Help 2000mg protein levels..getting no where 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

[lillyrae]

Hi 2 years ago i started feeling sick and went of food my dr done a blood test and wrote to tell me i had ckd 3 and that my gfr was 57.I was horrified to get this letter through the post and thought i needed it explained to me. I made an ap to see him and he was offish said nothing to worry about we will do blood test every 6 months to check your levels..another symptom i had was i.l.s. so i looked up online about it and went on my own diet now my g.f.r. is 60..and im still on my diet that i do so am no worse in over 2 years ..as far as drs go they are useless and dont take kidney disease seriouly..Im still in disgrace of it all. im not the only person who feels like this...I hope you get the answers your looking for and try not to worry to much....

[Bet117 in reply to lillyrae]

What is i.l.s.? What diet are you on?

Thanks!

[defier]

Hi Leah, so sorry you are feeling ill and I hope you get a correct diagnosis soon. I've found GPs seem to know very little about kidney disease, so you will have to be very assertive and insist on more information and tests. My polycystic kidney disease was only discovered during a CT scan for something else. Big shock but I know I'm lucky-I'm nearly a pensioner and I've had a very healthy life up to now. I have never had high blood pressure or protein in urine, so they are by no means the only indicator of this particular illness. As Lillyrae says, once you have a diagnosis you can start to do your own research and help yourself. Some tests such as CT or MRI scans are expensive and medics don't suggest them lightly, so the fact that your consultant has suggested should be enough for your GP. Go on the 9th with a set of questions and ask WHY he isn't referring you for a scan.

Good luck!

[Bet117 in reply to defier]

Agreed!

[leah86]

Thanks for replys...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

[ROXE in reply to leah86]

Hi Leah,

I guess the easiest way to see how your kidneys are doing is in your blood, that is why you get the blood test done, and if you do have the results you should know how you are doing.

Every stage of kidney failure goes by the eGFR (estimated glomerular filtration rate is the precentage you have of kidney working properly) levels and the creatinine ones.

Just check your blood results for those levels

patient.co.uk/health/Estima...

Good luck to you!!

[Olemog]

Is there another GP you can see at the practise? some tend to listen more than others...I would recommend you buy a home BP monitor from a chemist shop. If your symptoms get really bad go to the local A&E.

Good luckx

[Pricklyp]

Hi Leah,

I hope by now you've been given some more help.

I too was found to be excreting way too much protein in my urine samples during pregnancy. Throughout pregnancy (my first and only pg) I was continually monitored, under consultant led care and regularly had to supply 24hr urine collections and give blood/be monitored to hear the baby's heartbeat etc. At 28wks I was given steroids to mature my baby's lungs and told I was likely to have a premature delivery. My consultant was reluctant to let my pregnancy go full term because of his concern for my health. I was given two membrane sweeps in pregnancy as the consultant wanted me to deliver my son earlier than my due date to relieve any possible stress on my kidneys because of the high protein output.

In the end, after my son was delivered and I had stopped breast feeding, I was referred to a nephrologist who did a kidney biopsy. The biopsy confirmed I had Chronic Kidney Disease and specifically MPGN Type 2, also known as Mesangiocapillary Glomerulonephritis or Dense Deposit disease. Apparently this is quite unusual for someone of my age to be diagnosed with. The condition is generally one which presents in the elderly. This condition means my kidneys just don't retain protein. Imagine kidneys are giant sieves and min have bigger holes than they should so e protein falls out instead of staying inside. Tis is why I leak so much protein. There are presumably other reasons why you might be leaking protein.

My advice to you would be to ask for a referral to a nephrologist if you continue to have hi levels of protein in your urine.

Hopefully though, the problem may just have been one of this pregnancy blips for you and your body may have returned to normal a while after pregnancy.

Mx

[Bet117 in reply to Pricklyp]

I agree. I was diagnosed with membraneous Nephropathy Stage 2. similar to you.

Excellent explanation as to how this works..

How and what are you doing with this?

Do keep in touch..

Bet

[leah86]

Thanks for reply.i went to ultrasound.all was normal but one was slightly larger.gp hasnt been back intouch so im going to book an appt an ask for recent blood an urine test an i will see what results are.hopefully it was all just preg related

[leah86]

Hi guys..i went to see the nurse over something else an mentioned my ultrasound being normal an iv had not futher contqct from gp for next steps.my baby is now 9 months.she did a dip stick..+4 she said its not right going on this long.she went bk to 2009 an it shoes protein then too.she said my last bloods wer normal but my urine pcr was v high/abnormal.she has sent another sample to the lab,im to go an discus results on friday.she said if its still wrong she will refer me to renal clinic...on my notes j was referd in january but never received any appt! So my question was why are my bloods normal but urine so abnormal? Am i just wired wrong? An what is the treatment for ur condition if any?

[hankshardscapes in reply to leah86]

What did your protein read in 09?

[leah86 in reply to hankshardscapes]

I can't remeber but I'm now stage 3b had biopsy and it's most likely minimal change,I've got not other problems of hb nor diabetes etc

[leah86]

Prickly the more i look into mpgn or ddd it looks likely.first i read it can be huge ammounts of protineuria with no underlying medical conditions then iv just come across a small paragraph about retinal changes ie yellow fatty deposits...which i have had for a few years now.im happy i have something to mention to the nurse on friday

[leah86]

Just a quick update.the normal bloods wernt so normal after all.gfr last sept 97.this one its 62! Microalbinum 1256!!! Serum creatine 98.neph appt on 5th sept

[leah86]

So booked in for a biopsy on 28th nov so.should have a diagnosis soon

[leah86]

Long story short...gfr is declining.now at 58.had a biopsy and they cant find anything! So its being sent to london to an electron microscope! Said it can take months for results! My neph said it can be good if they havent found anything so i pointed my gfr dropped 5 in 2 months! Just a wait an see game now i supose

[kithsirid]

High blood presure is not a dsiease , 1/3 the world population haS HIGH BP, GET your blood pressure CHECKED AND take MEDICINES TO CONTROL it , IF U IGNORE THE HIGH BP it might lead to several other problems,u can google and get satisfactory answers,

i have both high bp and ckd 3 cure ckd

only chinese doctors say can cure CKD

wish u can overcome the situation

[Crinkster in reply to kithsirid]

High BP is a disease. It's called hypertension.

[Bet117]

Hi Leah!

Hang in there and stay strong! GP' s are good but not specialists.

My thoughts are to see a nephrologist and what they have to say.

I was spilling .103 g of protein with no symptoms. Had my thyroid consultant not checked for protein by a whim, I would not have known.

I have a diagnosis now and still no symptoms to see. Protein spilling going up and plan to seek answers.

Don't be afraid...see the specialist!

Let me know what is said.

I care!