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Hep B help... what is causing my fibrosis progression?
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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?
47 Comments Post a Comment
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Are you on treatment?
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Maybe you have a fatty liver, do you have utz? Just my opinion.
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Thank you for your reply. I don't know what a utz is. I will Google it thank-you. Could be a fatty liver and I have started juicing beets and eating alot more vegetables and cutting almost all sugar. Still learning how to eat right for liver disease.
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Royal thank-you for your reply. I am not currently on treatment. I will go see the new specialist and they will probably start me on treatment.
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Avatar_m_tn
how much is your ALT ? High ALT may false results of fibroscan. Maybe you should have biopsy done and start some therapy. For HBe- and viral load 2000 > IU it's advised especially if that fibroscan result is correct.
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What is your ultrasound result?
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Sorte thank you for your reply.  My ALT has always been normal from the start.  I can post results here later tonight when I get home.  My new Doctor said that we are beginning to move away from biopsy because they do not give an accurate result unless taken from the correct location of the liver and unless inspected by highly skilled pathologists which can take some time.

Is it possible for my liver to be scaring with no indication from ALT?

I know not very much about HBe-  all I know is that it usually means you have had the virus for some time.  I find it difficult to find the right information but I am learning the correct search words if you can point me to any information I would greatly appreciate this.

I will be going to a new specialist soon,  my gastroenterologist lost my trust when he did not call me why my fibroscan scores started increasing dramatically.  I don't think its acceptable to find this out 5 months later, as this the scores to me through extrapolation tell me I could be cirrhotic in a year unless I change something and should have been taking measures and on treatment 5 months ago.  Am I over reacting do you think,  I don't want to be a mean person.

I wont focus on the past though.  I know now and can now do something about it and still believe I have time to heal.  I just need to figure out why its progressing so fast and stop it.  I feel I need to do everything I can especially before I have medication available to me.

I have been drinking organic vegetable Juices everyday for the last 2 weeks and trying to get at least an hour of exercise in a day.

I just feel really panicked and that I have no time to waist so I am looking for help on things I can do to stop the fibrosis or ideas as to what might be causing it to progress faster.

Pong58 thank you for your reply, I had an ultrasound a few years ago and it came up normal.  ultrasound was never ordered this year from some reason.  Should I be getting another ultrasound?

Thank you everyone for your help it feels nice to know there is someone here even just to read my words.
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Avatar_m_tn
I just want to give you some comments:
1. you are HBeAg negative, but your viral load is above 22,000 iu/ml. It is higher than the usual limit of 2,000 iu/ml. According to AASLD guideline, treatment is not recommended for HBeAg negative, if hbvdna is less than  20,000 iu/ml AND ALT is normal. For EASL and APASL guidelines, the upper limit of hbvdna is 2,000 iu/ml. Also normal ALT means less than 30 iu/L for male and less than 19 iu/L for female.
2. when you said your ALT has always been normal, it means ALT was normal at the time of your tests. So how often do you test?
3. The guideline of not treating HBeAg negative when hbvdna is less than 20,000 (or 2,000) iu/ml, is derived from observations, because most patients meeting this criteria, the majority (but not all), their fibrosis do not progress or very slowly.
4. Fibroscan is not very accurate for intermediate fibrosis range. It is pretty good for minimal or no fibrosis OR significant fibrosis.

To find out more information,Google "HBV natural history", or "AASLD, EASL hbv guidelines"
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Avatar_f_tn
I just got home and found my blood work.

My ALT is 24 U/L and ALP is 59 U/L

Hep B DNA Viral Load NAAT - Hep B Virus DNA PCR/NAAT 22679 IU/mL

Thank you StehenCastlecrag for your reply I am reading and attempting to make sense of what you gave me to google.  I really do appreciate your reply, I can use all the friends I can get right now and I have not told anyone about this yet so it feels good to talk to someone.

I don't understand how my old specialist could think this is not important to notify me about.  Why would he wait 5 months, My emotions keep rolling on this.  Maybe I just dont understand enough about what is going on and it was not urgent enough to call.
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Avatar_f_tn
I just need to wait for the new specialist so I can get some medication.  This wait seems like years I can hear the clock ticking in my head haha.  Trying to stay positive.
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I have alot of energy tonight more than I have had in a long time. I wonder if it is the juicing or if it is the coffee. My doctor told me that coffee protects the liver and to drink as much of it as I want.  All my muscil and bone pain is gone. I wonder if I am healing.
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Avatar_m_tn
start tenofovir, even if statistics show less damage with low hbvdna it is not like that for all, only if hbvdna undetectable we may think hbv is making no damage

also check your vitamin d and intact pth levels, a vit d deficiency itself can make liver fibrosis and reduce kidneys function 50%

eat always organic, otherwise you may be eating chemicals in foods anyway like pesticides and so on
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Thank you for your reply stef2011.  I really appreciate your input.  I will check this as soon as possible.

My new family doctor stayed late into 1030pm talking to me for 3 hours just to try to explain things and get me on a good plan of action.  He is the best doctor I have ever seen so far.  I was thinking to ask him about vit levels and forgot in all the discussion we had.  This really reaffirms that I need to get this checked right away.

For treatment my doctor sent me for retesting for fibrosis markers through some type of special blood work and we will repeat the fibroscan.  He will send me on an 8 hour drive to see a heptologist and the heptologist will probably prescribe me to treatment.  I think I need this prescribed by a specialist in Canada.  I hope this can happen sooner than later.

Stef2011 may I ask why tenofovir?  is it more effective than other treatments?  I'm just asking because my research in this has just began and I am just beginning my journey of learning and healing.  If you could point me to any information that you think might be helpful I would forever appreciate it.  I am female and Asian and suspecting infection from birth, so I feel like I may need to be aggressive in healing my self.  I heard Asian's are at more risk for further complications.

Thank you so much
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Avatar_m_tn
Stef2011 may I ask why tenofovir?  

this is the most potent antiviral for hbv, no resistance and the only one to have a good effect on hbsag (50% hbsag less than 1000iu/ml by 5 years, this is very important because by pegintf addon you can clear hbsag when you reach those low values)

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Avatar_m_tn
can tenofovir clear hbsag long term for example 15 years? Will t cells gain immune response? Will cccdna weaken where T cells get stronger and gain immunity only with monotherapy tenf?
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Avatar_m_tn
can tenofovir clear hbsag long term for example 15 years?

we will know in a couple of years, according to decline observed (not all patients) it should reach clearance by 17years.etv over 30-35years
but this is not important 1000iu/ml is low enough for pegintf add on to fasten decline and clearance

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Thank you stef2011 this seems like very important information to know for when I see the heptologist.  I am starting to get excited with new hope.  Thank you so much.
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I have been reading about research on stem cell therapy that can reverse liver damage.  I don't understand it all yet but it seems very promising.  :)
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Iv been eating all sorts of green and red vegetables while also having at least one Vegetable juice a day and excising more.  I feel a lot better lately.  I hope this change in lifestyle will help me to heal faster.  Still waiting for my specialist appointment and my fibrotest results from the recent blood work I did.  Does anyone know what a fibrotest is.  Doctor told me it is to find certain markers for fibrosis to help decide what stage I am at more accurately.  Has anyone every had this kind of blood test before?
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Avatar_f_tn
I think your Dr is asking you to do a fibroscan test to know the level of your liver disease.
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Thank-you for your reply Royal36. This is also what I thought. I thought it was a fibroscan redo, but when he tried to explane to me it is actually some type of blood test. Anyone ever heard of this?
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Avatar_f_tn
It is a blood test,i just had one,mine shows no fibrosis and the fibroscan from last summer was 3.7kpa,hope they are accurate,don't have to much trust in liver tests
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Thank you lila58.  this is what the test looks like I guess

This is the example he gave me not my test results.  I don't have them back yet.

Fibrotest
_____________________________________
| Age (yrs)                57                               |            0-0.19        F0
| GGT                      172                             |             0.2-0.39     F1
| Bilirubin                  14                               |            0.4-0.59     F2
| α2 Macroglobulin     4.6                             |             0.6-0.79     F3
| Haptoglobin             0.32                           |             0.8-1.0       F4
| Apo-LipoproteinA1    1.07                           |
| Gender                    0 Male 1, Female 0     |
| F                            2.69                            |
| Fibrotest                 0.94 F3+ if over 0.6      |
|_____________________________________|

Notes on Fibrotest:
Not valid if hemolysis or whenever haptoglobin is reported as negative, ie <0.08 if bilirubin is elevated for non-liver causes, such as Gilbert's or medications such as Atazanavir, use the dire
Hint: If bilirubin is elevated but INR is normal, chances are bilirubin elevation is not due to cirrhosis.

I also wonder how accurate this is?
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Avatar_f_tn
3.7 kpa sounds incredibly good :)
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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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Avatar_f_tn
Sorry,I see now that wasn't your test.
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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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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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None of us are safe,start treatment if you have to,there will be a cure in your lifetime.
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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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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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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_m_tn
Use fibroscan or arfi machine, fibrotests are not accurate
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Avatar_f_tn
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_f_tn
Sorry correction it was advance from f0-f1 to f2-f3 in a year.
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Avatar_m_tn
so what is fibroscan in kpa, fibrotest useless, biopsy can be much less accurate than fibroscan monitoring every 6 months
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Fibroscan went from 4 to 8.9 :(  last test was Feb.
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Sorry kpa went from 4 to 8.9
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Avatar_m_tn
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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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_m_tn
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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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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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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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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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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Avatar_f_tn
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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Avatar_f_tn
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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