Help! Potential IgA Nephropathy

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Help! Potential IgA Nephropathy

Postby mapleleafs » Thu Feb 08, 2018 4:40 pm

I am a 28 year old male ( 230 lbs, 6"0) and I have been experiencing traces of blood (Erythrocytes aka RBC's) in my urine for 3-4 years now. I have other urinary symptoms such as urgent need to urinate after drinking a couple glasses of water and not being able to completely empty my bladder (self diagnosis on this last one, never clinically found). Why I think I am not voiding completely is because I will go to the washroom right before bed, and when i lay down I get the feeling that there is still some left, or that I have to go again.

I have had several urinalysis's, blood work, ultra sounds of KUB, cystoscopies and a MRI with contrast on for my liver.

The only real thing that has ever shown up is a trace of Erythrocytes in Urine. As far as results go, here are my most recent:

Urinalysis:

Appearance: clear

Specific gravity: 1.005 (range 1.001 - 1.030)

pH: 5.0 (range 5.0-8.0)

Protein: Negative

Glucose: Negative

Ketones: Negative

Erythrocytes: 0.3 mg/L

Nitrite: Negative

Leukocyte Esterase: Negative

General Chemistry (blood work)

Glucose Random: 5.1 (range 3.6-7.7)

Hemoglobin A1C: 5.2 (range < 6.)

Sodium: 141 (range 135-145)

Potassium: 4.1 (range 3.5-5.2)

Chloride: 100 (range 98-108)

Bicarbonate: 29 (range 20-30)

Urea: 4.6 (range 2.7-8.4)

Creatinine (blood): 98 (range 67-117)

eGFR: 90

Urine Chemistry:

Alubumin: 7

Creatinine (urine): 5.5 (range 3.5-24.5)

Albumin/Creatinine: 1.3 (<2.0)

I realize that some of my values are close to the top end of the ranges, but they always vary and at this point my doctors are not worried. I have been referred to a Urologist who based on his findings does see anything and also the values above are being overseen by a nephrologist who sees no issues.

My concern is that I have throughout the day will have very dark yellow or orange urine if I am not drinking between one to one point glasses of water per hour. Knowing that I have traces of blood in my urine I always am scared to look at it because I think that I am seeing blood and that the doctors are miss diagnosing me.

I also cannot seem to find any concrete literature relating to GFR, mine on tests has ranged from 70-100. Based on what I've read at my age, GFR <100 and trace of blood in my urine would put me into Stage two of Chronic Kidney Disease. So is it normal for it to fluctuate like this based on how much water I drink throughout the day? Or should i consistently be receiving a value of over 100?

This has been tormenting me for the last two years, I am on anxiety medication because I cant bring myself to believe what I am being told. I also visit the Emergency frequently when I panic, hoping that they doctors there will find something.




After a recent appointment with my nephrologist, he has come to the conclusion that what I might have is called IgA Nephropathy. He called it a condition and not a disease, he was very adamant on that. I, of course, started reading up on google about it as soon as I got home and now I am completely terrified.

He said other than a trace of blood in my urine, my kidney function is good. I am now scared that this IgA nephropathy will lead to something that will end up killing me.

Anyone else dealing with this? Would appreciate your experiences and information that your doctor may have provided you.
mapleleafs
 
Posts: 4
Joined: Thu Feb 08, 2018 4:28 pm

Re: Help! Potential IgA Nephropathy

Postby wagolynn » Fri Feb 09, 2018 4:26 pm

Hi mapeleafs,

It is always wise to check the source of anything you read on the internet, there is a lot of wild stuff out there.

GFR is difficult to measure directly so is usually estimated, it is notoriously error prone but you are fine, no where near troublesome.

IgA - if this is suspected they will keep an eye on you so you can relax about that.

Water - you should be drinking about 2 - 3 litres per day, as you drink less your pee will get darker, ideal is around straw coloured.

It sounds as though you need to reprogram your peeing, most hospitals (in the UK) have a clinic for this, explain to your GP, and they should send you to the clinic.

Summing up, I don't see anything that is going to kill you so try to stop worrying.

Best wishes.
wagolynn
 
Posts: 1129
Joined: Thu May 23, 2013 2:49 pm

Re: Help! Potential IgA Nephropathy

Postby mapleleafs » Fri Feb 09, 2018 6:25 pm

Thank you wagolynn, I appreciate the positive feedback.
mapleleafs
 
Posts: 4
Joined: Thu Feb 08, 2018 4:28 pm


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