Bright yellow urine, Flank pain, Flakes in urine

[Polaris_Ab]

Hello,

I have not been diagnosed with kidney disease, and actually do not think that what I have is primarily kidney disease - although the kidneys seem to be involved. I am posting my story here (or, some of it - since it is quite long and involved) in case anyone may have some advice for me, or if this post may one day help someone else who is in a situation similar to mine.

I have been ill for a few years, and trying to achieve a diagnosis since the spring of 2019. I joined HealthUnlocked in 2021 after Googling something like "bright yellow urine" + "abdominal pain" and stumbling upon the posts of another HealthUnlocked member whose symptoms were almost identical to mine. (This member seems to no longer be posting - I hope they are okay.) I haven't written any of my own posts since I am typically a very private person who doesn't do much social media, and I do not even know to which health community I may belong.

This started with nightly flu-like muscle aches and frequent night sweats. Next, feelings of light-headedness, mild nosebleeds, and heart palpitations (sudden slightly fast and very strong heartbeats) out of nowhere. Then came stool changes, feet swelling, early satiety, feeling of upper abdominal fullness and burping even after only drinking water.

In the fall of 2018, I got food poisoning, and, a couple of weeks later, developed a rather dull upper-left sided abdominal pain which was worse with movement. This pain disappeared from winter through until spring 2019, when it returned along with menstrual changes (very light bleeding with an unusually short cycle). In the summer of 2019, I developed additional, sharper abdominal pains in the upper central and right side of my abdomen, which worsened with both movement and eating. I started to see occasional small blood clots in my stools. (Colonoscopy, upper endoscopy, MR Enterography all normal except for a "distended" (inflamed?) cecum seen on the MRI.)

In the fall of 2019, I rapidly lost muscle mass and dropped about 10% of my body weight (which has since stabilized). This muscle loss occurred around the same time I developed flank pain (pain in the kidney areas of the back), bright yellow urine, and urine full of white flakes which look like torn tissue pieces. The kidney areas are often even sore to touch. Sometimes the flakes look like they have bloody bits on them. The yellow urine is very odd for me, since I drink a lot of water, and am certainly not dehydrated. I have always had clear urine (clear like water) because of how much water I drink, and so the intensity of the yellow colour now in contrast to what it was is striking. I have also had no dietary changes or changes to medications ( I take none) or vitamins (so no extra B-vitamins that could theoretically cause yellow urine).

I have had urine tests which only occasionally report some "mixed flora" and so not considered an infection. All other kidney function tests are reported as normal, except for specific gravity: LOW and urine creatinine: LOW (serum creatinine is on the low end of normal).

I finally got to see a urologist last year who performed a bladder cystoscopy which was found to be normal. So, it seems as though the flakey debris is coming from the kidneys. I found a series of photos of urine abnormalities that was posted online by someone saying that they were/are a nephrologist (and I am inclined to believe that this is true). The flakes in my urine look very much like one of the photos depicting mucus in the urine: "mucosuria."

I've also noticed an increase in both blood pressure (mostly diastolic) and heart rate - sometimes much worse than others, but generally still okay and so no need for medication. Also, when I move from sitting to standing, the blood pressure tends to increase and at the same time I get a great feeling of painful pressure in my head. I used to have the opposite issue: blood pressure drop upon standing. Something has changed, and I wonder if this could be - in part - due to some phenomenon happening within the kidneys?

As I mentioned above, I believe that this is not solely a kidney issue, but the kidneys may be involved in whatever it is that is going on.

Additional symptoms that have come since fall 2019: Water retention after eating even moderately salty foods. Pain and feeling of pressure from within the calves and lower arms. Very cold feeling all over and especially feet, calves, hands, and lower arms, face, and scalp. Sores on scalp. Hair loss (head and body hair - lost about 3/4). Tinnitus (now constant). Vibrations (fasciculations?) started in my calves, and gradually spread to include the upper legs, arms, and abdomen - they can't be seen, only felt (and I'm wondering if these could be manifestations of either vasospasms or turbulent blood flow). Pale skin all over. Increased purple colour of hands and feet (which I have always had), but now spreading up the calves and lower arms (and this is worse with lower temperature). More prominent blood vessels in lower arms and thighs. Some petechia and cherry angiomas (thighs, and front and sides abdomen). Possible blood in urine when I have my period (toilet water is unusually homogeneously pink). Occasional bad cystic acne with simultaneous very dry skin (lasting months). Recurrent rash on forehead. Episode of pustular rashes on back and chest (two different rashes at the same time, one left scars down the centre of my chest). Dry skin and reduced sweating. Vertical striations on fingernails and big toenails. Symmetric patches of small bumps on the skin on both upper, outer thighs (keratosis pilaris? amyloidosis? mucinosis?). Occasional lung pain and "squawk" when breathing in. Crackles on lungs (heard by stethoscope). Occasional raw feeling inside of my mouth (but no ulcers), and skin on fingertips wrinkling with only moderate contact with water. Rare but unusual gum sensitivity and bleeding. Episodic watery and burning eyes, other times blurry vision, and, rarely, flickering vision (which is really scary). A bit more, but this post is already too long, and I feel badly about this.

Basic lab tests normal *except* for: aPTT: HIGH (due to factor XII deficiency - unknown if this is congenital or acquired), ferritin: normal but at the very bottom of the "normal" range, complement C3: LOW, complement C4: LOW, serum urea: LOW (but urate is normal), occasional mildly low RBC and Hemoglobin. Serum albumin and total protein either high-normal or a bit high. Platelets occasionally a bit high. GGT was never high, but has been falling over the last 4 years and is now low (i.e. below the lower limit of normal).

Other tests that were normal: abdominal/pelvic ultrasound, chest x-ray, MRI brain w/out contrast (only revealed a small pineal cyst). General neurology tests (normal except for hyperreflexia "3+"), normal nerve-conduction study. ANA, ENA screen, ANCA, anti-CCP, anti-ds DNA, RF: all negative. Neither CRP or ESR are raised.

I have been thinking that many of my symptoms could be described by inflammation and/or blood vessel ischemia, although the cause of that would be still unknown (clots? vasculitis? something else?). I also have a high cancer risk (BRCA gene mutation) and worry about paraneoplastic phenomena (possibly Trousseau syndrome). Sarcoidosis? Infection? What is this??

If anyone has any thoughts, personal experience, or advice that they would be willing to share - particularly on the flank pain, bright urine, flakey urine (mucosuria?) (since I realize this is a kidney disease forum) - I'd really appreciate it.

Thank You!

[Eivissa]

Have you checked for MALS? I thought my pain was kidney related but turned out to be vascular (SMAS & MALS)

[Polaris_Ab in reply to Eivissa]

Hi Eivissa,

I will look into this. I read in an earlier comment of yours that your MALS and SMAS were confirmed by a scan - was this CT Angiography or MR Angiography, or something else?

I hope that you are getting treatment/support that helps your condition now that you have a diagnosis.

Thanks so much taking the time to offer suggestions. That means a lot!

[Eivissa in reply to Polaris_Ab]

Diagnosed by CT scan with contrast dye. I thought it might have been floating kidney or hepatic flexure syndrome so was very relieved to finally have some answers. Wishing you all the very best 👍

[Darlenia]

I feel for you - it's frustrating to live with symptoms of an illness. Unfortunately, none of us can diagnose or treat on this forum since we aren't medical specialists. There are many issues that can affect humans - there are multiple organs in a body. And multiple control and signaling systems that can go awry - autoimmune, hormonal, etc. And then we also can't forget about all the bacteria and viruses out there. Your only way to get a diagnosis is to continue to work with the medical establishment, as frustrating as that may be. I'm kinda thinking that perhaps you might have an autoimmune condition as Eivissa noted. Truly hope you find answers soon.

[Polaris_Ab in reply to Darlenia]

Thanks, Darlenia.

You are right about the complexity of the human body and all of the things that could go wrong. You are also right about the frustrations of working with the medical establishment.

You may also be right about there being immune system involvement - perhaps autoimmune.

I really appreciate you comments and your support. Thank you.

[WYOAnne NKF Ambassador]

I can only give you information my own experiences. We cannot diagnose on this site. We are not medical experts. If it were me, I would have my primary doctor refer me to a specialist that can figure out what is going on. Maybe you should also get an appointment with a nephrologist also- doctor that only deals with kidneys, and get that ruled out.

My guess is that it is not kidney related. Kidneys on their own do not cause flank pain unless you have an infection, a blockage, a stone or polycystic kidneys. Sounds like autoimmune, vascular or metabolic. Doctor needs to figure out what is going on.

CKD has no symptoms at first, except high BP. That is what makes kidney disease so devastating...you are in stage 3 or 4 before you get diagnosed.

Make that appointment and best of luck!!

[Polaris_Ab in reply to WYOAnne]

Thank you WYOAnne.

I like your suggestion for an appointment with a nephrologist, but I can't manage to get a referral to see one since my bloodwork and urinalysis are not suggestive of a kidney problem. The Urologist I saw mentioned the possibility of renal papillary necrosis (RPN)(which was also brought to my attention by another HealthUnlocked member). However, in his report, the Urologist wrote that it was *me* who brought up the RPN, and so that has all but crushed the possibility of any other doctor making a referral to a nephrologist, at least on the basis of potential RPN.

The rheumatologist that I did see didn't think this was autoimmune (no raised CRP or ESR), but I do know from what I've read (in journals) that negative CRP and ESR do not eliminate the possibility of disease. She did suggest possible metabolic disease, though (like you mention), and she also agreed that there could be a vascular component to all of this.

I don't have a family doctor (not enough of them to go around), but hope to see an Internal Medicine specialist in the next coming months. (Nearly a year ago, I managed to have a referral made to an Internal Medicine doctor, but the person who made the referral faxed it to the wrong address, and I just learned last week that I have been waiting patiently for nothing.) Hopefully the IM doctor will take my case seriously because mostly, so far, it seems like most doctors just don't want to make the effort or take the time to think about all of this, and just say things like "systemic health issues" = "all in the mind."

Thanks for your good advice - I really appreciate it!

[Polaris_Ab in reply to Polaris_Ab]

Just a further comment on what I wrote above: the possibility of RPN (renal papillary necrosis).

About a year ago, I passed a large tissue-like piece of material with my urine (about 0.5 cm diameter), which was much larger than the usual flakes. That was the second time I had seen something like that come out, but the first time I flushed down the toilet. The second time, I collected it and had it sent to be analyzed by a Pathologist. Since I couldn't get it sent away - or preserved properly for a whole day - I tried to preserve it myself first by soaking it in water (bad idea), and then, on the advice of a dentist, transferred it to a small container containing vodka. The Pathologist's report mentioned it not being "fixed" properly (and so I suppose this may have interfered with their analysis). But, he did write that there was no true tissue in the sample. He only found amorphous material containing degenerating and "detached" epithelial cells, along with colonies of "micro-organisms." (The Pathologist also suggested clinical follow-up to explain this ... but I can't seem to convince any doctor to help to further this investigation after being discharged by the Urologist.)

Because of the lack of tissue in the sample, and because of the photographs I've seen of mucus in urine, I'm inclined to think that the flakes in my urine are mucus (i.e. not tissue - and so not RPN).

Sorry for writing so much. I just wanted to document this in case it could ever be helpful to someone.

[WYOAnne NKF Ambassador in reply to Polaris_Ab]

If your bloodwork and urinalysis were both normal, that would pretty much rule out a kidney issue. I would concentrate on seeing the Internal Medicine doctor.

[Polaris_Ab in reply to WYOAnne]

Thank you, WYOAnne - especially for taking the time to advise someone, on a Kidney Disease forum, who likely doesn't have KD (although I still suspect that the kidneys are somehow involved).