Aa
Fibrosis stage 3
I am really frustrated about my HCV and would appreciate advice on how to proceed further.
Last year in April I was diagnosed with HCV, viral load 1 million. Ultrasound normal. ALT and AST slightly elevated. CBC normal.
In January I wanted to start treatment but repeated PCR test showed UND, ultrasound normal, ALT slightly elevated and AST was normal. That was another clinic I went to. CBC normal.
I lived happily till last week, when I went to re-confirm UND in a different clinic. This time PCR showed HCV present with viral count of 500,000. ALT and AST more elevated (245 and 170). CBC normal. Doctor sent me to fibroscan. Fibroscan gave me a score of 9.9 - advanced fibrosis. I was shocked. Now I am awaiting my insurance approval for me to start treatment.
My BMI is 30 and I am 33 years old. I was very stressed after finding out about having advanced fibrosis. Doctor said biopsy is not required as it is for sure I have fibrosis, whatever the stage is.
But I am very convened about the fibroscan score. Should I accept this score and the fact that my liver is on fast track to cirrhosis now? Or should I see another doctor?
Last year in April I was diagnosed with HCV, viral load 1 million. Ultrasound normal. ALT and AST slightly elevated. CBC normal.
In January I wanted to start treatment but repeated PCR test showed UND, ultrasound normal, ALT slightly elevated and AST was normal. That was another clinic I went to. CBC normal.
I lived happily till last week, when I went to re-confirm UND in a different clinic. This time PCR showed HCV present with viral count of 500,000. ALT and AST more elevated (245 and 170). CBC normal. Doctor sent me to fibroscan. Fibroscan gave me a score of 9.9 - advanced fibrosis. I was shocked. Now I am awaiting my insurance approval for me to start treatment.
My BMI is 30 and I am 33 years old. I was very stressed after finding out about having advanced fibrosis. Doctor said biopsy is not required as it is for sure I have fibrosis, whatever the stage is.
But I am very convened about the fibroscan score. Should I accept this score and the fact that my liver is on fast track to cirrhosis now? Or should I see another doctor?
Hi Nan,
My insurance provider, Bupa International, seems to be referring to UK or WHO guidelines, while my doc showed me US guidelines. So I will appeal on several grounds. If things don't work, I will have to call my banker :)
My insurance provider, Bupa International, seems to be referring to UK or WHO guidelines, while my doc showed me US guidelines. So I will appeal on several grounds. If things don't work, I will have to call my banker :)
Since you live in Dubai, I assume that's why your insurance company does not consider Sovaldi a firstline treatment. (I'm sure the cost may have something to do with it, too). Your doctor will need to convince them that the treatment is more cost effective than hospitalizations as your liver disease progresses.
I wish you the best.
Nan
I wish you the best.
Nan
My insurance company is asking why Sovaldi is chosen as firstline treatment, because it's not firstline treatment. Awaiting for response from my doctor now. I wonder can I fight them back if they reject my treatment based on considering Sovaldi not firstline treatment...
Sorry, too early in the morning....
I thought you had treated, but I see that you are about to. But the rule of thumb still applies - all things being equal your F stage will decrease over tx, Then make sure to keep the progress going after tx.
PLEASE NOTE: no supplements during treatment!
But afterward, it would be a good idea to help restore liver.
Regular FibroScan monitoring will tell you all you want to know regarding your liver health from now on.
I thought you had treated, but I see that you are about to. But the rule of thumb still applies - all things being equal your F stage will decrease over tx, Then make sure to keep the progress going after tx.
PLEASE NOTE: no supplements during treatment!
But afterward, it would be a good idea to help restore liver.
Regular FibroScan monitoring will tell you all you want to know regarding your liver health from now on.
Sorry, I directed the above message to the wrong person, I meant to send it to you!
Mike
Mike
It is my understanding that the resorption of collagen in the liver occurs at a fairly constant rate after the trigger to fibrogenesis is switched off. The trigger to fibrogenesis is extreme oxidative stress, but this can be created by a number of different factors (HCV, HBV, Steatosis, Cholestasis, Alcohol abuse, and hepatotoxic prescription drug use). So, in fact fibrogenesis, or the secretion of scar tissue in the liver, is a separate process in the body, and not a direct action of the virus.
Ten years ago doctors swore that fibrosis was irreversible. But they did not see what was in front of their own eyes, that when some alcoholics quit drinking their fibrosis/cirrhosis stage reversed. Then INF treatment with pre and post tx biopsies showed them that fibrosis staging reversed even in patients that did not clear the virus, due to the fact the fibrogenesis trigger had been switched off during tx and the body's collagen resorption processes had been at work.
The collagen resorption process involves zinc metalloproteinases which chomp up the scar tissue like little pacmen.
The thing to watch is that any hepatoxic insults like drinking or hepatotoxic prescription drugs can keep the trigger switched on, so make sure you understand that eradication of the virus has little to do with your collagen load and its resorption by the body. In other words, there are a lot of things out there that can hurt your liver, and you want to give it a big break now so it can repair itself properly.
Ten years ago doctors swore that fibrosis was irreversible. But they did not see what was in front of their own eyes, that when some alcoholics quit drinking their fibrosis/cirrhosis stage reversed. Then INF treatment with pre and post tx biopsies showed them that fibrosis staging reversed even in patients that did not clear the virus, due to the fact the fibrogenesis trigger had been switched off during tx and the body's collagen resorption processes had been at work.
The collagen resorption process involves zinc metalloproteinases which chomp up the scar tissue like little pacmen.
The thing to watch is that any hepatoxic insults like drinking or hepatotoxic prescription drugs can keep the trigger switched on, so make sure you understand that eradication of the virus has little to do with your collagen load and its resorption by the body. In other words, there are a lot of things out there that can hurt your liver, and you want to give it a big break now so it can repair itself properly.
Hi Kim, Well, the more I read, the more questions I have. Since I'm pretty much computer illiterate, I can't find this question on my own. On this feed you mentioned on this feed that the liver has no nerve endings, so pain cannot be from the liver. Upper right quadrant pain has drove me to the doctor more than once over the years. And, with the physical exam, would hurt so much when doctor pressed in that area, it's been a few years so I don't remember the outcome of those visits . All m.d. Was aware of hep c ex. Could it be I was having some kind of flare up? In the liver? It was always a deep painful dull ache an keep me in bed for days, all this time, I was sure it was my liver failing. Are you saying that it probably wasn't my liver?? Thanks in advance, Kim.
I have got my fibrotest results today. My fibroscan showed F3, fibrotest showed f0 and A3. My question is, why is there difference in different tests? What is my true score then?
I think Jimmy and Mike have given you a good understanding of where your liver issue stands. They feel the FibroSure is a very credible source when determining staging. Really glad that you have decided to treat. Do keep us posted on status concerning insurance approval...Should you hit a snag, there are other options available.
Be well and stay healthy
~Kim
Be well and stay healthy
~Kim
Some more detailed information about signs and symptoms of HCV
and maybe easier to read
http://hepatitiscnewdrugresearch.com/chronic-hcv-symptoms.html
scroll down to
SIGNS AND SYMPTOMS OF HEPATITIS C WITHOUT CIRRHOSIS
SIGNS AND SYMPTOMS OF HEPATITIS C WITH CIRRHOSIS
and maybe easier to read
http://hepatitiscnewdrugresearch.com/chronic-hcv-symptoms.html
scroll down to
SIGNS AND SYMPTOMS OF HEPATITIS C WITHOUT CIRRHOSIS
SIGNS AND SYMPTOMS OF HEPATITIS C WITH CIRRHOSIS
It can be quite technical but if you have a good reading and understanding level this site may help you to understand a little better.
About Hepatitis C Online
Hepatitis C Online is a free educational web site from the University of Washington. The site is a comprehensive resource that addresses the diagnosis, monitoring, and management of hepatitis C virus infection.
http://www.hepatitisc.uw.edu/browse/all/core-concepts
If you select
2-4 Evaluation and Staging of Liver Fibrosis
Last Updated: January 16th, 2014 (As mhudnall mentioned since then (AASLD) endorsed it this year it as a more effective and more accurate method to monitor liver fibrosis).
further down the page see
transient elastography (FibroScan)
Transient elastography has been validated in multiple studies for detection of cirrhosis and has had varying sensitivities of 84 to 100% and specificities of 91 to 96%. Although liver biopsy remains the gold standard to assess liver fibrosis, transient elastography is a good non-invasive alternative for determining the presence or absence of cirrhosis. This technique may be somewhat limited in those with ascites, elevated central venous pressure, and obesity, as fluid and adipose tissue attenuate the echo waves.
______________________________________
There are also Indirect Markers of Cirrhosis scroll back up the page
First one is easy to calculate if you have your Aspartate Aminotransferase AST and Platelet results
Aspartate Aminotransferase-to-Platelet ratio index (APRI)
Overall, APRI has good diagnostic utility for predicting severe fibrosis/cirrhosis or low risk of significant fibrosis, but does not accurately differentiate intermediate fibrosis from mild or severe fibrosis. Thus, clinicians should use APRI in combination with other noninvasive markers of fibrosis.
The additional info needed for the FIB-4:is your age and ALT result
The FIB-4 is an easy-to-use, quick, and inexpensive test that provides results immediately. Results are generated utilizing age, AST, ALT, and platelet count
A threshold value of less than 1.45 has a sensitivity of 74% and specificity of 80% in excluding significant fibrosis. A threshold value of greater than 3.25 has a specificity of 98% in confirming cirrhosis. This model was good at excluding or confirming cirrhosis, but values between 1.45 and 3.25 did not fully discriminate fibrosis and would need an additional method to predict liver fibrosis.
Both of these calculators can be accessed by closing the popup page big X upper right side then clicking the Clinical Calculators tab at the very top right and selecting these on the left side.
There are more advanced blood test indirect markers like HepaScore and FibroSure.
I was Stage 2 Grade 2 biopsy 2012 up from Stage 2 Grade 1 in 2000 12 years earlier. In 2013 FibroSure. showed FS-FIBROSIS STAGE* (V2) F3 FS-ACTIVITY GRADE* (V2) A3 - Severe activity. later that year my doctor opinion was I was F3/F4 and before treatment very early F4
Wish you the best in getting treatment and achieving SVR with minimal side effects.
About Hepatitis C Online
Hepatitis C Online is a free educational web site from the University of Washington. The site is a comprehensive resource that addresses the diagnosis, monitoring, and management of hepatitis C virus infection.
http://www.hepatitisc.uw.edu/browse/all/core-concepts
If you select
2-4 Evaluation and Staging of Liver Fibrosis
Last Updated: January 16th, 2014 (As mhudnall mentioned since then (AASLD) endorsed it this year it as a more effective and more accurate method to monitor liver fibrosis).
further down the page see
transient elastography (FibroScan)
Transient elastography has been validated in multiple studies for detection of cirrhosis and has had varying sensitivities of 84 to 100% and specificities of 91 to 96%. Although liver biopsy remains the gold standard to assess liver fibrosis, transient elastography is a good non-invasive alternative for determining the presence or absence of cirrhosis. This technique may be somewhat limited in those with ascites, elevated central venous pressure, and obesity, as fluid and adipose tissue attenuate the echo waves.
______________________________________
There are also Indirect Markers of Cirrhosis scroll back up the page
First one is easy to calculate if you have your Aspartate Aminotransferase AST and Platelet results
Aspartate Aminotransferase-to-Platelet ratio index (APRI)
Overall, APRI has good diagnostic utility for predicting severe fibrosis/cirrhosis or low risk of significant fibrosis, but does not accurately differentiate intermediate fibrosis from mild or severe fibrosis. Thus, clinicians should use APRI in combination with other noninvasive markers of fibrosis.
The additional info needed for the FIB-4:is your age and ALT result
The FIB-4 is an easy-to-use, quick, and inexpensive test that provides results immediately. Results are generated utilizing age, AST, ALT, and platelet count
A threshold value of less than 1.45 has a sensitivity of 74% and specificity of 80% in excluding significant fibrosis. A threshold value of greater than 3.25 has a specificity of 98% in confirming cirrhosis. This model was good at excluding or confirming cirrhosis, but values between 1.45 and 3.25 did not fully discriminate fibrosis and would need an additional method to predict liver fibrosis.
Both of these calculators can be accessed by closing the popup page big X upper right side then clicking the Clinical Calculators tab at the very top right and selecting these on the left side.
There are more advanced blood test indirect markers like HepaScore and FibroSure.
I was Stage 2 Grade 2 biopsy 2012 up from Stage 2 Grade 1 in 2000 12 years earlier. In 2013 FibroSure. showed FS-FIBROSIS STAGE* (V2) F3 FS-ACTIVITY GRADE* (V2) A3 - Severe activity. later that year my doctor opinion was I was F3/F4 and before treatment very early F4
Wish you the best in getting treatment and achieving SVR with minimal side effects.
The FibroScan is accurate, and in fact it is much more accurate than biopsy. The FDA has approved it and the top liver docs at the annual liver meeting (AASLD) endorsed it this year it as a more effective and more accurate method to monitor liver fibrosis.
The fibroScan measures an area 100 times larger than a biopsy and takes an average of ten readings, so the biopsy is much more variable.
If you're banking on the FibroScan being wrong I think your should re-visit your thinking.
Mike
The fibroScan measures an area 100 times larger than a biopsy and takes an average of ten readings, so the biopsy is much more variable.
If you're banking on the FibroScan being wrong I think your should re-visit your thinking.
Mike
Kim, thanks a lot for support. Yes, medical support is sophisticated over here, but more in terms of facilities, not specialists (in the field of hepatology) I would say. That is one thing that made me want to fly to Germany and get the second opinion on what is happening to my liver, but then I decided it's better to start treatment right away. I just made a conclusion - blood test shows HCV is present - I need to kill this monster, and that's it.
Dubai? That's great hearing that you can get treatment there soon. It really is time to treat, and move on with your life. I believe they have sophisticated medical support in that country if I'm not mistaken. You will be as good as new.
Lets us know if you need assistance with side effects from the meds, or have other questions. If you just need basic info, you can type in the search box on the top right of this page, and you will get hundreds of questions answered.
Good luck with treatment and stay well
...Kim..
Lets us know if you need assistance with side effects from the meds, or have other questions. If you just need basic info, you can type in the search box on the top right of this page, and you will get hundreds of questions answered.
Good luck with treatment and stay well
...Kim..
Phew, I feel better now. Thanks a lot for explaining so clearly. I am a hypochondriac, which is not helping me at all.
But I decided not to wait for new drugs. At least because I am not sure when they will reach my location (I live and work in Dubai). So I will start treatment ASAP.
I don't drink alcohol at all, except for when I am on vacation and travelling, which is twice a year. But eating healthy is being a challenge - I love red meat, steaks, kebabs.
But I decided not to wait for new drugs. At least because I am not sure when they will reach my location (I live and work in Dubai). So I will start treatment ASAP.
I don't drink alcohol at all, except for when I am on vacation and travelling, which is twice a year. But eating healthy is being a challenge - I love red meat, steaks, kebabs.
No. Don't worry. They said you are F3. If they felt you had cirrhosis they would say so. Even lets say you have early cirrhosis it's still reversible, and I don't think you do at all. Being honest. What we were all trying to say to you is to take this seriously. The liver has no nerve endings so you are not feeling pain because your liver is cirrhotic. I know when I get anxious about my liver, it hurts too. Psychosomatic for me anyway.
What I would do is keep following up with your insurance. I noticed for others that when they were stalling, they would keep calling. I do believe ( my opinion) that you would also be fine waiting for the new meds that co e out in October. I am not a doc by any means, but do t feel your that far gone. Not for a 2nd.
While waiting tho, do not drink alcohol. Not one drop. Don't take meds either that react with the liver. Eat a clean healthy diet and stay active. It takes usually years for your liver to get bad, and your very young so that's in your favor.
Please don't worry, as that was not the intent. The message tho is be aware and get that virus eliminated. The treatment is not fun, but you will manage. Kinda feels like you have the flu, but hep c makes you feel that way also. Since I cleared the virus, I feel 100% better even with mild cirrhosis. I'm going for reversal of liver disease and doing everything possible to get there, and trust me I will. You will live a wonderful healthy life without the burden of Hep C.
We are all here to help if you have concerns. Your doc said you were F3, not cirrhotic. You are very very very lucky that you have caught this in time.
Stay strong
..Kim..
What I would do is keep following up with your insurance. I noticed for others that when they were stalling, they would keep calling. I do believe ( my opinion) that you would also be fine waiting for the new meds that co e out in October. I am not a doc by any means, but do t feel your that far gone. Not for a 2nd.
While waiting tho, do not drink alcohol. Not one drop. Don't take meds either that react with the liver. Eat a clean healthy diet and stay active. It takes usually years for your liver to get bad, and your very young so that's in your favor.
Please don't worry, as that was not the intent. The message tho is be aware and get that virus eliminated. The treatment is not fun, but you will manage. Kinda feels like you have the flu, but hep c makes you feel that way also. Since I cleared the virus, I feel 100% better even with mild cirrhosis. I'm going for reversal of liver disease and doing everything possible to get there, and trust me I will. You will live a wonderful healthy life without the burden of Hep C.
We are all here to help if you have concerns. Your doc said you were F3, not cirrhotic. You are very very very lucky that you have caught this in time.
Stay strong
..Kim..
Actually I sent for approval to my insurance company, as the treatment will be quite expensive, and I was told it may take up to a month to get approval.
Now I am really scared, so it means I already might have chirrosis or chirrosis is developing right now. Because I have been having dull pain on and off just below my right rib cage.
Now I am really scared, so it means I already might have chirrosis or chirrosis is developing right now. Because I have been having dull pain on and off just below my right rib cage.
Honestly it really doesn't matter at this point if your F2 or F3. Your liver is being damaged, and you need to stop it ASAP. If you get to cirrhosis, your liver may not return to normal. What I have found out thru reading about liver disease is that certain genotypes progress faster then others. That may explain why your liver tests have gotten worse. And, if you throw alcohol
( not saying you have ) in the mix you progress even more quickly.
I'm not sure about geno 1, but I'm geno 2 and slow moving. You need to find a good hep doc, and get moving. I have early cirrhosis, and my CBC is all normal, and my Ast and Alt are also normal. Like you, I have no symptoms.
I treated on the new meds with Sovaldi and Ribavirin in Jan and have cleared the virus. Prior to clearing, all my #s were slightly elevated. So you can see that the virus was causing damage before, but not now.
I hope you understand the urgency in which I'm sharing with you. You want an expert opinion, and may even opt for a 2nd opinion, but do try to get going on it. I'm not trying to scare you, but if you can avoid cirrhosis, and you can, seek guidance soon.
Be well
...Kim.
( not saying you have ) in the mix you progress even more quickly.
I'm not sure about geno 1, but I'm geno 2 and slow moving. You need to find a good hep doc, and get moving. I have early cirrhosis, and my CBC is all normal, and my Ast and Alt are also normal. Like you, I have no symptoms.
I treated on the new meds with Sovaldi and Ribavirin in Jan and have cleared the virus. Prior to clearing, all my #s were slightly elevated. So you can see that the virus was causing damage before, but not now.
I hope you understand the urgency in which I'm sharing with you. You want an expert opinion, and may even opt for a 2nd opinion, but do try to get going on it. I'm not trying to scare you, but if you can avoid cirrhosis, and you can, seek guidance soon.
Be well
...Kim.
Hi Doni
My platelet count didn't drop till about a year after I was diagnosed with cirrhosis. I was diagnosed in 2008 with cirrhosis and I really don't feel any different maybe a bit more tired. But I developed esophageal varicies that I had to have banded and also have swelling in my lower legs pitting edema. Generally you don't get a lot of symptoms till you have cirrhosis and even then they are kind of hidden if you aren't looking for them.
Good luck
Lynn
My platelet count didn't drop till about a year after I was diagnosed with cirrhosis. I was diagnosed in 2008 with cirrhosis and I really don't feel any different maybe a bit more tired. But I developed esophageal varicies that I had to have banded and also have swelling in my lower legs pitting edema. Generally you don't get a lot of symptoms till you have cirrhosis and even then they are kind of hidden if you aren't looking for them.
Good luck
Lynn
To be honest I still can't believe I advanced to stage 3. I understand that fibroscan has good reliability rate, but wouldn't there be other signs of this stage? Clinical signs, ultrasound and blood test results? Stage 3 would cause spleen size to increase right? And platelets would probably go down?
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