Hello! Firstly, I'm not looking for anyone to diagnose me, I've just reached a dead end with my doctor and I need more information/other perspectives if possible. Apologies that this is wordy. Also, any appointment with a doctor referred to has been over the phone due to covid.
I am male, 31 yrs old. I exercise five times a week, I don't drink alcohol and my diet although not perfect, is definitely pretty clean. Haven't been to the doctor since I was a child. Was using protein powder, which I'm now pretty convinced is the devil but that's a separate rant.
So at the start of July this year I went to see my doctor about pain in my testicles as well as frothy urine. Two separate urinalysis came back negative for any signs of protein, also negative on stds. A blood test indicated that my GFR was 73 which considering my age my doctor thought was worth investigating. I then started to develop very consistent IBS or lower abdomen pain, the testicle pain by this point became very infrequent and seemingly random (originally was brought on after drinking coffee which I cut out). After complaining about the stomach pains as well as consistent orange/green stool, two separate FIT tests came back negative for blood. A ultrasound kidney scan also revealed nothing to indicate there were any physical problems.
By this point it was time for another blood test which showed my gfr was up to 83. My doctor over these 3 months or so has had no answers, he hasn't mentioned a single thing that could possibly be the cause because the tests aren't giving him much to go off - understandable. As I was feeling pretty good when he mentioned the gfr at 83 we both agreed to see how things go, he said I could get another blood test in a year, but I haggled him down to 6 months considering I still had symptoms that were unexplained.
After a few weeks of feeling good, the stomach/lower abdomen pains returned after almost every meal. This continued for a month at which point I contacted my doctor again, now early November. He was unhelpful to be polite. I explained the stomach pains, stool still orange/green and that my urine had been frothy since July and that surely there had to be another test I could do. For the third time in our history he told me about how diet affects stool, how apple juice can make urine cloudy etc. I explained that I have had the same diet for several years and that these symptoms are months old and that I do not drink apple juice, I only drink water, lots of it, and have been for almost 6 months now. This was met with silence. He agreed to let me have another blood test which I just found out today has shown my gfr is down to 70. Doctor doesn't think anything is worthy of concern as this is still an acceptable result, however I'm in some degree of pain/discomfort almost every day to which he has no answers, nor any willingness to investigate further.
I guess I just want to know if anyone has a similar story, or if anyone experienced similar symptoms because of ckd? When people talk about symptoms related to ckd the gfr is usually much lower which is why I'm so lost, but my kidney function is the only thing providing any clues. Can you have a damaged kidney without it leading to ckd? My doctor at this point is completely uninterested and speaks as if I'm wasting his time so I'm looking into other options.
Any input appreciated/stories, even if it's just to drag my doctor
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smallson_1
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I'm not sure what type of insurance if any, you have. But, if you are dissatisfied with your physician I would seriously consider finding a different one who will be more responsive to your concerns.
You have a lot of issues that I would recommend you contact a urologist and even a gastroenterologist and let the specialists do the appropriate labs and diagnostic testing to find out what the root causes of your health issues are.
It would take more than one blood test to determine if you do in fact have CKD. The GFR you mentioned at 83 is Stage 2, if in fact that bears up to scrutiny with additional labs. Each number is but a snapshot of the time they were taken. Also, they will look at your serum creatinine, albumin, and other numbers to give you a definitive answer.
If you haven't already, I'd stop taking the protein powder and wait until you get knowledgeable medical advice. I've included a link below that will give you some basic information on CKD and what you can do now to keep you from serious issues until you are provided with more sound medical advice. Best of luck, and come back when you have additional questions.
Thanks for the info. I'm in the UK so no insurance, just my local GP. I'm trying to get another appointment with him this week, if he's still not interested in helping I'll request another. I stopped using protein powder as soon as symptoms started. The ultra sound scan was of the kidneys as well as urinary tract and nothing turned up, but the testicle pain is only brought on by coffee weirdly enough, decaf as well. Not that I drink it anymore but I do miss it.
He seems hesitant to diagnose anything at all because according to him, they can't test for what your normal function is, he says my kidney function could have always been in this range. I obviously know that this isn't the case otherwise I wouldn't be feeling like this but he's only interested in test results.
I appreciate the input and the link, hopefully I'll get some answers
Hi I havent had the same health issues but my doctor didn't tell me I had ckd for 2 years so I didn't have a clue .I am at stage 3a and when I.ask for advice etc they are so unhelpful. I am.having to go private to.see a dietician ..so I do know how annoying it can be with these doctors ..can you see another doctor within the practice or complain to the manager there ....jill.
I'm going to try one last time with him, I'll request another gp if he's not interested. It seems apparent that this is going to be an ongoing issue and I can't afford private long term so I don't want to burn any bridges, but it's hard to not get angry with him at this point. My practice also don't call you to tell you the results of any tests unless there's anything wrong according to the test, as if that makes the pain go away. I feel like I'm cold calling them at this point just to get results.
If it is ckd and I need to diet accordingly, I'll do that (for the most part already am), but if everything I eat can potentially give stomach cramps I'm at a loss.
Thanks for the input and best of luck with the dietician
A lot of symptoms going on there, I would not assume they are related to CKD. Sounds like LUTS or IBS might be your issue (ever had your prostate checked/colonoscopy?). Creatinine eGFR is a joke. The fact that you exercise alone means you need to ignore it because creatinine is a product of muscle metabolism. The more muscle you have, and the more you use those muscles, the more creatinine your body will make. People who do not exercise produce less creatinine (but are not healthier). Since you've never had protein in your urine, that means you are not even stage 1/2 CKD by the ridiculous creatinine standard.
Thanks Matt. I've not had a prostate exam but it's on my list of things to bring up. The eGFR has always seemed odd, as they ask you not to excersise 3 days before the test which implies that anyone who excersises has a lot of creatinine - doesn't seem that accurate as a guage of health if that's the case. My range of symptoms has me doubting ckd but zero input from my doctor has me swinging in the dark a bit. I'm speaking to someone new today so we'll see how that goes.
Not trying to diganose, but think you might want to have your liver levels checked. I would also have your gall bladder checked out. Your symptoms are more in line with the issues that happen when the gallbladder has stones. The color and changes in you poop also suggest that and pain after every meal is common for gallbladder. Just something else to check off to make sure you are heading in the right direction. I would also find another doctor.
Thanks Bassetmommer. My liver function has come back normal but I'm getting tested for celiacs and getting a psa test as well to do with the prostate so we'll see what happens. If nothing turns up I'll mention the gall bladder, although the pain isn't as sudden and as intense as what I'm reading about gallbladder stones, it also lasts for days/weeks off and on. Definitely will look into a gastroenterologist consultation.
Yes. Ive had the pain in the right side abdomen under rib cage. It moves sometimes to the back. They diagnosed me with gall bladder stones. So maybe a ultrasound of the whole abdominal region couldnt hurt.
Hi there. I understand your frustration completely. I’ve had all kinds of intense aches and pains in various places including almost constant stomach pain. I have IGA Nephropathy, An autoimmune based kidney disease. Many of the people in my Facebook group, and it is quite a large group with this condition, have unexplained pains which the doctors blow off. Others in our group have no issues at all. I also have friends with lupus and fibromyalgia which are other autoimmune conditions who complain of similar stomach and nerve pains. My point being is that autoimmune conditions can cause all sorts of unexplained reactions. Not saying that is your issue, but throwing out my experience. IGAN can lay dormant for 20 years then suddenly show up. Your doctor may be on to something with the foods. I was able to eat many foods then suddenly I wasn’t able to. I’ve become very intolerant to many foods and environmental elements. My GFR fluctuates be teen 60 and 80.
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