Hepatitis B: Hello, I found out I have... - British Liver Trust

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Hepatitis B

Paulika1991 profile image
21 Replies

Hello,

I found out I have Hepatitis B in December,they test me DNA in January and I had 379 ui/ml,then test me in August,but never get the results,the doctor ask for fibro scan,but now is almost December and the nurse told me she forgot!I been abroad in holiday and test there,my DNA is 3980 ui/ml,and I made a fibromax,but my liver is still fine,I been to doctor abroad and he said I should start treatment with interferon pegasys,Because is the best for my situation!I contact the nurse from uk,have her all the results and the letter from the doctor,but she said she wants to take me blood again,and I need to wait long time,she said if I want treatment then to treat my self abroad!I really need an advice,and what can I do?I don’t wanna go to this nurse anymore,she is very rude and treat me very bad!What can I do?Can I ask my GP,for a specific doctor?

Many thanks!

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Paulika1991 profile image
Paulika1991
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21 Replies

Hi Paulika,

It may be a good idea to go back to your GP and explain your situation and how you feel about the nurse. You could also request that you see a liver specialist.

You may find our general publication on Hepatitis B useful to read;

britishlivertrust.org.uk/wp...

Wishing you well,

BLT admin

Bolly profile image
Bolly

In the UK we dont treat Hep B with interferon any more. We use anti-virals such as Entecavir or Tenofovir. Interferon is the old treatment for Hepatitis C.

baldyonion profile image
baldyonion

Hi Paulika I have been living with Chronic Hep B since 2012 after having acute hep b that did not clear. I was referred from my local hospital to specialist hospital with a dedicated Liver and Gastro unit. Where I was given a fibroscan and liver biopsy. .

In December 2013 my consultant put me on Interferon....cut a long story short after 6 months Interferon not having any effect on hep b...quite a few side effects flu like symptoms. .brain fuzz tiredness ..was taken off interferon put on Tenofovir in Sept 2014....Dramatically bought all levels down recently had another fibroscan which was greatly improved on first one done in 2013. ..With Chronic Hep b you are at greater risk of developing cirrhosis and cancer ...I am a N.H.S. patient in UK. .I get bloods done every 12 weeks and ultrasound every 6 months and see consultant yearly.

My advice to you is demand from your G.P. to be referred to a Specialist Heptology and Gastro Unit at a hospital. Which is your right ..you have to take charge ...get a Liver Function Blood test at you doctors done as soon as possible. Talk to your Doctor not the nurse. Good Luck

Keep in touch

Baldonion

Paulika1991 profile image
Paulika1991 in reply to baldyonion

Many thanks,

I need to go for my blood tests in December,I wanna ask if you get the results from your blood tests?I mean if they send you letter home?

Maybefine profile image
Maybefine in reply to baldyonion

Hi Boldyonion

I note that you mentioned you have been taken Tenofovir as my specialist is recommending this to me. I have been living with Chronic Hep B for a number of years but a recent Fibroscan read 10.4 and he recommended Tenofovir immediately. I said I need time to digest taking this medication (for life) and its side effect. In the meantime 8 weeks past and I had another Fibroscan done this time read 5.2. He said we can afford to wait a further three months and take further tests. Because I have had Hep B for such a long time (probably since I was a child. I am Asian). I believe it'll be inevitable for me to take Tenofovir. Is there any side effect such as depression, bone problems?

Thanks in advance for your advice. Take care.

baldyonion profile image
baldyonion in reply to Maybefine

Hi Maybefine .....

I have not any apparent side effects from Tenofovir. ..the Interferon I was on had quiet a few side effects. The Tenofovir seems to be working my original fibroscan was 13.7 it's now down to 9.2 .If I was you I'd get the Tenofovir as soon as...once you start your have to take it every day and not miss . I get mine at the Hospital pharmacy every 12 weeks when I get my bloods done by Heptology Nurse

Good luck and keep well

Baldy

Maybefine profile image
Maybefine in reply to baldyonion

That was good advice thanks! I'll get onto it when I see my specialist in Feb.

baldyonion profile image
baldyonion in reply to Maybefine

OK keep on touch

B

Cabin4 profile image
Cabin4 in reply to baldyonion

There is a newer drug from Viread that does not have impact on kidneys and bones and starts with Vemeldy I think. It’s like tenofovir 2.0

Cabin4 profile image
Cabin4 in reply to Cabin4

Or you can try Reishi mushroom with raw honey. The studies on reishi is that it’s very effective at lowering hep b viral load

Charl1e profile image
Charl1e in reply to Cabin4

Hi Cabin4, I see your other thread has gone!! I wanted to ask what particular brand did you use. I'm in the event this gets removed, please pm me. Thanks, Charl1e.

Cabin4 profile image
Cabin4 in reply to Charl1e

Hi Charl1e. Please note that this info is not medical advice. Just research.

Reishi mushroom. You can buy it and do the boiling process yourself or you can buy it from a company that did the process for you. If you go on Amazon, there’s a few brands out there. The one I like is the one with Ganoderma (Reishi) Lucidium already in green tea. Also, Raw honey and organic tumeric power have anti viral anti inflammatory properties as well. You could mix it all together and drink on empty stomach every morning. Again, this is not medical advice.

Here’s a link about Ganoderma/Ling-Zhi/ Reishi: superfoods-scientific-resea...

But you can good it yourself. Good luck

Charl1e profile image
Charl1e in reply to Cabin4

Hi Cabin4,

Thanks for your reply. I completely get it isn't medical advice. I've always had an open mind as to what the "herd" would describe as "alternatives" as opposed to big Pharma manufacturing to make a buck!! But I won't get started on that topic.

Cabin4 profile image
Cabin4 in reply to Charl1e

Exactly. You know. But do look into it. You will be amazed from the info you find out about this king of herbs.

Cabin4 profile image
Cabin4 in reply to Cabin4

Forgot to mention brand: I bought the 365 Organic tumeric powder and you can get any raw honey.

Charl1e profile image
Charl1e in reply to Cabin4

Thank you.

Cabin4 profile image
Cabin4 in reply to Maybefine

Tenofovir can have an impact on kidneys and bones but there is the 2.0 version from that company and the medication is called Vemeldy, I think. Which does not have those same impacts and has been out for a year now

Nikolah profile image
Nikolah in reply to baldyonion

Hello there ! I stumbled on this page and was reading your post. You said you hep b didn’t clear and went chronic. Any idea why?

baldyonion profile image
baldyonion

I get all my blood test by Heptology Nurse at Hospital now as am in there care if there is cause for concern she would contact me . But treatmeant all going well at moment I get them done every 12 weeks....Asked to be referred to a Heptology Specialist. ..

Baldyonion

Cabin4 profile image
Cabin4

Your viral load is not to high but the other thing that doctors usually do before they prescribe treatment is check your liver function panel, particularly for ALT and AST. If they are above the limits then they prescribe antivirals. Other than that, they usually don’t because although you have a viral load whether high or low, your body may not be at the active stage.

LittleShrew profile image
LittleShrew

I am sorry to hear about your experience. I am sure you could ask to be seen by a different professional in the UK. You could also contact Pals in your NHS trust re unprofessional attitude from the staff.

Regarding treatment, I have had HEp B for many years and my consultant was very reluctant to prescribe me any medications.

However, recently he told me that my ALT levels are very high and he wants me to start antivirals ASAP.

My experience in the UK has been very confusing about the approach they take.

But I would encourage you to ask for the 2nd opinion if you are not sure what is going on.

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