2000g protein level in urine..getting nowhere with gp!

[leah86]

So sorry inadvance for jumping in an joining/posting here but i cant seem to get any where or real answers or next step tests from gp....heres my story in short(ish)

So since jan 2011 when i was preg with my lb iv had protein in my urine rangeing from +2 +3..no high blood presure so no worries an normal birth...i get pregnant again feb 12 this time it was +3 +4..only 1 episode of high blood presure an normal delivery at 39 weeks...so no im not preg lg born 7 weeks ago..my protein in *4 constantly.my consultant advised to go for kidney scans an gp will arange.but i seen him and hes making me do more pee an blood test (iv lost count how many iv had already) im due back to see him on 9 th jan i dont kno what to ask him ie is it kidney damage? Stop making me pee an do something else if not just to rule it out :-\ last 3 weeks i have started to feel nauseous.i went to bed feeling sick when i woke i swiched night light on and i had a black dot over my right pupil.my mum said that can be high blood preasure.so can u be diagnosed with ckd if no swelling or high bp? Tia for any replys

[leah86]

Thanks for comment..yes thyroid and diabites an all other bloods are normal.

[newshound]

Has anyone checked your thyroid?  Especially since this occurred around pregnancy, hormones affect it and thyroid can affect the kidneys.  Drs often don't look at the whole person, I would have it checked too and find out the numbers they get, don't let them blow off a little high as OK, because you still feel awful.

[leah86]

I feel ok..just tired i suppose.this is whats worrying me a little is i have no other illness for them to treat.something has got to be done cos i cant decrese another 30 over a year! I think they will put me on ace too.my appt is i think 10th sept(really need to double check) ill let you kno.have you had your appt yet?

[Sconnie]

I know my numbers, they always tell me the results anyway....They know how paranoid i get about my health! She said they will send all the info to the nephrologist. My function function eGFR was over 90% so normal, but you can still have kidney disease going on with your kidneys remain normal for a while. Eventually the protein will affect them, so they may put me on an ACE inhibitor to reduce protein, I've look these before when I was in heart failure, they are used for the heart as well. I understand they can also protect the kidney. I have been spilling the protein for past two years since my child's birth, and kidney function has remained normal at present. I know it was reduced to 75% during preeclampsia.

GP said the neph may do a biopsy. My concern was it was being caused by some other sinister underlying condition, but all my bloods are normal, so really don't know what's causing it. Hopefully will find out.

Sorry your function has declined I hope you get it sorted soon. How do you feel?

[leah86]

My protein is 2000g! Lol  which gp are u with? Ring reception an tell then u want some numbers.iv done that so when i go to the neph i can say dont waste my time with more bloodtests! Have u had a gfr or a egfr? Iv read they put you on a diet! I like food tho proper meat an 2 veg so that will b a bit meh x

[Sconnie]

Hi, I have just got back from my GP, she has given me a referral for a neph, I am going to ring in a minute and book it, my scan and bloods are all normal too, my urine spill over 24hrs was 350g or 0.350mg  She said average is 0- 0.1g.  Not sure if my heart problems has caused this or not, my heart is recovered now. that is just my Guess!   I just hope they get to the bottom of it and and its nothing sinister.

[leah86]

Sorry im not gettinh emails..Wow what a small world.im talking to folk on 'kidney friends' but there all on otherside of the world.my wee is 'foamy' but id describe it as bubbles not foam haha...anyway....i just got my appt for the neph,begining sept..i was sick of being told my bloods are normal.so i went to see MY gp.hes really black an white about everything.i asked him to give me some acctual numbers from lab.he said my gfr was 97 last sept lasts weeks was 62! I dont kno much about lab results but i kno that a big drop that quick isnt good! I hope the neph can give me some meds to slow it down...u see ur underlying cause must be from your heart probs.i have nothing at all! So what are they going to treat! Im not a worrier but i dont want to drop another 30 by next yr.i rang the receptionist today an made her give me step by step numbers on all of my blood tests.(the ones i speak to over seas cant belive you dont get a copy) anyway one result,my microalbuminura is 1254 mg/l i kno this is high but dont really get it....phewww sorry for long windedness! Haha message me on here if u like.chat soon

[Sconnie]

Me again! ACR stands for Albumin Creatine Ratio, Albumin is the Protein found in the urine.  I also have swelling of my eyes something in the AM too.  The filters of your kidneys shouldnt let protein through, as the protein molecules are too big to fit through the holes! they act like a sive.  If the filters are damaged by some disease they allow protein through that is needed in you blood, it can get worse over time and the underlying issue needs addressing.  IS you urine foamy?  mine is at times, the protein makes it foamy, thats how I knew I had protein in my urine so I went the doctors.

[Sconnie]

Hi, I had ACR test, 1st one was 98, the last one I just had was 198.  It is the amount of protein in your urine vs the creatine.  It like mine very abnormal.  I have just recently had kidney bloods done, and a kidney ultrasound.  All normal.  But i know they cant see filters on an ultrasound (they are too small) they were doing it to rule out tumours! I go back to my doctors this week, she said I will probably be referred to renal clinic, spilling protein through your kidneys will damage them more, so my GP said it needs to be sorted.  It can be caused by a number of other diseases, so they tested my for Lupus, Diabeatis, other autoimmune disorders, all normal.  So they are thinking its a primary disease of the kidneys itself.  I dont know for sure yet.  I did have heart failure through pregnancy and maybe thats caused some permanent damage.  I notice you live in Warrington.... I do too!

Make sure you follow it up, protein isnt good for the kidneys at all, need to find out the cause and get medication to help, especially if you are young.  

[leah86]

Acr result 107.4.what does this mean

[leah86]

Hi i went to see nurse for something unrelated(i need a calposcapy..dont kno how to spell it) but thats a different story..,,,,i mentioned my protein.she said it isnt normal,i did a dip stick test..off the scale! She went bk 4 yrs an i had high levels then.she said my last bloods wer normal but my urine pcr was v high/abnormal.im to go bk an see her friday,thinks she has sent for another pcr test,she said i was refered to renal clinic in january..but i never recived any apptment.depending on fridays results she will refer me back....
How are u doing.have u had futher tests yet? I shudnt worry but google dosnt come up with ANYTHING positive haha

[Sconnie]

I've done more urine tests, and also test my own urine it's always between +1 and +4.  My GP is going to refer me now. You should go back to your GP.  Have no other symptoms but my GP is saying its not normal.

[leah86]

*surely

[leah86]

Not made an appt with my gp yet..im not to worried but stil if protein is high aurely it carnt b normal.!? I only had 1 episode of high bp but consultant said i was to b induced just incase.! Ill keep posting when iv seen my gp :) x

[Sconnie]

I am having this same problem since the birth of my baby 2 years ago, I did have preclampsia and heart failure (recovered) but I continued with protein and now blood in urine, i am yet to be referred.  Have you got any further with your diagnosis?

[leah86]

Iv been for an ultrasound.....normal! One kidney was slightly larger but she said it was normal.next step back to gp for recent bloods an urine as gp hasnt got intouch.hopefully it was just preg related :)

[leah86]

thanks for the reply...iv recived an appt for an ultrasound scan on 12 feb.will keep u posted x

[Paderla Anitha, DNB]

Hello and hope you are doing well.

Understand your predicament. The most common cause of proteinuria is kidney damage resulting from diabetes and hypertension. Others could be due to urinary tract infections, immune disorders, trauma and cancer. Some of the chronic infections such as tuberculous kidney may require (IVU / IVP) intravenous pyelography / urography for diagnosis (as well as urine culture for tubercle bacilli.). Discuss these options with your consulting doctor.

He will ask for blood tests, urine culture, an x ray and an ultra sonogram of the abdomen. Sometimes he may ask for an Intravenous pyelogram and a CT scan.  

Hope this helped and do keep us posted.

[leah86]

p.s....my consultant is a pregnancy/fetal specialist.iv been under his care since 2009 when i found my baby had gross abnormalities  anyway he knows iv had protein for at least 2 yrs almost straight! We both thiught qit was purely b/c i was preg that my kidneys couldnt cope with extra waste(not sue if protein was present in 09.may b i could find ou) i went to see consultant about pcr results.only he wernt there so i seen some other lady doc who was more intrested in talking to my partner about the price per m2 for her extention(he was in work gear) when i got home b/c i was none the wiser i checked my note and in the back where blood an urine results from lab are kept i seen the heqding read: **ckd ks1 if other evidence of renal damage is present**
Astricks anall.i rang gp to discus as if frightend me.i cant remember what he said but he palmed me off! Thats y i was looking in to ckd..i know protein isnt the only/sure sign of renal damage or disease but surely to have such high readings for so long deserves more tests than blood an urine over and over again.plus ur kidneys dont leak protein for nothing do they? Xx so much for short story :/