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Fibroscan results
Hello all, Im from Canada to give the question some context,
I finally made it to a specialist today after 2 years of waiting, we need to get a new referral every time we move and wait 6 months to a year. This time we were able to see an intern who is studying internal medicine and liver disease. Had a consultation and was given a fibroscan, scored 5.1 in one area and a 9 in another.
I was concerned about the 9 and asked about treatment since viral load is fluctuating between 50000 and 200000 ul/ml with alt and ast normal. I was told that I am not eligible for treatment until both viral load and alt ast are above normal and or I need to have fibrosis progression to f3/f4
so a 9 is F3 and when I asked about this I was told that because my last reading was much lower and because they were using a medium prob instead of a small probe that they were extrapolating the value and that its probably much lower than it reads.
When I asked if we could get a smaller probe the answer they gave me was that they are 80k
I will need to wait to see if a heptologist 8 hours a way will see us and then we will have to wait probably another year for an appointment. Its been 2 years since the last proper scan.
We were told that because the reading was so high that we will need to monitor blood every 3 months, which is good but I was under the impression that blood test don't always catch fibrosis in time, and in this day and age I am not sure why we are relying on old technology that has been proven to be inferior. The Dr. Insists that they would see it in the blood if there was fibrosis damage and that the progression would take many many years.
Im not just worried about cirrhosis, Im also worried about liver cancer with high viral load.
What do you think? is extrapolation using the wrong size probe good enough?
Does anyone have any suggestions on what type of conversation I should have with the Dr.?
or is this all normal and I am just worrying way to much?
I finally made it to a specialist today after 2 years of waiting, we need to get a new referral every time we move and wait 6 months to a year. This time we were able to see an intern who is studying internal medicine and liver disease. Had a consultation and was given a fibroscan, scored 5.1 in one area and a 9 in another.
I was concerned about the 9 and asked about treatment since viral load is fluctuating between 50000 and 200000 ul/ml with alt and ast normal. I was told that I am not eligible for treatment until both viral load and alt ast are above normal and or I need to have fibrosis progression to f3/f4
so a 9 is F3 and when I asked about this I was told that because my last reading was much lower and because they were using a medium prob instead of a small probe that they were extrapolating the value and that its probably much lower than it reads.
When I asked if we could get a smaller probe the answer they gave me was that they are 80k
I will need to wait to see if a heptologist 8 hours a way will see us and then we will have to wait probably another year for an appointment. Its been 2 years since the last proper scan.
We were told that because the reading was so high that we will need to monitor blood every 3 months, which is good but I was under the impression that blood test don't always catch fibrosis in time, and in this day and age I am not sure why we are relying on old technology that has been proven to be inferior. The Dr. Insists that they would see it in the blood if there was fibrosis damage and that the progression would take many many years.
Im not just worried about cirrhosis, Im also worried about liver cancer with high viral load.
What do you think? is extrapolation using the wrong size probe good enough?
Does anyone have any suggestions on what type of conversation I should have with the Dr.?
or is this all normal and I am just worrying way to much?
I think you need to have a clear picture of your liver. What's your fibroscan history throughout the years? I don't know how Hep E influences this, but having HBV too, I would act now and go see a specialist as soon as possible. I would personally not wait until F3-F4. You can never know how each one of us reacts long term and acting earlier on, would maybe save preventable complications. As a word of encouragement, I went from 8.6 to 5.5- 6 in less then a year. (Not sure if mine was real, or was inflammation too due to higher ALT). Fibroscan can also be influenced by inexperienced technicians as my doctor said to me, for exp. not placing the probe in the right place.
1 Comments
Thank you Melcul
Sorry to hear about your Hep E co-infection. I think it is important for you to see an HBV specialist (a Hepatologist or at least a gastroenterologist), in a major city even if you have to travel.
There are guidelines for starting HBV treatment and treatment for HBV/HEV. To comment, we need to know at least your HBeAg status(positive or negative), hbvdna viral load., ALT, AST, age and history. Indication of Fibrosis is helpful - Fibroscan score, blood platelet level, non-invasive fibrosis markers. Serum HBsAg quantity will also be very useful.
Guidelines have changed a lot and they are not all that black and white. The trend is to treat early as we now have very good and affordable antivirals such as Entecavir and Tenofovir. A co-infection with HEV definitely requires specialist attention. Also, cirrhosis is the leading cause of HCC, not hbvdna.
All the best.
There are guidelines for starting HBV treatment and treatment for HBV/HEV. To comment, we need to know at least your HBeAg status(positive or negative), hbvdna viral load., ALT, AST, age and history. Indication of Fibrosis is helpful - Fibroscan score, blood platelet level, non-invasive fibrosis markers. Serum HBsAg quantity will also be very useful.
Guidelines have changed a lot and they are not all that black and white. The trend is to treat early as we now have very good and affordable antivirals such as Entecavir and Tenofovir. A co-infection with HEV definitely requires specialist attention. Also, cirrhosis is the leading cause of HCC, not hbvdna.
All the best.
3 Comments
Hepatitis E Virus IgM - Nonreactive
Hepatitis E Virus IgG - Reactive, test states this is "very abnormal" not sure why
My limited understanding of this is that its most likely a resolved infection, does this still pose a risk?
Nov 18 Virus DNA (PCR/NAAT) 59900 UI/ml
Dec 30 Virus NDA (PCR/NAAT) 204000 UI/ml
Jan 18 ALT/SGPT 25 U/L
AST was not performed because it was hemolyzed. Can you tell me why this is important so I can ask for a new test? they both check for possible liver damage correct?
ALT and AST have always been in the same range and with in range since we have been doing bloodwork in Canada
Nov 18 HBeAg Nonreactive
Anti-HBe Reactive
Thank you for all of your responses, truly appreciate it.
41 years old female Born in South China
Chronic hepatitis B since birth is what I have been told
Started monitoring it 10 years ago when moved to Canada
Fibro scan has always been around F1-F2 except the very first one which read F9 and was most likely due to improper use of the equipment.
Current fibro scan, f5 - f9 They used a medium probe and told me I require a small probe So I assume they have extrapolated the data to assume that the results are lower than this, Im not sure why they check 2 parts of the liver but has been done this way in the past also.
This is the first time I have heard about Hep E I think its not that big of a thing but I am not too sure and would like some feedback on that. I get really worried when Doctors leave things like this out and not getting accurate readings from a machine that is used to determine treatment.
viral load started around 3500 and dropped to around 1300 to 2000 then 3500 50000 200000 UI/ml through out the last 10 years and has been fluctuating between 50000 and 200000 in the last 2-3 years.
Does anyone know where I can find some arguments to not wait till F3-F4 for treatment?
Thank you so much!
Hepatitis E Virus IgG - Reactive, test states this is "very abnormal" not sure why
My limited understanding of this is that its most likely a resolved infection, does this still pose a risk?
Nov 18 Virus DNA (PCR/NAAT) 59900 UI/ml
Dec 30 Virus NDA (PCR/NAAT) 204000 UI/ml
Jan 18 ALT/SGPT 25 U/L
AST was not performed because it was hemolyzed. Can you tell me why this is important so I can ask for a new test? they both check for possible liver damage correct?
ALT and AST have always been in the same range and with in range since we have been doing bloodwork in Canada
Nov 18 HBeAg Nonreactive
Anti-HBe Reactive
Thank you for all of your responses, truly appreciate it.
41 years old female Born in South China
Chronic hepatitis B since birth is what I have been told
Started monitoring it 10 years ago when moved to Canada
Fibro scan has always been around F1-F2 except the very first one which read F9 and was most likely due to improper use of the equipment.
Current fibro scan, f5 - f9 They used a medium probe and told me I require a small probe So I assume they have extrapolated the data to assume that the results are lower than this, Im not sure why they check 2 parts of the liver but has been done this way in the past also.
This is the first time I have heard about Hep E I think its not that big of a thing but I am not too sure and would like some feedback on that. I get really worried when Doctors leave things like this out and not getting accurate readings from a machine that is used to determine treatment.
viral load started around 3500 and dropped to around 1300 to 2000 then 3500 50000 200000 UI/ml through out the last 10 years and has been fluctuating between 50000 and 200000 in the last 2-3 years.
Does anyone know where I can find some arguments to not wait till F3-F4 for treatment?
Thank you so much!
Thank you for the information about your history. I am not a doctor.
As you are originally from China, most likely you were infected at birth and of HBV genotype B.
I am not very knowledgeable about HEV, it does seem it was a past, resolved infection. This should be confirmed by a liver specialist.
AST is usually a part of the liver function test that is usually done at least every year for HBV-infected patients. Yes, it normally trends the same way as ALT, as both measure damages to liver cells, but its measurement is helpful together with the other assays.
There are many non-invasive assessments of liver Fibrosis, such as the APRI – aminotransferase-to-platelet ratio index, and the FIB-4 – fibrosis-4 index. Of cause, there is also the liver biopsy.
My opinion is that you may be in the Immune Escape Phase, now known as HBeAg negative hepatitis, because you are HBeAg negative and HBV DNA> 2,000 iu/ml. Even though your ALT is normal, I think most guardlines (AASLD, APASLD, Canadian Hepatitis B guideline) would recommend treatment.
The natural history of HBV infection is complex and there are still many unknown questions regarding HBV and its interaction with our own immune systems. However, great advances have been made, especially in the management of HBV in recent years.
Just my opinions and all the best.
As you are originally from China, most likely you were infected at birth and of HBV genotype B.
I am not very knowledgeable about HEV, it does seem it was a past, resolved infection. This should be confirmed by a liver specialist.
AST is usually a part of the liver function test that is usually done at least every year for HBV-infected patients. Yes, it normally trends the same way as ALT, as both measure damages to liver cells, but its measurement is helpful together with the other assays.
There are many non-invasive assessments of liver Fibrosis, such as the APRI – aminotransferase-to-platelet ratio index, and the FIB-4 – fibrosis-4 index. Of cause, there is also the liver biopsy.
My opinion is that you may be in the Immune Escape Phase, now known as HBeAg negative hepatitis, because you are HBeAg negative and HBV DNA> 2,000 iu/ml. Even though your ALT is normal, I think most guardlines (AASLD, APASLD, Canadian Hepatitis B guideline) would recommend treatment.
The natural history of HBV infection is complex and there are still many unknown questions regarding HBV and its interaction with our own immune systems. However, great advances have been made, especially in the management of HBV in recent years.
Just my opinions and all the best.
update, we just checked our records, all firbroscans have been done with a medium probe, we thought they had switched to a small probe but it turns out that was incorrect.
I just want to say that I find it hard to believe that getting professional HBV treatment seems so difficult in an advanced country like Canada. Canada has some very good HBV researchers. I am also surprised that Fibroscan can measure liver stiffness in different parts of the liver. My understanding is that the probe is placed in one recommended fixed position and it provides an estimate of the stiffness of the whole liver.
2 Comments
This is exactly how it was explained to me. I also find this all so hard to believe, I thought we would be ok in Canada but I am often left with more questions that I had before I see professionals here. It might have something to do with living further away from the bigger centres. I live in a smaller city.
Do you mind helping me with what kind of questions I should be asking the Dr's I do have available in order to get better care. I really am afraid that the Dr. we are talking to is not up to date with
I dont know what to do at this point, this is the only Dr we can see in the city we are in. I dont mind travelling 8 hours to see a proper specialist, but this is probably going to take another year to get into see one.
In your opinion what stage of liver damage would you start treatment at. Do you think its ok to wait until F3-F4, I just dont see any logic in this, I get that you liver can still function with cirrhosis but doesn't chance of cancer go up significantly at this stage.
Does it really not affect ones health if there liver is not operating at full capacity?
Why Can we not get a full answer as to the progression of life cycle of the virus.
I just have so many un answered questions and dont know where to even start.
Im just afraid if I just trust the doctors to do what is best that things will get missed and will wake up one day needing a liver transplant or cancer.
Im really frustrated and wish there was an easer place for community to talk and ask each other questions.
I wish there was a check list that ever patient should ask their doctor to make sure they are getting adequate care.
Is there a list like this already here? Can anyone help me make one?
Do you mind helping me with what kind of questions I should be asking the Dr's I do have available in order to get better care. I really am afraid that the Dr. we are talking to is not up to date with
I dont know what to do at this point, this is the only Dr we can see in the city we are in. I dont mind travelling 8 hours to see a proper specialist, but this is probably going to take another year to get into see one.
In your opinion what stage of liver damage would you start treatment at. Do you think its ok to wait until F3-F4, I just dont see any logic in this, I get that you liver can still function with cirrhosis but doesn't chance of cancer go up significantly at this stage.
Does it really not affect ones health if there liver is not operating at full capacity?
Why Can we not get a full answer as to the progression of life cycle of the virus.
I just have so many un answered questions and dont know where to even start.
Im just afraid if I just trust the doctors to do what is best that things will get missed and will wake up one day needing a liver transplant or cancer.
Im really frustrated and wish there was an easer place for community to talk and ask each other questions.
I wish there was a check list that ever patient should ask their doctor to make sure they are getting adequate care.
Is there a list like this already here? Can anyone help me make one?
Just ready my blood work and it turns out there was a Hep E infection I was unaware of, I will need to research this. I assume its not important as the doctor said nothing.
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