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6359077 tn?1441486304

Hep B help... what is causing my fibrosis progression?

I was wondering if people could help me with some ideas as to what may be causing my liver fibrosis progression.  I was diagnosed in 2012 and told that I am e antigen (-) with a viral load of about 17000.  I had a fibroscan done that read F0-F1 in March 2014, this year on Feb 2015 I had another fibroscan and blood work done.  I never heard from my gastroenterologist until a week ago when I learned that my viral load came back as 22000 and fibroscan showed F2-F3. the former scan was 96% success and the later was 100% success.  I feel absolutely terrified, its been 5 months since the last test and not sure where I will stand at this point.  I changed to a family doctor this week who specializes in hepatitis c and understand my urgency,  he had me take a fibro test which looks for specific markers of fibrosis in the liver through blood work and I should know something in a few weeks.  My new wonderful doctor is going to get me an appointment with one of the best heptologists in Canada right away.

I eat healthy most of the time,  I have maybe had 1 drink a month if that.  He doesn't know why its progressing so fast.  Does anyone have any Ideas of things that can make this progression faster.

all of my blood work is normal liver panel normal.  I don't understand please anyone give me any ideas?
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6359077 tn?1441486304
Thankyou for your reply flyinsky.  The reason I don't trust biopsy is because from what I have ready and from what my family doctor has told me, they are prone to error, put me at higher risk, and can be quite painful.  to get an accurate indication of what is really going on inside the liver you need to take several biopsy or you it may indicate that you are F1 when you really have quite a bit of liver that is F3 as your liver will progress at different stages in different sections.

I have also read that the results are more variable to the lengh of the sample they extract, and that these results can vary depending on the pathologist who is interpreting your score, or even the same pathologist on different days (inter, and intraobserver variation) as it is interpereted through description and is not quantative.

David R Scott and Miriam T Levi from the Gastroenterology and heptology department at Liverpool hospital, Sydney Australia say that up to 50 percent of biopsies are inadequate for accurate assessment of liver fibrosis.  Still new at this medical stuff so my apologies if I didn't get the terminology correct

I am also afraid it will cause more scaring.

also I am uncomfortable with small needles so I can not imagine a big one.  But I will do it if there is a good reason.

What is a tea result?  Is biopsy used to screen for cancer?  Will I be able to walk after, should I have someone come with me or pick me up?

Thanks again for your thoughts and encouragement.
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Avatar universal
Hi
If i were You i do biopsy better it gives you a tea result about what happens in your liver.since there isa doubt about   the  fibroscan results.
Why do you refuse the biopsy?it is harmless.
Most of us did it.
For me my fibroscan results give me deferents readings during short time so my doc order for me a biopsy to eliminate these doubts.
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6359077 tn?1441486304
I called the new gastroenterologist today and I will have an appointment next Wednesday.  She wants me to keep the biopsy and will explain why at our appointment.  I have no idea why when the results are so variable.

Is there any other reason to get biopsy other than staging liver damage?

Could it be she wants to make sure it is the virus causing the damage and not something else?

I want to tell her I am not taking the biopsy and want to just redo the fibroscan but I'm unsure if this is the correct move to make.

Do you have any thoughts you can share on this?
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6359077 tn?1441486304
An update on my situation.

I received the results for the fibrotest today.  my score was 0.2 which is at the lowest end of F1 so my doctor and I believe that this suggests that the latest fibroscan was inaccurate and that my true score should be closer to the first fibroscan results I received two years ago.  We are going to repeat the fibroscan to be sure as it is my understanding that fibrotest is not the best to make accurate predictions.  alpha 2 macroglobulin was slightly high, does anyone know what significance this has?

My new family Doctor is a hep C specialist so he is not qualified to be my specialist but more that qualified to be my GP and has expressed that he will do his very best to get me the best care and doctors that he can in Canada.  Very very good doctor best I have ever seen.

He is getting me an expidited appointment with a new gastroenterologist.   And is going to get me an appointment with a Heptologist in one of the bigger urban areas here.  Saskatchewan has not heptologists so I will either have to travel or he said he could also set up a video conference appointment at the hospital.

He wants to start treatment as soon as we get advice from the Heptologist and is looking at getting me into a clinical trial.

The gastroenterologist will meet with me soon and determine if she wants me to do a biopsy.  Personally I think there useless after reading a bit but I guess if she can give me a good reason other than staging fibrosis than I may go along with it.  

Does anyone have an opinion on biopsy.  I personally don't think there as good as fibroscan but I'm open to suggestions as to there potential benefit if anyone can help.  What do you think should I go a head with the biopsy?  I guess they are still asking them selves why my numbers were so high on the second fibroscan and want to make sure.


My 25 Hydroxy Vit D is 47 nmol/L  with a range from 50 to 75 with 75 being optimal.  There was no PTH done but ordered the test for me and sounded interested in the VitD protocol that stef talks about.  Can anyone give advice on these numbers and dosage I should be taking?
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6359077 tn?1441486304
Thank you so much for your response stef2011,  I am feeling a little emotional these days and I am new to all of this and don't know where to start or the lingo or even what I need to look for.  Learning as I go so I really appreciate the help.  It all seems scary, not sure if I need to be scared but I feel this way.  when I went to the walkin doctor he didn't really help much because he didn't know why my family doc had all the tests done on me and he seemed like he didn't have time to go through it.  He wouldn't even print off the test results for me. I will have to wait a bit to get the rest of the results.

he did tell me to start taking Vit D as it is low.  my score was 47 and the low end of the allowance is 50.  Not sure what the units were.  He told me to take 1000 ui daily.  Vit D seems to be the them of the day so thank you for reaffirming this.  I bought some liquid drops that have a coconut and palm oil base

I also went to see a natural path and she basically told me to up the dose of Vit D to 4000 ui,   and to up my dose of n-acetyl cysteine to 1500 mg and Alpha Lipoic Acid to 300 mg twice daily.  

She also suggested that we start weekly injections of Glutathione which is suppose to be liver supportive and hopefully help stop further damage while I am waiting for treatment.  I'm not sure what this stuff is so I am going to research it before I make a decision.

I will definitely check out the link you sent me.  Can you give me the first word after the www again it was blanked out?

HBV dna actually went down from 22,000 to 12,000 iu/mL the specialist was worried about it being over 20,000.  Its the lowest I have ever seen it, but not on antiviral yet, I'm not sure what they are waiting for to start me on them,  I guess the fibrotest,  not sure why they are waiting for that I really do believe you that its useless.

We bought a juicer today,  since I found out my fibroscan results I have been trying to eat only organic, and eat lots of beets, kale, carrots, apple, dandelion leaf.  I would usually make a smoothie with a blender and some water.

Thank you kindly once again :)
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Avatar universal
https://www.************/groups/protocolloCoimbra/

high dose vit d italian group, almost 11.000 members, you find the experience and results also of  rheumatoid
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Avatar universal
again fibrotest is uselss

rheumatoid factor can be made negative by simply using high dose vit d and many got it negative by few months use
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6359077 tn?1441486304
I just talked to the nurse and she advised me that our doctor is away due to illness in his family. I was able to squeeze out of her that there was a flag on the fibrotest result.  She said something about rheumatoid factor being high. We will go see a walk-in doctor to check the results. I am very scared now don't know what that means.  
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Avatar universal
and hbvdna is und alt normal?on antivirals?if so check your food, if it is processed food stop that, processed food is toxic and full of chemical, it slowly kills

fresh and organic is a must
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6359077 tn?1441486304
Sorry kpa went from 4 to 8.9
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6359077 tn?1441486304
Fibroscan went from 4 to 8.9 :(  last test was Feb.
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Avatar universal
so what is fibroscan in kpa, fibrotest useless, biopsy can be much less accurate than fibroscan monitoring every 6 months
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6359077 tn?1441486304
Sorry correction it was advance from f0-f1 to f2-f3 in a year.
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6359077 tn?1441486304
I had a fibrotest done. It said I advanced from f0-f1 to f1-f2 in a year. Doctor wants to do a fibrotest before recommending me to a new heptologist. My gastro wanted me to do a biopsy before deciding what meds to put me on but I stopped seeing him because he failed to inform me of my fibroscan results for 5 months and refuses to take calls from patients so the only time I can receive the last result is every 6 months. A little pissed off at him but I guess people make mistakes but I don't trust him any more.  Thanks for ur response Steff I really appreciate it.
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Avatar universal
Use fibroscan or arfi machine, fibrotests are not accurate
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6359077 tn?1441486304
So I went for my follow up appointment for the fibrotest results. I was told to come back next Tuesday as there are still some results not in yet.  I've been waiting a month.  I'm a little frustrated and worried. What if I am already in stage 4. I can't stop thinking about this I am becoming very depressed.
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Avatar universal
This forum is like a second family to us. There are intelligent and educated people in here,wish you well with your journey!
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6359077 tn?1441486304
Thank-you Lila I do want to start treatment.  I can not start until the specialist can see me. I guess that is the way in Canada. I hope I can stay healthy and hold it at bay until then.
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Avatar universal
None of us are safe,start treatment if you have to,there will be a cure in your lifetime.
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6359077 tn?1441486304
Lila I am 33 and the doctors think I have had Hep B since birth.  I scored F0-F1 last year and this year F2-F3.  That was 6 Months ago.  Im a little scared to learn what my new scores is.  Hopefully improved, or mistake.
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6359077 tn?1441486304
Lila I am 33 and the doctors think I have had Hep B since birth.  I scored F0-F1 last year and this year F2-F3.  That was 6 Months ago.  Im a little scared to learn what my new scores is.  Hopefully improved, or mistake.
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Avatar universal
Sorry,I see now that wasn't your test.
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Avatar universal
This is the test I had.I live in US and I can have fibroscan only when I travel to Europe ,and isn't going to happen this summer.So far I had 3 of them ,all the same.I am also 57 ,but my hepatitis is only 25 years,never been on medication.
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6359077 tn?1441486304
3.7 kpa sounds incredibly good :)
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