I have only just been diagnosed with CKD... - Early CKD Support

Early CKD Support

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I have only just been diagnosed with CKD and am seeking some reliable dietary advice, please.

Calley profile image
17 Replies

Feeling unwell, I went to the GP about 5 months ago, in the light of my symptoms a thyroid test was carried out, I was told I was subclinical hypothyroid. Tests also revealed iron and vitamin D deficiency.

I have scoliosis (a slightly curved spine with osteoarthritis now set in on the curve). For the past 5 years I have been taking Naproxen for my back. Although my recent symptoms were put down to an under active thyroid, I have had mild hypertension for a few years now but below normal medication levels which was thought to be related to Naproxen use.

Fortunately my GP decided to dig a bit deeper and found that my kidney function is impaired (reading 59) there was also a slight trace of protein in my urine. Naproxen has been stopped forthwith, and I think in 3 months time I will be retested for protein levels.

I don't smoke, drink a few glasses a wine a week, have been a vegetarian since my mid 20s (I am 61). Fruit, vegetables and grains and pulses, plus dairy foods are my staple diet. I eat a lot of food that is rich in potassium - help, I think I'm about to starve !

Thanks.

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Calley profile image
Calley
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17 Replies
phillen profile image
phillen

your diet sounds very good i don't think you could do much to it really unless blood tests have proven your phosphates or potassium is high dairy has high phosphate levels my hubbie has high phosphates & we are also vegetarian cheddar is very high we have a list from the dieticiens of lower phosphate cheese! & also food to avoid ie chocolate ,processed food, nuts & anything with small bones ie roe & pilchards potassium is mainly in the skin of things like tomatoes so peeling things or tinned toms are ok ask your GP to check your levels first as you maybe ok also my hubbies consultant was always a believer in keeping his blood pressure low below 120/80 as high blood pressure will damage the kidneys jsut don't panic yet you may not need to do anything for a long time yet

sandra

joanneflagg profile image
joanneflagg in reply to phillen

Hello....I am interested in the cheeses that have lower phosphate. I am new to all this and just not clear about the dietary issues. I am at stage 3....are there things your husband does to keep his blood pressure low, that you might share...thanks so much! Jo-Anne

phillen profile image
phillen in reply to joanneflagg

my husband has bp pills & as on dialysis now it fluctuates a lot as you get a build up of fluid in between sessions! but at stage 3 gentle exercise cut out salt & generally have a good healthy diet unless you have been told otherwise we have a list of cheeses being vegetarian i use cheese a lot hard cheeses in general like cheddar are high in phosphate lowest are in order best to worst spreadable cheese,soft white full fat, cream cheese,fromage frais plain,cottage cheese, goats milk soft cheese, camembert, brie, white stilton, mozzarella feta blue stilton danish blue, soya, roquefort, wensleydale red windsor, double gloucester, gouda edam leicester & cheddar bleow this is pretty bad & to be avoided ie gruyere, emmental, parmesan, processed cheese & smoked

i do still use a little cheddar but the best bet is the lowest ones & i use the white stilton in place as he is allowed twice as much of that than cheddar cheddar is a matchbox size in a week hope this helps!

joanneflagg profile image
joanneflagg in reply to phillen

Phillen...Good Morning! Thanks so much for your information. I will get back with you but have to get swimming and errands. I so appreciate you taking the time to do this. Hope your day is a good one and that your husband is doing well...

panda22 profile image
panda22

Do your tablets have an anti-inflamatry in them Last year my gfr dropped to 29 and I was told to stop my diclofenac immediately. My gfr then went up to 42. My consultant says that if my gfr remains in the 40's he is happy to discharge me.

Calley profile image
Calley

Hello Phillen and Panda22, thank you for your replies.

I am assuming that my potassium level is ok at the moment as all that was checked, and potassium was not mentioned, it is just that I have now read in my quest for more information that potassium is hard for the kidneys to process, and my diet is high in potassium, but the rest of our organs need good levels of potassium so I am wondering how to get the balance right. Thank you very much for the suggestion to remove the skin of high potassium fruits and root vegetables, if I find that I need to, I hadn't thought of that.

Yes Naproxen is an NSAID, just like Diclofenic. When I first started suffering with arthritis in my spine I was put on Diclofenic but it made me very nauseous, so I was prescribed Naproxen, I have been on Naproxen 75 mg daily, for the past five years.

I am glad that I found this forum and really appreciate the replies to my question, and the posts and blogs that I have been reading on here. I hope in time when this new territory is no longer unfamiliar to me, I will be able to reply to others who are recently diagnosed and floundering around for guidance as to what in means in real terms, as opposed to medical terms, which I think patients always know more about than doctors.

michel49 profile image
michel49 in reply to Calley

It is awfully hard to tailor a diet to your own individual condition - which is what it comes down to at the end of the day. I have been offered dietary help by the dietician at the Nephrology department of Dorchester hospital - but, to be honest, it was not as helpful as I hoped.......

Potassium can be something you need to watch - but you can only tell from the detailed results of blood tests; I found that I could ask my GP for a print out of my blood test results., frankly, I have found that I am best off trying to adjust my diet by monitoring my symptoms (the itching, jerky legs at night - even the appearance and smell of my urine). I can let you have further details of reading that I have found useful - but, at the end of the day, you need to work out what is best for you, you can do all the reading you want, but there is much contradictory information on the internet.

I am stage 4 CKD , still trying to stave of dialysis, and each day I am still learning and trying to refine my intake - after 6 months of trial and error. I really hope you succeed in stabilising your condition - and I empathise with you - with me, it looks as if it was the NSAIDs that caused the kidney failure. Now, I have the pain (as well as the kidney problem), but no pain controlling drugs... It isn't easy...

Calley profile image
Calley

Hello Michel49, thank you for your reply. I will see how it goes for a few months and may come back to you, if that's ok, for some further reading if I am getting it wrong.

I am sorry to hear of your problems. I was not unaware that Naproxen could cause kidney issues, we had a little dog who was on pain relief for arthritis, but I believed the risk to be much smaller than I have now discovered it actually is.

In view of the limited symptoms in the early stages, I do believe that people using NSAIDs for any length of time should be routinely tested for kidney damage. A timely blood test would be very cost effective for the NHS, and would give peace of mind to those who need pain relief.

I don't have anything in place for my osteoarthritis now either, and I am not sure if I will be able to continue with my little part time job. I intend to try, but I am not holding out a lot of hope. Still I count myself fortunate in that I am already retired and working part time for a bit of extra spending money, rather than for my keep. I feel very sorry for those who have had their pain relief taken away for health reasons, but are still expected by the DSS to continue to earn a living.

elfanton profile image
elfanton

Have you considered cannabis for arthritis pain? Studies have been done that indicate that smoked or vaporized cannabis (i don't know about using the pills if you have kidney disease) is effective for different kinds of pain. Maybe 'google' "cannabis for arthritis pain" and check out some of the studies for yourself. I too have just discovered that i have kidney disease - unlike you it's like pulling teeth to get any information out of my doctor and i'm not always up to it; but i knew i had issues and told him how i was feeling long ago - he just decided to check into it three years later when some tests kept coming up with the same results. On my own i stopped using NSAIDs but an emergency doc prescribed diclofenac ointment which helped a bit at first but had some 'interesting' side effects and upon doing some research i stopped that too - absorption is just as bad as ingestion. So I too am left without too many options when it comes to arthritis pain management.

nonie2147 profile image
nonie2147 in reply to elfanton

HIGHLY AGREE. NSAIDS AND MEDS FOR ACID REFLUX CAUSE KIDNEY DISEASE. I HAVE ARTHRITIS AND PAIN IN LOWER BACK-FRACTURES FROM OSTEOPOROSIS. HAD CKD2 FOR YEARS- UNKNOWN TO ME- TILL I DEVELOPED KIDNEY STONES-NO SYMPTOMS, NO PASSING-SO WAS BLOCKING KIDNEY FUNCTION. FOUND STONE-HUGE, BY ACCIDENT IN XRAY FOR OTHER ISSUES. PRAY. AM TRUSTING GOD FOR ALL.

Calley profile image
Calley

Hello Elfanton, thank you for your reply. I will read up on it.

At the moment I am feeling nervous of trying anything.

I see you have arthritis and have been on NSAIDS too, and now have kidney disease. My sympathies - being left without too many options is a good way of putting it.

I do think that there ought to be regular testing of anyone who has been on NSAIDs for more than a couple of years. I was warned that they can lead to heart disease, but as my husband has heart disease, I am not unfamiliar with the symptoms, so I was fairly confident that between us we would recognise the symptoms of heart disease early, and I was prepared to take that risk.

However at no time was I told about Analgesic Nephropathy. I know know that it is well documented and has its own name, so I would have expected to have been forewarned and tested as a precaution at least once in five years, particularly as, like most sufferers, I obviously passed through Stage 2 with no symptoms at all, so a simple test would have made all the difference.

I would like to see a move in this direction by GPs, to spare others. Arthritis in its various forms is so common that I dread to think how many people are unknowingly following in our footsteps.

manon profile image
manon

The Edinburgh Royal Infirmary has an excellent website with loads of information, both dietary and othersise. It is edren.co.uk. Hope it helps.

Manon

Calley profile image
Calley

Hello Manon

Thank you for your advice. The link you provided didn't work, but I found the site anyway, it is edren.org, in case anyone else is searching for it.

As you say, it is an excellent website.

Kind regards

mercevo2 profile image
mercevo2

Hi I am stage 3b with GFR of around 34.....and a creatinine level of around 260. and have bad arthritis and still take 1000mg Naproxen every day, its not advised by my Doctor, but beats being in pain every day, if you want a drug, insist on it, the creatinine is just if not more important, I only stopped taking Naproxin when my creatinine went dangerously high to nearly 400, and that was only for 3 days and was as a result of passing a stone....at a level of 59 thats quite good and nothing I would worry at, but get your creatinine tested.

Calley profile image
Calley in reply to mercevo2

Hi mercevo2, thank you for your info that you are still on Naproxen, it is useful to know. I am still not taking it, and do feel better in myself and I have discovered that a tens machine helps my arthritis hugely, with no kidney risk. I know they don't work for everyone but it is worth trying one out if you haven't already. I wish you well.

Mgt8 profile image
Mgt8

Re pain relief for kidney patents....

Hi, I am at stage 4 PKD & have been pescribed tramadol for pain relief. I had gout for several weeks and as I couldnt take anything to actually cure it due to damaging my kidneys further, was offered this. It takes the edge off the pain and was better than nothing.

It could be worth asking your doctor about.

nonie2147 profile image
nonie2147

KEEP THE DAIRY FOODS AND POTASSIUM LOW. ALL SITES I HAVE CHECKED ADVISE THIS- KEEP PHOSPHATES LOW. GO ON LINE- LOOK FOR LISTS OF FOODS CONTAINING POTASSIUM AND PHOSPHATES. DRINK A GALLON WATER PER DAY- PREFERABLY BOTTLED- WATCH THOSE-SOME COME ONLY FROM FILTERED TAP WATER. CAN GET LISTS OF BEST WATER FOR YOU IN YOUR AREA. PROTEIN, POTASSIUM, PHOSPHATES- ALL ARE NOT GOOD. ALSO MEDS FOR ACID REFLUX HAVE BEEN FOUND TO CAUSE CKD-CURRENTLY LAWSUIT PENDING FOR OVER THE COUNTER MEDS- PRILOSEC, PREVACID, NEXIUM. DO YOUR RESEARCH- TRUST GOD- OUR ONLY ANSWER TO ALL.

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