After having consistent blood tests for 12 months I have been diagnosed with CKD. In trying to educate myself about this disease I have come to question if I really do have it. Based on blood tests I do but....I have no reason for getting it. Apart from low gfr and high creatinine, my bloods are fine. No high BP, no diabetes, no heart problems and to my knowledge no family history. Nothing unremarkable at all. The only changes I have noticed are that my urine is smelly but I don’t wee much.
I am tired but always have been as I have hypersomnia. I have lost a lot of weight intentionally. I don’t have any appetite but it doesn’t worry me to go without food. I am itchy but have eczema. I have had a iv ct scan which showed nothing. I was overweight but I’m not now. I don’t have fluid retention. I don’t smoke. My issue is that if I don’t have CKD (if there is another reason for my gfr) I don’t want to make adjustments such as diet, lifestyle etc.
I know this forum is not for diagnosis or test results but I would like to know if there’s anyone out there with the same doubts.
Creatinine high, egfr 53, GGT high, c reactive protein is high. Urinary creatinine has dropped from 19.6 to 10.9 in three weeks. Sodium, urea, t protein, iron and saturation are raising. Potassium, AST, ALT, MCV, platelets are lowering. Transferrin is low. These are at the high end of normal range - bicarbonate, urate, calcium, HCT.
Feedback would be great.
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Winter1963
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The labs is the definitive way to diagnose CKD. So if your GFR is dropping and your creatinine is increasing, and you have had three or more labs indicating this, then you should face the diagonosis.
The good news is with a GFR of 53, you can do lots to maintain that. But the answer is truly diet. So its up to you.
There does not always have to be a reason, it can just be that your kidneys are not working well. But do keep looking for an indicator why. Medications? Supplements? Over exercise?
Some things you said made me go hmmmm? You do not urinate much. Do you drink a lot of water or/and other fluids? It does not take much to be dehdrated and that will really play havoc on your kidneys. You say it smells? Did you tell your doctor that? You may be harboring an infection.
The best thing you can do is have your doctor go over the labs with you and explain the results. You are right, we cannot diagnose. But your indicators say you have Stage 3 CKD. Your GFR indicated your kindeys are working at only 53%. That's CKD.
Become your own advocate and get educated on CKD. We are here to answer questions for you.
Thanks for the advice. I guess I was just hoping that there could have been another reason for the blood results given all the other high/low levels. I like your honesty. I have researched CKD extensively and lots of things didn’t apply to me which is why I am confused about the whole thing.
Hi,
The two major causes of CKD are Diabetes and Hypertension. There are other causes as well, like rare diseases and hereditary ones. PKD, FSGS, and Alport Syndrome are a few I can think of. You could ask your physician to consider running tests for those. Regarding hereditary illnesses, it may not have been in your family prior to your arrival, but someone has to be first and if you are worried speak to your doctor.
If you would like to learn more about CKD you can go to davita.com and sign up for a virtual Kidney Smart class. It's about 90 minutes long and it's free. You'll be getting a lot of information and resources to help you along.
A kidney-friendly meal plan is the best way to slow the progression of CKD. If you don't have a nephrologist, find one. You should also find a Renal Dietitian. When you meet with the RD bring hard copies of all of your previous lab results, at least for the previous year. Together you and the RD can develop a meal plan that will work for you. Another thing to work on is an exercise regimen that will work for you every day, rain or shine.
Being proactive is the best and most important for your mental health as you move along this journey.
You found a great sight with a lot of folks who will provide support and information.
Thanks for the advice. I have asked my GP about how I ended up with CKD and he said there was no reason....he has no intentions of doing any tests. Had it not been for my Psych I wouldn’t have had the CT. Your response to this will be to get another GP I’m sure but I live 3 1/2 hours from any specialists and I work full time. I suffer from severe chronic depression and I believe that a lot of the time the doctors can’t be bothered with me thinking I’m having another “episode”. I took an overdose 5 years ago and I’m wondering now whether this has done some damage. I have researched CKD extensively and came across davita.com last night and will revisit tonight....I feel like I live on the computer! I don’t really know what to do....it’s different here in Australia. Other countries seem to have better diagnostic facilities. I have changed GP’s (but in the same practice) he’s very casual so I am not sure how to get the help I seem to need. I also have liver “issues” which they have automatically put down to drinking...how embarrassing 😣. I do like a stubby every now and again but I am by no means an alcoholic. I know I have to get a back bone but I really feel like a pest.
you Had quite s few labs run but I wondered when reading your posts if you tend to be dehydrated. That would lower you GFR and so forth. However, as I said, it seems somewhat unlikely that you would be more or Jess consistently dehydrated.
I agree with Bassemommer. There is a lot you can do with diet to stabilize your renal function. With that in mind it might be good to request an appointment with a renal dietician. Take your renal panel data with you for the appointment. As you meet with the dietician, ask about the potential benefits of a plant based diet, even if you still east some meat, I.e., boneless, skinless chicken breasts and fish. Fresh fruits and vegetables. Low sodium and low fat. No processed foods. It’s just a really healthy diet that is individualized based on your specific lab results. It can stabilize your renal function.
I like you have no underlying issues to give me CKD. Have you gone to a nephrologist and discuss with them? Like Bassetmommer states .... have you changed your diet to kidney friendly one? It does make a huge difference. On DaVita.com there are loads of recipes that renal dietians have put together.
I also have found more sites where you can purchase no or low salt foods. If you're interested in them let me know. Blessings and Good Luck
Thanks. I had a look at davita last night. I will have trouble with it but hopefully a dietitian can help me out. I’m only stage 3 so not too concerned and because a lot of what I was reading doesn’t apply to me I was convinced I didn’t have CKD and there was another simpler reason for my bloods but after researching the results I might be in a bit of trouble with kidneys AND liver. I’m beginning to wish I wasn’t so nosy! Did you ever find out why you have it? We don’t have specialist doctors here in Hicksville and the drs here think I’m overreacting if I suggest I see anyone?
The nephrologist & urologist have not been able to determine why as of yet but they have done a radio-active contrast scan and have determine my left kidney is totally nonfunctional.
As for the Dr stating you are overacting, it is time to look for a new one and take matters & your health into your own hands. I had to do the same in other circumstances. DO NOT sit idle over this, it's your life! It is better to make the changes that are necessary to prolong this disease. Call your insurance company for names of nephrologists in your area .... you may have to drive some but your life demands on it.
Hey there winter1963! Let me first tell you that you should never feel like a pest when showing an interest in your own health. If your doctor is making you feel guilty for wanting to take action in slowing the progression of CKD because you’re asking her / him for referrals to the right consultants (renal dieticians, nephrologists), who may help you manage this disease better, then perhaps you need to start shopping around for a different doctor who will allow you to take your health seriously.
Also, you should know that anti-inflammatory medications such as, Advil, Motrin, Aleve and Aspirin, are evil 👿 to the kidneys, and you should avoid them to the very best of your ability. You mentioned that you also have some liver issues going on as well, so I believe that acetaminophen (Tylenol) would most likely not be great for you either in terms of pain relief, as these are processed by the liver. You should speak to your doctor about these issues. Perhaps some other form of pain relief might be available.
Also, if you are one who works out vigorously, especially with weights, you’ll want to try to cut back a little on that, as heavy weight-lifting can have a big part in raising creatinine levels. High amounts of protein in the diet such as red meat, pork, and protein powders and bars that tend to be higher in creatine, can also contribute to high creatinine.
The basic diet plan is to consume low potassium, and low-phosphorus veggies; keep your intake of food on the low-sodium side; consume an amount of protein per meal, that is no bigger than a deck of cards; keep yourself well-hydrated (ask your doctor what a safe amount of water would be for you to drink daily, as this can differ with everyone); and some daily light exercise (walking or even jogging), to keep your heart rate pumping well.
This is not an easy lifestyle change. I’ll never say that it is, as I’ve struggled with this also (and still do at times), but it is a necessary change to make in order to slow the progression of this disease. There isn’t a cure unfortunately, so doing our best to slow it down is really all we can do for ourselves at this point.
Always know that we are here to support you and each other. This is an awesome site full of caring and wise people, where we all share a common bond. I will keep you in my thoughts and prayers. Please let us know how you come along. I look forward to reading more of your posts! All my best to you! Bye for now! 😊👍🙏✌️
Hi again there Winter1963! It’s my belief that it’s never too soon to try and stop a building from falling completely down. I think that, even for those in stage one CKD, it’s really never to early to act on it, because the sooner we begin the remedy, the longer time we have to enjoy an easier existence in better health. In my case, I didn’t even know I had CKD until my body began filling up like a water balloon, starting from my feet and rising up and up. This was back in 2009. Needless to mention, that was such a horrible time for me. I would even say probably the most horrible time ever in my life (I’m 51). I had such difficulty breathing then too. Of course, I came to learn at that time also, that I had congestive heart failure, as well as advanced sleep apnea. Doctors believed that all of that was brought on by my (poorly managed, I must say) diabetes and high blood pressure. I’ve learned so much since then about how to manage my health better, and now, I don’t take anything lightly anymore where my health is concerned. And I always advise others to do the same.
If there is one important thing that I’ve learned about the human body since then, it’s that it will give us only so much grace. If we treat our bodies right, it will do right by us in return. When I know of a problem that’s just beginning (like fluid retention and such), I jump all over it to the best of my ability, to try to knock it down before it knocks me down.
So, my advice to you would be yes, I would ask the doctor for referrals to both a nephrologist and a renal dietician. These are the experts that will be able to steer you in the right direction by using your most current blood results. By working together with them, and following their advice, you can enjoy better health for a longer period of time. And if your doctor does not agree to help you with this, open the phone book (or maybe these days, go online - I’m so old! Lol! 😃) and search for another doctor. I know it can be frustrating, and can feel defeating, but doctors that care about doing right by their patients still exist, and you can find one. Believe me.
I’m wishing you all my best! Keep posting to let us know how you come along. I look forward to hearing from you. Bye for now! 😊👍🙏✌️
great advice. I would check that all my medications are kidney friendly , take into account your challeges. Do some testing after 3-6 months , important indicator is the 24 hour urine sample. Diet is not easy because you have to watch quantities. Quaker oats is good for cholesterol and also very filling. Drinking plenty of water is vital and also filling. BP medication , even the smallest dose helps the kidneys as well. You are starting to take care of your kidneys at a time where diet , exercise and plenty of water can make a big difference - good luck
Just got diagnosed last week with stage 3 CKD but also don't have any other problems in my blood work except for what you have mentioned. I am also going to a second specialist to fully understand my situation because the first doctor just didn't seem like he had time for me or my questions/concerns. Right now I live out of country and the lab norms are quite different from my home country. I contacted a friend that is a Dr. in my home country and sent all of my test results. My friend is concerned that there is something else underlying that the Dr. didn't want to test for. She advised me to immediately seek another Dr. I know it's a bit difficult because I also live in a rural area and work full time.
Oh we’re nearly twins!! I have the same concern now regarding underlying conditions. I didn’t want to mention it before because I feel like a hypochondriac but I have pain which I believe I shouldn’t have until much later. Back, right side of abdomen, so so tired and a bit short of breath. I am not due for an appointment with the dr until November.
Hey Winter1963! Sometimes, those of us with weakened kidney function can develop a low iron issue as well. If your iron levels are low, that can cause you to feel very tired and lethargic. In fact, it may also affect your breathing. If you are not retaining any extra fluid, ask your doctor about your iron or hemoglobin levels, as this may be the cause for your difficulty breathing. Ask her / him if perhaps some iron supplements may be needed. Remember, if you do require iron supplements, they work best if you take them with a beverage that contains vitamin C (orange, cranberry or tomato juices), as this will help your body absorb the iron better. I had that issue myself awhile back, and the supplements alone taken with just water were not effectively having an impact on my iron levels. But once I began taking them with cranberry juice, they worked! Hope you find this helpful.
Take good care of yourself! All my best! Bye for now! 😊👍✌️🙏
Get your cystatin-c levels tested, that will give you a better measure of your egfr. Creatinine is a product of muscle metabolism, if you exercise more than average it will give you a false low egfr.
According to my creatinine I have CKD, but my cycstatin-c egfr is always 90 or higher, so based on cystatin-c I do not have CKD.
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Advice for someone with possible CKD
Veg diet-based improvements in eGFR may not mean much of significance. 
does this need further investigation ? 
