New to kidney disease

[Mikeandvan]

Hi all, I'm a 48 yr old male living in the UK. I presented about 5 years ago with mild anaemia, after a few dead ends, I gave up looking, or thought it was nothing. Forward to last year I start going to toilet loads more during the night. I see GP, she orders abdomen ultrasound scan, the scan shows one kidney is half size of the other! But urine and blood tests - according to doctor are ok and she refers me to a kidney doctor who says I don't need a referral as my gfr is within normal range, which is greater than 60 (>60). I didn't realise then that this rather vague method was not that satisfactory for diagnosing early stage ckd. She then refers me to a Urologist, who says my prostrate was normal, my symptoms by then had gone (no more going to toilet at night) so he said it was to ok to leave it for now.

Anyway, early this year the night time trips to the toilet to urinate start again, and I'm feeling quite fatigued at times, and skin is bad, and urine is frothy (I just noticed this, didn't give it a thought before...……….), and moods are low, not good at all. So doctor repeats blood test, different doctor this time, he says 'fine', you don't have kidney disease, he suspects possible pre diabetes as blood glucose is slightly raised (fasting glucose - 5.5 - right at the edge of upper limit). He says my gfr is normal. So I start to really look into my results, potassium, creatinine etc etc. My creatinine over 2 separate tests one month apart is 91 mmol. So my gfr is >60. But I read further! Gfr is calculated by creatinine/age/weight? But as I understand does not take height into account. Now I'm 6ft 2" and only 75kg, 10% under IBW (ideal body weight), my weight is normally 80 kilos, or 75 when I am busier at work, or exercising regularly/eating healthily. And I learn that gfr may be over estimated in my case - having lean muscle mass! Sorry to go on! But all this along with having one kidney half the size of the other is worrying me greatly, rightly so! I cannot believe the kidney specialist wouldn't see me, after knowing I had abnormal kidney size, did they just assume it was always like that? Anyway, it seems fairly obvious to me know I have some kind of kidney disease, as many of my test values are borderline abnormal. I think my doctor might listen when I see him next week, as I didn't notice before froth when I urinate and my increased fatigue. My potassium level is right at the upper limit of normal, I am slightly anaemic, I have tennis elbow that won't seem to totally heal, slight rash/acne on my nose/face, Will this be enough to see a specialist on the NHS? I have stopped drinking alcohol, binging on sugar, and am in generally eating quite a lot healthier, but I understand a diet for people with kidney disease is quite specific, so out go foods high in potassium/carbs etc...…..A lot of information to take in over a short period...…..

[Bassetmommer NKF Ambassador]

HI,

i understand your frustration and I think it is justified. Unfortunately, it is general practice to not do much about kidney disease until late stage 3 or 4. You are wise to tackle this issue now. Have you had a full renal panel done to see if there are other lab results indicating a decrease in function. GFR is only part of the test procedure.

We do not diagnose here but I was concerned with your list of symptoms, especially the fatigue and rash on your face. Take a look at this website for symptoms of lupus and maybe have your doctor check you out for other issues.

mayoclinic.org/diseases-con...

Stages of CKD: kidneyfund.org/kidney-disea...

Labs for CKD:

verywellhealth.com/chronic-...

[Mikeandvan in reply to Bassetmommer]

Thanks for you reply. I am concerned lately as my fatigue and moods (very irritable) are getting worse. I'm also starting to feel very mild nausea, and night time urination gone through the roof. Then I start reading about froth when you urinate, which I have plenty of, and was totally ignorant that this was a sign of protein in urine. I shall badger my doctor again next week and demand I see a Kidney specialist, if not I will complain to the local health authority. Apart from that I am thinking of changing to a vegetarian diet, and completely stopping alcohol (I use to drink a lot).

Mike.

[Bassetmommer NKF Ambassador in reply to Mikeandvan]

HI Mikeandvan.

I agree that you should have a better test done. But frothy pee can be many things. But they can certainly test for protein. But like I said I would have some other things checked because of that rash. Again, take a look at this site mayoclinic.org/diseases-con.... Not diagnosing, just suggestion.

Good for you for stopping the alcohol if you were drinking a lot. Check out a renal diet, which is plant based, low protein, and watching potassium, phosphorous and salt. There is a lot out there on renal diets.

[Mikeandvan in reply to Bassetmommer]

Thanks I will check out that link, time to go veggie.

[itzmich]

Sounds like you have a lot going on. I would watch my diet more closely. Limimit foods high in potassium, lower my protein, salt intake, as well as stop using otc pain meds. Drink plenty of water and keep an eye on BP, if it's high talk to your dr about BP meds. Good luck.

[Mikeandvan in reply to itzmich]

Thanks, BP is ok. I think I have kidney disease, just hope its still in early stages, will see doctor this week.

[Hidden]

I had exactly your symptoms for some time until my kidney function tests started showing some definite iregularities.

Have you had your thyroid checked? I have hypothyroid as well and it could account for a few of your symptoms.

Sorry your're going through this - I know it's miserable.

[Mikeandvan in reply to Hidden]

Thanks Zencat, thyroid is ok, well one reading a bit high, but within normal. Seeing doctor Thursday, really hoping she gets me appointment with Kidney doctor soon, meanwhile I'm switching to a largely plant based diet with some grains, bit daunting really, so much you cannot eat. But well worth a try I think, if you've got the will power!