Wondering about protein in urine

[treesarecoo]

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?

[MAS_Nurse]

Hi treesarecoo,

Welcome to our community. Hopefully you will find folks here are very knowledgeable and willing to support to each other. I'm unable to answer your question specifically as I don't know the answer, but it maybe helpful to you to take a look at this website if you haven't before for more information about IgAN:

Kidney Research UK - IgA Nephrothapy: kidneyresearchuk.org/health...

Edinburgh Renal Unit: edren.org/ren/edren-info/ig...

Ok folks, please pop by and welcome this new member.

Keep in touch and let us know how you are doing.

Best wishes,

MAS Nurse and Moderator

[Momofson]

Have your thyroid checked. Not only the thyroid panel but also checked the antibodies against your thyroid, TPO and TG. There is a connection that most doctors don’t know about. Get online and research, then print and take to your doctor. Thyroid controls lots of body functions. My son has this problem. He will be having his thyroid removed soon because of nodules....one possibly cancerous. Even without cancer or nodules, you can have a problem with protein loss. Don’t forget to check antibodies, they are very important!

[treesarecoo in reply to Momofson]

Thank you for your reply. I did already get my thyroid checked and asked my nephrologist to check my antibodies too but she won't do it because all my other numbers are normal. I'm pretty sure I have IgA nephropathy, but I'm just wondering why my blood tests are good, but I'm losing so much protein. I mean, I'm glad that they're good obviously, but I thought that losing that much protein means your kidneys are damaged, and I thought that would show up in the blood test too.

[Momofson in reply to treesarecoo]

You can have normal thyroid levels with you thyroid antibodies being off. Two separate things! Too bad most doctors don’t understand this.

Also, they told you your thyroid blood test came back fine but did you ask for a copy? Many doctors do not know that The Endocrinologist Society of America, said years ago that the level they give at the labs for TSH are too high. Find out what your TSH thyroid test is and go from there. It should not be above a 3

Read the website “Stop The Thyroid Madness” lots of updated information on there. You need to stay very informed these days! Thing changed constantly and the doctors don’t always stay informed.

[treesarecoo in reply to Momofson]

I am very aware of my numbers and always get copies of everything I have done. I'm the one that requests my blood tests and know all there is to know about what each test means and the results with my CBC and CMP. My last TSH was 2.31, so it's not above 3. I have wondered about my thyroid for a long time because I'm ALWAYS cold even in the summer, but my numbers are always in the normal range. I realize too that you can have thyroid issues even if your numbers are normal, but getting doctors to go that extra mile to do more testing is nearly impossible. Thanks for your help though!

[LisaEP]

Hi I’m having exactly the same problem as you. Losing high amounts of protein in the urine but bloods and kidney function all normal. I’ve had a kidney scan which also showed my kidneys appear normal. My consultant has recommended a kidney biopsy as the next stage to try to get to the bottom of what’s causing it.

[treesarecoo in reply to LisaEP]

Do you have blood in your urine too? I have always had blood in my urine...for like 25 years. But then I got the flu one day and saw blood in the toilet. It freaked me out so I went to a urologist convinced I had cancer. He just looked in my bladder with a camera and since he didn't see anything just sent me on my way and said to come back if it happens again. Ridiculous. So I researched for dozens of hours and figured that I have IgA nephropathy. I went to a nephrologist and she agreed that's probably what I have. You're supposed to get a biopsy to confirm the diagnosis, but the sound of a piece of my kidney being ripped from my body sounds horrific, so I said NO. I've been treating it naturally with diet and supplements for four years now. Blood tests always great (thank GOD) but still lots of protein and lots of (microscopic) blood in the urine. I haven't seen any obvious blood since that one time, but when I test my urine with a dipstick it's always high.

[LisaEP in reply to treesarecoo]

I’ve not seen any blood but there may be microscopic traces that were picked up in my urine test. I’m seeing the consultant again on Wednesday so will ask about this. With regards to the kidney biopsy a close friend of mine has had this done and she assured me it’s a relatively simple procedure and nothing to worry about.

[johnmehta123 in reply to treesarecoo]

i am seeing similar symptoms,urine showed microscopic blood for last three years and saw traces of protein in 24 hour urine test. underwent biopsy in January and was diagnosed IGAN. Doctor told me that IGA causes the bottom layer of kidney filters more porous causing loss of blood.

It will be helpful to learn what diet and natural supplements you been following as it seem to have help you to keep it steady for so long. May be we can learn from your experience.

As far as biopsy goes it was simple procedure but my back was soar for two weeks but i have received it fully from it

[treesarecoo in reply to johnmehta123]

Hi there, after I found out about the protein in my urine 4 years ago, I spent all day researching for months on end for every possible way to heal the kidneys naturally. I am a certified holistic nutritionist, so I have a lot of experience with nutrition and have been studying nutrition and the body for 20 years. That's why I was so shocked that my kidneys are messed up! There's a lot to know (A LOT) but if you want the basics of what I do, I follow a mostly plant-based organic whole food diet. Low protein (about 10-12%). I take cod liver oil, vitamin D3, R-lipoic acid, resveratrol, astaxanthin, CoQ10, I drink nettle infusions, exercise regularly, and take medicinal mushrooms. This post would be way too long if I wrote everything I have tried and do now, so if you want more info let me know.

[RickHow]

The last thing I want to do is to sound sarcastic. But the answer to your problem seems obvious. Normal 24 hour collection would be about 150mg. You are getting double the normal and at 800mg is it outrageous. YET you (your doctor) has know this for FOUR years. And you are seeing a kidney doctor who also just leaves you in doubt as to what is going on. Personally, if after 4 years the best I could get from my doctor(s) was "perhaps this" or "perhaps that", I'd be making appointments with a new medical team. Go to a good primary care doctor and report you latest numbers. Do the same with another kidney doctor. Also the doctor requests a biopsy. But you don't currently have the time? This takes a simple visit and is a simply test. And your "recovery" is some soreness for 2 or 3 days. You can still work, do daily duties, etc. And imagine if there is something wrong right now that no one can define. And you just ignore finding out. You do not want to hear a year or two from now "if only you had a biopsy 4 years ago, we could have solved your problem, but now you are too far along". We are not doctors. We are like a support group and knowledge base of information. We can tell you what we would do, or what we have already done. But you have a known, problem. Have had it for four years. The next step is a biopsy to find the answer. The internet and/or our experiences are not going to solve your problem. GET TO A DOCTOR WHO DEMANDS AND ANSWER TOO.

[treesarecoo in reply to RickHow]

I'm not avoiding the biopsy because I don't have time, I'm avoiding it because the results are irrelevant and I don't want a piece of my kidney ripped out of my body. No matter what the biopsy showed, I wouldn't treat this disease process any differently. I refuse to take medication unless I was on death's door, and my creatinine is perfect right now (0.67) so I am just trying to treat myself naturally right now. I know there is something wrong with my kidneys. Both me and my nephrologist "believe" it is IgA nephropathy. I suppose it might not be, but like I said, no matter what I have, I know it's some form of kidney disease and I wouldn't treat it with drugs anyway. That's just how I am. My blood pressure is perfect, I'm a healthy weight and every other test is normal and good. I was simply asking if anyone knows why the creatinine would be normal while losing a lot of protein in the urine. I would assume that creatinine would be affected, but mine isn't, unless it's just an early stage of CKD. I really like my nephrologist; she isn't ignoring my problem. I refused the biopsy and she respects that.

[RickHow in reply to treesarecoo]

I think my exact experience may wake you up to the fact that avoiding the biopsy is a mistake. I had 100% normal urine, blood testing. I was in perfect health. One day I fell (unrelated) and at a routine CT scan at the hospital, there it was, big as day, a cancerous tumor. The kidney was removed immediately. So you can have "normal" numbers and not even realize what it wrong. So please don't think that the results of further testing would not show you anything. With that attitude I guess there is no need for biopsies, ultrasounds, etc. . To answer your specific question, it is absolutely possible to have high protein in urine and "normal" Creatinine level. One of the main things shown on any test is the protein/Creatinine ratio. Here is a link:labtestsonline.org/tests/ur...

[treesarecoo in reply to RickHow]

Thank you for sharing your story. I guess my point is that no matter what the biopsy shows, I would continue as I am. I've already had an ultrasound which was normal. The biopsy would just show some specific type of kidney disease. They're all pretty much treated the same, yes? With drugs or whatever which I'm not interested in taking anyway. Taking drugs may help with one disorder but cause another. For example, people who have arthritis take a drug for it, then they get cancer from the drug. I'd rather have arthritis than cancer. Maybe some day I'll get a biopsy, but I don't want one now.

[RickHow in reply to treesarecoo]

I understand your position. I don't agree with it at all, but I understand what you want. It is not true that anything shown on a biopsy or test would be treated the same and with a lot of unwanted drugs. My problem was "fixed" with surgery (removal of kidney completely). No drugs. But removal of the bad. Now the only reason the entire kidney was removed was because of where the tumor was located. Right in the middle of kidney. It if were just in lower or upper part, then only those parts would be removed. Further testing of your kidney could show how much it is damaged, where the damage is, and if it is "fixable". But clearly there is no one size fits all no matter what is wrong. You will NOT be overwhelmed with medications. Most are "simple". Blood pressure control, etc. Good luck. Keep us informed. But clearly remember to do nothing is seldom the right approach. My doctor likes to make an analogy. If your car was running well, getting you where you wanted to go, but made an awful noise, or a lot smoke or leaking. Would you say, oh well, it runs well, I better not see how to make it normal? When perhaps a simple, small repair may return it to 100% nomality. You are trying to solve a problem by kind of ignoring the problem. Even if you have some untreatable condition, it clearly is better to at least know what is wrong THEN decide how to proceed, or not to proceed.

[treesarecoo in reply to RickHow]

Thanks for your input, I understand what you are saying, but just so you know I'm not ignoring my situation at all. I am treating myself with diet and herbs right now (very strictly!) and my nephrologist tells me my situation is stable and just to watch and wait. My blood pressure is normal, actually on the low side, and I monitor my protein monthly with urine dipsticks so if it ever goes crazy high I would go in to the doctor right away and ask her what to do. I know I have some sort of kidney disease and she and I are pretty sure it's IgA nephropathy. I read that as long as your protein levels stay fairly stable (even if they are abnormal) and if they're under 500mg - 1000mg per day there is a low risk for severe progression. Mine have been stable for four years now (sometimes 200mg, sometimes 600mg, it goes up and down each month), so it seems I'm stable at the moment. Believe me, I am NOT one to ignore things. I am very proactive and spent hundreds of hours researching how to heal the kidneys naturally without drugs and I think that I'm doing all I can to achieve that. Diet and lifestyle is everything and I really believe that you can either heal or at least slow progression of almost any disease (within limits of course!) if you give the body what it needs.

[Marvin8]

My nephrologist didn't feel a biopsy was necessary and said that it wouldn't change the course of treatment either way. I'm 61 and my GFR is around 50. Was diagnosed with GFR around 60 two years ago.

[jgjg1]

Has doctor prescribed any medicines for this??

[treesarecoo in reply to jgjg1]

No, I'm not on any medicine and the doctor has not prescribed anything. Even if she did, I wouldn't take it. I know I sound crazy, but I am completely phobic of drugs. They damage your body in other ways. When you take a drug, you may help the condition you have, but create another one in its place. Ever watch a commercial that lists all the side effects of a drug? They're horrendous.

[LisaEP in reply to treesarecoo]

I understand your concerns about taking medication but personally I’m having the biopsy to find out what’s causing my protein loss. I would strongly suggest you do the same - it’s then entirely up to you whether you chose to take any medication that may be prescribed but at least you’ll know what you’re dealing with and you can then take an informed decision.

[treesarecoo in reply to LisaEP]

Yeah that makes sense, but I'm just really nervous because there are risks to the biopsy too. It just sounds horrendous.

[LisaEP in reply to treesarecoo]

I really don’t think it’s anywhere near as bad as you’re imagining. You can read up on it from many others good trusted websites. You really ought to try to find out what’s causing your protein loss. I’ll post again when I’ve had my biopsy done to try to reassure you. Good luck with whatever you decide, I wish you all the very best.

[treesarecoo in reply to LisaEP]

Thanks so much and good luck on your results

[Bubreg]

HI there, I am new here and just would like to share my story and see if we can find out why we have proteins in urine and other results are OK. I leek proteins in urine since December 2019. One weekend I woke up and was swollen, hands, face, legs, waist... and I went to the doctor, they did some blood and urine testing, proteins in urine were 335, and my lipid panel was too hight, more that double of normal, Albumin in blood was low, thyroid function was 4.23 and they sent me to nephrologist because the dr said I have a Nephrotic Syndrome. My blood pressure was normal, GFR normal so just proteins were very high and my nephrologist did more blood testing for hepatitis B and C, Lupus, HIV, some other things which all came back negative, so he suggested to do biopsy to see what is causing my kidneys to pass so much proteins. I did have biopsy before the Christmas (biopsy was really easy, did not hurt at all and was fine in one day, but did not do any hard work for a week) and results came as Minimal Change Disease, meaning that my filters in kidneys were minimally damaged. My nephrologyst prescribe Prednisone and I took very high dose of 60mg for almost 3 weeks, then 40mg for week, 20 mg for one more week and 10 mg last week. My proteins were negative in second week of taking prednisone. After stoping prednisone for 2 weeks, in mid February I went to check my urine and blood work, and everything came back to normal, and my thyroid function was 1.13. So in mid March I start to notice foamy urine again and I checked my dipstick at home only to see proteins are coming back and I also experienced so much joint/bone pain in my shoulders (especially while I sleep),neck and hips (while I sit longer and have to get up) so I went to my nephrologyst and he confirmed that proteins are back and wants me to start prednisone again but lower dose and taper me off slowly this time, so here I am now still on prednisone, proteins are negative after first week of prednisone use. I will still be on it for at least a month or so. I am sorry this is so long, but I have to mention this: I was on birth control pills for 13 years, and in August I stoped taking it for a 2 months (did not have my period) and started again (got my period) and started new pack and all of this swelling and proteins happened, and dr ordered that I stop taking oral contraceptives since am high risk for blood clot, so I did and had period for the last time, since December 8th I did not have one. I also had some stress at the same time in November, so it might be all related but doctors are not thinking that. I also went to OB doctor few weeks ago, he did some hormone testing and just this week I found out that I am at post menopause already, my ovaries failed, who knows when since I was on the pills. So here I am 44 years old, 5'3", 125lb, eating healthy and having problems with my kidneys, and do not know why, what is causing proteins in urine???? I did googled a lot, and got scared that could be myeloma or what ever, so I asked my dr what else could be underlying condition and he said Hodgkin's Lymphoma, he checked my lymph nodes, and sent me to chest x-ray to just make sure it is not, and results came OK, not HL :). But what it is??? I would like to know why am I leaking proteins in urine??? Thanks for reading! I will update anything new I have.

[treesarecoo]

I thought you were already diagnosed with minimal change disease? Taking any drug or medication has the potential of damaging the kidneys. Do you take NSAIDS on a regular basis?

[Bubreg]

Yes I am diagnosed with MCD, but still do not now why am I leaking proteins in urine, what is causing it is unknown. Right now I only take prednisone that my nephrologist prescribed and some vitamins and do not take any NSAIDS, which in the past I hardly took any pain meds, in a whole year maybe just few, and the only pill that I took for 13 years was contraceptive one and that was it. I was basically free of any medications and am healthy besides this proteins in urine now. So I would just like to know what is causing it, I would not like to take prednisone all the time.

[treesarecoo]

Isn't that a symptom of MCD? I always have protein in my urine. Sometime a lot, sometimes a little. I don't take any meds, but am trying to heal myself naturally. I would pick up "Stopping Kidney disease" by Lee Hull. Great info on slowing the progression of kidney disease.

[Bubreg]

Thank you I will look into it. I also try to eat healthy as possible, and I always did, but now trying to avoid sugar and salty. Drink water and tea, sometimes one cup of coffee and thats it. My proteins would show over 300 on the dipstick and with prednisone go to negative in a week. so hopefully this time when I am done with the meds will stay in remission longer, fingers crossed.

[Heatherwargo7]

I recommend u go for the biopsy the doctors told me my son had Iga for 10 plus years until a step in doctor rushed a biopsy and come to find out that my son has a very rare kidney disease called sports syndrome and maybe my other son's to it affects your hearing and seeing and long down the line kidney function he's 14 but they say it affects u around 20 years old my son has bad hearing and vision that he might lose and kidneys could fail in future so get the biopsy it's not a big deal to get the tests needed to help find your problems out sooner then latter good luck and God bless u all with these

similar problems I hope the best 4 u all

[Heatherwargo7 in reply to Heatherwargo7]

Alports syndrome