Hepatitis B carrier since last 21 years. - British Liver Trust

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Hepatitis B carrier since last 21 years.

Kalujacky profile image
7 Replies

21 yrs ago when when I had blood test done during my first pregnancy, dr told mr I have Australian antigen positive. I didn’t kone what was that.

Then had test few years after and dr told me I’m a hepatitis b carrier and I should do regular tests. I ask my dr to do my liver test yearly and he says don’t need to. But I insist and he do the blood test and they come normal.

So many times I asked my dr to do any thorough test for my liver and he says There’s no other test just the blood test.

I’m really under lot of stress that If there’s any problem in my liver and it’s too late to find

I’m concerned now since it’s been 21 years I diagnosed with this.

I don’t have any symptoms.

But I need help here if any other test I should ask my dr to do.

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Kalujacky profile image
Kalujacky
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7 Replies

Good morning and welcome to the forum. You should certainly be monitored with blood tests and perhaps you could also ask for an ultrasound scan of your liver. If you have not been seen by a liver specialist (hepatologist) it might also be worth asking for a referral so that you can be confident you are getting the correct follow up. On rare occasions the hepatitis virus can reactivate in someone who is a carrier. Hope fully the rest of your family have been tested for hepatitis B.

Here is a link to our information on hepatitis B:

britishlivertrust.org.uk/in...

There is also a support group:

Hepatitis B Positive Trust

Website and information line for people with Hepatitis B

hepbpositive.org.uk

0800 206 1899

regards

mantana profile image
mantana

@Kalujacky unfortunately hepatitis B, if not treated, is a slow and sure death. Yes, you may live many years with it, but then, you might die with liver cancer at 62 instead of passing as an old grandma or grandpa at 93.

However, some doctors are not familiar with it, might discourage treatment, or will discourage treatment because their medical budgets will go over limit (that's the case in some countries, like Germany - even if the patient is insured and should get all or nearly all treatment costs covered - doctors also have their own limits).

Please visit your hepatologist and ask him/her to do the following tests:

- hepatitis C - another deadly virus which is quite common

- hepatitis D - another deadly virus, less common, co-existing with hepatitis B only

For hepatitis B, your doctor should order the following blood tests:

- HBsAg quantitative - to see how much hepatitis B "S" antigen you have in your blood - this is one of the markers of your disease; note that there is a different test, "qualitative", which only says if you have HBsAg in your blood, but not how much of it you have (by doing quantitative tests, you will be able to test your treatment progress; current treatments will only lower HBsAg, but are unlikely to clear HBsAg to zero, even after many years of treatment)

- HBV DNA quantitative - hepatitis B DNA in your blood; again, the test has to be quantitative, so you can monitor your treatment progress (current treatments completely eradicate HBV DNA from blood after just a few months of treatment)

- various liver tests - ALT, AST, bilirubin, GGTP

- other blood tests, like LDH and ALP

- blood morphology

- HIV (yes, HIV - if you start hepatitis B treatment, it is crucial to make a HIV test - if you're infected and only take anti-hepatitis B medication, it will make HIV mutate and harder to treat)

Non-blood tests which should be made:

- ultrasound

- fibroscan

For chronic hepatitis B carriers, it is advised to do blood and untrasound tests every 3-6 months. If your doctor says there is no need to do any tests, and didn't even mention ultrasound - I'd really consider changing the doctors, as your current one is not competent.

Current guidelines in many, but sadly not yet all countries, say that chronic hepatitis B carriers should be treated.

There are four drugs which can be used to treat hepatitis B:

- pegylated interferon (PEG-IFN) - it's an injection, with sometimes serious side effects, and is not much used nowadays, except in some special circumstances

- entecavir (ETV) - sold under various brands, not so expensive

- tenofovir disoproxil (TDF) - sold under various brands, not so expensive

- tenofovir alafenamide (TAF) - sold under brand Vemlidy, 3-4 times more expensive than ETV or TDF

TAF is the best drug here, as it has the least amount of side effects.

TDF works as good when it comes to fighting hepatitis B, however, it affects bone mineral density and kidney function.

ETV works almost as good, it does effect kidney function to some extend, but not so much as TDF.

All are one tablet a day and are taken for life.

Treatments with older drugs should be avoided, because hepatitis B then mutates and is harder to treat with newer treatments.

If you're able to start your treatment with TAF - go for it. If not, ask why, or change the doctor. Otherwise, if you're unable to obtain TAF (it's also not yet available in all countries), ETV is also a good choice.

Some doctors might have the following guidelines:

- use TDF, which is cheap, until your bones and kidneys break

- then use more expensive TAF

Because chronic hepatitis B treatment is a lifelong treatment (there is no complete/functional cure for it) for majority of people, and TDF has a proven negative effect on bones and kidneys, you should see why it should be avoided, if TAF is available.

Other than that: avoid anything which taxes your liver (alcohol, tobacco), eat healthy, light food.

There are no alternative diets, or "alternative medicine" treatments for hepatitis B - in fact, they can break your liver even further.

Then, as a responsible person, you should talk to people from your household (partner, children) about your hepatitis B - they should make a hepatitis B test, too! If they don't have it, they should take a hepatitis B vaccination (2-3 injections, depending on the hepatitis B vaccine available in your country).

In which country do you live?

Kalujacky profile image
Kalujacky in reply to mantana

Thanks so much. I really appreciate your time for such great and detailed information. my family dr. keep on saying nothing to worry there is no treatment it will stay forever in my body. when I insist he just get my AST and ALT done and say it’s normal. But I was never satisfied with his answers. But now since I’m getting aged Im worrying about it,

Because my dad had liver cerhosis and I know how hard and complicated we’re his last 2 years.

And now my aunt in India have this, she’s 75 and at this moment she is in ICU bloody stools and bloody vomiting. I know her everyday complications with ascites, Confusion , muscle flaps. She’s in such a pain.

I have a feeling that like my dad and my aunt , I will have same issues. Like I see my future.

Right now I have no symptoms at all. But there should be something to treat or cure.

My kids and husband are vaccinated.

I live in Toronto, Canada.

mantana profile image
mantana in reply to Kalujacky

Chronic hepatitis B is mostly asymptomatic. Until one day you discover you have liver cirrhosis, liver cancer, or other cancer. Then it's too late.

Please appreciate the fact that hepatitis B is a serious disease - it should be handled by a hepatologist or a gastroenterologist, not by a general/family doctor.

Hepatitis B treatment is easy, though life long - one pill a day without side effects for most people, plus blood/ultrasound every 3-6 months.

You should have good treatment options in Canada, especially in Toronto area.

Try calling your local clinic, or a local hospital - and please ask them to be referred to a hepatologist or a gastroenterologist. I'm not sure what is the procedure in Canada, but there surely is one. If you need a referral from your family doctor - please ask him for it.

If your family doctor only relies on AST and ALT tests to determine how much damage did hepatitis B do to your liver - he/she is wrong. In most countries people with positive HBsAg are referred to a specialist (hepatologist/gastroenterologist).

This is your life and be adamant to get a referral to a hepatologist or a gastroenterologist - who will do all necessary tests and start the treatment!

Please see the list of common mistakes compiled by United European Gastroenterology - some of the mistakes are made by your family doctor:

ueg.eu/a/147

Kalujacky profile image
Kalujacky in reply to mantana

Thanks for your help. I willDefinitely search for a good Hepatologist and ask my family dr. to refer.

Do I still need pill/treatment if I don’t have any inflammation or infection.

mantana profile image
mantana in reply to Kalujacky

You didn't have proper blood tests to answer that question - but, most likely, you will benefit from a treatment.

Given your chronic hepatitis B - your likelihood of getting liver cancer is a multiple of that likelihood for people without hepatitis B.

With treatment that likelihood will be much lower.

There are different guidelines, in different countries, for hepatitis B treatment, for example:

emedicine.medscape.com/arti...

Feel free to send me a private message if you feel like it.

Kalujacky profile image
Kalujacky in reply to mantana

Thanks so much. Your reply is much much appreciated. I’ll contact my family dr first thing in the morning and ask for the tests you mentioned in your first response. I hope it’s not too late,

Since my aunt is struggling in the emergency with bloody stools , it’s very scary.

Again thanks so much for giving me a push to do my tests.

Stay Blessed to keep helping other lives🙏

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