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14 March 2018 at 7:31 pm #27581
Hello,
I’ve got a mystery for you.
A Fibroscan with a 21,6 score indicating fibrosis, an ARFI elastography indicating F0/F1 with no significant fibvrosis, in other words, no liver damage, two ultrasounds with level 1 steatosis and an MRI with a level 1 steatosis. The only thing different in the MRI is two lymph nodes less than 1cm in the smaller axis in next portacaval hepatic hilar whatever that means. My doctor says that is a typical sign of F3 pre-cirrhosis.
By the way, my crazy doctor that says that no way in hell I’m F0. I should be at least F3 according to her. Other hepatologist also discarded the ARFI saying it was worse than Fibroscan because the analyzed area is smaller.
It’s important to mention that my body fat is above 40 and I have a lot of abdominal fat.
So, I have three exams saying I’m fine and one saying that I’m not.
Which one should I trust? Is ARFI more reliable than Fibroscan I’m obese patients? Can an ultrasound detect early cirrhosis reliably? What about an MRI? Can it detect cirrhosis?
Can I start treatment with a 42 BMI or this will impact my chances of getting rid of this thing? My doctor wants me to lose at least 10% of my weight before starting.
As you can imagine, I’m going crazy.
I believe I was infect almost 8 years ago in the dentist, since I don’t drink, use drugs, smoke, have any kind of fun and I’m really anxious. Lucky me, right? Subtype 1b.
Any advice would be appreciated.
14 March 2018 at 10:31 pm #27582Yesterday I (i) received my 4 week VL results reflecting HCV as undetected, and (ii) had a full abdominal MRI Scan to determine my liver damage after 40 years of the virus.
While the technician was scanning my liver (which I could see in the screen on the wall), I joked that I didn’t see any damage. The technician didn’t either. If I understood the call from the NP this morning, both he and the radiologist thinks my liver is pristine–no damage at all. I will see the results of the scan in a few days.
After a liver biopsy in 2003, I was diagnosed as F-2. After 15 more years of the virus, I was prepared for more serious damage.
So, to follow up the previous poster, is there something odd/unreliable/inconsistent, etc. with these diagnostic tests?
1970’s-Bad behavior as a teenager.
2001- Insurance Company denies coverage due to HCV positive
2002- Another HCV positive reading and referral to liver doctor.
2003-Commence Interferon Combination treatment. VL 205,088 after 3 months. Doctor says stop.
2007-VL 1,045,320.
2017-VL 3,121,174.
2.5.18-Commenced generic Epclusa.
3.7.18- VL Undetected!
3.13.18-US Abdomen Complete scan reflects Normal echogenicity with no mass detected. No dilated intrahepatic biliary ducts”.14 March 2018 at 10:49 pm #27583Hi John, needs more expertise than I have but I recognise that going crazy trying to figure it all out so here are my thoughts in the meantime:
Gen 1 B is the jackpot, congrats, highest cure rate, and they are all good these days.
Weight shouldn’t make any difference to cure. I lost about 20 kg on treatment- I needed to, another 10 or so would be good, but it was certainly high at the start. Being well, almost straightaway, helped make decision making easier. I have seen all shapes and sizes go through treatment over past 2.5 years.
Really, the disparity in tests shouldn’t make too much difference either, only to the length of treatment you take, and I would try not to worry about it- the thing is to get treated asap. I had cirrhosis for 18 years, confirmed through biopsies and scans, and when I started treatment my liver stiffness was 40kPa so it was a sad old rock. My spleen was enlarged, tumour markers up, ALT climbing.
It has all melted away, I could feel it and have the scan evidence. My liver is now 95% F0, with one rough edge around the F2 mark. I had been told, still see people told all the time, this is impossible. We are rewriting possible with these DAA’s.
What matters though, is how we feel- I felt better in a few days, obviously I wasn’t, for a while, but I am now, it’s still incredible and I just love seeing other people start, succeed. Looking forward to hearing you have got the meds started. Don’t put off for weight loss.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
15 March 2018 at 5:02 am #27586Hi John,
Only a biopsy can give 100% certainty of what’s going on – everything else is a surrogate way of looking at it where the results correlate but that correlation is not 100%.
Being on the large size means ultrasound can be a challenge and fibroscan is a form of ultrasound.
As a big guy there is no surprise you have some fatty liver disease.
At the end of the day. You have a working liver that will be progressively damaged by ongoing Hep C infection, so the obvious thing to do is treat the Hep C.
With an F4 fibroscan result you could well leverage that into funded treatment under insurance/Medicare/Medicaid (if you have any of these). If you can’t get access that way generics work and with GT1b being the easiest to treat 12-16 weeks (the extra 4 is insurance and because of the ? over fibrosis) of Harvoni or similar should do the trick.
YMMV
15 March 2018 at 6:00 am #27589First of all I would like to thank you for replying. Really encouraging stories. I’m way calmer now. Thank you all!
Dr. James, based on your experience, in a wild guess, would you say F1 or F4? Based on the results? I mean, two ultrasounds without any sign of anything, an ARFI with F0 and an MRI without any issues? Where would that cirrhosis be hidden? Below the fat?
At least the F4 was useful for me to getting treated faster but my hepatologist insists in waiting for me to lose weight first since I’m treatment naive. She gave me a 12 week treatment. Should I talk to her about the four extra weeks? It took four months for me to get the medication because of all the burocracy and I’m not sure how easy would be to get an extra month of treatment.
Thanks again!
15 March 2018 at 9:33 am #27592Hello John, you will easily realize, if you read the hundreds of patient success stories here in the forum, that good quality generics are just as efficient as brand name medications in treating Hepatitis C. If bureaucracy is going to make it difficult to get that extra insurance bottle of Harvoni for your possible high fibrosis level, I urge you to contact FixHepC and source it from them. Best of luck with your treatment.
Making the world a better place – one patient at a time.
15 March 2018 at 2:49 pm #27602Hi John,
If you have not had the Hep C that long then chances are your fibrosis is relatively low.
With GT1b 12 weeks is long enough and with insurance coverage, they should give you Vosevii if you fail the first round so you have a good plan B. An extra 4 weeks insurance is nice for peace of mind if it’s going to worry you.
Here is a copy of my eBook on weight loss. The key for most people is getting enough protein rather than low fat or low carb. Anyway I’ve taken people from 300 pounds to 160 so it can certainly be done.
Attachments:
YMMV
15 March 2018 at 10:07 pm #27605How illuminating! Thank you for this Dr Freeman.
Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000Started generic Epclusa Sep. 23, 2017
4 weeks in <15 *Detected.
12 weeks in <15 *Not Detected.
16 weeks in <15 *Not Detected.
Finished 24 weeks treatment 3-17-18
SVR5 <15 Not Detected.
SVR 20 <15 Not Detected.
SVR 44 <15 Not Detected.Thank you Jesus.
Thank you Dr. James16 March 2018 at 4:35 am #27606Hello again,
I’ve been reading some horror stories about side effects like swollen liver, abdominal pain, skin rash and all sorts of worrying things.
I thought this treatment was supposed to be lighter on the side effects.
What did you guys experience? Because from what I’ve read I should check-in in a hospital or something.
16 March 2018 at 8:33 pm #27615To my Knowledgeable Friends whose opinions I respect:
My US Abdomen Complete scan results reflect that my liver has “Normal echogenicity with no mass detected. No dilated intrahepatic biliary ducts”.
Should I be (i) skeptical and order another type of test, or (ii) thankful, happy, and commit to helping others with HCV?
1970’s-Bad behavior as a teenager.
2001- Insurance Company denies coverage due to HCV positive
2002- Another HCV positive reading and referral to liver doctor.
2003-Commence Interferon Combination treatment. VL 205,088 after 3 months. Doctor says stop.
2007-VL 1,045,320.
2017-VL 3,121,174.
2.5.18-Commenced generic Epclusa.
3.7.18- VL Undetected!
3.13.18-US Abdomen Complete scan reflects Normal echogenicity with no mass detected. No dilated intrahepatic biliary ducts”.17 March 2018 at 6:39 am #27624The normal and no mass detected is about as good as it gets.
For patients with cirrhosis the risk of HCC is about 3% a year, but it does not sound like you are there.
YMMV
17 March 2018 at 6:41 am #27625Hi John,
90%+ of all patients sail through treatment with minimal or no drama.
For a small % they do get side effects.
Unless you have end-stage liver disease it is highly unlikely you will require the services of a hospital during treatment.
YMMV
17 March 2018 at 6:59 am #27627Thanks Doc. I will denote my TO DO List to be thankful, happy, and commit to help others with HCV.
1970’s-Bad behavior as a teenager.
2001- Insurance Company denies coverage due to HCV positive
2002- Another HCV positive reading and referral to liver doctor.
2003-Commence Interferon Combination treatment. VL 205,088 after 3 months. Doctor says stop.
2007-VL 1,045,320.
2017-VL 3,121,174.
2.5.18-Commenced generic Epclusa.
3.7.18- VL Undetected!
3.13.18-US Abdomen Complete scan reflects Normal echogenicity with no mass detected. No dilated intrahepatic biliary ducts”.18 March 2018 at 7:31 am #27633Thank you all for your replies.
My doctor told me that the MRI (regular not with elastography) with gadolinium contrast would exclude cirrhosis and I could put my mind at ease even with the ridiculous Fibroscan score, but I can’t find anything that supports that opinion, by the contrary with several studies saying that MRI is horrible for cirrhosis diagnosis.
Also, a lot of you is telling me to start the treatment right away, but my doctor keeps saying I should lose weight first. At least 10%. Any thoughts? He mentioned a study that patients with BMI 25 have a much better recovery from fibrosis. Also, how many weight can I lose per week to not screw up my liver. I’m not thinking about crashing dieting, but perhaps two kgs a week? Does weight loss reduces fibrosis?
I’m totally lost. I don’t have a clue of what I’m doing, so any thoughts and ideas are appreciated.
18 March 2018 at 12:20 pm #27636Hi John,
2 kgs a week is a crash diet.
You need about 18,000 Calories a week, there are 9000 in a kg of fat so 1/2 rations == 1 kg/week
Please read the eBook I attached to https://fixhepc.com/forum/fibrosis-and-cirrhosis/1827-issues-with-exam-results.html#26041 – I do a lot or work with patients to help them lose weight. In the book are the things that work.
You need 1g/kg of body weight as pure protein to prevent digesting your own muscles and as a result lowering your metabolic rate. For a 50 kg person, that is the equivalent of 1 x 200 g steak/chicken breast/piece of fish to deliver 50 g of protein. For a 100 kg person, it is double and for someone heavier it is even more.
The bottom line is simple. It is not low carb. It is not low fat. It is calorie deficient, protein adequate that delivers sustained weight loss.
The vast majority of patients with fatty liver disease are fat. Not sure how to sugar coat as in these PC days you’re not actually allowed to say “This medical problem exists because you are overweight”. We force feed geese carbohydrate to make their livers fat so we can make them into pate. We do the same with cows to make the meat marbled. Anyway, fatty liver disease generally gets better if we cure fatty person problem surrounding the fatty liver.
Fatty liver causes fibrosis and cirrhosis so reducing it makes sense in context using weight loss as the tool.
Your #1 priority is to get the hep C treated. Your #2 priority is to get your weight down into the healthy range.
The #0 priority, that comes before all is “Happy wife, happy life”.
YMMV
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