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Early CKD Support
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Please give me advice :(

Back in September my GFR was 60 I just did another test same thing 60 I’m 24 year old female. My dad just passed away from kidney disease. I get frequent utis my doctor says 60 is fine I’m so confused that doesn’t explain the pain in my kidneys on and off swelling in my feet, cramps in my legs sometimes foamy pee protein n blood in my urine (says dipstick) is confused help :(

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Sorry for your loss. I suggest for you to have urine work up in the lab..check your creatinine and BUN so you can get a more precise picture of the current situation. Probably get a second opinion as well.

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Please see my multiple comments in “kidney disease” to your post there.

healthunlocked.com/nkf-ckd/...

I think you are scared, and understandably so. But please dont be.

You posted your GFR at “>60”. This means GREATER THAN 60. You can (and are likely) much higher. It’s a limitation of the test.

>60 is not to be worried about because that is the limit of sensitivity of the test - and often is. Itis NOT “60”. Good luck!

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Please let me add to this, since people here are posting so much contradiction. If you are inclined to read scientific journal articles - I have attached the following:

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

These are just some of the published "concerns" of medical researchers as to whether the whole GFR determination and CKD staging systems are correct AT ALL. I can list more if you'd like.

We always have to look at medical or scientific data with a grain of salt - as many times we are simply inaccurate or even totally wrong. I read somewhere that there have been over 50 DIFFERENT equations for estimating GFR over the last 15 years. That alone speaks volumes. Clearly many people in this field disagree with each other.

I urge people to please proceed slowly when jumping to conclusions about anything that is not totally obvious.

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Hi Ashkat,

I am so sorry to hear of your dad's passing; it's not easy.

After what you have been through with dad, it's understandable that you are feeling frightened and disillusioned; your feelings are perfectly normal.

I am not a doctor, but I care. Have you spoken to your urologist about your more recent symptoms if you are experiencing frequent UTI's? My thoughts, if for nothing more than peace of mind, see a nephrologist and allow them to evaluate you. Your GFR is not terrible and your liver tests, excellent .

A nephrologist will run blood and urine tests to try to diagnose the problem. It will also give you a reading as to how well your kidneys are functioning.

In the meantime, keep an eye on your diet. Lots of fruits such as blueberries, strawberries, pineapple and apples. Fresh or fresh frozen vegetables, no red meat and watch your sodium intake both in snacks and no bacon, cold cuts, etc. Eating healthy is key.

If checking the dipstick is giving you stress and worry; stop doing it and leave the evaluating to the professionals.

You have been through alot, so don't let this smolder, get it checked..okay?

We are here if you need to talk, so reach out...and please let us know what the doctors tell you.

Think positive!

Bet:)

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In addition to your egfr of 60 you also mentioned you have proteinuria. This needs to be quantified. Ask your healthcare provider for a albumin creatinine ratio test. This would give further answers. As you are 24. I would certainly be concerned with a egfr of 60 regardless. If you are not satisfied with your current provider. Seek a second opinion. It's Ur health!

You also mentioned your dad passed away from kidney disease. This is also a red flag. You most definitely need further investigation.

Sorry for you loss.

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Askat sorry gor your loss,wish I had some information for you but am confuse as well..Good luck!

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I’m not a doctor but I think you’ll do just fine. Get the uti sorted And try to exercise and eat healthy. This condition of yours could be temporary so please don’t assume things already and if there is really something wrong with your kidneys then I like to say that there is a lot of hope for the kidney patients in the future.. People are working on implantable kidneys which might be available in 2-3 years. Don’t let the negative thoughts get the best out of you. Eat healthy , sleep well, exercise regularly and be happy :)

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Your 2/3 years is very optimistic, have you checked the current research?

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Before you pursue any health care issues, as long as you are not in an emergency situation, if you have children or plan please look into good private life insurance. Once whatever diagnosis is in. It will be harder for you ti buy life insurance policy at a decent rate. Please keep in mind everything might be fine as well.

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Hi, if I were you I would search and go see a kidney specialist. From what I know all of your symptoms are of kidneys in distress. Doctors don’t seem to have knowledge as they should on this. According to the kidney foundation, millions have kidney disease and most don’t know it. From medications, poor habits, it is a crisis

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You ask for advice. The best advice is consult your doctor(s). About your dad. You say he passed from kidney disease. Was he on dialysis? Was it actual renal failure or cardio or some other disease that caused the death? Second, all our parents will pass of something. This does NOT mean the children will have the same cause of death. For example, both my grandparents (my fathers parents) died of cancer. My father just passed at age 92, never any cancer. So do not automatically assume you will have kidney problems. You do not say what caused your father's problems. CKD can be brought on by highly treatable illness such as high blood pressure.

As regards yourself. It sounds like you are testing your own urine with a dipstick? And you are getting results sometimes that you have protein, or blood in urine??? This absolutely should be brought to the attention of your doctor. They will likely do a lab test of your urine (not a dipstick which can be highly inaccurate for many reasons, such as for something simple as an expired dip stick). Perhaps a 24 hour collection. You say the protein presents itself occasionally. This is an indication that it is not necessarily the kidney. You say your gfr is 60. I would imagine what you are really seeing is that your gfr is being reported as "over or equal to 60". That is how gfr is reported in the United States. It may actually be for example 80. But your report just says "over or equal to" 60. CLEARLY you doctor shows no concern. And it sounds that you are basing your own self diagnosis upon at home urine testing, misunderstanding as to what you gfr actually is, and your fathers passing. You still have doubts that your doctor knows what he/she is telling you, then simply go get another opinion. I am willing to bet you are 100% healthy.

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Her post in “Kidney Disease” clarified all this and her GFR was determined to be “>60.” Thats greater than 60, not 60. Some labs calculate GFR this way and cannot be accurate enough in the high ranges to do anything but say >60. So, she could be 60, 70, 80, 90, 100, whatever.

healthunlocked.com/nkf-ckd/...

So she could likely be 100% healthy as you say. As you day, she needs to go back to the Dr.

Why so many people want to scare the crap out of this woman and not even notice the “>60”? - which makes all the difference in the world, is beyond me. Don’t assume that everyone who posts here is in a dire medical condition.

The problem with the “oversimplification “ of CKD these days is that it makes a lot of people think that they have CKD, but in reality they may not. Much has been published in the literature that sheds serious doubt as to whether this oversimplification is correct - or anywhere close to correct.

The trick to good health is not to stick to questionable guidelines like glue - and instead use your own thought and reason to determine what you need to be concerned with.

If not, you will end up like potential cardiovascular patients of the last 20 years. There were millions of formulas trying to simplify things - until they realized that the wrong people died from CVD using these formulas. And yes, a lot of that math and categorization has since been dropped!

Then again, I am responding to you - and you understand all of what I am saying.

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I agree with you 100%. I am shocked at some replies. One for example recommending life insurance. such misconception about being classified CKD and assuming it is a death sentence for all. Without any consideration as to even the stage the person is in. Yes being for example stage 4 or obviously 5 is not great. But being labelled CKD stage 1, 2, or 3 is NOT a death sentence. Not even close in most cases. Notice I say most. Certainly someone can be called stage 3 and eventually die from kidney failure (or cvd because of poor kidneys), but there are so many dependencies. Age. Other health factors. Other diseases. Is the kidney really getting any worse or is it holding and only declining normally (people forget that every single person, even those without so called CKD, have a decline in kidney function each year as we age). My case is a good example. I had a kidney removed because of cancer. The day before the operation I was gfr normal. The next day I was called stage 3b! When a kidney is removed the other tries, and in many cases, does actually increase in size and handle the existing work load. Mine did not. This is not uncommon. But since I have one kidney trying to do the work of two, my creatinine is NOT cleared from the body enough to have a "normal" gfr. This is common for a person with one kidney. Does this mean my existing kidney is failing, and diseased? Does this mean I actually have CKD? Well according to our medical societies we must just look up creatinine level and therefore say it is failing! It is a crazy system, that vastly needs change. There are more and more studies that are against this CKD classification system. My own doctors do NOT support it. They say you want to know a kidney function then look at the Bun/Creatinine ratio.

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Yes, I feel like writing a specific topic politely telling everyone how the published literature in this field seriously questions the "kidney societies" dogma. It really gets me angry because this kind of negative talk - assuming that someone has ESRD (!) if their numbers are slightly out of whack - seriously upsets posters, like the OP here. I'm surprised no one told her to write her will!!!

Often labs use the MDRD equation for calculating GFR. The NIDDK specifically says (when giving the equation) that it SHOULD NOT be used if you are trying to calculate a GFR over 60. That's why anything over 60 calculated by this method says ">60". Here is the calculator (pathetic at best, but a standard nevertheless):

niddk.nih.gov/health-inform...

My results often are calculated by this method. Only recently have labs taken on other calculations for GFR. It should be a BASIC thought to realize that anything so constantly contradicted is pure and utter BS - beyond a point. Elsewhere I posted 3 articles that criticized the whole concept of eGFR and CKD staging.

healthunlocked.com/api/redi...

healthunlocked.com/api/redi...

healthunlocked.com/api/redi...

You have to look at the whole picture, and even that doesn't always make sense. FOr instance I have had a high serum creatinine (1.3 +/- .1) for the last 15 years. It just stays the SAME. My oncologist (very well known Stanford research oncologist) first brought it up and when I later told him that serum creatinine had been high for that many years and that urine microalbumin was UNDETECTABLE by a hospital lab, he shrugged his shoulders and said to move on!

He knows that the state of art of kidney medicine is not yet capable of doing much if there is not a serious problem to deal with. This is why most nephrologists will not see you until you are at least "Stage 4".

To the OP - if you haven't been scared away forever ...... please do NOT WORRY about this. You are fine and may need medical attention for something totally unrelated to CKD. Its easy to get scared given your family situation. I certainly would!

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I am the one who suggested Life insurance. Did you finish reading my post where it said keep in mind nothing might be wrong? And if she is planning on having children? Who said getting life insurance was a death sentence? Since when was recommending getting life insurance a bad thing at any age or with any possible diagnosis? Are you not watching current affairs as to what is going on with even normal health insurance? And yes when you have certain diagnosis or prognosis it makes it harder to qualify for life insurance or any insurance for that matter. I was suggesting it because she is young, wasn't sure what was going on and all. Not sure what was the purpose in your comment against mine?

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Simple. In my opinion, and obviously not yours (which is fine), I think it inappropriate to say to someone who was just told of a disease, is scared, confused, turns to a website for advice and comfort, that of all the things going on in their heart and mind, they should consider life insurance. You mention do I see what is going on in the world regarding health insurance? Of course. The cost is high. Life insurance is not health insurance. It has always been the case that if you have been diagnosed with a condition, that to buy life insurance is not just difficult but very expensive. This makes common sense. How could a company survive if everyone with a life threatening condition could buy a million dollar policy one year before probable death. To me her immediate need is to be sure she has normal health coverage (which she more than likely does if she lives in the United States), and gets the comfort and advice she seeks from this website with encouragement that all will likely be well. That she is more than likely fine. That CKD is NOT, I repeat, NOT a death sentence. She is fragile at this time and needs support. Imagine you were being told by your doctor "I'm sorry, you have CKD. You better seek life insurance". so you and I disagree. No problem as far as I'm concerned. some like chocolate, some like vanilla.

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No problem, I agree to disagree. But my post/advice came way after several people gave advice and comfort regarding what she is going through. I am not that crass as I myself have been diagnosed with PKD. But I wish someone would have told me before all the hoopla to buff up with any insurance I could have (i do have a policy). I don't consider PKD life threatening or death sentence, let alone CKD. So with her being young and not knowing what was going on (specially that her dad was atfected by CKD) and after everyone else gave her health advice. I felt it was a good time to chime that in. And I might be wrong in your eyes or even hers. But sooner or later if she can she will be able to think and gather info on the subject and pursue it if she wishes. Again, my post was comforting in it's own way.

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Get a second opinion right away! I did and I got different advise. It sounds that you should be worried.

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I am not doing my own dipstick those were my results from the hospital 30 protein and large blood.

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Hello, I’m of similar ages to you being 23 but at the other end of the scale with CKD. I’m gfr is currently 12, awaiting a transplant.

Sorry to hear about your dad, but like the other comments say doesn’t mean you have same thing or for same reason. But maybe worth saying to doctor.

Have been to see a kidney specialist ? Might worth to ask to be referred, just to get a picture of what’s going on.

With the frequent utis, I also had this at the begin. I was put on a low dose daily antibiotics for a few months. Which jure in had barely any and afterwards again had much less utis. So perhaps ask, that could help. But sadly antibiotics aren’t always the answer, as you can become intolerant if taken too much. Something to bare in mind.

But honestly a gfr of 60 is really good. Perhaps not the best for being 24. But it is for sure something you can look after and maintain at the level. Through good diet, being active, having good blood pressure control - if that’s yet an issue.

Hope this helps.

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Doesnt the doctors only give you a score of 60? At my docs is always says 60> normal. I was told it's extremely difficult to get a correct measurement of GFR through bloods.

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As far as I’ve been told that GFR through testing your blood is fairly accurate. That there is a few elements to be considered - personally I’ve been told that my gfr is a good guideline to go on. As myself being only 5.1, small and light in my weight that gfr via bloods is slight overcompensating as the test works under being an average sized human and where being smaller in size, my gfr will be 1/2/3 points under what states on the results. Don’t know is this something you could consider for yourself perhaps ?

Stages for CKD via gfr:

GFR 90+ normal stage, 1

GFR 60-89 mildly reduced,stage 2

GFR 45-59 moderately reduced function, stage 3a

GFR 30-44 moderately reduced, stage 3b

GFR 15-29 severely reduced function, stage 4

GFR 15 or less end stage kidney failure, stage 5

Those are the guidelines I’ve been given. But please know, I’m no medical professional, it’s just a condition I’ve had for my whole 23years of my life and I’ve been through every stage now, apart from receiving transplant.

GFR of 60 is great trust me, classed as normal/average however you’d like to word it. There are things you can do to stop CKD from developing - if that what you have.

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Creatinine is the most accurate number to diagnose which stage you are at. My kidney is newly transplanted and gfr is good but the nephrologists at my clinic only really use creatinine, potassium, phosphate, calcium, sodium etc as measurements of how the kidney is working (plus the all important anti rejection drug level without which it would reject or poison me)

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Hi I'm was simular, when I was first diagnosed with pkd 4 years ago I was having alot of pain to the point where in had taken a lot of time off work. I had a mri scans and load blood work done and my kidneys work fine in fact they are in the normal range for a healthy adult but my kidneys are 17cm and I have some cysts at 5cm. I suppose it's the luck of the draw. I had 3 mri scans done yearly to check for growth and there was no significant change year to year. I was convinced I must of been really sick and kidney failure happening when really it was the cysts pushing against nerves causing pain. One cyst actually popped the scar tissue shown on the mri. One of the main things i do differently is make sure I get plenty fluids atleast 4l water a day usually more. All the best

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hi Ashkat...with all due respect to your doctor i would ask to see a specialist for a second opinion..its within your rights to do so...and maybe back it up with a private medical...better looked at early than later...all the best c

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