Hi all, I would like to get your opinions on the following and see if I have taken this too harshly by making a formal complaint to my surgery🤔
I had a telephone consultation with my GP yesterday regarding an X-ray I had on my back and leg. To cut to the chase, pain relief meds were bought into the conversation. Out of nowhere he said that we must be careful because of your ‘Chronic kidney disease?!’ What chronic kidney disease? First time I had heard that one ! I am aware that I had annual blood tests to keep an eye on other things but I was never contacted about my kidneys. Surely if my annual tests were coming back abnormal then meds would be changed accordingly? I now feel like had this been picked up over the last 5 yrs (since HA) then with a medication change I wouldn’t now be told out of the blue I have chronic kidney disease! Your thoughts would be appreciated 🤔 I should add this was not because of any recent blood test as my last test was over 6 months ago
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Calm2
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Hi, you're entitled to see your medical notes, both hospital and GP (Plenty of advice from the Government and the NHS on how to apply to see them), once you have got them, hopefully you will be in a better position to determine why your Dr said you now have Kidney desease, and then you can make an informed decision as how to progress.
Many years ago there was a change in the way kidney disease was calculated on blood test. This resulted in a lot of people getting this marker on their record. I have it too. A nurse picked up on it in my records and explained this to me. She told me that she had removed it from my record but it still remains.
I’m interested to know how you get on with this as it affects me and many others too.
I had the same two years ago. I just happened to see it when looking at my records online. It had never been mentioned. I phoned them in a panic. It turned out to be just one blood test that went slightly over the level at which it automatically goes on your record. I had been called back for a repeat blood test which was perfectly normal but because "the system" automatically records it, it stayed there.
It is very common that the doctors don't tell you anything. That is why you should read all your results yourself and ask questions.
Long time ago I had an ultrasound of the abdomen and my GP didn't say anything except that everything is fine. Only after reading my ultrasound report I realized that my aorta is calcified. For my GP that was fine. Doctors don't really have time to discuss anything. They are busy writing referrals and they don't spend time even reading the results. I am very disappointed. I realized that my sleep apnoea maybe resulted in the calcification of my aorta. It looks that it is very common over the age of 40.
Finding out by chance that you have chronic kidney disease would certainly be a bit scary, we found out quite by chance that my husband has chronic kidney disease and like you were shocked. However whilst it sounds scary it isn't necessarily so, chronic simple means it's an ongoing condition and there are degrees of chronic from mild (little to no symptoms), moderate and severe, my husband's stage has been mild for about 10 years. I once asked the HF nurse about heart meds causing kidney disease & was told they can do things for the kidneys. If you've never had your meds adjusted I would guess that's because the disease is only mild & bear in mind that as we age we're all likely to suffer from loss of kidney function to some extent. I would simply ask your GP why you haven't been told this before & the implications of having kidney disease.In the back of the ambulance bluelighting my husband to hospital just a couple of weeks ago the paramedic said to my husband 'you do know you have kidney failure'!! Technically he does as his kidneys don't work as well as they used to but the loss of function is mild & he's never had his meds adjusted because of it, its just putting it into perspective really.
Thank you for replying. Your reply was very informative thank you and also very logical. Made me feel better. I still think it’s very wrong to suddenly be told this as u don’t wake up one morning and suddenly have chronic kidney failure it must happen over time . Glad your husband is ok
I completely agree, it came as a shock to us as well. I just think that when something is not really an issue our medical team forget to tell us these things!! Another example was my husband has, over the years, had frequent x-rays/scans on his lungs as he'd used to work with asbestos. So after the last scan we phoned the surgery for the results some weeks later & got a 'text' from the GP saying the scan showed he had plaque on his pleural wall, that this was due to his exposure to asbestos & that the follow up appt with the lung specialist had been missed! We totally panicked, made an urgent appt with the specialist only to find out that he couldn't understand why we were there! The plaque had been there for years, it hadn't got any worse, that as it was coming up to 40 years since he'd worked with asbestos it was very unlikely he would now suffer from any asbestos related condition!! But nobody had ever told us about this plaque before!
No one diagnosed it and told me. The only drs I have seen are gps at my surgery so if they checked the results correctly surely they should have discussed it with me?
I had a phone call from someone at my GPs surgery following a routine blood test telling me I had CKD and to drink more water. After a bit of research I worked out that the level was stage 3a. During a subsequent face to face appointment with a GP I mentioned that I felt worried about it particularly as I have other health issues. The GP told me not to worry, it’s part of the ageing process and in fact she has the same. I haven’t had any advice regarding diet etc. so asked for a referral to a dietitian some months ago, as yet have heard nothing.
I have only ever seen a consultant once when he came to discharge me from hospital 2 days after HA. I have only ever seen gps since . I did not have chronic kidney disease prior to the HA as I’m sure I would have known about it
No I know that because my Gp told me about how I would have yearly checks for cholesterol, kidneys etc as some meds can cause damage and the first year I remember being told all ok. Subsequent years it has never been mentioned, no news good news? How wrong I was
definitely worth asking to see your notes to find out the when, where & who?! You shouldcertainly have been told previously & in a more supportive manner! Good luck.
Not necessarily. The NHS has lowered the level at which kidney disease is automatically recorded. IT only takes one blip in your blood test eg maybe it was taken on a day when you hadn't drunk much or you'd only just taken your meds, but it automatically goes on your record. If you see my other post, I found it on my record purely by accident. When my GP explained, I remembered being called back for a second blood test which was fine as have all others been since that one test. No doctor had put it on my record. It was done automatically after just one very slightly high test result. Check with your G P how all your others have been since then. It could be that the GP you spoke to had only seen that one mention and never checked your annual results
Hi, I cant say I'm surprised that your GP hasn't mentioned CKD previously, in my experience its not seen as a problem for the best part. CKD is measured in 6 Stages with 5 being the worst. I was told many years ago when my eGFR tanked that CKD is notorious for people with heart disease. Its just a case of what stage you're at. My bloods are taken, very regular at 3 months and sometimes shorter periods, mainly because having HF, meds can make a difference for the good and bad. I've had an eGFR of 30-35 since about 2013, along with high Creatine levels, so I'm at Stage 3b, although I have dipped into Stage 4 on occasions in the last couple of years. I don't have any form of intervention, nor do I envisage any unless my eGFR plummets further or Creatine level get out of control. I've been on Dapa for about a month and the highest dose of Entresto for a couple of weeks, so it should be interesting when bloods are taken this week.
I would suggest asking your GP what stage youre at and an explanation of CKD in general.
Being told you have CKD without both any form of eplanation has a lot to be desired from your GP and they should know better.
thank you for your response. I know absolutely nothing about stages etc the only thing he said to me was something was 58 and is now 70? No idea what that refers to? I am hoping to get an appointment to sort this out. I need to know when the kidney issue started and why I wasn’t informed.
I wonder if your Dr was referring to your eGFR level. If so an eGFR of 70 isnt too bad at all, my husband's eGFR fluctuates between low 50's to low 60's. The link below might be of some help to you.Please keep us updated when you've spoken to your Dr.
Hi, Thats a good link. The reality is that the vast majority of members on here have CKD, they just dont know it because of the way its measured in its various stages, so its not perceived as a problem for most.
I agree, and for the vast majority it hopefully won't become a problem. We were never told about eGFR but picked up bits of info on various support groups (which is what they're great for) and asked my husband's nurse about his & that's when she said they can do things for your kidneys. We have been told the heart will always take priority over everything else, my husband was refused surgery for cancer because it would affect his heart which we were incredibly upset about. But even the limited treatment he has had has affected his heart badly so I now can understand why it was refused
My 'Gut Feeling', as a Kidney Patient Myself, is that this a Mistake- the wrong 'Notes' picked up, or something Similar. Certainly, IF you DID have Long Standing Kidney Problems, you Would Know about it, this a Quarter Of A Century's Experience Talking.
Maybe get another Appointment and expect a 'Rather Embarrassed GP', or maybe, Nurse. Either way I wouldn't 'Worry About' this too much Calm2. Has your Surgery 'Recently' had a 'New, And Improved, Computer System' fitted? (Thought so!)
Hi, thanks for that. Yes, I would have thought I would have known about this before it became chronic. I hope it is a mix up but either way I’m going to find out 🤔
your condition would always have been chronic by the definition of the word.
I know how you feel as I was told when I was admitted to hospital with an arrhythmia and when the young Dr was going through what was wrong he mentioned CKD which I was unaware of but after talking to him I realised it’s the medical term for anything lasting over a year and/or needing medical attention.
I was having regular blood tests at my own Drs to see the affect of the drugs on my kidneys, so they were monitoring it but I’d just never heard it called Chronic before and at first it sounds like a frightening word.
I’d had it 16years before it was 1st called CKD and I’m still at the same stage. I hope you find some answers that allay your fears, not sure a complaint is warranted, just a talk with your Dr for a better explanation. Good luck
I think a formal complaint is OTT. I would first have asked for an appointment to explain diagnosis and what this actually means to you.
Kidney function does deteriorate as we get older. Stage 3 is the first 'flag' that there might be an issue, which is an unfortunate scale as it sounds worse than that actually means. I monitor my mother's health and after routine bloods her record showed Stage 3 kidney disease , but the GP had sent a text saying all results were normal and no action required.
I suspected that this was 'just an age thing' but next time I saw my sister in law, who is an experienced GP, she agreed nothing to worry about and entirely to be expected for Mum's age, admittedly older than you in her 80's. No medication or lifestyle changes recommended or required at this level.
However, your GP might have briefly seen the notes and the marker 'chronic kidney disease stage 3' and taken it out of context without thinking about it. I have no idea how often you see your GP but, for example, my GP has changed 5 times in the last 6 years and only one of them saw me more than once and had any idea about my main condition unless I asked them to look back at my record, let alone any minor things that are sitting there on the file.
Do you have electronic access to your GP records? I do for mine and Mums and all these results can be seen online, there is also a weblink to 'what do these results mean' along with indication of normal ranges etc which is very useful.
Hope that you get to the bottom of this and that it is nothing to worry about any further.
Thanks for responding. If u knew my surgery you would get why there is no way I would get an appointment to discuss this with my Dr. It’s an absolute nightmare. Unfortunately I know the only way to address this was to put in a complaint which I hated doing but it was the only way I knew I would be heard.
I wonder if yourGP meant you can’t have certain drugs because of chronic kidney disease - meaning you are at risk because of your drugs rather than you actually have it. Could you have misheard their actual words or perhaps they phrased it clumsily?
On my Patient Access notes it states stage 3 kidney failure, nobody told me. I do know it’s probably age related but it would have been reassuring to have discussed it. I have not seen a Gp face to face in two years, yet I have serious co morbidities, you can have a phone call in a months time is not the same.
Good morning Calm2. Although we should be told of any health conditions we have. Sadly we get left in the dark too often with mis information or no information at all. You may ask your doctors what your EGFR is. Because until that starts going down under 50 they don't usually worry to much about it. If you want to help yourself look on the NHS website for kidney friendly foods. Hope this helps. Brian
I had this problem.A few years ago I suddenly started getting requests for a second annual blood test and when I asked why I was told for my CKD.I had never been told anything about this !I looked back in my medical records for quite a few years and all blood tests fine.
I sent a message to surgery asking for clarification & asking why I had had no treatment for this.
Apparently it hadn't shown up about 10 - 15 years ago and suddenly it needs to be flagged & tested annually.I contacted the practice manager to get it removed.It took several attempts to get it removed & a formal complaint to the Practice.An apology & a call from a senior doctor and apparently had been a couple of times but probably a change in medication & lifestyle had solved the problem.
That's shocking, doctors are terrible these days give you tests then you never get the results unless you chase it up yourself then you get the receptionist diagnosing you saying the tests are fine how on earth do they really know
Hi,
I have an annual blood test arranged by my doctors surgery. I can then contact the surgery after a week or two to check that my blood test is normal. Do you not have this facility ?
In the past if I have had an abnormal reading one of the doctors have contacted me to discuss the issue and in one case changed my medication.
If the blood test is normal then usually the surgery will not do anything although I always ring up to check, just in case.
You are entitled to obtain a copy of the blood test results from the surgery although it can be difficult to understand some parts or it.
Alternatively in the past I have ordered a specific blood test on line and carried out a home ‘finger prick’ test and the results come through in less than a week in very easy to understand language.
We had the same with heart failure. We only found out that my husband had it after the heart failure service was set up and a nurse knocked on the front door. I fear some consultants treat patients like mushrooms although this does seem to be phasing out.
Absolutely... and teach yourself how to interpret them. I've even gone as far as preparing a spreadsheet for easy record keeping.
However, it needs to be realised that GP practice records are never a complete record. For example I take Vitamin B to keep my homocysteine level in check, but as it is an "over the counter" medication purchased separately by me, it doesn't show on the records,... even though diagnosis was made by the pathologist at the local hospital who wrote letters to my GP.
I've found I have several problems which I've only found out on a hospital discharge list. 🙄 For instance, I've had it said to me that I have mild renal impairment. This worried me because my mother died of renal failure. When I asked my GP about it he said, "Don't worry, everyone gets impairment with age." Very reassuring - not! (For my last blood test the notes were "Monitoring chronic renal impairment." I guess it is chronic now as I am constantly aging. 🤗 I hope your kidney disease is not as bad as it sounds and hope your complaint to the surgery gets you some answers. I've found we really have to advocate for ourselves these days.
The very same thing happened to me I noticed chronic kidney disease stage three on my notes when I was browsing one day. Told my sister who said don’t worry I’ve had that on mine for years.
I did mention it to doctor at an appointment for something else and she said it sounds a lot worse than it is it’s mainly an age thing.
I do agree though we should be told when these things appear on our medical records without our knowledge!! I like you was initially shocked and worried.
I to tally agree that we shoudl be told results of tests but I do understand why they don't have the time. I was recently sent for a chest x ray when I complained of breathlessness for months because "She heard something a bit odd" at the bottom of one lung. I smoked for years so it's obviously left me anxious but I've heard nothing and will not have to wait 90 minutes in a telephone queue to make sure they haven't just missed it. I should be glad they haven't contacted me but I really don't trust "no news is good news" any more. IN any case if that x ray was clear, my breathlessness still needs investigating especially as , after my heart attack I was t old I had two more blockages not yet quite bad enough to stent. Have they got worse? I've been waiting a year for ONE doctor to actually take control of this and follow up but it's someone different every time.
oh dear that is terrible. Yes I get what you mean about one Dr taking charge so to speak. I have had 4 different GPS in two years so not sure how they can truly keep on top of our issues?
When it comes to my health issues, my anxiety disorder causes me to want to know every little detail about what is going on. It is a strange thought, but I feel that knowing gives me back a little power in my life over an unknown, scary outcome. I know (cognitively) that this is likely caused by the anxiety, but it feels very real. Anyway, I would be very upset if I felt that my doctor had not told me about something major that I had. Very upset 😠. So, I can relate to your feelings of fright, confusion, and anger.
I had blood tests and a urine analysis on Valentine’s Day 2023. The results indicated that I had kidney damage/early disease. I felt shock, confusion, sadness, and despair. Now, I will admit that I don’t know a whole lot about kidney disease. I read about the stages, etc., and I talked with my doctor. She and I usually communicate via email, but for these results, she telephoned me—so, I knew that it was important. She believes that it has to do with the HCTZ (diuretic) that I take. So, we have been adjusting my medications since February, and I go back for more blood and urine tests at the end of July. I guess that I will be seeing how it goes.
I think that you had to decide for you whether making a formal complaint was what you needed to do. I do feel that your doctor, or some medical authority should have informed you about something as important as possible kidney disease.
I also feel that the information that other members wrote in response to your post was helpful. I will reread their responses and try to factor that information into my own situation as well.
I wish you the best in sorting out all of this. It is a shock to have something major hit us unexpectedly. I felt that same way when I had my HA in 2022. I also felt that way on Valentine’s Day. You also likely felt shock, and maybe even panic. Be gentle with yourself, take a little time, and then face what needs to be your next steps. ❤️
Please try not to worry about the complaint. Recently, my son applied to a job within the company for which he works. He works as a pole setter and lineman for a major communications/internet company. My son has worked several years for this company, and knows his job inside out. The new job requires someone who understands his side of the work, but who works more directly with clients in their homes. It pays more and is an advancement.
The company in the interviewing process decided to not interview anyone who already worked for them. My son filed a grievance with the company and was given an interview. They did not have to hire him—only give him a chance to discuss his qualifications.
I just found out on my birthday—June 1st—that they told him that he was the best applicant that they had interviewed, and they offered him the job.
My point is that we all only want an equal chance of success—an opportunity. If we know about our health needs, then we can figure out next steps. Sometimes we have to push for that opportunity.
I had that so called diagnosis a few years ago when I had my annual review. This was done by a pharmacist at GP surgery and not the GP. I was furious and demanded to see GP as this was first I had heard of it and had put in formal complaint about the review. GP said it was nothing to worry about and that annual blood tests were sufficient to monitor it. I recently got hold of my medical records and there is no mention of it anywhere!
I had to go to hospital some weeks ago and the dr there said I should get my GP to check kidneys. Well, I’ve been to the drs twice to get blood tests to be asked ‘where’s your form’! I hadn’t been given one, so no blood tests!! I’ve had totally useless medical attention from my surgery recently, 3 trips and very long waits for only to be sent home having had nothing carried out. I’ve got to tackle this issue.
I had exactly same experience. Received a letter out of the blue saying I had Chronic kidney disease which “may be age related”. A nasty surprise but I think because GPS have been told to inform all patients with readings of a certain level as a new policy. My readings have been at the same level for about 3 years and no one mentioned it before!
GP was very unhelpful when I criticised their method of informing patients. I have since changed GP!
As sorry as I am others have gone through what I currently am I’m also pleased I’m not the only one. Dreadful situation and very worrying. Hope your new GP is better 😊
I had a very similar situation to you a few years ago. I had HA and by pass surgery in 2015 at the age of 61. About 18 months - 2 years after op I needed to seek medical help regarding a different issue and saw a different GP to my normal one and very calmly, in a matter of fact manner he said of course you know you have stage 3 kidney disease. I was shocked to say the least. But over next few weeks I researched and read as much information as I could find and realised it is not uncommon for heart patients to have kidney impairment as well, as plaque does not just block heart arteries, it tends to block other arteries too and kidneys seem to be another major organ it effects. Also some heart meds can cause this minor impairment. Better you know now though and you can keep an eye on it. But I completely understand your reaction and hope you get a satisfactory outcome to your complaint.
Thank you so much. It does seem I am not in the minority as I thought. Was feeling quite guilty I had made a complaint but after reading through most posts I actually feel it was the right thing to do .
Totally agree. I feel not enough people actually make formal complaints. We should say when we feel we are not being treated properly and may even have contributed to the awful situation a lot of surgeries are in at the moment.
After having recent blood tests this appeared on my NHS app and the same diagnosis suddenly appears CKD stage 3.
I managed to get a face to face appointment with my GP as I was shocked into seeing this on my medical record. He explained this is a fairly new diagnosis of combined medical conditions we suffer in older age, blood pressure, diabetes typ2, etc. He also stated half the population in this country are walking around with this disease unknown. I explained trying to get holiday insurance would be difficult with this statement on my medical records and very costly. He just shrugged his shoulders and said “insurance companies will be losing out”. So I’m stuck with it.
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