My story so far. Hi I’m new!

[Steven_]

It’s been a rollercoaster of tests and procedures since being diagnosed with chronic hep b back in November 2018 at 37 years old. It looks like I wasn’t treated when my mother pregnant as my brother is positive but sister was treated. My diagnoses only came about as I thought it was gallbladder pain but my gp arranged a scan and dismissed it. when I went back and saw the locum she noticed the fatty deposits mentioned in the report and sent me for blood tests

After what seemed like every test possible I was put on Interferon and what a horrible 6 weeks that was. I finally told the Hep Nurse to take me off it or kill me. I am now on Tenofovir and the viral load is no longer an issue but my liver function isn’t returning as expected. I’ve been on bi daily blood tests for weeks but my alt is stil over 120 my albumin is 38, Bilirubin at 35 and platelets are in the 40’s. My original biopsy has been sent to Addenbrooks for a second option and they think my liver is cirrhosed and not fibrosed as first thought despite a Fibroscan of 41.

The consultant saw me this week but I’m at the point now where I’m just going into clinic every other day but said she needed to chat with me. At the moment she is un sure as to why the blood levels aren’t returning and why I’m still symptomatic with swelling, hot flushes and stomach cramps but believes there could be an underlying disease they haven’t picked up on as the immune system is now fighting the liver. I’m booked in for an EEG this week, another load of blood tests, MRI scans with contrast for liver, pancreas and bile ducts and another Biopsy but will need to be done at Addenbrooks due to the platelets. It’s then looking at compensated liver cirrhosis which she thinks is best case or decompensated cirrhosis which is worse case and might require transplant. My wife is a nurse and even she was tearful by the end of the meeting.

I think the frustrating part of it is that I do feel tired and in pain but no more than before the interferon and that If I was lying in bed more sick I would be able to take it all in better.

I just wanted to get this off my mind. There doesn’t seem to be any support groups locally but my wife is amazing and the hep nurse is really supportive.

You just don’t know what the liver does for you until it stops doing it

[Casinobo]

Hi Steven,

I do not have enough experience to comment to your specific situation, but Im sure some help is coming. Sounds like they are searching hard for a diagnosis. At least they are working on it. When the Liver isn’t working right you find out about it for sure. Praying for you to get sorted out.🙏🙏🙏

[Bootandall]

Hey Steven,

Welcome to the forum. I don't know about Hep B specifically, but I've read interferon is tough. Just wanted to let you know the support here is amazing, sorry I can't help more.

[jojokarak]

Hiya Steven I know it's a long hard process the doctors trying to figure out what's going on it's both mentally and physically draining, so please don't try and take too much on board until they have answers. Your best concentrating on your well being on a day to day basis and your wife 😊

It took about 3 years for the doctors to find out why my liver was deteriorating and have a transplant.. Fingers crossed this will not be your case but I was just giving an example of how much turmoil it could be worrying... The liver is an amazing organ and surprises us all and with the right treatment and it being looked after it can turn itself around 😊

The tests are a pain but so helpful and necessary x

[Hidden]

Hi Steven,

So sorry to hear you are having issues, but it does sound like your doctor is looking at every possibility.

I don't know about HepB, but the liver can have an acute reaction for a while and then calm down at some point - and some doctors prefer to give best and worst case scenarios so their patients aren't caught off guard.

My husband is the one with cirrhosis and any illness in one's spouse can be stressful for you both.

It is great that you have support from your wife and the hep nurse and perhaps the doctor can refer you to some support groups as more is known.

I hope that the doctor suggested since your liver values are off that you not drink at all, since that impacts an ailing liver and also suggested you eat healthy as these won't hurt and might help.

Wishing you a both a speedy diagnosis and recovery.

Best wishes,

Mary

[Steven_ in reply to Hidden]

Hi

Thank you.

I haven’t had a drink since diagnosed but I’m only a social drinker so once every few weeks or even months. They have just suggested a fat free diet which my wife has me on.

I’ve had a busy weekend which has taken it out of me today and the EEG is tomorrow with more blood tests but hopefully a good night sleep and then I’m ready to go again

[Hidden in reply to Hidden]

Mary

I think I’ve said before but I think when someone is really ill - say with cirrhosis - then it is a much more stressful time for the carer than the patient. I honestly do.

Miles

[Lalaloo2211]

What medicine? S it vemlidy?

[Steven_ in reply to Lalaloo2211]

Currently on tenofovir

[Lalaloo2211 in reply to Steven_]

Ok cause am stage 2 . Did fibroscan yesterday am hepb positive , and doctor recommend me vemlidy (taf) and cons s once stop can cause flare up. Is your medicine needed to be taken till life?

[Steven_ in reply to Lalaloo2211]

Yes it is. The interferon really worked but made me so ill but in under 3 months of being at 130million I’m now at 400

[Lalaloo2211 in reply to Steven_]

What do u mean 130million. Am new to these things. Just got my diagnose yesterday.. so am comfused n stressed n worry.. my hbv iu/ml is 169.000.000 is it very high risk ?

[andy-g]

Hi Steven, I have hep b and have been through the whole process and know how alarming it is. My doctor would not put me on interferon as he said the side effects were awful. I was and still am on tenofovir. My journey ended at Addenbrookes with a transplant. You are in very safe hands. I hope they find the cause of your low platelets at my worst mine were at 50. I just want you to know that however things are you can come out the other side in tact. You have excellent support and if I can come through it all in my late sixties you have every reason to be optimistic. The most important is knowing there is a problem some people only find out too late. I wish you all the best and hope your situation improves.

[Lalaloo2211 in reply to andy-g]

What is platelets? Have u ever taken vemlidy (taf) just diagnoses with stage 2 fibrosis scan, is your medicine need to b taken for life? Confuse n stress .. got my diagnosis yesterday..

[Steven_]

Thank you and everyone for your supportive comments. It’s been a week of ups and downs but knowing there’s others I can talk to and in the or have been in the same situation is great

[Lalaloo2211 in reply to Steven_]

My alt (sgpt) is 30 . My albumin 4.4. Bilorubin total 0.7. Bilirubin direct 0.20 . Fibrosis scan cap score 232 decibels per meter. Fibrosis scan result 811 kilopascals. Is it good or bad.

[Lalaloo2211]

My alt (sgpt) is 30 . My albumin 4.4. Bilorubin total 0.7. Bilirubin direct 0.20 . Fibrosis scan cap score 232 decibels per meter. Fibrosis scan result 811 kilopascals. Is it good or bad..

[Steven_]

I’m not qualified to answer I just know my last alt was 120, albumin 30, bilirubin 38 and my fibroscan was f4 at 41

[Lalaloo2211 in reply to Steven_]

Thx u for for reply

[Hidden]

Good luck Steven, I hope they resolve the underlying cause of your problems soon. At least it sounds like they are trying hard to do so.

Miles