Chronic Kidney Disease

[Patrick66]

Hi there,

Well...several years ago I was diagnosed with diabetes...despite having no symptoms..and as I was due my HbA1c test again I had a number of tests done at the same time.

On checking the results I found an elevated Urea level and the wording (next to a test for Urolytes????) that said "Suggests diagnosis of CKD"

I had to look up CKD!.

I'm 54 and my level is 58. I gather that's just in the Level 3A range but really have no idea what happens next. My doctor, no doubt aware of my medical history and numerous drugs (I'm the reason the NHS has no money!) has remarked 'Satisfactory- no action required' and its quite clear to me that unless I had actually read my test results and done some more digging I wouldn't have known anything about CKD and lived in blissful ignorance because nobody would have told me anything!.

I don't smoke, never have, don't drink, never have, exercise every day, don't eat a great deal of salt but am very stressed being Autistic and having ADHD and Fibromyalgia..and I know stress can affect the body in strange ways. How/why its 58, I can't quite explain.

Does anyone have any advice about CKD?. Anyone have it and can pass on some tips or lifestyle info?..I find the websites quite medical in nature and a bit 'not what I'm looking for' but any thoughts and advice would be most welcome.

 

[JoKalsbeek]

Hi there,

Well...several years ago I was diagnosed with diabetes...despite having no symptoms..and as I was due my HbA1c test again I had a number of tests done at the same time.

On checking the results I found an elevated Urea level and the wording (next to a test for Urolytes????) that said "Suggests diagnosis of CKD"

I had to look up CKD!.

I'm 54 and my level is 58. I gather that's just in the Level 3A range but really have no idea what happens next. My doctor, no doubt aware of my medical history and numerous drugs (I'm the reason the NHS has no money!) has remarked 'Satisfactory- no action required' and its quite clear to me that unless I had actually read my test results and done some more digging I wouldn't have known anything about CKD and lived in blissful ignorance because nobody would have told me anything!.

I don't smoke, never have, don't drink, never have, exercise every day, don't eat a great deal of salt but am very stressed being Autistic and having ADHD and Fibromyalgia..and I know stress can affect the body in strange ways. How/why its 58, I can't quite explain.

Does anyone have any advice about CKD?. Anyone have it and can pass on some tips or lifestyle info?..I find the websites quite medical in nature and a bit 'not what I'm looking for' but any thoughts and advice would be most welcome.

All I know is that with CKD you might want to re-think the metformin, or look for an alternative. Part of me wants to say "strange that your doc didn't pick that up", but then, doctors rarely know anything about medication, it's not quite their area as there's just too much to keep up with. Maybe talk to the pharmacy and ask them for advice?

 

[Patrick66]

All I know is that with CKD you might want to re-think the metformin, or look for an alternative. Part of me wants to say "strange that your doc didn't pick that up", but then, doctors rarely know anything about medication, it's not quite their area as there's just too much to keep up with. Maybe talk to the pharmacy and ask them for advice?

My pharmacy know nothing about everything. I have sought their 'advice' before and they've refused to offer it so I think I will steer clear. Still waiting for my HbA1c result...but if not had that soon (and the test was a week ago with all other results in) I will contact my doctor about that and other things.

 

[Grant_Vicat]

Normally at Stage 4 they advise you to moderate your protein and phosphate levels - I'm sure that delayed treatment by at least 13 years in my case, but then I was further up the scale than you at that stage. Maybe look at the list of lower phosphate foods in this site: https://www.ouh.nhs.uk/patient-guide/leaflets/files/56112Pphosphate.pdf . This would be challenging on a LCHF diet I would think, since berries and seed based food is out, including coffee and nuts and chocolate of any sort. if you look at this link, you are only just 3A, so nearer Mild: https://nephcure.org/livingwithkidn.../#:~:text=Stage 2 Mild CKD (GFR,15-29 mL/min). I found making casseroles with whatever meat I fancied, but on a smaller scale than usual, mixed in with veg of choice and herbs made life more appetising. To sin occasionally is not disasterous, but over a long time, the less stress you put on them will keep the wolf from the door. Put it this way, I had CKD from 1973 -2013, so it's not always a nightmare. Furthermore, I was not given any advice in this particular area until 2000. I was your age when I had my kidney transplant! I think medical sophistication is advancing much more rapidly which is very much to your advantage. Clearly you take your health very seriously which can only help. I must stress that I was only put on low phosphate and restricted protein when I was entering Stage 4. I totally understand your wish to prevent further deterioration and I wish you complete success.

 

[LindiePops]

Hi there,

Well...several years ago I was diagnosed with diabetes...despite having no symptoms..and as I was due my HbA1c test again I had a number of tests done at the same time.

On checking the results I found an elevated Urea level and the wording (next to a test for Urolytes????) that said "Suggests diagnosis of CKD"

I had to look up CKD!.

I'm 54 and my level is 58. I gather that's just in the Level 3A range but really have no idea what happens next. My doctor, no doubt aware of my medical history and numerous drugs (I'm the reason the NHS has no money!) has remarked 'Satisfactory- no action required' and its quite clear to me that unless I had actually read my test results and done some more digging I wouldn't have known anything about CKD and lived in blissful ignorance because nobody would have told me anything!.

I don't smoke, never have, don't drink, never have, exercise every day, don't eat a great deal of salt but am very stressed being Autistic and having ADHD and Fibromyalgia..and I know stress can affect the body in strange ways. How/why its 58, I can't quite explain.

Does anyone have any advice about CKD?. Anyone have it and can pass on some tips or lifestyle info?..I find the websites quite medical in nature and a bit 'not what I'm looking for' but any thoughts and advice would be most welcome.

Hi Patrick66, I am generally in the same level as you for CKD and occasionally dip into a worse level. I would say just try to ensure that you keep yourself well hydrated. My eFGR dipped to 39 at one point. I drank loads of water over a few days and a pint of water before my next blood test. This pushed my eFGR up to 50 (lower than yours) and my Doctor was happy with that. Must admit that I don't get very thirsty so keeping hydrated can be a problem for me. Of course, I should know better considering all the meds I'm on Take care

 

[Patrick66]

Hi Patrick66, I am generally in the same level as you for CKD and occasionally dip into a worse level. I would say just try to ensure that you keep yourself well hydrated. My eFGR dipped to 39 at one point. I drank loads of water over a few days and a pint of water before my next blood test. This pushed my eFGR up to 50 (lower than yours) and my Doctor was happy with that. Must admit that I don't get very thirsty so keeping hydrated can be a problem for me. Of course, I should know better considering all the meds I'm on Take care

Thank you for that. Juts spoken to my doctor who has reviewed Kidney function since 2015 and its been in the 60-69 range with fluctuations over that period. He said not to worry. I will of course.

 

[Patrick66]

Normally at Stage 4 they advise you to moderate your protein and phosphate levels - I'm sure that delayed treatment by at least 13 years in my case, but then I was further up the scale than you at that stage. Maybe look at the list of lower phosphate foods in this site: https://www.ouh.nhs.uk/patient-guide/leaflets/files/56112Pphosphate.pdf . This would be challenging on a LCHF diet I would think, since berries and seed based food is out, including coffee and nuts and chocolate of any sort. if you look at this link, you are only just 3A, so nearer Mild: https://nephcure.org/livingwithkidneydisease/what-is-kidney-disease-2/#:~:text=Stage 2 Mild CKD (GFR,15-29 mL/min). I found making casseroles with whatever meat I fancied, but on a smaller scale than usual, mixed in with veg of choice and herbs made life more appetising. To sin occasionally is not disasterous, but over a long time, the less stress you put on them will keep the wolf from the door. Put it this way, I had CKD from 1973 -2013, so it's not always a nightmare. Furthermore, I was not given any advice in this particular area until 2000. I was your age when I had my kidney transplant! I think medical sophistication is advancing much more rapidly which is very much to your advantage. Clearly you take your health very seriously which can only help. I must stress that I was only put on low phosphate and restricted protein when I was entering Stage 4. I totally understand your wish to prevent further deterioration and I wish you complete success.

Thank you for such a helpful reply. Much appreciated.