Chronic Hepatitis B: Hello, I'm new here... - British Liver Trust

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Chronic Hepatitis B

teanchat profile image

Hello, I'm new here and this is my first post. Is it possible to have chronic hepatitis b and not infect my husband or my children?

My story starts around 1975 when I gave blood, for the first time, as a blood donor. Letter came, something about Hepatitis, telling me, to go to my GP and don't give blood again.

My GP sent me for blood tests then told me my liver must have got ill but it didn't make me feel ill but now everything was ok and my liver is fine. So I got on with my life, got married in 1975, I was 21 then. Moved to another area of London and a new GP. Had my son in 1981 and my daughter in 1984. Throughout the years I have struggled to feel well which put a strain on my, otherwise, happy marriage. ( Unfortunately things got really bad in 2009 and we are now divorced). I have had many blood tests and investigations. My liver blood tests have always come back normal. My ESR has been very high (40 and sometimes 65).

Just recently, in 2014, I saw a rheumatologist for something else who asked me about my medical history and by chance I mentioned the hepatitis. story of 1975, and she tested me for it and now I am formally diagnosed as having, Chronic hepatitis B, e-antigen negative. I am not on any medication for it, as yet. I have only just realised how serious this virus can be from looking on the internet.

I would love to chat and learn more.

Thankyou for reading my story.

13 Replies

The answer to the question in your first paragraph is 'Yes'. They go to the GP and have a full set of Hep B vaccinations.

I've had Hep B for 40 years and have not infected my OH nor my son - both have been blood tested for antigens.

You must go to your GP and discuss being put on anti-viral medication such as Tenofovir. Hep B is a nasty little virus even if your viral load is low and your liver function tests seem to come back normal. I was not treated for many years as my not very clued up at the time GP said my 'antibodies' were low and i did not need medication. Its the viral load level that should be checked by a DNR PCR not your antibodies. Due to not being treated i developed cirrhosis and liver cancer.

Make an appointment with your GP today and get any family tested as well and then vaccinated.

Good luck

fisherking1 profile image
fisherking1 in reply to Bolly

Tragic story I feel for you Bolly I will pray for you and your family, are you on a transplant list? Is the HCC (hepatic cellular carcinoma spreading ? what treatments are you on and what procedures have been performed ? What is the prognosis?


Bolly profile image
Bolly in reply to fisherking1

Thank you for your concern Drpeter but its teanchat where the concern should be directed. I am on treatment and being well looked after, my Hep B is undetectable and my cancer has been surgically removed. My family have been checked and i have not passed the virus on to them.

However teanchat has none of this and i recommend she gets her family checked for the virus and then vaccinated and herself put on anti viral medication under the care of a hospital hepatologist, in the UK a GP cannot do this as the medication has to be administered under the care of a specialist.

Thank you for your prayers but i am not religious - however if praying for people makes you feel better then by all means pray.

teanchat profile image
teanchat in reply to Bolly

Hi Bolly, My son, daughter and ex-husband have all been tested and are clear. I wonder why I didn't infect my son and daughter when I gave birth to them? Because, at that time, I did have Hep B but I didn't know that I had it? Now, I only live with my daughter, and I will make arrangements to get her vaccinated. Thankyou for sending me the website.

Looks like I've had Hep B for at least 41 years. I don't really know how I got it. I'm 61 now and I only discovered I had it two years ago.

My next appointment with the liver doctor, at the hospital, is in November. I see him every six months. Each time I go he does check my viral load. Sometimes it's undetectable but sometimes it's a bit higher. He said, he wanted to monitor me and then decide wether to give me anti-virals. Well, it's been two years of monitoring. I will definitely speak to him about it next time I go. Thank you for advising me about it. I will also ask him for a copy of my blood tests.

Thank you for taking the time to reply and for your helpful advice.

Good wishes

Bolly profile image
Bolly in reply to teanchat

Were the medics aware of your Hep B status when your children were born? They should have done bloods during your pregnancies and picked it up even if you hadnt been aware/told them. My son was born in 1994 and was vaccinated at birth. Am glad to hear they are clear but do give them the choice to be vaccinated - i recommended it to both my OH and son and let them decide.

I dont know how i got it either. I am 59 and have had it at least 40 years, like you only found out when i tried to donate blood. Recently i had it genotyped (yes viruses have genes too!) which isolated my genotype to being most prevalent in East Africa which is where i was just before diagnosis. I can only surmise i was either bitten by a mosquito or a bed bug with blood contaminated by Hep B. Unusual i know, but possible.

My hepatologist told me that todays protocol is to treat ALL patients with chronic Hep B. Have you had a Fibroscan or any sort of imaging to check the health of your liver, blood tests alone dont give the whole picture.

In 2012 the European Association for the Study of the Liver (EASL) published guidelines for the treatment of Hep B. These said:

"Patients should be considered for treatment when they have HBV DNA levels above 2000 IU/ml, serum ALT levels above the upper limit of normal (ULN) and severity of liver disease assessed by liver biopsy (or non-invasive markers once validated in HBV-infected patients) showing moderate to severe active necroinflammation and/or at least moderate fibrosis using a standardised scoring system"

Sounds like your hepatologist is following these guidelines - unless your ALT has ever gone over 50 and your viral load over 2000iu, in which case they are not.

I would just say, that my viral load never went above 130units and my ALT never went above 183 (upper end of normal is 50) and STILL i developed cirrhosis and liver cancer, for which there is very little treatment and poor outcomes.

Its your health and your body, but if it was me i would be assertively discussing with your specialist why they think you are ok to carry on just with monitoring. Have you had a biopsy?

teanchat profile image
teanchat in reply to Bolly

I had my son in 1981 and daughter in 1984. I don't think, routine blood tests for Hep B were done when I was pregnant.

That's interesting, about getting it genotyped. I will ask. Don't know if the NHS will do it?

I've had an ultrasound in 2014 and in 2015. As far as I've been told liver was ok but gall bladder had a few tiny stones. I will get copies of the reports and not just leave it up to the doctors.

I've been having a look at my previous viral loads. Sometimes they are undetectable but they have also been 2100, 1200 and 10,000 IU/ml which looks a bit worrying when I compare them with yours.

I recently had some blood tests at the GP. I'm going for results this week. Let's see what they show up. It's a new GP because I moved house and had to change GP so she's giving me a good check up.

I'd like to ask if you or anyone else who's reading this has any of my symptoms. I feel tired, no energy but also I find it difficult to concentrate, it's as if I can't think straight. Throughout the years I've discovered that if I reduce bread, pasta, rice, sugar and fruit I feel ok. I've often mentioned it to my previous GP but no explanation.

Any ideas

Thank you for all the advice Bolly. It's enabled me to take more control of my health.And Thankyou to HealthUnlocked.

Bolly profile image
Bolly in reply to teanchat

I had the genotype done by my hepatologist as routine, when checking the viral load. All my treatment has been done on the NHS.

Your viral load is high enough, in my view, for you to be on anti-viral treatment. Your liver is under constant attack, and the longer this attack goes on the more damage/fibrosis you get and the liver function starts to go down. You say you have tests every 6 months, and that at times your viral load has been 10,000 Units. It could potentially be going up to this level between tests, and you would never know.

The liver does over 500 things for us, including helping with digesting food and storing glucose for energy, and symptoms like fatigue and digestive issues go side by side with liver damage.

All i can say is that my GP was a bit like your medics, a bit out of date and not really aware of the damage being done, until i went complaining of fatigue and nausea and 'luckily' saw a locum GP who did not know me, started from scratch again including doing a cancer tumour marker test which came back a bit high, and bingo, a month later i was being operated on for the removal of a tumour in my liver.

If i had not seen this GP i expect my own GP would have said, come back in 6 weeks if you dont feel any better and in 6 weeks my cancer would have been inoperable and i would most likely be dead. This was 6 years ago. I'm not suggesting you are in that position, but Hep B has a very high risk of cirrhosis and liver cancer compared to other types of viral Hep. I wish you good luck and let us know how you get on.

teanchat profile image
teanchat in reply to Bolly

Hi Bolly, thank you for all the helpful advice and I hope all is well with you.

I had a very unsatisfactory appointment with the GP. They were running very late (over 1 hour) but I honestly didn't mind waiting. When I went in GP apologised for the lateness but was so flustered and in a hurry to get me out so she could see the rest of the waiting patients.

I am new at this practice so I don't know the GP doctors at all. To be fair I'm new to them too.

My liver results were in the normal range which was good. This was just normal blood test not a viral load. My next viral load test will be in November.

The parathyroid was not normal. (I already take vitamin D3 for it). We started to discuss it but in the confusion I'm not any wiser whether I should increase the dosage or not. I take 1,000 iu at the moment.

And I noticed that the kidney result had some comments from the laboratory but I don't understand it's meaning. (The GP didn't even mention this result. I saw it later when I got a copy from the receptionist).

Just wanted to let you know how I got on. I still need to see a GP for an explanation of the results so I will be making another appointment with another GP in the practice soon.

It's feels like, one step forward and two steps back.

Yes i agree with you that sounds unsatisfactory. Try and get another appt with a different GP and start again. Take a list of questions with you so you dont get side-tracked or flustered and sit there until you have gone through them and got answers. GP's run over time because people need more than 7 minutes or 10 minutes or whatever, and if the person that makes them run over time is you, so be it.

Can you scan and post your results here and i can look at them, or if not, type out the kidney one.

teanchat profile image
teanchat in reply to Bolly

I went for my hospital appointment today. It's every six months, to keep a check on the Hepatitis B. He said my blood results were good. No anti viral medication required. I asked for a fibroscan to check on the condition of my liver and again said not required as my results show no need for one. I said, I've had Heb B at least 40 years, how come, my liver is ok? He's sending me for another ultrasound. I asked if he checks me for cancer and he said he does.

I feel as if nothing is done to prevent any bad stuff happening.

It seems, they are keeping a check and if or when something bad happens, then they will treat it.

Is this ok? Are they doing what is normally done for Hep B or do I need to go to a different hospital?

My hospital is in London (UK) and is considered very good but I don't know if its good for HepB.

Serum parathyroid hormone - (NNP963) - 10.1 pmol/L

I already take 1,000iu of vitamin D 3 for it.

GFR calculated abbreviatd MDRD - (NNP963) 100 mL/min

I've typed the results cos I don't have a scanner.

Thank you for all your help. How are you?

Hi Bolly, I'm chronic HBV from birth and was wonder what antiviral are you on and for how long? And how much longer? Any side effects?

Hi Cabin4, I'm chronic HBV too, for about 41 years and maybe longer. I'm 62 now. Sorry, I can't advice you about antiviral medication because I'm not on any yet (it was only 2 years ago that it was discovered that I have this virus and the doctor is still monitoring my viral load results before he decides to put me on medication), but I was wondering, how are you? How is your liver?

I have had 2 ultrasounds, which showed my liver ok but I don't feel well and if I eat carbohydrate food, starchy food or any sweet food I feel terrible. I cant think straight, sort of drunk. Is this early symptoms of HE? What symptoms do you have?

In my life I've hardly ever drunk. When I did, it would be half or one glass of wine because even that small amount affected me. Do you think this has protected my liver from getting really ill? Now I don't drink at all.

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