Thanks Tig,  I will review those when I get some time.

Gracie, I am from Denver.  I go through the VA so not sure if they have this equipment yet.  But, I will be asking on Nov 4th.  Still am having some wicked symptoms.  I can't wait for this appointment.  In the mean time, I am just trying to stay positive, which is very hard when you tired and in pain and mood is crappy. 

Scott,

Here's a couple of websites that can help explain two different non invasive procedures. As Gracie mentioned, it's becoming more available and the accuracy has improved significantly. There is also a blood test that measures different markers. It's called the Fibrosure or ActiTest. The blood tests use algorithms, are less expensive than either a biopsy or Fibroscan. Personally, I would want either a biopsy or a Fibroscan, if I were seeking an accurate determination of my fibrosis level. They are also using MRI to make some of these determinations as well. Be sure you're able to understand and discuss these options with your doctor when the time comes to decide. Knowledge is power....

Fibroscan - Understanding the Results

Fibrotest (Fibrosure) & ActiTest

Where do you live? They are getting quite common nowadays. We even have them here in New Brunswick Canada.

A fibroscan is a measurement of the stiffness of your liver. It takes about 5 minutes with a prob that taps on the outside of your upper stomach. Very easy and very quick. It's not perfect but is accurate up to 90% measurement of fibrosis in your liver. Much easier than a biopsy. 

What exactly is a fibroscan? 

I have had 2 biopsies, last one was 8 years ago.  I just had a CT scan to look at sizing of liver and other organs.  But they said that can't eliminate the possibility of cirrhosis so not sure why they even did it.  I keep telling them I want another biopsy because in the last 8 years since my last one I was very very bad.  I explained to them about quantities of consumption and they say, "holy Crap" but then don't run any more tests.  My enzymes are like a roller coaster.  Last year they were close to a thousand like 700 and 900.  Then they went down to in range.   Back in June they were 52/117. 

I would like to get this fibscan.  Maybe that was what the CT scan was.  No one ever gave me any numbers though.  They just said my spleen was full size, which means it was swollen since I had half of it removed when I was 17.  They said my liver was slightly enlarged and everything else looks good. 

Tig56

I am glad we had the discussion on this thread. I don't believe those scores because, if those scores were correct, neither Mellani nor I would have significant fibrosis.

After 50 years, I expect fibrosis.

This is a progressive , chronic disease. It is possible to slow it down but it will relentlessly eat your liver.

The only solution, at whatever stage of fibrosis, is to get rid of it.

I certainly came to that swift conclusion after checking those calculators. And reading the threads.

I am certain the Dr. will do a proper scan as most of my blood markers are in proper ranges.

After witnessing the inaccuracy of these blood marker determinations of fibrosis, I'm very skeptical of their results. As your levels adjust, so does the implied severity. After 30 years of chronic activity, you will have fibrosis and I would want a biopsy or Fibroscan to confirm my stage. 1B success rates with the new protocols are very impressive, treat once and be done. You're doing the right thing by discussing this ahead of time with your specialist. I would request one of the two mentioned procedures and forget any further blood marker consideration. 

I am having trouble with the posting.

Thank Again

The fact is I may have more cirrhosis than you do.

I recalculated the APRI # with the correct 40, rather than 34.

That number is 1.05

The APRI is something Mike mentioned.

I have a referral to a specialist and Hep C 1b VL 5 ML.

We will see what the specialist says and biopsy actually show.

-- Edited by xtra on Friday 16th of October 2015 11:10:42 PM

Hi xtra,

Yes, my enzymes are now normal. Before treatment they were always high and went up and down as the disease ran it's course of acute flares.

I have copies of my Lab. tests since 1988. Just for interest, I put the numbers in for 2008, when I had my Fibroscan confirming cirrhosis. The Fib4 score came out at 2.1!!!!!! (AST-50, ALT-69, Platelets 186).

That's why it's a bit of a joke. Fibrosure (Fibrotest) is just as bad, as it uses the GGT, which goes up and down like a yo-yo. Cheers.

Mallani

Thanks, you did prove the calculator is not very indicative of the fibrosis/cirrhosis.

The only question is, those are the first blood tests I have had. If you are putting post treatment numbers into the calculator, it might be why your numbers are so low. Are your numbers for AST/ALT significantly different now?

I did get some real numbers, Hep C 1b 5,000,000 and a referral to a specialist for further treatment possibly with Harvoni.

That is reality.

I can see why this is a support group. With treatment, it is straight forward. Understanding the treatments and the side effects has become the topic instead of how to live with this. We no longer have to "live with it."

-- Edited by xtra on Friday 16th of October 2015 02:27:19 PM

Hi MM, this sort of calculator is interesting but as Malcolm pointed out, it can never replace a fibroscan or biopsy.  I would just like to add that sometimes members post links or information on the forum for general interest, but we can`t take them as a replacement for real life, professional opinion or advice.  This is a support group but not a medical forum, and apart from Malcolm, we are not doctors.

Having said that, we will always try to answer your questions as best we can. 

Hi xtra,

I put my numbers in the Fib4 calculator and I came out with a score of 2.55 (F1-2) which is rubbish. Just saying.........

A Fibroscan or biopsy is the only technique I'd accept. Cheers.

I was using the link to the calculator

http://gihep.com/calculators/hepatology/fibrosis-4-score/

The number is 2.99 which would be 3 I think if it were rounded off. I know I am putting in the right numbers. The score shows up in the upper left hand corner. It does have an asterisk 2.99* so maybe I am not reading it correctly.

It is just for fun. The real fibroscan or biopsy will be done at some point, I am certain.

It is hard to believe if there has been low grade irritation to the liver for a long period of time, that there wouldn't be any fibrosis.

That is what I don't believe is possible.

Hi xtra,

Sorry, a Fibroscan score of 2.99 is not possible. Even on the dedicated Fibroscan machines (like Echosens), the average reading only goes to one decimal point. A few days ago, I saw the latest 'add-on' Fibroscan program on a Phillips Ultrasound machine and it only goes to one decimal point as well.

I've now watched many Fibroscans being done, and the lowest reading was about 5.5 kPa. My pre-treatment score was 30.1.

Perhaps you're looking at the wrong report. Cheers.

It is a bit arrogant of me to say "I lived a clean healthy life."

I have never been hurt badly enough to require extensive treatment with pain killers. I haven't hurt my back and had to work on over the counter pain medicine to feed a family. I have never had to deal with heart disease with daily doses of aspirin and statins.

I have been spared the necessity of medical treatments that would make the dragon roar.

I have had one disease, other than a few bad colds and hepatitis A. Many people have to fend off the dragon and a host of other dragons.

I cannot say it was all my virtuous habits that were necessity when other people did not have the luxury of pampering the dragon.

I have been lucky. I have been spared a host of ills. I can only thank God for that.

Many here understand the dragon's breath, and heat that accompanies it. :)   It's good when you know it has been extinguished.  Even with the fire put out sometimes the burn remains.  All we can do is try and make the best of it.   Wishing you the best 

Thanks Groupergetter

I have found that even though I have known for 50 years that this disease was a fact of my life, I still am going through ups and downs

Those labs are as if I am finally staring directly into the Dragon's eyes. It is a different view.

But the Doctors are the dragon slayers. They have all the weapons and know how to use them. I will be interested to see how close those numbers match the fibroscan or biopsy. I know what you mean about biopsies. I dread the thought but sometimes, what can you do.

I am thankful there is  a treatment because the Dragon will win the game in the end. I could fight it off when I was younger but lately I am starting to feel the dragon breathing down my neck.

MM I believe the biopsy would be considered the "gold standard" for determining liver status, though I'm not sure I'd have another unless there was a real necessity.  I had a very poor experience with mine.  My doctor(s) don't lean too heavily on these numbers. In addition to biopsies, doc's use CT's, MRI's, upper GI's, ultrasounds, and labs to give a better and more complete picture.  Just be glad you're getting good care and hopefully will be getting started on tx before long.  Really about all we can do, is to eliminate those things that would further harm our liver, eat healthy, exercise,  be happy, and as best as possible enjoy life.   It's an amazing gift. :) 

Hi X,

Your ratio is .81, not 8.1. That wouldn't be possible! Below 1.0 is a good thing, above that is indicative of cirrhosis. 

When you get your results, here's something Mike and Mallani put together to set up the signature line and help with our abbreviations. It's very helpful.

http://hepcfriends.activeboard.com/t58862021/forum-abbreviations-link-and-help-with-creating-your-signatu/

Thanks Tig

I changed the ast 72/ alt 89 which is .81

Those calculators Groupergetter posted are handy and fun. But I am not going to be playing Dr.

I will get the lab results for genotype and viral load tomorrow. I think that is what will be shown on the RNA test.

Then I will have to learn how to do a signature. I will put it there.

It must be all the clean living if that damage is not so bad after 50 years. I wish it were Really Low. I had looked forward to some riotous living in my old age. Someday..never comes..LOL

Hi X,

The AST is divided by the ALT to obtain the ratio. A Fibroscan score of 2.9 is low, no cirrhosis indicated there at all, not even close to a middle of the road score. Here's a link to that info. When you get your results, could you list your lab values in one location? It would be helpful when replying if you could set up some info in your signature line. Thanks!

http://hepatitiscnewdrugresearch.com/fibroscan-results-the-scoring-card.html

Groupergetter:

Thanks for coming to this thread. I have been known to change topics on  threads especially when some polite person is kind enough to answer me.

Now, I will get some lab results tomorrow, viral load, genotype but I am going to post the numbers. Somewhere down the line, I will get a real fibroscan or biopsy so I can see how accurate this prediction is but correct me if I am wrong.

AST/ALT .81

APRI     1.2

Fibroscan 2.99

If I did each one correctly, then the numbers should all point to a similar amount of fibrosis/cirrhosis although I don't see cirrhosis particularly yet. As I get older this disease progresses more rapidly. That is a concern in seeking treatment before cirrhosis strikes.

Now, I believe those numbers are in the middle range of Fibrosis. Is that correct?

-- Edited by xtra on Thursday 15th of October 2015 02:26:49 AM

-- Edited by xtra on Thursday 15th of October 2015 02:29:16 AM

-- Edited by xtra on Thursday 15th of October 2015 02:49:29 AM

M M, yes the 34 is the default, but as I understand it, some use 40 as the default.  Doesn't change the result much.  This estimator/calculator may not be totally accurate.  Remember most numbers change... sometimes dramatically when on tx even for a short period.  A physician using all the criteria that might come into play should give their professional insight into the actual values.    

GroupGetter posted a link to a site that has calculators.

http://gihep.com/calculators/hepatology/fibrosis-4-score/

One calculator I didn't understand is the APRI. There is a second number which is ULN AST (IUL). The default if 34. Do I use the default or post my AST twice?