Called the doctor back twice and he refused to talk to me or to see me. I was told by his staff this was nothing to worry about so I found my own nephrologist and am working on the problem. I'd like to report the doctor but don't need the aggravation. I won't be going back to him that is for sure!

Calm2 profile image
Calm2 in reply to KajNybom

Oh dear, that’s terrible! I really think I need to request to or demand to see my Gp and get him to fully explain this. I mean the receptionist told me bloods are normal and not worry but as I said you don’t have CKD one day and it’s gone the next do you. Glad u have found help though

userotc profile image
userotc

Should I be on to dr about this? Yes, you need clarification from the deliverer of the confusing information which sadly is common with the NHS. As is not informing you that you have CKD even when they know. Thats likely because theyve effectively limited/no drugs to treat CKD directly so they dont bother telling you which is wrong as YOU can manage it naturally.

My mum was never told she was CKD 3 until my dad found out when checking her online Patient Access record a few years later! We've been able to manage it successfully for the past 6y+ via Nutritional Therapy 🤞🤞

At least the medics accepted that drugs can adversely affect key organs like the kidneys, sadly they often dont. Mum has been drug-free for around 6y.

GFR45 profile image
GFR45

Hi Calm2. Doctors generally don’t offer any kind of treatment here in the U.K. until your eGFR is consistently below 60 (stage 3 CKD) It can fluctuate so perhaps it was below 60 in previous test but now it’s above 60. I would suggest you phone your surgery and ask what is your eGFR and Creatinine from your last blood test, also ask whether they’re within normal limits.

I would also suggest you ask your surgery for a copy of your blood tests or download the NHS app and ask your GP for access to your medical records. This will enable you to see the results of all the tests done on you. There is also a link to explain the blood tests. I always check my blood results this way because I only discovered I had CKD when I asked for a copy of my blood test and queried what eGFR was. I was then told I had kidney impairment (eGFR 45 -stage3 CKD ) for the last 10 years!! Like yourself I was shocked and confused but the medics weren’t concerned and I’m still battling to get help. After doing a lot of research, changing my diet, drinking more water, exercising etc. i ‘ve managed to get my eGFR above 60 (for the last 6 years), which is considered normal here but it’s now going below 60 again and I had to initiate having it checked. Now I’m asking to be referred to a specialist but getting fobbed off.

WYOAnne profile image
WYOAnneNKF Ambassador

Please know that a single abnormal blood test results does not mean you have CKD. Your kidney blood work could be off because you were dehydrated, ate a protein rich meal the night before, did a lot of exercising the day before, etc.

When doctors diagnose CKD it's usually over time, so they can see a trend. My doctor always said that "one blood test does not CKD make."

Calm2 profile image
Calm2 in reply to WYOAnne

That makes a lot of sense! Thank you for your reply.

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