Is my doctor doing enough?

I was formally diagnosed with chronic hepatitis b two and half years ago. I'm 62 years old. To cut a long story short, looks like I've had it since 1975.

Actually, I attend one of the London hospitals you suggest. So far they monitor my viral load and I've had two scans. Recently I asked whether I should be on antiviral medication, was told,no. I asked about a fibroscan and again, no. But he did book another scan. I was assured my liver is ok. But is it? I've had hep b for over 40 years.

I'm glad I've found a community for hep b.

Good luck

15 Replies

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  • Hello and heaps of love to your good self. Another case of the liver team feeling great and the patient wondering if they are being overlooked for something. This is a UK norm.........

    The NHS just does not have time to discuss and teach all the reasons they are so relaxed about you.....So here goes........Only 80% of patients with HBV have it bad enough to need or benefit from treatment, the rest have liver that are doing a great job of functioning perfectly well and controlling hbv all on their own. Without doubt your liver team have seen this in your results. They have probably notes for years, you have excellent Liver Function Blood Tests, showing no swelling, no hard work, no bile over production and no damage at all, the problem is they seldom explain all this and therefore their reassurance is a little thin. see

    hepbpositive.org.uk/liver-f... all this good results make them say strange things like "healthy carrier" to us and we go off wondering how the hell can I be a healthy carrier of a deadly cancer causing killer! But what they forget to say is we are heading for a death from old age like everyone else, which is so what we need to hear. Then remember HBV is a virus that has different levels if we have 1 billion of it in every millilitre of blood it can cause cancer in 20 years, but you probably have way less than that and so they are hey this level is not known to cause cancer so why offer medicine to remove it? Further they do ultra sound scans that pick up ANY sign of liver damage and they probably have not noticed any for 40 years and they are thinking well it would take 40 years to harm from here and nothing has ever happened so lets not offer medicine as the liver is controlling things so well. see

    hepbpositive.org.uk/liver-u... and again we are not really told how HBV works to damage a liver over decades and so get no reassurance from their "it's fine" comments every 6 months.

    Finally fibroscans are a bit of a waste of time they are a sound pulse that echos off anything in the liver showing hardness, this can be Fat, Gall stones, scarring and cancers and also gradual stiffening often from diet or alcohol. Yet Ultra sound does exactly the same job with light scanning for densities across the liver. Bottomline I have never met a heptologist who could explain how one is better than the other.

    Trust the process you are basically having a bit of HBV in your blood that like the bulk of patients is actually doing nothing to harm you. It would be good to call me on 0800 206 1899 as I feel in all these years no one has given you a deep understanding of why you are going to be fine and how your HBV is just inactive. Paul.

  • Hello Paul, nice to meet you (well talk to you) I'm thankful for this community because it's specific for hepatitis b.

    It's true, my liver function tests have always been normal and throughout the years my GP has done many because I've never felt well but all the test usually came back normal except for my ESR which was about 60 twenty years ago and now 40. Is hep b and high ESR connected? I asked the liver doctor but he didn't seem to know.

    My viral load has only been monitored for the passed 2 1/2 years, which was when I got the diagnosis. A few times its been undetectable with a few flares in-between of 1,200, 2,000 and 10,000. Last month it was undetectable, again.

    I understand your explanation that my body is doing a good job, keeping the virus under control but the virus has been in my liver, rumbling away for at least 40 years.

    When I was 20 I donated blood. Got a letter, something about hepatitis. My GP did blood tests and told me that my liver blood test was now, all clear. At that time, I didn't know any better and probably my GP didn't either. So for the past 40 years I've been oblivious to having hep b. That's why I'm worried. Is it possible that liver is ok after 40 years?

    Thankfully, I haven't infected anyone in my family. They've all been tested.

    Thankyou, I will ring you soon.

  • the tests are all saying the liver is tip top so do not worry on that score about 150 million people have this type of HBV with too small an amount to affect the liver. However the ESR is a bit high, at 60 a score of 35 is best. erythracyte sedimentation measures the stickiness of blood and the common indicators for it being high are thyroid issues, anaemia, arthritis and connective tissue issues. So it seems a non HBV issue. But one affected a by diet also. What do you eat?

    Green foods etc cabbage avocado aloe vera spinach beets Brussels sprouts all help build liver strength and may help. Water actually drinking 2 litres a day is also worth a try. There again a focus away from fried and oily foods can help too. The flares you are having from 0 to 10,000 levels of HBV may be related to diet also. Alcohol and fizzy Drink and pain killers are known to do this.

    But I would not worry about HBV it has fallen neatly into a non active category and will be very unlikely to wake up and cause issues after all this time without a alcohol, drug or obesity motor.

    Paul hepb.org.uk

  • Hi Paul, thankyou for reassuring me about my hep b. I will read the relevant information on the sites you suggested and ring you soon for a chat.

    My new GP is referring me to a rheumatologist. I seem to have quite a few symptoms for an autoimmune problem . Maybe that's why ESR is high.

    I eat green beans quite often and avocado sometimes. I will start eating more green vegetables and try to remember to drink more water.

    I hardly ever drank alcohol and now, not at all. I don't drink fizzy drinks. At the moment, my aches and pains in my ankles and back are bearable so no pain killers but I read not to take paracetamol cos of liver. I think, I read that aspirin based products are more ok. Is that correct?

    I don't eat a lot of fried food but I do use a bit of olive oil and sunflower oil. I better cut down a bit. Is cheese ok? I usually have about 2 slices a day. Is ham ok?

    Thankyou for reading my messages, all the best x

  • Hi There

    You are great at managing, this attitude of "can do" to change of diet is wonderful. You would be surprised just how few of us manage this. 99% of people eat what mum cooked even if its killing them. Yes you sound like me arthritis and immune stuff with me too. I avoid sugar and salt a lot and feel real benefit I actually see my joints swell with them, so excellent resolutions for us both. Cheese is good and olive oil is also good sunflower too but not fried. With pain relief I fight to avoid it, but yes go for the more easy on the liver asprin approach. There are things for joints in the chemists and health shops like omega 3 is a good idea also. Rheumatism is behind the ESR methinks and after many years of hbv helpline calls I have not heard of ESR and so many people thousands have sent me blood test results so feel you thoughts on that and the informations I have researched point that way. Forgive me but when there are similar issues to my own I think its good to be able to talk of my personal experiences too. Lets be chums on this page and we can share the burden and the aches so to speak. Paul. I spent the whole day at a Public Health England conference lobbying for millions of HBV tests in the UK and preparing an evidence flow chart, so its nice to come home and get a little human. I needed a liver friendly pain killing jab to get thru it all today and there were enemies as usual in the Department of Health wanting to dismiss our HBV crises.

  • Hi Paul, I hope your perseverance for HBV testing will pay off and it will happen soon. Maybe, for now, we should encourage our friends and family to become blood doners, since that is the way some people find out, including me and the blood banks would benefit too.

    Please, feel free to share your health issues, as well, it's ok with me. By discussing our health, we will learn from each other.

    Thank you for your praise with regard to my being able to make changes to my diet. The reason, is probably because I've had a lot of practice. I used to think I had food intolerance. I just didn't feel well and my feet would be swollen. After many investigations with no answers from the doctors, I started thinking it might be food related. So with the help of books on the subject I would follow their suggestions of cutting out some foods then re introducing them. Unfortunately, made no difference. Eventually, after 30years with swollen feet and just by chance, I was diagnosed with lymphoedema.

    I was wondering, is it possible that HBV contributes to autoimmune stuff to happen?

    With regard to your avoiding sugar and salt, I too, try to avoid sugar and carbohydrates and I feel much better for it, untill I cheat, well I'm no saint!

    By for now.

  • Yes we do find some immune system issues

  • Thankyou

  • Sorry so abrupt, actually had a family with HBV struggling to vaccinate their children and accidently clicked reply.......mobiles are not the best for these chats. I really get into the kitchen being the best medicine chest......Immune issues are really quite common, I really feel it good to hammer the rheumatologist with a few diet questions. Hopefully they are up on such thoughts, I get concerned they are always straight to pills and lotions without the diet exercise aspect. Personally I am just amazed at the anti arthritis effect of my diet I vanished the fizzy drinks and literally my hands stopped growing knobbly knuckles. I have noticed that patients with high loads of HBV 500,000IU/ml get Lupus more often and there seems a link between the blood virus and several aging type conditions. I rarely send this link of other illnesses associated with HBV as it creates a real bad attitude in more anxious patients hepbpositive.org.uk/illness...

    I find most of these extra conditions only in patients with active persistently high ALTs liver readings. Also although the names sound awful many of these conditions are just skin colouration vitiglo and liver spots and spider nevi being the same. But several have auto immune things going on. Again I properly stress you are not heading for any of the cancers or cirrhosis outcomes at all as your tests point elsewhere. But the skin, headache, general aches, arthritis, these more minor areas, well they do seem more common. I guess the whole area is just hopelessly under researched as is the power of diet to overcome such things. But in 10 years of helpline calls we try (with the more level headed patients) to talk about these areas. Paul

  • Hi Paul, That's ok. No need to apologise. I will write to you tomorrow cos I better get some sleep ( I only, just saw your reply ). I'm going to hospital for my liver, ultrasound tomorrow morning. Goodnight

  • Hi Paul, I had my ultrasound scan for my liver this morning. Results in about 5 days. Last time they found, very tiny stones in gall bladder but I was told to ignore them. Any advice, please.

    Thanks for explaining about the immune issues. I'd rather know all the information even if it sounds a bit worrying.

    Thanks, Paul.

  • Dear Tean

    I always recommend a 2 litre jug of water until they are gone, simples. way better than surgery. They are often caused by the base substance in pills mine were actually from a box of paracetamol a day recommended by mu GP! So yes to lots of water, greens, fibre and starch foods etc. No to pills and sudden weight loss.

    Ridiculously gall rips are now the 2nd most common uk operation and almost no GP is effective in making certain people do the above. Bit like the 2 million on diabetic meds unaware a 2 stone weight loss or a bit of restraint with the sugar bowl would have made them well again.

    Definitely try the jug. Also if the stones are causing no or very little pain do not ley them do anything to you. There is a mania to chop gall bladders, just as their was a mania to do appendix and before that tonsils. Whenever they do not understand a things function they start chopping it off too quick!!!! Sorry to be abrupt but I really feel all surgery has to be a last not first resort. Paul

  • Thanks, Paul, I will start drinking more water. I'll get my 2 litre bottles ready.

    I'll speak to you soon, probably when I get my liver, scan results.

    By for now. Best wishes

  • Hi Teen chat

    Re gallstones some do and donts

    Goodies

    Tomatoes

    Apples

    Cherries

    Lemons

    Blackberries

    Watercress

    Blueberries

    Kale

    Radishes

    Grapefruits

    Lime

    Celery

    Broccoli

    Pears

    Spinach

    Red grapes

    Beets

    Carrots

    Raspberries

    Asparagus

    Baddies

    Fatty meats

    Dairy especially cheeses

    Refined Foods

  • Hi Thankyou for sending me the gallstone list of 'do's and don'ts'.

    Sorry I've been late in replying. I've been busy and tired. Talk to you more another day x