I'm 50 and just been diagnosed with stage 3 CKD, which I know is not uncommon, but it came as a big shock to me, and I need answers!

My GFR is around 50, so I know it's not too bad yet, but I wonder why I have this, as I am in great health otherwise. I've never smoked or drank alcohol, I'm not overweight, I don't have high B.P. or any other health conditions except mild hypothyroidism, for which I take 50 levothyroxine daily. I am quite active and fit. I wonder how common it is for someone like me to have CKD. My doctor just says 'don't worry about it' but I can't help worrying, and imagining it just getting worse and worse, since I can see no good reason why I have it in the first place. There seems to be nothing further I can do about it, as my lifestyle is already as healthy as I can make it. Any thoughts welcome.

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  • Hi

    I was diagnosed with CKD with a GFR of 51 in 2006. This goes up slightly every now and then but there has been no change at all. As you say the GPs do not seem to worry about this and I have often asked for an explanation why and how I was diagnosed with this but there is never no answers, just to say that CKD is not uncommon. I also asked if I could have a special diet and she explained there is no need to. I really do not think there is not enough info with GPs or leaflets. As I say I was diagnosed in 2006 and nothing has changed. Recently I was asked to have a blood test and not to have any protein the day before the test. When I asked the GP about this she gave no answers. It must have been OK because I have not heard anything since. I am 65 and take levothyroxine 125 daily, blood pressure tablets and also statins. I have taken these for many years. I do hope this helps.

    Muvva

  • Hi

    Sorry to hear this but Im afraid that you can be perfectly fit and healthy and still get CKD.

    I have IGA Nephropathy and noone knows for sure what causes it , even my renal consultant and you cannot cure it either, only treat the symptoms (in my case kidney failure and since transplanted). Has your doctor referred you to a renal consultant as they may be at least able to tell you what has caused this in you?

  • I also was diagnosed with CKD with a GFR of 19 and yes it is a shock but I am on steroids now for a year and my GFR is now 32 the hospital seem pleased about it if it can get up to 40 i will be ok

    you can look on the internet for information there is quite a lot of it hope this helps

    kathy

  • When I was first diagnoised 15 years ago with a GFR of 30 and managed to reduce further reduction in my GFR through diet. I knew this helped as my aunt also suffered renal failure and went on dialysis, So by ensuring I always boiled potatoes before using them for any other cooking methods, reduced the amount of tomatoes and certain fruits like grafefruit and oranges helped . The other things to watch would be nuts . You can ask at your renal centre to speak to a dietician , Reduce potassium based foods but maintain a balanced diet is the general rule and don't use salt.

  • Stage 3 CKD at the age of 50 can be partly due to wear and tear. Having a healthy, balanced diet with plenty of fruit and vegetables is best, At stage 3 there is no need to make any drastic dietary changes unless your doctor tells you to. Cut down on salt if you feel this is necessary and take exercise if you can. I have attached a link to the NKF info on CKD and you can call the Helpline if you want to discuss this in more detail on 0845 601 02 09 and we have a free information pack I can send to you. Pauline

    kidney.org.uk/Medical-Info/...

  • Thank you everyone for your replies - you've been very helpful.

    Muvva, it's comforting that your GFR has not really changed over several years - maybe I will be the same. It seems we can't know whether specific damage occurred at some time, or if it's just a progressive age-related thing that's worse in some people. I think GPs definitely need to give more information and advice on first diagnosis.

    tfc5, my doctor doesn't think it's serious enough to refer me to a consultant yet - I suppose I have to wait and see if there's further deterioration. I'm sorry to hear about your condition, and hope you're doing well now.

    Kathy - I'm glad to read you've seen a good improvement in your GFR - you must be doing the right things. Hope it continues.

    pluto94 - thanks for the diet tips - this is something I have to look into further. What would be helpful is a list of 'good' and 'bad' foods for CKD sufferers, if anyone knows where to find this?

    Pauline - thank you for your advice and information. The NKFHelpline sounds like a great resource and I will look at the information.

  • I sorry to hear of your diagnosis I am 44 and have CKD 3B due to IGAN I am under a renal consultant at my local hospital but have been told not to worry too much because they are keeping an eye! so I don't and just get on with it!. Your doing the right things not smoking or drinking also cut down on salt which is what I do (I drink J2O's when I go out now/eating a lot of salad/oily fish as well!!). NKFed and the NHS direct are a good source of information for people with kidney disease there are lots of video's and literature about CKD, I found out that I could remain at CKD3 for years without getting much worse. The best thing for you to do is have regular blood pressure check ups at your GP or even by your own monitor and check every few weeks,don't worry if it gets high/just recheck and if still high get GP nurse to check. Also get the annual jab for flu at your GP's if your CKD3 then you don't have to pay. The good thing about CKD3 is that there is a lot of support out there and its a condition that can be managed.

  • Thanks so much for your thoughtful reply Olemog - that's really helpful and comforting. I'm hoping I will be able to keep stable and not go downhill - it's early days for me, so the next few blood checks should tell me if I'm stable or not. It's good in a way that the condition encourages me to have a healthy lifestyle, and I will keep an eye on blood pressure too. I had not heard of 'IGAN', so have done some Googling - this sounds like what I may have, as I believe it was a severe glandular infection several years ago that triggered my hypothyroidism, and could easily have started other auto-immune conditions. Can you tell me more about IGAN?

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