Low albumin level - advice

Hi

I was diagnosed with FSGS in february this year. Since that I have been on Prednisolon (strarted with 60mg a day and now I am on 20 mg/day) and later on also Enalapril for the blood preasure (even if it wasn't high it has helped me alot as it seems). Now the question that I hope someone has the answer to.
When I started the treatment my protein leakage was 3,6 g/liter and my blood albumin level was 24 (normal is 36-48 g/L). My leakage is now 0,16 g/L (!) but the albumin blood level is still only 28 (although I have almost no oedema). My doctor is very confused while my spillage has almost been eliminated. I have got a "second opinion" from another doctor and he also thinks this is strange even if he says that it might be caused by the fact that my kidneys are still "inflamed".

I have read that the blood albumin is replaced by the liver within 6 weeks, so If my leakage is almost gone why hasn´t my albumin level been stabilized?

What experiences do you have who are the real FSGS experts :-) ?

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I was wondering if you could tell what is "FSGS"? My mom has water retention in her legs, feet, abdomen and lungs. She also has been tested for albumin coming out of her kidneys into her urine. The diaretics she has been given cause her to have incredibly painful cramps in her hips and legs and it also makes her hands curl with cramping. I ended up on this cite looking for ways to deal with this for her. She has been given potassium and magnesium pills for the cramps, but it does not help. Any sharing of information is greatly appreciated!

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Hi alb levels will be low with fsgs it is apart of the condition along with things like high blood pressure my alb levels have been down to 17.You can give people alb like you give blood but this did not do me much good.My alb level is now 37 jan this year it was 23.You will probably find your protein levels low as these to things go hand in hand.Proyein should be 65-80 wit your alb level it is probably around 54.Hope this helps. take care john

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Interesting to hear John

Although I believe what you say, do you have a medical explanation to why the blood albumin level goes hand in hand with the condition even if the spillage is almost zero (if there is nothing wrong with the liver howcome the levels aren´t stabilizing?) ?

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Hi swtest1

Regarding FSGS and nephrotic syndrome, please visit the following links for an introduction:

http://en.wikipedia.org/wiki/Nephrotic_syndrome
http://en.wikipedia.org/wiki/FSGS

Nephrotic syndrome is the name of the symptom when spilling proteine and FSGS is one of the reasons.

Regarding the cramps it sounds similar to what I also had before looking for help. I still have cramps (for example today when painting, my thumb was "clued" to my palm :-)) but it has become better, most likely due to the fact that I have better blood values now. I belivee that additional intake of potassium and magnesium is a traditional treatment for cramps but I do not think that it is that effective when having kidney problems (perhaps anyone else can tell).

It does sound like a good idea for your mother to talk with a kidney specialist (I needed a biopsy to be diagnosed with FSGS).

Take care

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Hi, Crash:

Thanks very much for your information. It helped a lot in understanding FSGS. I will be speaking with my mother on Monday and will sit down to ask her to see a nephrologist. Her other doctor says that she has congestive heart failure causing all the edema, however, her doctor also told her that she has microalbuminuria. (I hope that I have spelled this correctly) I will keep you updated, if you're interested, in how things go.

Thanks again,
swtest

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It hasn't been stabilized because you are constantly spilling it, even though you do not have a lot of it. You're glomeruli are scarred, which are permanent. Imagine them as pasta strainers, and the water is protein.That is how I compare scarred kidneys to normal ones (normal ones just being a regular bowl).

6 weeks is far too long to have to wait to completely restore the albumin. The kidneys create urine every second, which means they are constantly filtering, in turn constantly spilling protein.

It is not odd to be well and have FSGS. The truth is, it is very possible to remain in partial remission or complete remission youre entire life. Not every case of it ends in ESRD, just like not everyone needs a transplant. Many people just have to be on medication their entire life. FSGS is so rare that most people dont know what to expect from it still.

I dont have edema either and I'm at +1. Ive been there for years. Im very happy about it. I was once at 20% renal function and now am at 100 % (without a transplant).

I'd like to think im an expert because Ive been through all stages and a million types of medications. If you have any questions, don't hesitate to ask. I hope this helps a little bit.

good luck and be well
Amanda

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I just wanted to share my experience with the albumin factor. I was diagnosed with MGN (falls under the nephrotic sydrome umbrella) in 2002. At that time my albumin figure was 11 and I was "spilling" 12 g protein. It took 10 months until my albumin figure normalized. By then, with the assistance of all the drugs, I was only "spilling 0.2 g. protein.

In my experience these kidney diseases have a mind of their own and test your patience. Good luck.

MacLean

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Thanks for your replies.

Still (I am a little bit stubborn :-))....

Wouldn't an old fashioned equation tell the difference/change of the albumin level in the blood?

Difference = X - Y- Z

X = Grams of albumin created by the liver each day
Y = Body albumin "consumtion" each day
Z = Protein spillage in the urine each day

As long as the difference is positive it sounds logic that the values should be stabilizing, or? And also, people that is spilling a lot (several grams a day), they wouldn't be alive after some weeks....

What is the hidden parmeter in the equation? Is the liver not creating the same amount of albumin when having FSGS (or the contrary, when having severe spillage, is the liver creating more albumin).

Amanda, that will be your homework for this week (I think I remeber that you are studying some medical stuff...) :-)

Thanx

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The difference is that the liver is creating albumin at a slower rate than what the body is losing in the urine.

And yes, someone would get very ill after a couple weeks. I went into shock the day my family took me to the emergency room, which is why we went. I had about a .6-.7 albumin in the blood.

If it helps, I am at a protein/creatinine ratio at 0.46 and my blood albumin is at a 2.4. I also have no edema. Looking at just the liver stand point, it would make sense that my albumin would be normal, but thats not all that is factored into it because I still leak protein everyday. I have not been in a normal range for albumin for more than 5 years. I am closer now and am creeping slowly to a normal rate. I'm not really sure what the last part of the equation is but I wish I knew.

Im not even sure there is a hidden part. If there is, it might be the amount of urine the kidneys make a day and how much it filters.

The kidneys process about 180 liters of blood a day, about 1.5 liters is created as urine. All that blood enters the kidneys, including the albumin within it. So looking at this, even though all that blood does not create urine, a lot of albumin is leaking through it even if that blood does not turn into urine.

Im not sure if this made sense or if it helped but I hope it did. Let me know what you think.

Amanda

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Unfortunately nothing with FSGS is linear. In other words, your protein leakage is just one of the reasons why your albumin is low, and simply decreasing the protein loss does not automatically increase the albumin levels.

One of the three hormones that the kidneys produce is erythropoietin--responsible for the production of red blood cells. When your kidneys are scarred and unhealthy, this hormone is not produced as well. Check out this link:

http://en.wikipedia.org/wiki/Erythropoietin

Also, my son just had to have a blood transfusion because he was severely anemic after having his kidneys removed. The doctors just explained to us that it takes 21 days for albumin levels to show a change on blood tests. So when you are reading lab results for albumin, it is more like a snapshot of your albumin 21 days prior.

The best way to get your albumin up is to increase your protein, but since you are likely on a protein restricted diet at this point, you would obviously have to talk to your doctor about that.

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Unfortunately the only way to be diagnosed FSGS is after a biopsy.

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Hi Magdelena (and the rest).

Actually I am not on a low protein diet, mainly because I am at an early stage of the disease (there are, as you might know also different oppinions from the expertise wether to go for the low protein diet).
My biopsy showed that only 1 out of 46 glomerulus were damaged (although it may not be representative for the whole kidney).

Using my values (metric), my Albumin/Crea index is 16 (g/mol) and blood albumin level is 28 (g/L). What is that translated to US?

Very intersting to hear about the 21 days before a change of the albumin level is visible in the blood test. Where does the Albumine hide during that time (a secret pocket? :-)). I never take a statement as a fact before I know some reasonable logic behind it (Perhaps a new task for you Amanda ;-))

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Hi,
I am so glad I discovered this forum.
I am really at a loss here, I have been told out of the blue by our surgery nurse that my albumin count in 12, I am diet controlled diabetic but losing weight and feeling healthy. She wants to put me on some high blood pressure tablets because one of the side effects is that they reduce the albumin count.. thingy.
I realise this sounds a bit childish but I have not taken these tablets. I have suffered from low blood pressure all of my life and now at 50 it has become normal. I do not want to go through those symptoms of fainting etc again it has been terrible.
Looking at your counts here it seems that 12 is not so bad after all and I wonder what you all think about the possibility that she might have jumped the gun a little. Grateful for any help, opinions or advice, I am at a loss to make any sense of this and everything I know or understand about this condition is what I have read on this forum today so thank you all for that, the nurse couldnt even manage that.

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OOOOOOh, this is all to complicated for me!

I'm CKD stage 4 diagnosed with FSGS. I have had it for 18 years but have been aggressively treated for only the past 5. I have kept all of my lab results, and going over them, I see that I have never had problems with high/low albumin levels. And my protein spillage has been anywhere from 3 grams to next to nothing. GFR remains around 23, creatinine around 2.3.

Regarding cramping, if you have CKD, I certainly question taking potassium as a remedy. High potassium levels are a real danger to renal patients. I know that immunosuppressants like cyclosporine (which I take) can leach magnesium out of your body, and that can lead to cramping, so my doctor recommended me taking the occasional magnesium supplement as needed, and I have found that to be very helpful.

It does appear that everyone's experience of FSGS is unique. I am struck by how many different stories there are from people who have been struck by this rather baffling affliction.

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Helo to every one, im diag. wid FSGS 1month before but till now there no any symptoms. First i come to know abt my protein level which is elevated and thn. Doctor ask me to Biopsy in which they detect FSGS now i dn't hav any idea so cud any one suggest me wot to do?

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We were told that the liver actually revs up in people with FSGS. Since the body is spilling more protein the liver is trying to produce more to make up for it, which in turn is why most people with FSGS have a high cholesterol level too. The liver is over producing to make up for what the body is spilling out. Just a thought to throw out there; we were told this by our Neph..

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Hello Amanda,
Thanx for your post. What medication do u think really helped you in restoring your renal functions to 100%. Also, how was your diet? Specifically what you ate or didnt eat? Activities? I was just prescribed prednisone for my FSGS and I am scared of the side effects!!...Thanks for ur response

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I think the prograf is what helped me the most. It was a combination of all the medications I was on that helped me become really healthy. I didnt just try to heal the FSGS, but make sure I was a healthy person as a whole. I tried to avoid extremely salty foods. I exercise at least 3 times a week. I also try to just drink water. Also, I made sure not to make the only concern of my day that I had FSGS. I pretty much forgot about it and went on with daily life as if i didnt have it. I'm not sure if this helps.

Best wishes
amanda

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