struggleing to find diagnosis even with biopsy!

[leah86]

Anyone had no results on a biopsy?its no iga ect ect so they are sending my tissue to an electron microscope? What kind of things are they now looking for? Im still in very good health.long story short..iv had +3/4 protein loss over 3 yrs(threw 2 pregnancys) my gfr 11 months ago was 97 then 62! Big drop so refered to neph.i have no hbp or diabetis.2 months ago gfr 62.now 58! The neph who sid my biopsy said its good they havent found anything! I said how is it if gfr is still dropping rather quick!? She seems to think the 4 drop is discrepanceys (spelling) in 2 different labs.have just had blood work done at origonal lab to see if its truely 58 or still 62!! Anyway any replys/personal storys an issues like me(otherwise healthy) greatly receved

[ShiftYourFate]

I hope you discover the "why" soon so you can focus on the "what next?"
I've been a Chronic Kidney Disease (CKD) patient for many years. I discovered that it was far more important for me to spend my time on slowing the progression while planning my future.
It was not so much about the "why," as it was about the "what." What I would do if/when I dropped below 20 GFR. Planning your future can empower your process. It's like bringing an umbrella even though you're not sure if it's going to rain.
The worst thing a CKD patient can do is "wait, watch and worry," -- or spend excessive time on the "why, why me, why now...etc." The best thing is for you to "focus forward" and learn as much as you can about the "worst case scenario" so you can plan and prepare for the "best possible outcome." This is what I did, and others have done -- and we are now living our best lives ever.

[Chris In Trowbridge]

i also feel fine, last may 2012 my gfr was 82, then in december was 61, a big drop of 21, doctor said just come back in 3 months for another blood test(they not even tested my kidneys for disease or anything yet, is that normal), and said dont worry, easier said than done, i have lost over a stone in just 3 weeks worrying and scared to eat anything in case its bad for kidney, and only 56KG now, but i want to know why its dropped so qucikly, and to plan, at this rate i will be in endstage in a few years or less, has anyone else here ever had a drop like this and then it stay stable, or is this going to be a steady fast decline ? doctor said loads of people are in stage 2, i said yes, but alot of them are in there 70's etc, i am just 50, Leah, have yo heard anything yet ?

[SKM23435]

Interestingly our local lab report any eGFR between 100-60 as "eGFR>60".
No more detail than that. They do give a creatinine result.
In general terms they feel that with a normal creatinine you don't need to worry as long as your eGFR>60.
It's important for all of us, what ever our blood results to keep active, eat a healthy diet and have our blood pressure under control.

[wagolynn]

Hi Chris in Trowbridge,

Blood tests are a very effective way of detection kidney problems, any failings in your kidneys will show up in these tests.

If you eat a well balanced diet, as per the current medical advice (five a day etc.) you will not damage your kidneys.
Americans may be advised to reduce protein intake but this is because they tend to eat excessive amounts of protein, the UK national protein intake is ok.
I cannot think of a ‘normal’ food that will damage kidneys. The diet restrictions applied to the later stages of kidney failure are there because the kidneys are not performing their usual functions, not to protect the kidneys.

Regular exercise will tend to keep your blood pressure down this is very good for kidneys healthy or otherwise.

Worry is certainly not going to make you better quite the reverse.

[leah86]

I tryed to get hold of liverpool who requested last bloods,no avail...i asked gp,she downloaded them printed me a copy and faxed them to liverpool(im in warrington) says gfr 73! B fab if it is but there is a test called anion,thats low (3) i read its rare for that to be low an usualy sugests lab error so im thinking all bloods are out? Iv got clinic mid feb so hopefully biopsy results will b in by then,an repeat bloods.gfr>60 is normal if no other signs of kidney disease ie protein loss ect

[Chris In Trowbridge]

Thankyou all for replys people, yes doctor initially told me that >60 was within normal range, but it aint really is it, as a gfr of 60 is 40% kidney loss, i think like i said before, if you are like 70 or like my dad 80, a gfr in that range might not matter so much, as at that age there is a allowance of a 1 or 2 points a year drop as you get older, in fact my dad is at gfr 57 and stable i think, what concerns me is the big drop, as NICE does say, if gfr drops by more than 5 in 1 year or 10 in 5 years there is a real concern and should be investigated, and mine dropped over 20 in just over a year, and reference diet, i have been eating ok, except i think i must have been eating way to much protein over the years, as they say to eat like 0.8g per kilo weight, thats like just 44g protein, thats like just 5oz chicken or beef i think, then you got all the other protein in your diet, so you may be able to eat like 2 or 3 oz of meat, i reckon i sometimes was eating like 100g a day total, just a 12 oz steak is almost a 100g, even my chicken jalfazai had like 10 big bits of chicken in, bet that was well over 100 anyway, my point being, its actually quiet hard to eat just 44g a day, i know at later stages its something like 12g a day, i just find it very hard to eat more than 800 calories a day, and i should be eating like 1700 or more, then they say just eat sweets and cakes to give you extra calories, but then they have all the stuff in your not meant to be eating, or is that at later stages of ckd ?, i know i am just thinking to far ahead, thx again for replys.

[leah86]

Are u loseing protein from urine? Thats ALWAYS a symptom of kidney disease.iv been leaking 2000g+ a day for 3/4 years an only mid year 2013 i TOLD gp to refer me to a nephroligist.lots of gp dont tqke early stages serious! Sounds silly but i cant wait to get my diagnosis then i kno whats what praying for minimal change(if that hasnt been ruled out by normal microscope testing?)

[Chris In Trowbridge]

Doctor has not done any tests on me yet, tomorrow i see another doctor, then i will ask for protein test(i do have white bubbles in urine, sort of frothy, but only near the sides of bowl, not completly covering the surface), so can some people have a drop of 20+ gfr in a year and still not end up at stage 4 or 5 ? because i am like 2 points from stage 3 in just over a year, my doctor just does not seem worried yet, strange.

[MatthewC]

doctor initially told me that >60 was within normal range, but it aint really is it, as a gfr of 60 is 40% kidney loss.

Not really; just because eGFR is less than 100 does not necessarily mean that you are ill at all. You might find this website helpful: http://www.renal.org/information-resour ... bswt5.dpbs. The key phrase on Stage 1 or 2 CKD is "Patients have normal or near-normal GFR, but have other evidence of renal disease" (my emphasis).

As a recent donor, my eGFR four weeks ago was 50 - technically that makes me Stage 3 CKD but I am in fact perfectly well and have no other evidence of renal disease, so I'm not Stage 3! I doubt that my eGFR will ever get back to 60 but so what? Pre-op I was variously about 70-80 and my actual GFR was 82, so don't look on anything under 100 as meaning "CKD".

[wagolynn]

Hi Chris,
To help get things in perspective, kidney function drops to about 12% before dialysis is considered (in this area any). The figure for eGFR is only an estimate and is prone to errors; it does not tell the whole story anyway, your full blood data has to be considered.
As I understand it, for your age 60% is ok. During our lives kidneys suffer damage but because they are well on top of their job we just do not notice.

Protein – I think the quoted figures for the amount to be consumed are talking about First class protein (meat etc.) rather than the lower grade stuff found in other foodstuffs. Again the protein does not have any significant effect on your kidneys; it is the waste products from the protein that is the problem due to the malfunctioning kidneys not removing it. In the later stages the problem is keeping protein and food intake up enough to maintain the body due to a lack of appetite; hence a lot of the figures quoted are minima.

I would suggest you do not make any major changes until you are advised to do so by a Nephrologist.

Food is a playground for cranks and weirdoes, especially on the internet; it is easy to make people feel guilty about what they eat.

[leah86]

Doctor has not done any tests on me yet, tomorrow i see another doctor, then i will ask for protein test(i do have white bubbles in urine, sort of frothy, but only near the sides of bowl, not completly covering the surface), so can some people have a drop of 20+ gfr in a year and still not end up at stage 4 or 5 ? because i am like 2 points from stage 3 in just over a year, my doctor just does not seem worried yet, strange.

I dont kno,im in same boat,mine dropped 35 in 10 months! Think i will only kno once my biopsy results are in,i had trouble finding people like ourselves who have no other medical health problems,im going from experiance...which is not a lot yet haha so i have no idea! Im hoping it platos an stays where it is for 20/30 years p.s im 27

[leah86]

Anyone with any input to my question? Sending biopsy to electron microscope? Im not worried,just curious

[Chris In Trowbridge]

Thankyou to all of you again for replys, and good advice, sorry i have been late with my reply, but have been reading everything i can about CKD, this is a great forum, already read for hours over the days here, i guess i just need to get my head around the big gfr drop i have had, and hope i find out why, must be a reason, matthew thx for links, also you did have a gfr at over 80 that is good for someone at 60 years old, mine just 60 at 50 years old for no reason as far as i can see, and most of my friends of my age are still in the 90's, i think ckd 1 and ckd 2 numbers are relating mainly to people in there 60's,70's, etc, so drops are age related, as kidneys do loose % over time as you get older, and i would not even be worrying if mine was going down 1 or 2 gfr a year, oh, and a great thing you done for your brother by the way, what started me to worry from the start was, when i seen the following, NICE does say, if gfr drops by more than 5 in 1 year or 10 in 5 years there is a real concern and should be investigated, thx again people.

[MatthewC]

what started me to worry from the start was, when i seen the following, NICE does say, if gfr drops by more than 5 in 1 year or 10 in 5 years there is a real concern and should be investigated, thx again people.

But as wagolyn says above, eGFR is an estimate, not an accurate figure, so you would want to see a set of consistently low eGFR figures before worrying when you are in the higher range. If you only have a single annual figure then I think that a variation of 5 or 10 or even more is quite common when looking at the higher range: according to PatientView I had two eGFR figures as low as 60 before the op, which is clearly not true as they would not have let me donate if it was. Funny thing was that those are the only two on PatientView from my brother's hospital (although I had bloods done at least five times), whereas all the others (the higher ones) were from mine where I had the donor tests done.