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    Old 09-21-2006, 05:06 AM   #1
    Charmed.1
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    What do all the #'s mean?

    I got a call from my rheumatoid specialist on Aug 28 with the bad news that I was Hep C positive. Since then I have seen my GP who confirmed the virus and a Gastroenterologist who just this week ran more blood tests for the genotype and has scheduled a ultrasound for next Tuesday. They have not given me any of the #'s from any of the tests. Should I be asking for these? How relevant is my knowing? I don't even know if any of the diseases that they have told me that I have, if in fact I really have. I am kinda confused.

     
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    Old 09-21-2006, 10:39 AM   #2
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    Re: What do all the #'s mean?

    Quote:
    Originally Posted by Charmed.1
    I got a call from my rheumatoid specialist on Aug 28 with the bad news that I was Hep C positive. Since then I have seen my GP who confirmed the virus and a Gastroenterologist who just this week ran more blood tests for the genotype and has scheduled a ultrasound for next Tuesday. They have not given me any of the #'s from any of the tests. Should I be asking for these? How relevant is my knowing? I don't even know if any of the diseases that they have told me that I have, if in fact I really have. I am kinda confused.
    It's always a good idea to ask for & keep a copy of all your own medical records. You do & should want to know all the numbers it's the only way you can make an educated decision about what to or not to do. I would want the ultrasound & a liver spleen scan as well both are simple & painless.

     
    Old 09-21-2006, 05:06 PM   #3
    sean
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    Re: What do all the #'s mean?

    dear charmed,

    DLMD is absolutely right. These are YOUR results, testing YOUR blood, and are entries in YOUR medical records. You can and should own copies of any and all blood tests, and you should learn how to read them. We can help with that.


    sean

     
    Old 09-22-2006, 04:12 AM   #4
    Charmed.1
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    Re: What do all the #'s mean?

    Then that is what I will do. I go for my ultrasound on Tuesday. I have had 3 babies so I am not upset about this at all. The doc talked like this is all he will need along with the blood tests to check my liver. Is that so? After all the reading that I have done I thought that a biopsy was necessary. I'm not complaining, really I'm not, I just want to make sure that everything is done to insure that I can get better. Thank you for talking to me. I feel better emotionally just knowing that there is a place that I can go and talk about this.

     
    Old 09-23-2006, 05:32 PM   #5
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    Re: What do all the #'s mean?

    Quote:
    Originally Posted by Charmed.1
    Then that is what I will do. I go for my ultrasound on Tuesday. I have had 3 babies so I am not upset about this at all. The doc talked like this is all he will need along with the blood tests to check my liver. Is that so? After all the reading that I have done I thought that a biopsy was necessary. I'm not complaining, really I'm not, I just want to make sure that everything is done to insure that I can get better. Thank you for talking to me. I feel better emotionally just knowing that there is a place that I can go and talk about this.
    Hi again,

    A biopsy is the most accurate way of judging the condition of your liver, and for tracking the progression of fibrosis, if there is any. It is not necessary, however--some folks never get one, and make whatever decisions about treatment or not, etc., without this tool. It is a personal choice.

    an ultrasound for liver fibrosis usually can only detect pretty gross, major changes in the liver. it is not considered nearly so useful as a biopsy for tracking intermediate stages of inflammation or fibrosis.

    I have had two biopsies and would not have chosen to begin tx if the second had not shown some progression since the first, three years earlier. still, there is at least a small risk associated with any invasive technique, and if you think you are absolutely going to treat, or absolutely going to wait a while and not treat, then adding biopsy results will not be of use to you.

    so, it's a matter of choice. more so now since just in the last year the fibrosure and actitest chemical markers have been developed to approximate what a biopsy can tell you. I have no personal experience with these, but I am intrigued by what i've been reading about them.

    hope this helps

    sean

     
    Old 09-24-2006, 08:30 AM   #6
    DLMD
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    Re: What do all the #'s mean?

    so, it's a matter of choice. more so now since just in the last year the fibrosure and actitest chemical markers have been developed to approximate what a biopsy can tell you. I have no personal experience with these, but I am intrigued by what i've been reading about them.

    hope this helps

    sean[/QUOTE]

    I had the Fibrosure test 2 years ago in 2004 & thought I would share my results. I hope it helps someone.

    6/11/04 My Fibrosure Biopsy Alternative Test Results:

    Here is what it said was out of range on my Fibrosure test the liver biopsy alternative as well as the rest of my lab work. The doctor basically just said you need to treat but acted like my lab work was basically ok no cirrhosis. Obviously I can see what is out of range although I am not exactly sure what some of it means or if I really need to treat now or if I can hold off a while longer. Tests done: HCV Fibrosure, CBC with differential / platelet; Comp. Metabolic Panel 14; Lipid Panel; Prothrombin Time (PT); AFP, Serum, Tumor Marker; PTT, Activated: TSH:
    Out of range results from above tests:
    On the Fibrosure test my Fibrosis score was 0.26 High Ref. range 0.00 - 0.21
    My Fibrosis stage FO - F1
    Fibrosis scoring scale used:
    0.00 - 0.21 no fibrosis
    0.21 - 0.27 stage FO - F1 - This is where mine was
    0.27 - 0.31 stage F1 - portal fibrosis
    0.31 - 0.48 stage F1 - F2
    0.48 - 0.58 stage F2 - bridging fibrosis with few septa
    0.58 - 0.72 stage F3 - bridging fibrosis with many septa
    0.72 - 0.74 stage F3 - F4
    0.74 Cirrhosis
    My Necroinflammatory Activity Score 0.53 High Ref. Range 0.00 - 0.17
    Necroinflammatory Activity Scoring Scale used:
    0.00 - 0.17 - grade AO no activity
    0.17 - 0.29 - grade AO -A1
    0.29 - 0.36 - grade A1 minimal activity
    0.36 - 0.52 -grade A1 -A2
    0.52 - 0.60 - grade A2 moderate activity This is where mine was
    0.60 - 0.63 - grade A2 - A3
    0.63 - grade A3 severe activity
    My Ast ( SGOT ) - 64 High Ref. Range 0 -40
    My Alt ( SGPT ) - 97 High Ref. Range 0 -40
    My INR 1.2 - Low Ref Range 2.0 - 3.5
    I am not sure what INR is this is what it says:
    INR reference interval applies to patients on anticoagulant therapy. Suggested INR therapeutic range for oral anticoagulant therapy: ( Stabilized anticoagulated patients )
    Routine Therapy: 2.0 -3.0
    Recurrent Myocardial Infarction or Mechanical Prosthetic Values: 2.5 - 3.5
    I have not a clue what any of that means except mine is low ?
    I take no blood pressure medicine or blood thinners ?
    My Prothrombin Time 13.3 High sec Ref. Range 8.8 - 13.0
    I am not sure what the above means ?
    Nuclear Medicine Liver - Spleen Scan Findings:
    Normal respiratory excursion of the liver and spleen are demonstrated. Uptake in the liver and spleen is homogeneous. There are no focal defects in either the liver or spleen. There is no shunting of the colloid to the spleen or bone marrow.
    Impression : Normal Liver Spleen Scan.
    Abdominal Sonogram Findings:
    The liver is normal in size & appearance, without mass or cysts. Flow in the portal vein is towards the liver. There are no dilated bile ducts. The proximal common hepatic duct measures 3mm. The gallbladder is normal without gallstones. No hydronephrosis was seen and there are no renal masses or cysts. The pancreas, spleen, & aorta are normal. There are no abnormal fluid collections in the abdomen. Too many other things to mention but they were all in normal ranges.
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    Old 09-25-2006, 05:44 AM   #7
    Charmed.1
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    Re: What do all the #'s mean?

    Ok. At the risk of sounding like a complete idiot, I have another question. What exactly is fibrosis? For some reason I can't comprehend a lot of what I'm reading. I normally consider myself somewhat intelligent, but lately I just don't know. I do know that I am willing to do what it takes to get well. I figure that I'll even get a bonus and conquer my smoking habit as well. I have decided that I will look at this as an opportunity for a new beginning. That is, if I'm treatable. I pray every day that I am not in the high percentage rate of people who don't even get the opportunity to try and beat this. Anyway, if you could help me understand, I thank you.

     
    Old 09-25-2006, 07:33 AM   #8
    sean
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    Re: What do all the #'s mean?

    Quote:
    Originally Posted by Charmed.1
    Ok. At the risk of sounding like a complete idiot, I have another question. What exactly is fibrosis? For some reason I can't comprehend a lot of what I'm reading. I normally consider myself somewhat intelligent, but lately I just don't know. I do know that I am willing to do what it takes to get well. I figure that I'll even get a bonus and conquer my smoking habit as well. I have decided that I will look at this as an opportunity for a new beginning. That is, if I'm treatable. I pray every day that I am not in the high percentage rate of people who don't even get the opportunity to try and beat this. Anyway, if you could help me understand, I thank you.
    Hello Charmed,

    as they say, there are no stupid questions. to NOT ask this one would have been very regrettable.
    Fibrosis is sort of the only reason to worry about hepc (or fatty liver, or many other liver conditions). It is the earlier stage(s) of what eventually can progress to cirhossis. It is sometimes called 'scarring' of the liver, although that term used to be reserved for cirhossis itself. and it's not really accurate, anyway.
    In fibrosis, the softer, healthy, functioning liver tissue is cell by cell crowded out by a tougher, fibrous mass. if it goes far enough, the liver can start to fail (decompensate), and this can progress to end stage liver disease and then to you-know-what.
    Cirhossis also increases the risk of the most deadly form of liver cancer (not that there are any 'non-deadly' forms). In fact, these cancers are unusual except when there is predisposing liver damage--cirhossis.

    Luckily for us, hep c produces fibrosis, but only gradually in most cases. the other symptoms or damage caused by hep c, such as damage to the finer blood vessels of the kidneys and possibly other organs, seem much less likely to be troublesome for most of us, so it is the fibrosis we most worry about.

    This is what a biopsy measures (inflammation and fibrosis), and what we hope to stop or reverse with treatment.

    It is also why we warn against drinking or smoking, since these have been shown to accelerate fibrosis in hep c carriers. Fatty liver, ditto. In fact some researchers theorize that the hep c virus itself is often (except for the unlucky minority) weak at damaging the liver except or until other liver stresses (such as the toxins in alcohol or tobacco) arrrive. Unfortunately for me, age over 50 is considered one of those independent stesses that can encourage fibrosis, so if you have hep c and are getting into later years, like me, liver damage sometimes can accelerate even though years had gone by with no real effect before.

    It is not clear whether treating the hep with interferon can reverse fibrosis. It may (pegasys has shown some more hopeful research results than has pegintron), or it may not, depending on the case. It does promise at least a temporary halt or slowing of fibrosis, but this may not be lasting--the research jury is still out on this issue, I'm sorry to say.

    hope all this is of some help.

    sean

    Last edited by sean; 09-25-2006 at 06:55 PM.

     
    Old 09-25-2006, 07:45 AM   #9
    sean
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    Re: What do all the #'s mean?

    Quote:
    Originally Posted by DLMD

    I had the Fibrosure test 2 years ago in 2004 & thought I would share my results. I hope it helps someone.

    6/11/04 My Fibrosure Biopsy Alternative Test Results:

    Here is what it said was out of range on my Fibrosure test the liver biopsy alternative as well as the rest of my lab work. The doctor basically just said you need to treat but acted like my lab work was basically ok no cirrhosis. Obviously I can see what is out of range although I am not exactly sure what some of it means or if I really need to treat now or if I can hold off a while longer. Tests done: HCV Fibrosure, CBC with differential / platelet; Comp. Metabolic Panel 14; Lipid Panel; Prothrombin Time (PT); AFP, Serum, Tumor Marker; PTT, Activated: TSH:
    Out of range results from above tests:
    On the Fibrosure test my Fibrosis score was 0.26 High Ref. range 0.00 - 0.21
    My Fibrosis stage FO - F1
    Fibrosis scoring scale used:
    0.00 - 0.21 no fibrosis
    0.21 - 0.27 stage FO - F1 - This is where mine was
    0.27 - 0.31 stage F1 - portal fibrosis
    0.31 - 0.48 stage F1 - F2
    0.48 - 0.58 stage F2 - bridging fibrosis with few septa
    0.58 - 0.72 stage F3 - bridging fibrosis with many septa
    0.72 - 0.74 stage F3 - F4
    0.74 Cirrhosis
    My Necroinflammatory Activity Score 0.53 High Ref. Range 0.00 - 0.17
    Necroinflammatory Activity Scoring Scale used:
    0.00 - 0.17 - grade AO no activity
    0.17 - 0.29 - grade AO -A1
    0.29 - 0.36 - grade A1 minimal activity
    0.36 - 0.52 -grade A1 -A2
    0.52 - 0.60 - grade A2 moderate activity This is where mine was
    0.60 - 0.63 - grade A2 - A3
    0.63 - grade A3 severe activity
    My Ast ( SGOT ) - 64 High Ref. Range 0 -40
    My Alt ( SGPT ) - 97 High Ref. Range 0 -40
    My INR 1.2 - Low Ref Range 2.0 - 3.5
    I am not sure what INR is this is what it says:
    INR reference interval applies to patients on anticoagulant therapy. Suggested INR therapeutic range for oral anticoagulant therapy: ( Stabilized anticoagulated patients )
    Routine Therapy: 2.0 -3.0
    Recurrent Myocardial Infarction or Mechanical Prosthetic Values: 2.5 - 3.5
    I have not a clue what any of that means except mine is low ?
    I take no blood pressure medicine or blood thinners ?
    My Prothrombin Time 13.3 High sec Ref. Range 8.8 - 13.0
    I am not sure what the above means ?
    Nuclear Medicine Liver - Spleen Scan Findings:
    Normal respiratory excursion of the liver and spleen are demonstrated. Uptake in the liver and spleen is homogeneous. There are no focal defects in either the liver or spleen. There is no shunting of the colloid to the spleen or bone marrow.
    Impression : Normal Liver Spleen Scan.
    Abdominal Sonogram Findings:
    The liver is normal in size & appearance, without mass or cysts. Flow in the portal vein is towards the liver. There are no dilated bile ducts. The proximal common hepatic duct measures 3mm. The gallbladder is normal without gallstones. No hydronephrosis was seen and there are no renal masses or cysts. The pancreas, spleen, & aorta are normal. There are no abnormal fluid collections in the abdomen. Too many other things to mention but they were all in normal ranges.
    How do, DLMD?

    Here's my completely unqualified, unprofessional, and sincerely ignorant reading of your info:

    The liver condition indicated here is kind of benign (comparatively speaking, of course--we'd all rather everything was 'normal'), but you probably already realize that. The prothrombin time relates to a common result of hep or other liver problems, namely that blood clotting is slowed. BUT, this is not necessarilly an issue, especially when the result is so modestly out of range as yours. Longer prothrombin time is also related to lowered heart attack risk. In fact, this is why docs prescribe aspirin or other non steroidal anti- inflammatory drugs as a cardio preventive measure: they lengthen prothrombin time and therefore slow blood clotting (this leads to lower risk of dangerous clots like those that we call thrombosis--heart attack.)

    So, I think you're pretty healthy for one of those poor, frightening hep c victims. Like most of us, actually. Thank god.

    sean

     
    Old 09-25-2006, 09:42 AM   #10
    DLMD
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    Re: What do all the #'s mean?

    Thanks I'm about ready to get it done again to have something to compare to 2 years later.[ REMOVED ]
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    Last edited by moderator2; 09-26-2006 at 06:11 AM.

     
    Old 09-26-2006, 08:20 AM   #11
    Charmed.1
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    Re: What do all the #'s mean?

    Quote:
    Originally Posted by sean
    Hello Charmed,

    as they say, there are no stupid questions. to NOT ask this one would have been very regrettable.
    Fibrosis is sort of the only reason to worry about hepc (or fatty liver, or many other liver conditions). It is the earlier stage(s) of what eventually can progress to cirhossis. It is sometimes called 'scarring' of the liver, although that term used to be reserved for cirhossis itself. and it's not really accurate, anyway.
    In fibrosis, the softer, healthy, functioning liver tissue is cell by cell crowded out by a tougher, fibrous mass. if it goes far enough, the liver can start to fail (decompensate), and this can progress to end stage liver disease and then to you-know-what.
    Cirhossis also increases the risk of the most deadly form of liver cancer (not that there are any 'non-deadly' forms). In fact, these cancers are unusual except when there is predisposing liver damage--cirhossis.

    Luckily for us, hep c produces fibrosis, but only gradually in most cases. the other symptoms or damage caused by hep c, such as damage to the finer blood vessels of the kidneys and possibly other organs, seem much less likely to be troublesome for most of us, so it is the fibrosis we most worry about.

    This is what a biopsy measures (inflammation and fibrosis), and what we hope to stop or reverse with treatment.

    It is also why we warn against drinking or smoking, since these have been shown to accelerate fibrosis in hep c carriers. Fatty liver, ditto. In fact some researchers theorize that the hep c virus itself is often (except for the unlucky minority) weak at damaging the liver except or until other liver stresses (such as the toxins in alcohol or tobacco) arrrive. Unfortunately for me, age over 50 is considered one of those independent stesses that can encourage fibrosis, so if you have hep c and are getting into later years, like me, liver damage sometimes can accelerate even though years had gone by with no real effect before.

    It is not clear whether treating the hep with interferon can reverse fibrosis. It may (pegasys has shown some more hopeful research results than has pegintron), or it may not, depending on the case. It does promise at least a temporary halt or slowing of fibrosis, but this may not be lasting--the research jury is still out on this issue, I'm sorry to say.

    hope all this is of some help.

    sean


    Ok, that clears up some of the fog, thank you.
    I just received a copy of one of my earlier labs and again....lol....confusion. I went this morning and had an ultrasound and I won't know the results until Oct. 10th. At that time they will tell me the type, etc... My dad died of pancreatic cancer and my mother said that he also had liver disease and liver cancer. Because of this, am I more likely to progress in that direction quicker?

    I don't really know what all of these #'s mean either. The copy is really bad which doesn't help.
    AST (SCOT) 43
    ALT (SCFT) 42 These appear to be only slightly elevated.
    Quantitation is 4,800,000
    HCV Log10 is 6.868
    International Units is 1,640,000
    IU Log10 is 6.255

    Prothrombin Time (PT)
    INR 1.0

    This is pretty much all that is on the only page that they gave me. We think that I may have had hep c for about 19 years. I can't believe that I've been through 3 major surgeries and noone caught the virus being there.

    Being able to talk to you has been a godsend. Thank you for being there and for answering my questions. I know that you have your own nightmare and the fact that you take time for me is pretty awesome. Thank you.

     
    Old 09-26-2006, 01:30 PM   #12
    sean
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    Re: What do all the #'s mean?

    Quote:
    Originally Posted by Charmed.1
    Ok, that clears up some of the fog, thank you.
    I just received a copy of one of my earlier labs and again....lol....confusion. I went this morning and had an ultrasound and I won't know the results until Oct. 10th. At that time they will tell me the type, etc... My dad died of pancreatic cancer and my mother said that he also had liver disease and liver cancer. Because of this, am I more likely to progress in that direction quicker?

    I don't really know what all of these #'s mean either. The copy is really bad which doesn't help.
    AST (SCOT) 43
    ALT (SCFT) 42 These appear to be only slightly elevated.
    Quantitation is 4,800,000
    HCV Log10 is 6.868
    International Units is 1,640,000
    IU Log10 is 6.255

    Prothrombin Time (PT)
    INR 1.0

    This is pretty much all that is on the only page that they gave me. We think that I may have had hep c for about 19 years. I can't believe that I've been through 3 major surgeries and noone caught the virus being there.

    Being able to talk to you has been a godsend. Thank you for being there and for answering my questions. I know that you have your own nightmare and the fact that you take time for me is pretty awesome. Thank you.

    Hi again. Your numbers are indeed only slightly elevated. If you got a viral count, you should also have been told your virus's gneotype. I happen to think this is one of the only truly useful blood test results, since genotyping is predictive of possible 'success' in treatment.

    by the way, I don't know when your surgeries were, but it is quite possible that they took place before there were any useful tests for hepc. so don't be too hard on them yet. on the other hand, if the surgeries were sometime in the last several years, somebody should certainly have been testing you for possible hep and for hiv, too (only with your permission).

    sean

    Last edited by sean; 09-26-2006 at 06:07 PM.

     
    Old 09-26-2006, 03:11 PM   #13
    Charmed.1
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    Re: What do all the #'s mean?

    Quote:
    Originally Posted by sean
    Hi again. Your numbers are indeed only slightly elevated. If you got a viral count, you should also have been told your virus's gneotype. I happen to think this is one of the only truly useful blood test results, since genotyping is predictive of possible 'success' in treatment. as for this.

    by the way, I don't know when your surgeries were, but it is quite possible that they took place before there were any useful tests for hepc. so don't be too hard on them yet. on the other hand, if the surgeries were sometime in the last several years, somebody should certainly have been testing you for possible hep and for hiv, too (only with your permission).

    sean

    The nurse told me today that it takes 14 days to get the genotype test back because they have to send it to California. So I should have that back next Tuesday.

    The surgeries were 10 yrs ago, 8 yrs ago and last summer. So I don't know why noone has told me until 3 weeks ago. I don't know what to think. I'm gonna request my records from that last surgery at least.

     
    Old 10-10-2006, 05:11 AM   #14
    Charmed.1
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    Re: What do all the #'s mean?

    Quote:
    Originally Posted by sean
    Hi again. Your numbers are indeed only slightly elevated. If you got a viral count, you should also have been told your virus's gneotype. I happen to think this is one of the only truly useful blood test results, since genotyping is predictive of possible 'success' in treatment.

    by the way, I don't know when your surgeries were, but it is quite possible that they took place before there were any useful tests for hepc. so don't be too hard on them yet. on the other hand, if the surgeries were sometime in the last several years, somebody should certainly have been testing you for possible hep and for hiv, too (only with your permission).

    sean

    Hi again. This week I found out that I am a "2b". I guess that this means that tx is in order. A very big part of me wants to start right away so that I can get this over with. I tired of being tired and sick ofI being sick. Know what I mean? I get to talk to the doc today. Keeping my fingers crossed!

     
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