My Doctor flip flops with his advice, inconsistent with my results?

Hello everyone, I’d like to get your thoughts here because I feel my Doctor has been giving inconsistent advice over the years. I’m 49 yo female and have been a Hep B carrier for about 30 years. In 2013-2014 I had elevated ALT (max was 45 IU/L with ULN < 33) and sporadic slightly elevated AST, but ever since 2015 I’ve had normal ALT/AST. HBV quantification done yearly since 2013 (baseline 1290 IU/mL). Fibroscan in 2015, considered F1-F2.

In 2016 I moved from Europe to the US and received inconsistent advice from my liver specialist over the years if you look at my HBV viral load numbers:
2016: viral load 4650 (advice received: ‘inactive carrier, no treatment needed, just checkup 1x/year’)
2017: slight decrease to 4400 (advice: ’no treatment needed, Dr visit needed only every 2 years, even if viral load increases slightly as it has been the past years, unless symptoms appear or ALT goes > 100 or 2xULN’)
2018: increased again to 5500 (no Dr visit done, labs and ultrasound otherwise normal)
2019: increased again to 5830 (advice: ‘continue with visit once every 2 years is fine’)
2020: decreased to 3330 IU/ML and AFP 2.3 ng/mL (no Dr visit done; labs and ultrasound otherwise normal)
2021: further decreased to 2970 IU/ML and AFP 2.2 ng/mL (‘Dr visit only needed in 2 years and also no ultrasound needed until in 2 years’)
2022: slight increase to 3120 IU/ML and AFP 2.1 ng/mL (no Dr visit done, labs and ultrasound otherwise normal)
2023: no labs done yet but fibroscan done with score is F2 (detailed results: IQR 55; CAP (dB/m) median 233; E (kPa) median 8.1; IQR 1.6; IQR/Med 20%). My viral load is still lower than a few years back (when the Dr said I only had to be seen every 2 years, and no treatment was needed) and now my Dr started pushing for starting treatment and he says I’m at higher risk for liver cancer (although my AFP has been going down now 3 years in a row).

So I don’t know what to make of this. When my viral load was higher (and increasing 2 years in a row) my liver Dr was relaxed about it, he did not need to see my every year, we could just do labs and ultrasound every year with my family Dr; then my viral load has been going down for 2 years and only slightly up again this past year (but still much lower than it was for many years) and now all of a sudden my Dr is now trying to push me to start treatment, which means medication for the rest of my life? This seems so inconsistent, especially knowing how I have been feeling and living the past few years: since 2020 I work out 6-7 days / week, barely drink alcohol (1 beer every 3 weeks or so), eat 95% vegetarian and I am convinced this healthy lifestyle has helped getting my viral load down.

(interesting side note: I had been drinking black coffee every day for years, but in 2022 I switched to decaf when my family Dr told me it would help with my hot flashes - then end of 2022 my viral load increased again. Early 2023 I read on this forum that black [regular] coffee actually helps for HBV so I wonder if the switch to decaf may have increased my viral load, as everything else in my lifestyle had remained the same. I’m back to regular black coffee now so we’ll see with my next labs scheduled for end of 2023).

I was also surprised to find out about black coffee through this forum and the podcast from the amazing Dr. Jennifer Lai - why did my liver specialist not know about this? I have been asking him advice about what to eat/drink (or not) for years and he never gave me any advice whatsoever (I also thought for years that my ALT/AST spiked because I was eating too many protein bars so I stopped that entirely in 2014 but that doesn’t seem to be an issue as long as you moderate intake?)

Thank you to all the amazing people on this forum for sharing your stories and for the experts to give their insights. It feels good to see I am not alone in this, and that people are actually listening to each other and caring for each other.

Hi Funnycorky,
I am sorry to hear about the experiences you have had with your doctor. I bet it might be frustrating getting mixed messages from your doctor. It is hard to understand why he or she did not suggest treatment when your viral load was a bit high but rather now that it is not that high. Is your doctor a hepatologist with experience treating hepatitis B or a gastroenterologist? I ask because there are some providers who have no experience at all treating hepatitis B patients. I do not know where in the US you are, but if you don’t feel confident and comfortable with this doctor try finding someone with experience in treating hepatitis B. While it is important you get monitored regularly; it is also vital to have a provider with experience and knowledge about hepatitis B. There is nothing wrong with that. You want to find a provider who is proactive and has knowledge/experience treating hepatitis B patients. I had to change doctors at some point because I just did not feel comfortable with the provider I was seeing. I never felt like she really cared and was not proactive with my health. I changed that by finding someone else. I understand this might not be possible in other parts of the country. But if that is not the case in your area, try finding another provider. The Hepatitis B Foundation have a list of hepatologists on their website, check that resource out.

I hope this helps. Bansah1

Dear @funnycorky ,

According to current North American and European guidelines, initiation of oral antiviral (NUC) therapy for the treatment of chronic HBV infection is only indicated with the onset of liver disease unless the viral load is VERY high. In your case, liver disease appears to have only become clearly evident evident with the recent fibroscan result of 8.1 kPa (consistent with F2 fibrosis) in 2023. The actual level of HBV DNA you have had since the baseline are all low so I would not make too much about the changes between the HBV DNA tests you have had.

Your doctor is following the standard treatment guidelines which is to start treatment when progression of liver disease is evident (which is now the case in your situation).

Regardless of your current AFP measurements (I agree these are all quite low), progression of liver disease from chronic HBV infection carries with it an increased risk of liver cancer.

I hope this helps clear things up.

Best regards,

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Thank you for replying. Finally things are being put in perspective for me, and reasonably explained. Not the answer I was hoping for (that my liver disease progressed) but now at least I can start doing my research into all available treatments, so next time I see my Dr I’m equipped and not caught off guard.


Hi @funnycorky,

Glad to be of help. Sometimes there should be more time taken to explain these issue to patients. The next steps are simple. You have three choices:

Entecavir (aka baraclude) also available generically
Tenofovir dispoproxil fumarte (aka Viread) also available generically
Tenofovir alafenamide (aka Vemlidy) not available generically.

All are taken as a pill one each day.

Best regards,

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