Hep B and Autoimmune Hepatitis - Hepatitis B Trust

Hepatitis B Trust

Hep B and Autoimmune Hepatitis

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Dear All,

I hope you’re enjoying the weekend!

I am new to this group and I joined because I have a chronic hep B which I’ve had since 2005. My viral load is high but LFT and the rest are negative/normal. Fibroscan is normal. ALT is high for a woman but I don’t know the exact number.

I’d lived in Scotland from 2005 until January this year when I moved to England. In Scotland I was seeing a Dr every 6 months and even though they said I had a high viral load, I did not need treatment as my liver was healthy. When I moved to England I went to see a dr here (just to continue the process) and I had all my blood tests done 3 weeks ago. On Friday, I phoned to ask about my results and she said what I said at the beginning of this long post BUT she said the dr left a note that when I see him in June I need to have more tests as my Autoimmune marker (she said one of them and I don’t know which one) showed positive. It freaked me out and I can’t stop thinking about it. Does it mean I also have autoimmune hep? She said no but she wasn’t sure at all about the results...I have no one else to talk to and I wonder if anyone can help to ease the worry I’m experiencing right now.

Thank you xx

5 Replies

Hi Masy , We Hep B sufferers seem to be a bit thin on the ground , which is why I'm answering your post !

I can only tell you about my experience , which probably won't be much help .

Eight years ago I was diagnosed with HIV and Hep.B . My HepB viral count was off the scale , and because of the HIV I was put on medication strait away . Within twelve weeks both virus levels had dropped to undetectable .

I'm kind of surprised you have not been offered treatment ? Perhaps the doctors are reluctant to prescribe because of the possible side affects of some drugs - ?

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Hidden in reply to Griffon

Thanks for your reply, Griffon. The doctors said that since my liver was absolutely fine, there was no need for a treatment. Frankly, a nurse in England was surprised as well that I was never offered any treatment.

Anyway, I appreciate you answered my post :) I hope you have a good day xx

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Griffon in reply to Hidden

Perhaps you should ask for treatment ?

In my case , because I was diagnosed with HIV , the HIV overshadowed the HepB , but in hindsight I think the HepB was responsible for the health problems that led me to getting a diagnosis . I was lucky because the treatment for HIV and HepB use some of the same drugs .

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Griffon in reply to Griffon

Oh just one more thought Masy , whilst you have a viral count you are still infectious to other people . With treatment you won't be .

Hi Masyanya. I have HBV and AIH. HBV for 35+ years, AIH for 8. Unfortunately the meds for each contraindicate each other, but with a good hepatologist who understands the drugs and the conditions you can do ok. You MUST start treatment for the HBV, I was told i 'didnt need' treatment cos my viral load was low, but hey ho, silly doctor, left untreated my liver progressed to cirrhosis and then liver cancer. Since being on meds for the Hep B i have stayed clear of cancer.

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