How do I organise ongoing HBV monitoring?

Thank you for your detailed replies Dr Tavis and Joan!

No Hep B has never been a barrier for my medical studies. Interestingly the only barrier I had was being prevented from physically entering the children’s ward as I tested negative for chickenpox (never had it) and back then the vaccine wasn’t available as yet!

Yes I’ve been working in health for almost 20 years now and normally insurance is included in our superannuation but since I started working decided (as a 20-something year old back then) that I didn’t need it! So I cancelled it and later when I’ve been trying to get cover, find you need to undergo all these tests, forms etc… so in the end have just given up trying and instead try to lead a healthy lifestyle.

This brings me to another point. There are some persons with Hep B who are on treatment related to high viral loads etc, but some not. Is there any research/evidence out there that looks at what one must do to avoid this? In terms of lifestyle/food/drink etc? Obviously one wants to try and keep one’s liver as healthy as possible but is there any research available that shows by doing XYZ you can lower/maintain viral load? My uncle passed away a couple of years ago with hepatocellular carcinoma and liver failure primarily because he did not believe he had Hepatitis B and refused all treatment!

For Australians with Hep B - how do you navigate looking after the illness? Do you rely on your GP to contact you and actively monitor this or do you need to keep tabs on when blood tests/liver ultrasounds are due etc? I’m personally very bad at keeping track of my own health and have no routine in place to monitor this but I see others talking about having regular blood tests/liver ultrasounds/fibroscans etc… I’ve ordered my own fibroscan many years ago but otherwise have never seen a hepatologist and find my GP only incidentally mentions about blood tests being due when I happen to see them for another unrelated issue.

Hi Kim and welcome to the forum!

Re looking after and “keeping tabs” on your illness, the best possible option is to get a referral to see a hepatologist, especially if you have never seen one before. Most GPs in Australia are not able to prescribe treatments for hepatitis B (although there are programs aiming to remove this barrier) . And the level of knowledge about even the terminology/stages of the disease can vary from GP to GP! I think it would be beyond the scope of most GP clinics I’ve attended to remind you about blood tests and fibroscans, apart from during any regular appointments.

It can seem really overwhelming to manage our own health, especially when we are used to looking after others! I use calendar reminders so I don’t have to think about it!

I hope one of the @HealthExperts can answer your question about viral loads. My very basic understanding (as the partner of someone with Hep B) is that the viral load in itself doesn’t cause the majority of liver damage: it is the liver’s immune response. But as for lowering your viral load without the aid of a pharmaceutical intervention e.g. Tenofovir, I am not aware of any evidence or research on this point (although the general liver health advice applies: exercise, sleep well, eat healthy, limit alcohol)! Hopefully someone else can chime in with some wisdom on this point!

:slight_smile: Miriam

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Hi @kimbopumpkin,

Regarding things to do to decrease viral load: I haven’t seen any evidence of anything you can do other than take antivirals. If you do find something, I’m sure that scientists all over the world would be very interested in figuring out how it works!

Regarding monitoring: I don’t at all depend on my GP reminding me (because they generally won’t unless you find a mythical GP with enough time to follow up on these things). Generally I’ll organise my own regular 6-monthly bookings with the hepatologist as well as my own 4- to 6-monthly blood tests.

I would definitely recommend getting a referral from your GP to a hepatologist, as they will be able to keep you monitored and let you know exactly how often you should be getting a ultrasound/fibroscan. Regularly seeing someone specialised in monitoring your liver will definitely help with keeping track of your Hep B tests!

Cheers,
Thomas

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Thank you Thomas!
Can I ask how often you actually see your hepatologist though? Or it depends on your blood work/imaging etc?
Kim

Hi again @ThomasTu - how do you know to do blood tests every 4-6 months? Is that via your GP? I personally hate blood tests and thought annual would be sufficient? Also certain tests I think eg. viral load are only covered by Medicare annually or something…

Hi everyone,
With my hepatologist I have a standing order for my lab work for the year sent to Labcorp. All I do is go to Labcorp every 3 months to get my blood drawn. I do blood work every 3 months because my liver function tests numbers have been all over the place even while I was on Entecavir and tenofivor (on separate times). We recently switched to Vemlidy and it has improved. The numbers are in normal range now. My labs could be switched to every since months after my next work up to make sure it’s stable.

For the ultrasound, when I see the hepatologist he gives me the order or will send it to me in the mail when I am due to have one done. I then call the imaging place and make my appointment. Sometimes, I will send a reminder message about the ultrasound when it’s due so he can send the order. As we speak I have one due but when I saw him back in February, covid19 cases were up in my area so he recommended I wait till the infection rate decreases to get the ultrasound done. This is to avoid me getting exposed. Hopefully, I will get that taking care of once I get fully vaccinated (almost there).

One has to be proactive, as Thomas mentioned the doctors have a lot on their plate so they might not be thinking about the patient everyday. That has been my routine for the last 7 year’s. I have not had any issues. That is my experience. Over the years these routines become part of one’s life.

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Hi Kim, you mentioned that your Uncle passed away from HCC (liver cancer) due to hep b, so this is something that is important when you consider treatment. Here in the U.S. the fact that you have a family history of HCC would make most liver specialists consider starting you on treatment independent of your liver enzymes (ALT/AST) and sometimes even your viral DNA. You don’t mention your lab results so it’s hard to know what your current medical situation is? In regards to why people living with hep b are recommended to be evaluated at least once a year, and often every six months, this is due to medical societies for hepatologists (liver specialists) convening meetings to determine the best guidelines for the care and management of those living with chronic hep b. The guidelines from the U.S., Europe and Asian are pretty similar in terms of how often a person should be monitored and when treatment should be initiated.

And I agree with Thomas that we have to remember to make appointments every 6 months with our liver specialists! I’ve often said that my dentist is always sending me reminders for my 6 month check-ups. Yet, my liver specialist appointments are entirely my responsibility. Strange!

Oh and in answer to your question about blood donations, here in the U.S. you would not be able to give blood (or become an organ donor). Not sure about Australia?

Thanks again for all of your excellent questions. Always, Joan

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Thanks Bansah1 for your experience.

Hi Joan,
My last blood tests were back in October 2019 when I was pregnant. All it shows is:

HBsAg Detected
HBeAg Not Detected
HBcAb Detected
HBsAb <10 IU/L

How often do you check the viral load?
Should there be other things to be regularly checking as the above seems to be the only things ever checked and which doesn’t seem to change.
I’ve not heard about viral DNA so don’t think this has ever been checked. Gosh I’ve been so passive about having this illness for such a long time and having found this community now feel it’s a wakeup call to get myself properly sorted!

I should also mention my mother is currently taking Entecavir GH 0.5mg daily plus having 6-monthly liver ultrasounds.

Kim

Hi Kim, I agree with Banash that it’s up to us to remember what needs to be done to monitor our hep b condition! He has a good system worked out with Lab corp (blood draws) and his doctor. Here is what I do for my chronic hep b, which is pretty much the standard for someone who is stable and on treatment (I switched 2 years ago from Viread to Vemlidy due to osteoporosis - Viread or tenofovir exacerbates bone loss; whereas, Vemlidy or TAF does not, but it costs more since it’s still on patent and not yet available as a generic).

Every 6 months I schedule my appointment with my hepatologist.
(1) Physical exam - check my vital signs, palpate my liver, assess my heart and lungs, etc.
(2) Blood tests - HBsAg, HBeAg, HBeAb, viral DNA (or viral load), chemistry panel (which includes ALT/ AST and other liver specific markers), complete blood count (or CBC) to primarily check platelets and hemoglobin.
(3) Abdominal Ultrasound - to visualize my liver and monitor for any changes or lesions. I usually schedule this the same day as my doctor’s appointment (early in the AM since you can’t eat or drink anything for at least 12 hours before the ultrasound) so I don’t have to travel to the city two times.

With that said, there are of course variations for people depending on their specific medical condition. As Banash mentioned, he goes every 3 months because his lab tests were fluctuating. Since I’ve been very stable on treatment for the past 15 years, I only go every 6 months. And to be very honest, I’ve sometimes only gone once a year because of a busy work schedule or I just forgot!! With the pandemic this past year, I’ve only seen my hepatologist once. But in general, it’s a very good think to be seen regularly. Hope this helps and of course hope other people weigh in with their experiences. Always, Joan

Hi Kim,
I am an Infectious Diseases specialist and treat many people with hepatitis B.
I agree with Miriam that you should see a specialist (a hepatologist or an ID specialist who treats Hepatitis B) to make sure you are getting up to date advice and appropriate monitoring.
Concerning treatment, unfortunately there are no lifestyle factors that are proven to reduce viral load, so if you need antiviral treatment that is what I would recommend.
On the other hand there are lifestyle factors that can make your liver disease worse (excess alcohol, fatty liver disease), so you should minimise the risk from these. Again a specialist can advise on the best balance to ensure a healthy but still fun lifestyle!
Best wishes
Mark

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Hi @kimbopumpkin ,

I see my hepatologist every 6 months in the clinic (actually I see her more regularly than that because she is also a colleague in my role as a research scientist). She is the one who sets how often I should be getting blood tests (and which kinds). She’ll also be the one to determine if I need an ultrasound.

You are correct that HBV DNA titres are only covered by Medicare for once annually, but the other tests (LFTs, HBeAg, etc.) can be done multiple times a year - because they are less expensive.

May I ask what is your worry about blood tests? I’ve now built up a bit of a rapport with my local pathology nurse and I sort of enjoy it. I’ve found that if pain is an issue, I look away and pinch my own leg at the same time - it serves to distract my body so that it doesn’t notice the needle so much.

I don’t know if anyone of you have other strategies, but feel free to share!

TT

I have moved this discussion to a new topic because I think it’s important to find it easily. I think the chat here could help a lot of people going through the same thing.

TT

Hi Kim, below are links to the US and European guidelines for the care and management of hep b that you might find interesting since you mentioned being in the health field. Hope this helps.

(1) AASLD Hepatitis B Treatment Guidelines from the American Association for the Study of Liver Diseases (AASLD)
(2) EASL Hepatitis B Management Guidelines from the European Association for the Study of Liver Diseases (EASL)

Happy reading! Always, Joan

Thank you all for your valuable input.

So in conclusion everyone with Hepatitis B should be under a specialist to help facilitate ongoing regular monitoring and to take more of an active role in monitoring one’s own health, not relying on one’s GP/family doctor to do this.

Joan - I think dentists only remind you when your next check is due as they are private and get paid when you visit!

I work in the field of mental health and we often have to be more assertive in follow-up as our clientele are not the best at looking after their health, so am used to having to actively chase them up especially when they miss appointments etc. I agree with Miriam that being in the role of helping others we often neglect our own health in the process.

Thanks for the links Joan - I’m sure I’ll get to them one day :wink:

Kim

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