Hepatitis Result, I don't know what's ... - British Liver Trust

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Hepatitis Result, I don't know what's going on.

Jjjo1 profile image
26 Replies

Okay. I did the Hep B and C test last month and I phoned the GP for the result today, I was told the GP will ring me but then the receptionist phoned me back to say that the Dr wants me to come see him on Monday to explain the result more. WHAT DOES THIS MEAN!!! Why can't the GP phone me.

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26 Replies
susieanna profile image
susieanna

How annoying and worrying; he should have called you really; is he not at the surgery tomorrow?

Jjjo1 profile image
Jjjo1 in reply to susieanna

I got the call eventually and he broke the news that I tested positive to Hep B. He however wants a retest just to rule out false positive.

Bolly profile image
Bolly in reply to Jjjo1

Wow that's a surprise. I guess you will now be booked in for more tests to see if it's a recent currently active infection or a chronic infection that you have had for a while.

Jjjo1 profile image
Jjjo1 in reply to Bolly

To the best of your knowledge is this disease curable.

Bolly profile image
Bolly in reply to Jjjo1

There are medications which will stop the Hep B doing any damage to your liver, so it's treatable yes. I don't think a doctor would use the word curable no. Don't know if this will reassure you but I've had Hep B for around 35 years and have led a normal life with marriage, kids, job etc. however don't jump the gun, you don't know if you definitely have it still. The simple antibody test if it comes back positive could mean either that you had it in the past but no longer have it, or that you have it now. You need a PCR DNA test before a doctor can say accurately if you actually have any active virus.

Jjjo1 profile image
Jjjo1 in reply to Bolly

Am sorry Bolly to ask these personal questions... 1.Do you have any side effects from the treatment.

2. Are these passed onto the family like kids and wife.

3. How old are you now

4. How old are you now if you've had it for 35 years.

Bolly profile image
Bolly in reply to Jjjo1

1. No side effects apart from the medication can reduce calcium levels so I take a daily calcium tablet. There are medication side effects (even a paracetamol has side effects) but you will be carefully monitored while on treatment so any problems get picked up quickly.

2. You can transmit Hep B by the same routes you were infected. British liver Trust website has good information. If you do test positive the docs will probably recommend your nearest and dearest are tested and vaccinated.

3. 58. My diagnosis was picked up when I donated blood at university in my early 20s.

4. There was no treatment then and when they did develop a treatment they thought it was ok to only treat high viral loads and that people with low viral loads would be ok. I had a low viral load. 123 units when they only treated at 3,000+. I only started treatment 5 years ago, so survived all those years without treatment, but if I had started treatment in my 20s I would not have the cirrhosis I have now, so it's better to treat.

I'm guessing there was some tiny snippet of a clue in your life history or medical history that your GP picked up on and homed in on testing for HBV and HCV. You seem calmer asking the above questions, has your memory brought back an idea of a possible transmission route. Sometimes people never know how they got it, I don't know for sure as for me it was none of the obvious. However it can be difficult revealing the past to people in the present if it may have put them and you at risk in some way. You will find a way!

Jjjo1 profile image
Jjjo1 in reply to Bolly

1. I really can't say how i got it to be honest, but am guessing maybe from birth because I was born abroad. Have had dental treatment abroad too. I don't think is through sexual means.

2. I tested positive to HB e antibody, is it a good or bad sign. In the result the Lab/microbiologist said HPT don't need to be notified.

3. The Dr wants me to repeat the test to rule out the possibility of false positive.

4. Am optimistic about the whole situation. This forum gives me courage plus if you live this long I may be lucky like you.

Question.

1. Do you think if have got it from birth, my son too will definitely have it.

2. How is life for you with Hep B un general, are you able to work or you are out of work?

Bolly profile image
Bolly in reply to Jjjo1

If you are positive for the Hepatitis B e-Antibody (HBeAb or anti-HBe) then the chances are you have chronic Hep B which means it has been with you for a while and may have caused some liver damage but then the fatty liver will have too. If you just had the antigen then that would indicate you were recently infected and hadn't yet produced antibodies.

It can be passed mother to baby - was your mother well, is she still alive, could you ask her or has she died. If she has died did she die of a liver complication?

Are you thinking there may have been a blood transfusion at birth, just being born abroad doesnt put you at risk, there has to be blood to blood infection. Do you have siblings, if you think it might have been passed from your mother they would most likely be infected too.

No your son wont 'definitely' have it. (Are you the mother or the father?) I'm the mother and my son is negative (he was vaccinated at birth). Nor does my long term sexual partner have it and we never used protection. However that is probably by luck rather than anything else.

Dental treatments are a possibility.

HBV has genotypes (or genes) which cluster in various parts of the world, so at some point, if you DO have HBV, you could get a DNA done on the virus which will tell you where it is most prevalent. My genotype is most prevalent in East Africa so I assume I got it there, probably from bed bugs or perhaps a mosquito bite as there was no other blood to blood contact. I do have ear piercings which were done before I was diagnosed but they were done in a hair salon in the UK so an East African blood sample seems unlikely to be in a UK hair salon piercing gun!

Until I was 50 or so I would say the virus didnt affect me at all. The GP would mention it in passing as it was on my notes, but nobody was ever concerned. I had to inform dentists and doctors and when my son was born I was put in a room by myself but for minor surgeries I was always on an open ward, never treated any different or considered 'contagious'! It only started to affect me after 30+ years with no treatment, so if you do have it and you do go on treatment you should be fine.

There will be some jobs it wouldnt be a good idea for you to practice - dentist, surgeon etc lol! In fact any job where you would be at risk of infecting someone via your blood would best be avoided - ambulance driver, sword swallower??!

You do not have to declare it to your existing employer unless you become ill enough to take a lot of time off. I seem to have less days off sick than many of the other people I work with - mums with young kids take a lot of days off, also women with PMT and migraines seem to take more off than me (I'm a woman so I can say that!)

I i remember right your original diagnosis was fatty liver. You can do yourself a lot of good if you a) stop drinking alcohol now and b) go on a really healthy nutrition plan (cut out sugar, eat fresh food, no smoking, cut down on salt) and loose enough weight to be a normal BMI. Cut down on any over the counter medication, ie reduce the stress on your liver as much as you can and give it lots of TLC.

MisterX profile image
MisterX in reply to Bolly

Hi Bolly,

Forgive me for asking the question - my knowledge of Hep viruses is very rough and nowhere near yours but this article confused me a little...are there some circumstances in which testing positive for HBe antibody (if HBe angtigen is absent) may be a sign (but not a guarantee) that the virus is inactive?

mayomedicallaboratories.com...

Bolly profile image
Bolly in reply to MisterX

I still struggle with the significance of the different antigens and antibodies - with Hep B there is a surface antibody and antigen, a core antibody and antigen and the 'e' one too, (cant remember what the 'e' signifies?) You can be either positive ++ to the HBeAg or negative to the HBeAg. Negative can mean minimal replication as well as no replication but i believe it does mean that you have been infected at some point, either currently or in the past.

There are so many variables it gets confusing hepbhelp.org.au/index.asp?P...

The Hepatitis B Foundation page on blood tests says:

HBeAb or anti-HBe (Hepatitis B e-Antibody) - This antibody is made in response to the e-antigen and is detected in patients who have recovered from hepatitis B infections AS WELL AS THOSE WHO ARE CHRONICALLY INFECTED.

Clear as mud.

Lets hope Jjjo1 will get a negative result next test and just be dealing with fatty liver instead!

MisterX profile image
MisterX in reply to Bolly

I feel your pain sister! :)

"Lets hope Jjjo1 will get a negative result next test and just be dealing with fatty liver instead!"

Absolutely.

Jjjo1 profile image
Jjjo1 in reply to Bolly

Hey Bolly,

Thank you so much for your responses.

My mother is dead, she died shortly after a brief illness which to the best if my knowledge doesn't have liver complication symptoms but her parents are still alive.

I am the father of my son. I guess his mother might be negative like your partner reason been is that Hep B is part of the screening of pregnancy in the UK (according to NHS website) but i can't tell if she was screened. She had HELLP during the pregnancy with a bit of severity, even if she wasn't screened for Hep B during pregnancy it could have been picked up during her HELLP complication because she underwent extensive liver function test and was in the hospital for 1 week or so after delivery. I still will get my partner and son tested and vaccinated if negative after I get the second test result.

I wasn't diagnosed with fatty liver, i was the one that suspected I have fatty liver due to the elevated ALT. Also chances that my next test will come back negative are relatively low according to the GP because i tested positive to HBV surface antigen but he just want a retest to rule out false positive.

According to my extensive research I gathered that when one test positive to anti- Hbe - There are two things, either you are highly infected or low infective and that can be decided by HBV DNA and Viral load test. If the HBV DNA is detectable then am in trouble. Am just hoping am low infective carrier. However, i doubt it due to the slightly elevated ALT, it may mean there is an going damage being done to my liver.

This whole thing gave me a different perception of health, one have to be very appreciative of good health.

Question

1. What were your symptoms when you developed cirrhosis.

2. How were you diagnosed.

Bolly profile image
Bolly in reply to Jjjo1

Yes hopefully the mother of your son was tested for Hep B during her pre-natal care.

I would wait until you have a definite diagnosis before discussing testing or vaccinations. Both my husband and my son were given the option to be tested and or vaccinated. My son took the test but chose not to be vaccinated. He no longer lives at home though visits. My husband declined to be tested or vaccinated, his choice.

If you are 2 stone overweight as you say then you probably do have fat in your liver (and around other organs too probably). It can only help to reduce your liver inflammation, and improve your overall health, to loose weight. Also as I suggested, stop drinking alcohol and try and cut down or cut out as much sugar and salt as you can. I switched from hard fats to olive oil as much as possible, particularly as I found fatty foods such as fish and chips made me sick.

I have no idea when I developed cirrhosis so I dont know what symptoms to describe. I was always the one who got more tired than most. I used to orienteer and hill walk but was always the slowest or at the back, I assumed I was unfit or lazy but looking back it was probably the liver damage that caused fatigue and reduced energy. Also I could never drink much before I felt unwell, so giving it up was no problem, lol!

How was I diagnosed? Do you mean with the Hep B (trying to be a blood donor at university), or the cirrhosis?

Jjjo1 profile image
Jjjo1 in reply to Bolly

Hey Bolly,

Firstly i have to thank you for your consistent responses. I feel like this website is the only thing left with me in this world. So thank you!!!

I can't disclose this with situation to my siblings yet both of them are expecting - I will just STRESS that their kids get vaccinated when they have them. I haven't really discussed situation in details with my partnet, i only told her I tested positive that the Dr wants a retest to rule out false positive. I try to wear brave face around the house and avoid contact with my son as much as I can - Am even thinking of moving out briefly because if my son test positive, i will be EXTREMELY devastated. It will be too much for him, he's only 2. My life SUCK!!

1. I have started losing weight from the day i got my liver test result and i can see improvement already.

2. I don't drink alcohol, i have never had alcohol in my life.

3. I have a bit of sweet mouth though but gave up sugar since i started my weight lose regime, it was a walk in the park - easy!

4. As regards to the energy bit i am very energetic and sporty.

Questions.

1. Do you know of any side effects of the Hep B vaccine for a child.

2. I mean how were you diagnosed with Cirhosis...as at the time of your diagnose did you have a blood work or it was through CT scan.

Bolly profile image
Bolly in reply to Jjjo1

I am shocked that this is affecting your relationship with your son. You are not a leper. Your son is not a leper. I am NOT a leper. Your son will not catch HBV from your hugs and cuddles and contact. You can bath him, read to him, put him to bed, take him to the park, play with him ,love him as normal. You can be practical and make sure your toothbrush and razor are out of his reach and cover any cuts with a dressing. I understand this has been a sudden shock and you have not yet got to grips with it emotionally. But get to grips with this over dramatic response and the way it is affecting how you feel and behave toward your loved ones.

In fact I am not just saddened and shocked, I am going to go away and sulk and not answer any more questions from you until you say your thoughts of moving out were a moment of madness which you have recovered from, and that your are holding your son close and cuddling him and loving your partner just as much as ever.

Jjjo1 profile image
Jjjo1 in reply to Bolly

Hey Bolly,

I know, the idea of moving out is a moment of madness, it down to the fact that i didnt know how to deal with it. I guess am doing better now.

The waiting times for NHS though is a bit frustrating but i guess i have to get use to it.

Bolly thank you very much... I really appreciate your support.

Am more optimistic now than before. I guess a part of me is coming to term with this Hep B reality, as long as i can suppress the viral load and infectivity i will be fine.

Questions.

1. Do you know of any side effects of the Hep B vaccine for a child.

2. I mean how were you diagnosed with Cirhosis...as at the time of your diagnose did you have a blood work or it was through CT scan.

3. Do you have to be on medication for life?

Bolly profile image
Bolly in reply to Jjjo1

1) I don't know anything about vaccine side effects in young children. But I believe the NHS routinely vaccinate babies of HBV positive mothers within 24 hours, so am guessing the vaccine is ok for babies it should be ok for a 2 year old. This really is a discussion you should have with your partner and the doctors, not me.

2) I had a fibroscan that scored 12.4 which is the bottom end of early cirrhosis.

3) yes. At the moment each tablet I take costs around £7 but my lovely hepatologist gives me a number of months supply which I get on one prescription. GPs cannot manage/monitor/prescribe, it's done by a hepatologist at a main hospital. There are at the moment 4 different suitable antivirals so if one doesn't suit there are alternatives.

Like Katie recommended, download the Hep B leaflet from the British Liver Trust website. I helped write it, hah ha!!

bantam12 profile image
bantam12

You may not need tretment , depends if its acute or chronic and what your levels are.

My husband had Interferon for Hep C and was clear after a year of treatment.

Jjjo1 profile image
Jjjo1 in reply to bantam12

Looking at my result i think its Chronic. I tested positve to the surface antigen HBsAg, and HBc IgM is negative.

My best hope now is that it should be low infectivity.

Pray for me if you believe in God.

Thank you so much!

AyrshireK profile image
AyrshireK in reply to Jjjo1

Best wishes, hope it isn't as bad as it sounds. So glad we urged you to not wait those three months and to get the Hep B & C tests sooner.

Love to you going forward, Katie xx

Jjjo1 profile image
Jjjo1 in reply to AyrshireK

Hey Ayrshirek,

I only have you to thank for the test I took sooner. I was going to wait and listen to the Dr. Over the cause of all these test and its interpretation I figure out that GPs are just figure heads. They do not have answers to 80% of things. The annoying part is their high level of dismissive behaviour when one have health complains.

Thank you very much once again.

AyrshireK profile image
AyrshireK in reply to Jjjo1

Fingers crossed it isn't as bad as it currently sounds but if it is, the sooner they put treatment in place the better (i've no experience with Hep B so no real knowledge on that).

Love and best wishes, Katie x

Bolly profile image
Bolly in reply to Jjjo1

Of course GPs don't have answers to everything, they are 'generalists' as in General Practitioner, not specialists. If you are HBV positive make sure you are referred to a hepatologist rather than a gastroenterologist. And one who has a Hep B clinic not a Hep C clinic or general outpatients.

Luckily we have charities like the British Liver Trust which mean we can become 'expert' and informed patients. Sometimes it helps to a be a patient patient, sometimes it helps to be on top of tests/results etc and not let things slip through the net. In a way we need to become our own medical secretaries as the real ones are just so overstretched and busy.

Tatjana profile image
Tatjana

Sorry I have not commented Jjj01 but I have seen that Bolly has replied. If you want to know anything medical just ask her! I do. Good luck with your meeting. By my experience, by the sound of it you are being well looked after by your GP because if he asks you to come in, it shows he cares and understands.

One thing I can tell you, I was diagnosed with HCV and it has not been passed onto my husband nor my two children.

AyrshireK profile image
AyrshireK

Jjjo1, have you seen the British Liver Trust information page and downloadable leaflet on Hep B ? Their leaflets are really good and might give you some of the further information you are craving just now - although your diagnosis is not yet 100% conclusive.

britishlivertrust.org.uk/li...

Best wishes, Katie x

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