TOPIC:

Had some blood taken yesterday, tenth day of my treatment on Mesochem Dac and Greg's Indian Sof. Was due to see my consultant tomorrow morning, but he's gone on the sick. First result back was my GGT (which was the only important raised level in a comprehensive set of tests I had done before I started treatment), which is down from 357 to 194. Can this be considered a normal fluctuation, or is it an indication that the treatment is working?

Having a viral load test done from the same blood-drawing, but that will take a few days to come through.

When a doctor orders Liver Function Tests (LFTs) what we get back looks like this (really simplified):

• Bilirubin and ALP - this is a measure of how well the liver is draining and go up with cirrhosis
• Protein/Albumin - this is a measure of how well the liver is working making stuff
• GGT/ALT/AST - these are all liver cell enzymes that go up when liver cells die and release their innards

So with hepatitis you see high levels of GGT/ALT/AST.

If you had say a gallstone blocking drainage from your liver we would see high bilirubin and ALP. There might be a small increase in GGT/ALT/AST as well due to the blockage injuring the liver cells, but usually not as much as you see with hepatitis.

So getting to your question. A change of +/- 10% is not typically significant. Your GGT has fallen by 45% so that does likely represent less liver cell death.

Time also plays a part. GGT is typically raised in people who drink a lot. We know that if they stop drinking (which is the cause) it can take up to a month for their GGT to return to normal.

In my experience a 2 weeks we see improvement (but not normalisation) of liver enzymes. Viral loads that have been 1,000,000 show a log 4 drop (circa 10,000 times) to below 100. I have seen 2,000,000 -> 18 in 12 days (by way of example)

At 4 weeks previously abnormal liver functions are often totally normal, and there is no viral RNA detectable.

So in short don't be disappointed to see elevated LFTs and a 15-50 viral load at this point.

You should also note that the viral load tests are done on Monday and Wednesday nights, so if you had blood taken yesterday it won't make the Monday night run so Thursday would be the earliest time a result might be available, but it could be Tuesday week.

Thanks for that info Dr Freeman.

I'm in the UK, and this set of tests are being done at a private lab because my NHS Consultant declined to get involved in this treatment in any way, shape or form. The clinic said up to five days for viral load result, but the Phlebotomist (sp?) said sometimes it's much quicker.

I stopped drinking alcohol Easter 2014. Would it still be a factor?

My pre-treatment levels were:

ALT 28
AST 26
Biluribin 8
ALP 89

Anxiously waiting for my viral load result now

The impact of alcohol subsides over the course of a month or two so that won't be a factor.

You have a significant reduction in a short time - that's good.

Do you take any other medications/supplements?

While alcohol is probably the commonest cause of increased GGT levels are increase by medications including carbamazepine, cimetidine, furosemide, heparin, isotretinoin, methotrexate, oral contraceptives, phenobarbital, phenytoin, and valproic acid.

Smoking and being black are also associated with higher levels of GGT.

Never smoked, white ethnicity.

I'm on 500mg Naproxen BD, Paracetamol as required (usually 1000mg in the morning) for non-rheumatoid arthralgia and myalgia. 10mg Ramipril daily for raised BP.

For years I took high doses of curcumin and milk thistle, but stopped these a month before starting my Sof/Dac treatment.

I dab a bit of Dermovate occasionally on bits of psoriasis I get, but mostly use E45 on them.

It's relatively rare, but if your GGT does not come down to normal I would change the Naproxen to a different NSAID.

This is a really good site for looking up if a drug might impact on your liver livertox.nih.gov/

livertox.nih.gov/Naproxen.htm

Ok, thanks for that.

I'm going to update this thread as my treatment progresses if that's ok.

Hi Alsdad

Apart from your GGT your function looks pretty good. And please keep us posted on your progress as I personally would like to follow your journey. I'm about to start on the same meds. What staging are you in terms of liver damage? Maybe this could impact on GGT? Looking forward to seeing your week 1 VL and week 4. Em

Hi Emilio,

I had an ultrasound scan a few months ago. Based on that and my bloods, the NHS consultant who has declined to get involved with my generic treatment assessed me as having no liver damage and therefore, not currently suitable for the latest treatments (only cirrhotics are currently being treated on the NHS with them). As an aside, he also showed his ignorance (or worse) in a letter to my GP in which he stated that I, being genotype 3 and intolerant of Interferon, couldn't have the new meds anyway because my genotype requires interferon in the combination. Ignorant, or economical with the truth? This is a hepatology consultant in a centre of excellence btw!!!

Yeah, as I said, I'll post updates as I find stuff out.

Hi Alsdad

So when you say ultrasound I'm thinking this isn't a fibroscan? If not I'm wondering how they can determine no liver damage? Anyway hopefully it won't even matter when you received your next Liver Function and Viral Load test. Yeah please keep us updated thanks. Em

Yes, ultrasound, Emilio. The Consultant who is overseeing my current treatment privately was astonished when he found out I hadn't had a fibroscan. We tried, unsuccessfully, betwwen us, to find a local private clinic that ofeers the service.

I've attached the letter (with all names and references redacted) that my GP practice and myself received from my NHS Consultant wrt this.

The last letter from said Consultant, which I was informed about by phone call from my GP practice, was his declining their request to monitor my bloods during the current treatment. My GP practice have agreed to do blood tests for liver and kidney function (first drawing on Tuesday). But their viral load tests are done at Dr Helpful's clinic, so I will continue to have those done privately at £225 a go.

Like you said, I'll find out where my liver is up to in a few weeks.

Hi Alsdad

I cannot fathom how a hepatlogist can make the assumption of no liver damage based on an ultrasound, really? I'm just a semi educated hepper but would think that the gold standard is liver biopsy and then fibroscan which is reasonably accurate but there can be slight variations to staging etc. Don't get me started on the medical experts who fail to understand and respond to this disease on so many levels (not you JF lol). And to suggest IFN/Riba in this environment indicates that this 'expert' isn't about to step outside stock standard policy/practice. Thankfully you have taken charge of your own destiny, more power to you AD. Em

Had my first NHS blood-drawing for the current treatment this morning.

Before I went into my GP's I decided to give my treatment clinic a ring to see if they'd got my 10 day vl result through yet. Yes they had, and they'd email it to me straight away.

So I booked in at the GP's and got onto the internet on my phone. Email with PDF attachment from the clinic arrived, so I opened the PDF, which was far too big for the phone screen. Scrolled straight down to the result to see 'Not Detected'. Wow!!! Sheesh!!! After a few seconds I scrolled across and saw 'Hepatitis B DNA Viral Load'. Huh? Must be a mis-print! Went in to have some blood drawn, routine blood pressure check higher reading than usual!

Back out to car, and on the phote to the clinic. "Yes, Mr 'Alsdad' it was a HBV vl test that was requested. Wasn't that what you wanted?" Why on earth would I want one of those? I'm being treated for HCV. "Practice manager's not in 'till 10.30. I'll get her to phone you." Practice manager phoned a 11.00, after reviewing what had gone on. Couldn't apologise enough. "When can you get back in for another blood sample?" This afternoon.

So, feeling a bit like a dartboard , I'm about to head back down there.

My 'treatment' under the NHS had turned into a soap opera, and made me bite the bullet and go private. Hoping that this course isn't going to go the same way!

Hi Alsdad,

Well, that must really have given you confidence that they know what they are doing - not! Thank heavens you did go private.

In my experience, doing tx can be a real emotional rollercoaster for many reasons, not least because stuff like this happens all the time. If you were doing ribavirin it would be worse still because that drug has psychoactive properties that can make a monster out of the meekest person on the planet. It may all look like a soap opera from the outside but if you are the one living through it it can get challenging. You are on the bus now so that's one decision behind you. Hopefully, with a bit of help from your pals you'll go the distance and reach your SVR.

dt

The clinic seems quite disorganised. But the Consultant I'm seeing is remarkably well-informed, a good listener and a nice guy.

Yeah, done Riba and Peg in 2004. I'm sure it was killing me. I hobbled into my Consultant's office one day, he looked round at me and a look of horror spread across his face. His first words were "Do you want to stop the treatment?" No 'good morning', 'how are you', or any such niceties. He was spooked. Never again.

It's just crack on with the meds now, keep having the blood tested, see where I end up. I couldn't wait for cirrhosis/liver failure, as the NHS were expecting me to do. I have an 18 yo daughter who I took across the country to start uni last Sunday, and a son in junior school. I have to givie it my best shot for them.