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    Old 06-18-2004, 10:27 AM   #1
    girlinterupted
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    5000 + mg of protien in a 24 hr. period

    That is what my 24 hour urine test came out with. I am currently taking 1 mg. of fluid pill a day (sometimes twice a day) to relieve the swelling. My kidney function is fine, my blood pressure is better than normal, the sonogram of my kidney's came out great, so I am wondering what the heck is causing this. I am going to have a biopsy done next month.

    Anyone have any input or advice? I am really nervous about the biopsy, not so much the actual test, but the results.

     
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    Old 06-18-2004, 01:34 PM   #2
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    Re: 5000 + mg of protien in a 24 hr. period

    What this means is you have a problem at the level of the glomerulus of your kidney(s). The glomerulus is like a sieve which takes blood, filters it, and makes sure large molecules like proteins and cells don't get in to your urine. If there is a problem with the glomeruli, they get leaky, all sorts of stuff gets in to the urine that's not supposed to be there, and one of those things is a smaller protein called albumin. Do you happen to have swelling anywhere in your body? Have you noticed, maybe, that some days you wake up and your face is puffy? Press the skin in front of your shin with your thumb...does it leave an indentation?

    What you have with the severe degree of protein in your urine (normal is much less than 1g/day) is known as nephrotic syndrome. Nephrotic syndrome can be caused by many things. Nephrotic syndrome is ANALOGOUS (not the same, but similar) to saying you have an infection...it describes what you have, but it does NOT tell you what's causing it.

    Are you sure you don't have any other health problems? How old are you? Have you had any kidney problems in the past? Why did your doctor end up doing a 24-hr urine protein anyway? I'm asking that because your doctor must have suspected you had something wrong with by ordering that test in the first place.

     
    Old 06-20-2004, 06:15 AM   #3
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    Re: 5000 + mg of protien in a 24 hr. period

    Quote:
    Originally Posted by girlinterupted
    That is what my 24 hour urine test came out with. I am currently taking 1 mg. of fluid pill a day (sometimes twice a day) to relieve the swelling. My kidney function is fine, my blood pressure is better than normal, the sonogram of my kidney's came out great, so I am wondering what the heck is causing this. I am going to have a biopsy done next month.

    Anyone have any input or advice? I am really nervous about the biopsy, not so much the actual test, but the results.
    I was recently diagnosed with nephrotic syndrome and they are not sure of the cause for me. Like you, my kidney function tests are all normal, but in my first test I spilled 4300 mg/24 hrs.

    A biopsy is the only way that they can identify the precise cause of nephrotic syndrome. However, according to my nephroplogist, there is about a 70% chance that they will not learn anything from it. For this reason I have opted to hold off on the biopsy - but I have recently (for the past 4 months) been going through a dramatic lifestyle change (diet and excercise) because I was diagnosed as diabetic with high cholesterol. I decided to wait 6 months before a having a biopsy to see if my lifestyle changes have any effect on my test results. I have already reversed my diabetes, lowered my cholesterol to normal ranges, and lost 42 lbs. My 2nd 24 hour test (about 1 month later) revealed a 9% decrease in protein - at about 3900/24 - which is certainly a step in the right direction. I now have monthly lab tests that include a full renal panel and a 24 hour urine so the doctor can track my progress. Obviously if my condition does not improve further or progresses, I will have the biopsy.

    The causes of nephrotic syndrome (you can google any of these illnesses):

    Under age 40:
    Minimal Change Disease
    FSGS (Focal segmental glomerular sclerosis)
    Congenital nephrosis

    Over Age 40:
    Glomerulonephritis (GN)
    Diabetes

    Over Age 60:
    Amyloidosis

    Anyone:
    Bergerís disease
    Obesity

    From what I understand, there are not many treatment choices, regardless of what they find in the biopsy. Depending on what they find, immunotherapy is often prescribed, or treating the underlying cause becomes the focus. Diuretics and ACE inhibitors are often used to decrease edema and lower blood pressure (but these meds are really just alleviating symptoms!) My understanding is that they cannot necessarily reverse the condition, but they can slow or prevent progression. There is no doubt that you and I both have a much greater chance of renal failure occuring at some point in our lives.

    Did your doctor speak with you about your diet? I always explore natural ways to heal my body, so I started doing a lot of reading about the kidneys. The recommended consumption of protein is about 1 gram per kilogram of body weight (2.2 lbs), but for me this is too low (as a diabetic I must control my carb intake, and eating this little protein would cause me to eat too many carbs). You need to speak with your doctor about how much protein consumption is right for you. They can test the urea levels in your urine to see if you are consuming too much protein. Regardless, it would benefit you greatly to limit your protein intake to no more than 25 grams per meal - if needed, eat more often than 3 meals per day. Your body can really only properly metabolize 25 grams of protein at one time - eating more than that puts a tremendous strain on your kidneys. As a reference, an 8 oz steak has about 85 grams of protein and a 6 oz chicken breast has about 53 grams of protein! Also, I have read that blueberries have shown to improve kidney health - so try to eat blueberries every day!

    I am not in anyway suggesting that you should not have your biopsy. I have my own reasons for this, and I may decide to have it after all. You need to work with your doctor and do what is right for you. But if you would like to communicate with me through this thread I welcome it, because there are few people here that have this condition.

     
    Old 06-20-2004, 09:15 AM   #4
    butterflytrans
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    Re: 5000 + mg of protien in a 24 hr. period

    Hey Jdimassimo...wonderful post.

    If you have diabetes then that is the likely cause of your nephrotic syndrome. I noticed you wrote that that is more common in people over 40...I'm not sure where you got that because that is probably the most common cause of nephrotic syndrome I see in patients who are past adolescence.

    Now, I noticed that you wrote that things like ACE inhibitors are just there for symptomatic treatment. That's not true either because they are definitely playing a role in protecting the glomeruli. When you are hyperfiltrating protein across the glomeruli, you can eventually get glomerular hypertension which can lead to glomerular damage and sclerosis. The ACEi works to dilate the efferent arterioles thus lowering he pressure across the glomerulus and protecting the kidney from damage.

    I believe I was one of the lucky ones when I had a bout with nephrotic syndrome back about 10 years ago. I was only 14 then so the chances of it turning out to be minimal change disease was overwhelmingly high. They just put me on a course of prednisone, and thankfully my kidneys responded within 5 days. I was only on the prednisone for a total of 30 days. Lucky thing too--we all know that that drug can be quite nasty!

     
    Old 06-20-2004, 06:13 PM   #5
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    Re: 5000 + mg of protien in a 24 hr. period

    Quote:
    Originally Posted by butterflytrans
    Hey Jdimassimo...wonderful post.

    If you have diabetes then that is the likely cause of your nephrotic syndrome. I noticed you wrote that that is more common in people over 40...I'm not sure where you got that because that is probably the most common cause of nephrotic syndrome I see in patients who are past adolescence.

    Now, I noticed that you wrote that things like ACE inhibitors are just there for symptomatic treatment. That's not true either because they are definitely playing a role in protecting the glomeruli. When you are hyperfiltrating protein across the glomeruli, you can eventually get glomerular hypertension which can lead to glomerular damage and sclerosis. The ACEi works to dilate the efferent arterioles thus lowering he pressure across the glomerulus and protecting the kidney from damage.

    I believe I was one of the lucky ones when I had a bout with nephrotic syndrome back about 10 years ago. I was only 14 then so the chances of it turning out to be minimal change disease was overwhelmingly high. They just put me on a course of prednisone, and thankfully my kidneys responded within 5 days. I was only on the prednisone for a total of 30 days. Lucky thing too--we all know that that drug can be quite nasty!
    Thank you for clarifying about the ACE inhibitors - I guess I was just meaning that these medications won't actually cure NS, the really just protect the kidneys. But it was never explained to me exactly how they protect until your post - thank you for that!

    Actually, I am a newly diagnosed T2 diabetic and I have brought my glucose completely under control in the past few months. My nephrologist claims that I do not fit the pattern of typical diabetic NS - that I have not been diabetic long enough. Also, I was diagnosed with a mild case of proteinurea in 1998 (800 mg/24 hrs) and this was long before I had developed diabetes... which is why they believe that my condition might be caused by something else.

    Regarding the statistics I posted - these are posted on the Nephrology Channel website as the most common causes of NS for different age groups. I don't think they mean that these causes are only found in those age groups, but rather the most popular for those age groups.

    Did you have a biopsy? My nephrologist is recommending one, but I am resisting for a short time. I am more terrified of the procedure than of the results - quite the opposite of girlinterrupted! Again, my nephrologist does not want to put me on prednisone - he wants to see how I do on the Lisinopril and if my condition continues to improve over the next few months.

     
    Old 06-21-2004, 09:21 AM   #6
    girlinterupted
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    Re: 5000 + mg of protien in a 24 hr. period

    Quote:
    Originally Posted by butterflytrans
    What this means is you have a problem at the level of the glomerulus of your kidney(s). The glomerulus is like a sieve which takes blood, filters it, and makes sure large molecules like proteins and cells don't get in to your urine. If there is a problem with the glomeruli, they get leaky, all sorts of stuff gets in to the urine that's not supposed to be there, and one of those things is a smaller protein called albumin. Do you happen to have swelling anywhere in your body? Have you noticed, maybe, that some days you wake up and your face is puffy? Press the skin in front of your shin with your thumb...does it leave an indentation?

    What you have with the severe degree of protein in your urine (normal is much less than 1g/day) is known as nephrotic syndrome. Nephrotic syndrome can be caused by many things. Nephrotic syndrome is ANALOGOUS (not the same, but similar) to saying you have an infection...it describes what you have, but it does NOT tell you what's causing it.

    Are you sure you don't have any other health problems? How old are you? Have you had any kidney problems in the past? Why did your doctor end up doing a 24-hr urine protein anyway? I'm asking that because your doctor must have suspected you had something wrong with by ordering that test in the first place.

    To answer some of your questions, I am 32 years old. I have hypothyroidism, I currently take 225 mcgs of sythroid daily. I started having severe joint pain in my shoulders, and trying to figure out what was causing the pain, I underwent many tests. (over about 4 years) My family MD sent me to a bone specialist, who in turn sent me to a Rhumatoid doctor, he ran tests, all came back clear, then one day, while sitting at my desk, I felt my ankles swell. It was very weird. By the end of the day they were huge. I had no idea what was going on, so I called the Rhumatoid specialist and told him of this. He ran some tests and then put me on a fluid pill 1 mg. a day. Then the Rhumatoid doctor sent me to an internal medicine doctor, he ran tests looked at the severe swelling and couldn't believe how much fluid I was retaining (when you pressed on my ankle there was an indention of about 1 1/2" to 2") I kid you not. Then the internal med doctor sent me to the Raphalogist. He did a 24 hr. urine test, a sonogram, and LOTS of bloodwork. All but the protien test came back great. The Raphalogist explained to me that he had narrowed it down and it is for sure a kydney disease. What kind well, I guess the biopsy will determine that and what kind of medicine he will give me. I have to say, the fluid pills help a whole lot, unless I forget to take one. I was also told if the swelling is really bad that day to take 2 pills, one in the morning, and one in the evening.

    FORGIVE MY SPELLING, i AM AT WORK MULTI-TASKING AND HAVEN'T FIGURED OUT IF THEY HAVE SPELL CHECK ON THIS THING YET..

     
    Old 06-21-2004, 09:31 AM   #7
    girlinterupted
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    Re: 5000 + mg of protien in a 24 hr. period

    Quote:
    Originally Posted by jdimassimo
    I was recently diagnosed with nephrotic syndrome and they are not sure of the cause for me. Like you, my kidney function tests are all normal, but in my first test I spilled 4300 mg/24 hrs.

    A biopsy is the only way that they can identify the precise cause of nephrotic syndrome. However, according to my nephroplogist, there is about a 70% chance that they will not learn anything from it. For this reason I have opted to hold off on the biopsy - but I have recently (for the past 4 months) been going through a dramatic lifestyle change (diet and excercise) because I was diagnosed as diabetic with high cholesterol. I decided to wait 6 months before a having a biopsy to see if my lifestyle changes have any effect on my test results. I have already reversed my diabetes, lowered my cholesterol to normal ranges, and lost 42 lbs. My 2nd 24 hour test (about 1 month later) revealed a 9% decrease in protein - at about 3900/24 - which is certainly a step in the right direction. I now have monthly lab tests that include a full renal panel and a 24 hour urine so the doctor can track my progress. Obviously if my condition does not improve further or progresses, I will have the biopsy.

    The causes of nephrotic syndrome (you can google any of these illnesses):

    Under age 40:
    Minimal Change Disease
    FSGS (Focal segmental glomerular sclerosis)
    Congenital nephrosis

    Over Age 40:
    Glomerulonephritis (GN)
    Diabetes

    Over Age 60:
    Amyloidosis

    Anyone:
    Bergerís disease
    Obesity

    From what I understand, there are not many treatment choices, regardless of what they find in the biopsy. Depending on what they find, immunotherapy is often prescribed, or treating the underlying cause becomes the focus. Diuretics and ACE inhibitors are often used to decrease edema and lower blood pressure (but these meds are really just alleviating symptoms!) My understanding is that they cannot necessarily reverse the condition, but they can slow or prevent progression. There is no doubt that you and I both have a much greater chance of renal failure occuring at some point in our lives.

    Did your doctor speak with you about your diet? I always explore natural ways to heal my body, so I started doing a lot of reading about the kidneys. The recommended consumption of protein is about 1 gram per kilogram of body weight (2.2 lbs), but for me this is too low (as a diabetic I must control my carb intake, and eating this little protein would cause me to eat too many carbs). You need to speak with your doctor about how much protein consumption is right for you. They can test the urea levels in your urine to see if you are consuming too much protein. Regardless, it would benefit you greatly to limit your protein intake to no more than 25 grams per meal - if needed, eat more often than 3 meals per day. Your body can really only properly metabolize 25 grams of protein at one time - eating more than that puts a tremendous strain on your kidneys. As a reference, an 8 oz steak has about 85 grams of protein and a 6 oz chicken breast has about 53 grams of protein! Also, I have read that blueberries have shown to improve kidney health - so try to eat blueberries every day!

    I am not in anyway suggesting that you should not have your biopsy. I have my own reasons for this, and I may decide to have it after all. You need to work with your doctor and do what is right for you. But if you would like to communicate with me through this thread I welcome it, because there are few people here that have this condition.
    Thank you, your post is very informative. I wish you good luck and strength.

     
    Old 06-21-2004, 09:40 AM   #8
    girlinterupted
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    Re: 5000 + mg of protien in a 24 hr. period

    I wanted to add that my doctor told me, depending on the results of the biopsy, that I could be put on a steroid, and a chemo-type drug. Is this the predisone? I have read that this chemo-type drug is not like the drug given to cancer patients, but is similiar in the fact that it lowers your immune system.

     
    Old 06-21-2004, 10:04 AM   #9
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    Re: 5000 + mg of protien in a 24 hr. period

    Quote:
    Originally Posted by girlinterupted
    I wanted to add that my doctor told me, depending on the results of the biopsy, that I could be put on a steroid, and a chemo-type drug. Is this the predisone? I have read that this chemo-type drug is not like the drug given to cancer patients, but is similiar in the fact that it lowers your immune system.
    For one of the kidney diseases, Amyloidosis, they use a combination drug therapy with melphalan (a cancer drug) and prednisone (an anti-inflammatory steroid drug). It works by interrupting the growth of the abnormal cells that produce amyloid protein.

    I think that specific condition is one of the rarer kidney disorders and is more commonly found it people over age 60. There is no point in worrying about it until you know for sure... Stress makes it harder for the body to heal!

     
    Old 06-22-2004, 04:16 PM   #10
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    Re: 5000 + mg of protien in a 24 hr. period

    Just a quick update... I have been on lisinopril for 2 weeks now, and my protein has dropped almost 1000 mg (from 4000 to 3000)! I am not sure how this works, but is IS working... now I just hope that with time it will drop even further.

     
    Old 06-23-2004, 07:42 AM   #11
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    Re: 5000 + mg of protien in a 24 hr. period

    That is great!

    Are there many side effects with the lisinopril?

     
    Old 06-24-2004, 06:03 AM   #12
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    Re: 5000 + mg of protien in a 24 hr. period

    Lisinopril is a drug that belongs to the group known as ACE inhibitors. The most common characteristic side effects of ACEis are a cough and swelling of the lips (known as angioedema).

     
    Old 06-24-2004, 07:45 AM   #13
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    Re: 5000 + mg of protien in a 24 hr. period

    Lisinopril can also lower blood pressure, especially if its not high to begin with. This is a bit of a problem for me.

    The first week I was on it, my BP was running around 85/50 The lowest it went was 83/43 But I had no symptoms. now it has leveled off at around 90/60... but still the doctor is hesitant to increase my dosage, even though it may help my kidneys.

    Last edited by modert; 06-24-2004 at 07:45 AM. Reason: typos!

     
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