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Early CKD Support
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Wondering about protein in urine

Hi, I have been loosing anywhere from 300mg to 800mg of protein in my urine per 24 hours for about 4 years now. My creatinine and GFR and all other markers are always perfect (thank God). I'm wondering how my kidneys are showing damage (by the proteinuria) but my blood tests are always perfect. I do not want to have a biopsy right now, and my nephrologist doesn't really think I need one either at this point. We both believe I have IgA nephropathy. I just don't understand why I'm loosing so much protein, but my kidney "function" by way of the blood tests are always really good?

bacsichuabenhsoithan.com

17 Replies
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Hello and good morning. Welcome to this very informative community of like minded people. Surely if your Consultant and Dr. are not worried why are you feeling so stressed?

Is there perhaps something else that is on your mind that you would like to share with the community.

Perhaps having a look at one or two of the research based websites might allay your fears.

I have listed two below for you. Also there are other posts and members that you may like to share information with.

Are there any members who would like to comment please?

Stay connected with us and let us know how you are getting on.

www. nhs.uk/conditions/kidney-disease

kidneyresearchuk.org

MAS Nurse & Moderator.

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Just thought that you should know that many of us worry because of our nephrologists. I am sure you have read enough comments here to know that many of us have improved our renal function in spite of what a nephrologist says. They tell us it can't be done and we do it!

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I appreciate that but I still need to know what the cause of my protein in the urine is. Having exhausted all other options the only way I can find that out is a biopsy. My GFR is currently normal.

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Hi,

My reply was to the nurse. I agree that you need to know the cause of the protein in the urine. I was responding to this: "Surely if your Consultant and Dr. are not worried why are you feeling so stressed?" My first nephrologist was next to useless and my second nephrologist tells me that I do not need to change my diet. This was after I had changed my diet and went up nearly 20 points in efgr. So, who am I going to believe?

After doing your research, and possibly consulting with other "experts", you need to do what you feel is best for you.

Good luck,

lowraind

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Hi thanks for clarifying and thank you for the best wishes. It’s such a worrying time not knowing what the cause is.

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Hi I’m also losing a lot of protein through my urine even though all my blood tests, GFR and kidney scan are all fine. My nephrologist has referred me for a kidney biopsy to try to find out the cause. It’s strange that your nephrologist doesn’t think you need a biopsy. From my experience it seems to be pretty standard practice when the cause of protein in the urine can’t be identified.

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Have you posted on here recently before but under a different name? Your post is identical to another that was on here a few weeks ago.

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I had the same condition in 2015, a nephrologist say it might be normal, in 2019 my gfr is around 30, i truly recommend you to check with another nephrologist, take it seriously, and you can have biopsy so you can know exacly what is the couse, it is very easy to manage it now than waiting until something happens.

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Out of interest did you find out what the cause of yours was Ahmad? I’m currently waiting for a biopsy

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My biopsy stated that the reason is undefined, my nephrologist believes that high blood pressure could be one of the reason, but back to 2015 my BP was normal, so there might be another reason, the BP problems started in 2017 i think it might contribute in progression of diseas.

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Ok thank you for your response. My BP is also currently normal.

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Some people have unexplained proteinuria without kidney damage. Kidney biopsy can cause damage to your kidney so unless you are having other kidney tests that show problems, you might not want to go that route right away.

Have your thyroid tested, including a full panel plus the antibodies against your thyroid checked, TPO and TG. Sometimes the thyroid is not working correctly and it can cause proteinuria. So many doctors don’t know this so look it up, print it out and take it to them. Make sure you print from a reliable source. Many times proteinuria stops after getting your thyroid fixed.

Proteinuria can cause fatigue and depression too. Alcohol and smoking can cause you to lose more protein and so can high blood pressure, so eat healthy and don’t drink or smoke!

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Oh my god I’ve got protein in my urine bloods are fine and o have auto immune thyroid issues so it could be that !?

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Do you have other symptoms that are unexplained?

Are your thyroid issues related to antibodies as in Hashimotos or plain hypothyroidism with elevated TSH?

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You’re right to say have all the relevant blood tests first but when you are losing large amounts of protein and all blood tests prove inconclusive you really have no other option than to have the biopsy. To leave it and never know the cause could potentially cause long term damage to your kidneys. For me having the biopsy - as advised by the nephrologist- is definitely worth the risk.

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I’m just saying have all non invasive tests first...rule out everything else.

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Hello,

i found out that I have proteins in urine back in December, >300. All other test were normal my gfr >90. My doctor said it is nephrotic syndrome since I was swollen at that time and my lipid panel was high. albumin in blood was 2.7 so she sent me to nephrologist. He did some blood work to rule out Lupus, hepatitis, etc and since blood did not show anything he said to do biopsy. I did and results came as minimal change desiese, which means not many filters in kidney are damaged. So still I don't know why am I leaking proteins, what is causing it is still a ? I started prednisone end of the December and was on the high dose of 60mg for 2 1/2 weeks and then 40mg week, 20 mg week and 10 mg for a week and I stoped. I was not leaking proteins for 2 months and came back, so he puts me on prednisone again smaller dose and he said to taper me off slowly this time since last time was quick. So I am right now on the 15 mg and will go to 10 in 2 weeks, and even lower dose after that and will be time to see him again end of the June. When I start prednisone in week my proteins are negative, but I am afraid that will come back again. Also worried that might be something else, who knows what in my blood, or bones, since as much as I read on internet all of the scary things pop up.

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