I am new to the forum and just made aware of the fact that I am at CKD stage 3 based on a test taken a year ago. Count at 53. Apart from being in shock with the news, I am a little disturbed by the fact that it took over a year for the doctor to get in touch with me and ask to be retested. Especially when the count had dropped to 53 from a previous count of 79 from a test taken 6 months prior. Whilst waiting for my nezt blood test I wish to get a 2nd opinion. Any thoughts or advice? Who would be the best Kidney specialist in the UK?
Thank you.
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VP39
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Hi there, in my experience, you're lucky to be told. I'd been hovering around stage 3 for several years before I was told (I found out retrospectively that it's probably been at least 5 years). And I do know a lot of people on this forum and elsewhere that have found out by accident in the UK. Doctors really don't seem to think it's an issue and you're unlikely to get referred to a nephrologist at your levels (they don't normally get involved until it's serious). I certainly haven't been referred despite there being no obvious cause of my CKD.
The good news is that you can stay at stage 3 for years and years and may not ever progress any further. Very few people with CKD get to the dialysis stage, which is why I believe doctors treat the condition at this stage with very little concern. However you can do things to help preserve your kidney function, mainly with diet. Everyone's different but the general advice is: avoid processed food (which contain phosphates), fizzy drinks, salt, too much red meat, too much dairy and alcohol in moderation. Also giving up smoking (if you do) and regular exercise. And try not to worry
Do you know the cause of your CKD? GFR can vary under different conditions (e.g. It drops temporarily if you take certain antibiotics, are dehydrated etc).
Hi @Julesboz Thank you for your reply and you are absolutely correct. Reading through the forum it seems many others are in the same situation and have found out, out of the Blue. Sorry to hear you found out much later than I did but good to know it has not progressed. I think it is appalling that they don’t take interest till it is serious. Surely prevention is better than cure as it costs money for all parties involved apart from the agony and trauma it causes to the patients.
I am trying my best not to dwell on this point and take action to find out how I can prevent it getting worse and find out exact reasons as to why I have CKD. I have only been told it could be simply the ageing process or dehydration, but my concern is there is a dramatic drop between 4 months of test results. Was only told I was Vit D deficient at the time and CKD was not even mentioned till last week which is one year on!! I will be taking a blood test tomorrow so hopefully should know in a couple of weeks what the latest is. In the mean time I have requested a referral through a private policy I have so hoping I can see a Nephrologist soon. Fingers crossed and here’s hoping the new test results are a bit more positive. 😕
Thank you for the diet tips. 🙏🏼 I don’t smoke and have dairy intolerances so these are off the list to avoid anyway but I will have to make more of an effort on salt, meat and alchohol intake. None of these are taken in excess but will just have to be more vigilant. I hear sugar needs to be avoided too to a great extent. Do you agree?
Hi there, I sympathise with your view, I completely agree that prevention is better than cure, but the NHS doesn't operate with that philosophy. It's more a case of, you're ok now, we'll wait to see if you get really bad then we'll deal with it. Not good I'm afraid.
Anyway, I'm not sure about how sugar affects the kidneys but too much sugar is a bad thing anyway so it wouldn't hurt to reduce intake. I have lots of food intolerances (dairy, soya, gluten, alcohol) and I believe eating food I was intolerant of for years may have contributed to my CKD although I haven't discussed this with my doctors as they shrugged their shoulders and told me it's was just one of those things (I'm only 52 and don't have high blood pressure, diabetes, take any drugs that cause CKD, exercise regularly and am a low normal weight. I just don't have any of the CKD risk factors). Food definitely has an impact on your kidneys, so if you can get to see a renal dietician through your private policy that might be a good idea.
Hey! I agree that the NHS philosophy is not great on this front sadly.
I am intolerant to gluten and wheat as well so it could be the cause of my CKD however doctors don’t seem to connect or want to investigate what the causes are. So same boat I guess. I am 39 and don’t have or take drugs for any/all of the cases you have mentioned so very similar to your situation. I will look into a renal dietician thanks.
Thank you for your time and contact. It helps to know I am not the only one feeling this way. Good luck to you too and take care.
VP39, that's very interesting that we have similar food intolerances. You might find this research paper interesting: nature.com/articles/pr20141...
I wonder how many other people's kidneys may be suffering due to food intolerances and the medical profession seem to have no interest or knowledge of this. Like I said, it's my own theory and I'm not medically trained, so I could be completely wrong but my GFR dropped dramatically before I realised I was dairy intolerant, and then raised when I gave it up, and again did the same with gluten.
Unfortunately I'm guessing any research on this topic would be unlikely or limited as the drug companies are only interested in doing research when there's money to be made and telling people to give up certain foods isn't going to make money.
I should also say there's another member on this forum (zazzle) who has been told that his CKD was caused by food intolerances, so it's not a completely out there theory.
Hi Julesboz, I was thinking the same thing. It could be connected. Interesting that your GFR levels increased at the change of diet. That is saying something. Agree with everything you say. I have always had a theory that the medical institution are more interested in making money more than the actual well being of the patients.....to an extent may I add and in certain types of illnesses more than others. We will not know the truth in our lifetime I guess.
Same boat here, I only found out I had CKD when I saw it written on an NHS blood test form! No doctor has ever directly told me I have CKD, only that my blood creatinine levels are high and even then not for over a year after the first tests.
I understand it's worrying when you've experienced a drop in GFR and in my experience this is when they pay a bit more attention. I was referred to a nephrologist last year when my GFR suddenly dropped by 15-20 points, plus my urine sample showed low protein. However my GFR has since recovered and is now stable and I'm expecting to be discharged at my next appointment. GFR can fluctuate a lot for various reasons (hydration, infection, exercise), mine has changed by as much as 20 points but is now a reasonable 57 on average. I think as long as things are stable over a certain period of time (6/12 months) and GFR is at a reasonable level (anywhere in stage 3) doctors will hold off on any further investigation. It's frustrating when you don't know the cause however - like you guys I have none of the risk factors (high blood pressure, diabetes etc) and I'm 44. I try not to worry about it too much and intend to keep exercising and eating healthily as that's all I can do!
Hi Soozmooch. Thanks for sharing and it certainly seems to be the norm for doctors to keep it low profile and it is the unknown that scares me so the next couple of weeks will tell. I am starting to make changes immediately although not drastic as some changes had occurred naturally due to intolerances. As you all advise I will maintain a healthy diet and weight regardless in order to ensure stability in the GFR counts. Many thanks and well wishes to you too.
I myself have only just been diagnosed at stage 3a ckd but I know I've had this longer. I don't understand either wh you they don't tell you so at least you can make changes to avoid further damage. I know exactly how you feel. It's like being bereaved and mourning the loss of your health and the anxiety you feel is beyond words. All the best to you
Hi, I can relate to how you feel. I was told in 2003 I had PKD by accident when I went to ER do something else. They had done a CT and said, by the way, did you know you have PKD? I said no. I had been to urologists before for kidney stones and had CT and MRI and no one ever told me. I asked what could be done for it, they said nothing so I assumed it wasn't a big deal until 2015 when I went to ER for diverticulitis. Found out my GFR was 10. So I'm at final stage now but have made many changes as far as food, exercise and supplements. My doctor tells me there are people all over walking around with kidney disease that aren't aware they have it. I believe it, I didn't have many symptoms except fatigue and occasional back pain. It's a real shame there's not more awareness of this dusease. My disease is hereditary and I have a huge family. Even after I posted it on Facebook that I had it, I doubt anyone has been tested for it. You have a chance to make changes now for the better. Take it, you'll be glad you did. Prayers for you. God can do anything. My doctor is amazed I've maintained my GFR for 3 years with it being so low. I know it's because Gods been there, keeping me safe.
I am so sorry to hear how you found out and how low your GFR is but your faith is strong and that is good.
Yes we do have to do something about it and to create more awareness and I will do this once I get my new results regardless of what it is. Thank you for your well wishes and I wish you the same. Stay strong.
Sorry to hear it took such a long time for you to be informed of your CKD diagnosis. I see other people in the UK have had the same experience. I am in the UK also, but was told about my diagnosis as soon as the blood test results came out which showed I had low kidney function. The practice nurse told me and gave me advice and reassurance at the time, as well as a print-out of information on the disease. I don't know if things are different in Northern Ireland, where I live, to the rest of the UK but we are not given any numbers, just whether they've gone up or down.
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