Questions on HBV, Socialising and Cirrhosis development

Just diagnosed or new to the community
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Hi all,

As someone who was recently diagnosed, I just came across a picture of a young woman in her 20s who had lost a lot of weight and had a swollen stomach. In her post, she was asking for help, and it was mentioned that she had developed cirrhosis due to Hepatitis B.

I have a few questions that I would really appreciate answers to:

  1. How could someone so young develop cirrhosis? I read that cirrhosis usually happens after many years of Hep B infection.

  2. Is it possible that she had Hep B but didn’t know until it got worse?

  3. How can someone prevent or reduce the risk of cirrhosis and liver cancer?

  4. How to could I become socialable again. I was once an active out going person but everything has changed since my diagnosis. Mainly because I’m trying to not drinking alcohol and also avoid the questions of why suddenly I’m not drinking again with buddies that I would usually hang out with.

  5. Lastly, how close are we to a functional cure? Will it became a reality?

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Hi @Acool,
Great questions. You are right, cirrhosis takes time to develop, so it is possible she had no knowledge of her infection or knew but wasn’t able to do much until this point. It is sad as this happens more, but we don’t hear those stories. 20 years is enough time for someone to develop cirrhosis.

Cirrhosis and liver cancer can be reduced by proper HBV management, either taking antivirals, vaccination for someone not infected, and staying in care so doctors can act sooner when sudden changes occur.

There is no time frame for a functional cure, we remain hopeful. It can be 2 years, 5 years, or 10 years, we don’t know.

On being able to socialize, you can do that without drinking. You can tell your friends you are trying to cut out alcohol because you have recently learned about its dangers. You can have a glass of water or a non-alcoholic beverage as they drink. Or better still, you can share your status with them, it could be an educative moment for them to get tested. We don’t want them ending up like the lady you talked about. It all depends on how you feel and the situation. You could be saving a life.
I hope this is helpful. I understand it is not easy and simple, so one must find what works for their situation. Best, Bansah1

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Thank you always @Bansah1

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Hi @Acool,

Great questions!

  1. Everything is a probability. While there is a low probability for hep B to cause cirrhosis so quickly, sometimes it does happen. There are other additional drivers to liver damage that could accelerate this: alcohol, some supplements/herbal remedies, coinfection with other liver infections, fatty liver, overdosing on medications, etc.
  2. Indeed it is possible that she had hep B and was unaware until cirrhosis, as we do know hep B can be asymptomatic until very late stages of liver disease.
  3. The most effective way of reducing risk of cirrhosis and liver cancer is to be monitored over time by a professional health practitioner who knows about how to manage hepatitis B, and get treatment when indicated.
  4. There are non-alcoholic options that you can consider and you could give a simple reason for wanting to look after you own health/lose weight. Or try meeting your friends in other venues where drinking is not the sole focus. Australia has a real drinking culture, but noone has ever given me a hard time for not drinking alcohol. Happy to hear from others how they have managed.
  5. There are two ways of looking at this important question. We don’t know how close we are because that’s the nature of research. An unforeseen reaction can tank a promising candidate. The other way to look at it is that we have never been so close to a functional cure, there are many candidates in the pipeline. My feeling is that it will become a reality at some point, but exactly when is still up for debate.

Hope this helps,
Thomas

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Thank you for answering my questions

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Hello Bansah, I read your respose to @Acool with great interest. I am new here, jsut discovred this community as @ThomasTu popped up in my search for more information on my own liver health issues. I have been a life long carrier of hep B, having “acquired” it at birth along with my 3 other sisters. Whilst 2 must have fought it off when they were babies, old sister and I became lifelong carriers. Both my sister and I are now in our mid-60s. So I have known andd been monitoring my condition since i was in my mid 20s.

About 16 years ago, i developed a flare and was subsequently put on entevir by my doctor. I am seeing the same infectious disease specialist in the royal melbourne hospital for 20 years now. The entecavir kept my viral load to non-detectable. Fast forward 16 years later, in January of this year, in my routine 6-monthly blood test, it was discovered that the virus has escaped suppression and an excess of 1.3M IU/ml was detected. My LFT then was normal. I was contacted by the hospital to go see them but i was away on a family holiday overseas but we had two telehealth consult during that time and i had continued to go for blood tests whilst overseas whilst consulting with doctors here. When i returned in early march, the blood tests indicated my viral loads had increased to 4.5M IU/ml, and my LFTs has broken off the top of the roof - in literal sense, with ALT of 131. I was taken off entecavir and put on tenofovir.

Just at the start of this week, i presented for a fibroscan and again the results were shocking, 12.5 kPa when it had been within normal ranges in the time before the virus broke out of suppression. That means severe inflammation, maybe even bordering on cirrhosis. My ALT had also gone up even more reading at 204. Only positive was that the viral road had fallen maybe 50% but was still in the region of 2.8M IU/ml. I have an appt to see my doctor tomorrow but I am frantic with worry, have been depressed for the last 3 months, with the thought that my condition might soon develop to liver cancer, and so quickly.

I have always lived a “healthy” life style, try to keep to a moderate weight, well, my BMI is 26.1 so yes, i am overweight, i keep off alchohol and eat a health diet. My doctor did what was a geno-typing (or something that sounds like that) in March and it was confirmed that my virus had mutated, which was why it could no longer be suppressed by entecavir. Tenofovir seems to be doing it work, but could it be too little, too late?

Many thanks for reading this very long message but I just needed share this with people who are similarly afflicted, who might know much more than i do about what i might expect going forward.

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Hi @Mei,
I am sorry to hear that you have developed a mutation which has lead to this situation. Entecavir I have read does have a low chance for mutation. I don’t know if your genotype meant you were prone to developing a mutation.

I can’t imagine how one will not be affected by such a drastic change. It’s great that you have kept in touch with you doctor. Let’s hope you do well on Tenofovir and your results gets back to where they were before.

I am aware of another lady that developed mutation while on antiviral treatment and it did set her back a bit. But she is doing well now. I hope your appointment goes well tomorrow. Reach out if there’s anyway we can be there for you and thank you for sharing your journey with us. We are all rooting for you. Bansah1

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Thanks very much for your response. Just happy to know that there is at least another person you know who had developed a resistance but is doing well now. One more reason for me to be positive, so thanks muchly.

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Thank you for sharing your tragic experience. And whilst you were on holidays!
I really feel your pain.
You must be beside yourself.
I pray it all goes well for you and the medical team will get your levels back to normal.
We are here for you. Keep us informed.
Blessings

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Dear @Mei,

Thanks for sharing your story and sorry to hear about your experiences. Indeed, such a worry during what should be a nice time off. It’s good that you got on another treatment and it is working. Hope to hear that your liver recovers over this time as the viral load comes down.

Please keep us up to date if you can!

Wishing you all the best,
Thomas

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I have a bit of an update. Been a bit over a month since i shared my predicament. Now, 4 months since i switched over Entecavir to Tenofovir, it looks like my LFTs, and viral load, are all heading in the “right” direction.

My ALT/AST are still very elevated, perhaps 2.5-3x the max they should be but the viral load has fallen expotentially, and down to less than 1,000 IU/ml. That was from a blood test 2 weeks ago. My doctor said the inflammation lags behind the viral load but in time, when the virus is completely suppressed, i would see the inflammation go down to normal ranges too.

I am, of course, delighted to know that. Also very grateful for information, advice received here. Hopefully in a couple of months, i would be able to return and let you know that my virus have been completely suppressed and are no longer detectable.

Many thanks again, all, for reading this.

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So glad to hear this, @Mei! It’s great that you’re feeling so much better about everything. Please keep us up to date on your progress!

Thomas

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Thanks @Mei

That’s wonderful news.

You must be very relieved

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That’s great news! Keep going with the medication, and hopefully you can reach undetectable levels soon. It might be worth doing another Fibroscan in a year to see if the numbers are any better. Our livers have an incredible ability to heal themselves from damage (though this does have limitations, which is why livers with advanced cirrhosis are considered “damaged beyond repair”). At your stage of fibrosis, I’d say there’s still a good chance that your numbers will improve.

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I have another update now. It has now been 3 months since my last blood tests and 6 months since my last fibroscan, and I had one done two weeks ago. Unfortunately fibroscan results are just as shocking. My blood tests have all just about returned to the “normal” ranges, except for an elevated ALT of 64. Ultrasound picked up mild fatty liver, but the fibroscan picked up severe fatty liver. I was subsequently sent for a barrage of other blood tests and they have all come back within normal ranges.

I am a little heavier than I should be, with a BMI of 26.6. I am hoping it is “just” fatty liver is that keeping my liver stiff (?) and not actual cirrhosis as I know it is possible to eliminate or at least considerably reduce a fatty liver but I am just very worried it could actually be cirrhosis. I have an appointment with the doctor for a review next week. I will update after the appointment.

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Sorry to hear that you’re disappointed, @mei. However, it is good news that the majority of your blood results have come back as normal. If it is the CAP score that is elevated, then that can change with some interventions.

Yes, please keep us updated; there is a community here to support you!

TT

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Thank you @Mei for the update.

for the update.

As you have said you are a bit on the heavy side. That can affect our Liver as well.

I know it’s hard. I need to lose some fat as well.:wink::weary_face:

wishing you good results stay positive. Being stressed does not help our liver.

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Back from seeing my doctor on Thursday. All other blood tests and markers are within normal ranges, apart from ALT. However, there is concern that the fibroscan results (median stiffness 14.2, F4) might actually indicate there is some cirrhosis happening but they cannot really tell from what they have. Next steps wait to be tested again in six months. Or???

I asked if a liver biopsy would be able to show a clearer picture and she said it is certainly one of those tests they can do to ascertain if it is, then at “what level”. I saw a infectious diseases doctor last week for the review (my regular doctor is on sabbatical) so she is referring me to a gastro-enterologist for further assessment and decision as to whether i should be scheduled for a liver biopsy. The liver ultrasound, which i did a week before the fibroscan, was unremarkable except for some mild fatty liver, which contradicts fibroscan results which picked a severe fatty liver. Doctor, however, told me my liver stiffness would not be attributed to the severe fatty liver.

I am confused now as i thought my fatty liver contributes to the stiffness of my liver. In the past three weeks, i have embarked on a “healthier” lifestyle, as compared to my previous of “balanced diet” lifestyle by going low carb, and doing intermittent fasting, alternating between 16/8 and OMAD, and long walks, and have successfully shed about 3kgs, in an attempt to eliminate/slow down the progress, of my fatty liver.

By and large, I feel okay, a little bloated, and mostly depressed about my state of health Am just awaiting their decision as to whether they will schedule me for a biopsy now. I am not thrilled about that but if it would give me more clarity, I would welcome that.

Many thanks for listening to me…

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Thanks for the update, @Mei.

Yes, one of the major effects of Hep B testing is just the anxiety of not knowing. I hope there is a good resolution to your situation soon. However, I want to applaud your willingness and proactive changes to your lifestyle to be a bit more active!

Thomas

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@Mei

Keep going. One foot in front of the other. :star_struck:

I’m due for my round of blood tests and ultrasound next month.

Nowadays I think, it is what it is. I will deal with the results when I get them. With Gods help.

I used to get high anxiety every time I read the results. But the anxiety was destroying my life.

You are not alone.

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