ALL Finished

[almostfinished]

Hi:
Got my 12 week blood work, turns out most of you were right and I am very anemic,
should have been tested for this when I requested it but better late than never. Will take the injections and meds. for a short time and will be back on track.
Dr. would not give me the Hep. C clearance results or viral load said I have to come to office, I am going to try my GP and see what's going on. I am already feeling better and so grateful that I was able to finish the whole course.My liver results are very good and are posted below.Will let you know about the Hep. C result when I get it.Albumin
43
35-52
g/L
Bilirubin Total
7
<20
umol/L
Alkaline Phosphatase
73
35-120
U/L
Gamma Glutamyl Transferase
13
12-37
U/L
Alanine Aminotransferase
10
<36
U/L
Aspartate Aminotransferase
16
<30
U/L
Serology Non-Viral
Hepatitis B
Hepatitis B Surface Ag [HBsAg]   NOT DETECTED

[almostfinished]

My Hepatologist will not tell me my viral load or the Hep.C results. She said I can come for a follow up appt. in three months after my next blood work.
Is this routine? Now I am getting worried.

[Lynn K]

Did they test for hep c on this end of treatment test they may not have. I would call and ask to have them send your test results if a post treatment viral load was done it is your test you have a right to your results.

Your viral load and hep c test are the same test. There is no reason to test for antibodies as that test will always be positive because you were infected with hep c. Your viral load should say something similar to “Not Detected <15” that would be a clear of the virus test result.

Your doctor may not have done a post treatment viral load as the only test that matters is the 12 weeks after treatment has ended test. We had a couple of people here who were weakly detected at EOT and even 4 weeks post but were found to be not detected at the 12 week point and are still cured.

I would get my post treatment HCV RNA test result if it was done but not worry about anything as much as possible until you get the 12 weeks post treatment test done.

Just to add when I relapsed after Sovaldi/Olysio the first result that caused me to wonder if there was a problem was my ALT and AST results had increased back to above normal and then a few days later I got my viral load back and learned I had relapsed.

All your labs look good so that is a great sign

[andrew j]

Hi almostfinished,

I'm so pleased (and relieved) that you're feeling better.
I was worried that it might take time for you to readjust (which happens with some who have a rough time on treatment).

All the best with the results - and esp. with the all-important 12 weeks-post test result.

As Lynn says - you're looking good!

A.

[almostfinished]

Hello Lynn and Andrew:
There is not a reply option under Lynn's post so I will answer here. I phoned the lab and they said yes the Hep.C. test was done and the results sent to the Health dept. and to the Dr. and I had to see the Dr.
 I phoned again and the secretary was irate and said I told you she will see you in three months after your next blood work.
I said yes but they are my test results and she said that is how this Dr. does things.
I am feeling very frustrated I think just because I had such a hard time, on treatment.
The excess stomach acid needed for the Epclusa to work eroded some enamel off my teeth so I have to go in for x-rays.
A friend is taking me in two days for an echo gram and breathing test as my oxygen intake was so low. It is perfect now, so it was either the anemia or the Epclusa.
Thank you for your reply's and information.

[Ella]

Hey Almost,

I'm SO glad you're feeling better! And your lab results look great!

I have to say, though, I think it's crazy your doctor's office won't give you your viral test results. Here in the U.S., patients have a legal right to their medical records. A quick Google search suggests that it is the same in Canada.

Could you get one of your kids to advocate for you with the doctor? Sometimes it's easier for someone who's not dealing with the stress of medical treatment to deal with that kind of stuff.

All best,

Ella

[andrew j]

Hi almostfinished,

The way your Dr's office is interacting with you is completely outrageous.
You should tell them so, if or when you feel strong enough to do so.

Of course you have a right to your medical information.
Certainly that's the case here in New Zealand.
... Here - all medical institutions are plugged into the same info - so I'm wondering if - when you go for your tests in a couple of days, you might be able to ask to see your records?!

[almostfinished]

Hi Andrew:
I am in Canada in a medium size city with one Hepatologist, who runs the show. No one is more outraged than me. The tests tomorrow are an Echo and Breathing test and are not booked through the Liver Dr.
I am going to try to call our Health Dept. and see if I can get anywhere, and if everyone's records are sent there or just mine. My liver tests before I started Epclusa were very normal, and I was not going to do treatment, but the fibroscan said my liver was getting hard? I will let you know if I find out anything.

[Lynn K]

Hi

When you say your liver tests before treatment were normal do you mean only your  liver enzyme tests? Had you had no other testing since you were diagnosed with hep c?

After I was diagnosed with hep c in 1990 I was seeing an infectious disease specialist every year and having blood testing and ultrasounds every year. As well as liver biopsies every 5 years.

My doctor told me that even though my liver enzymes were only very slightly elevated that there is no relationship between liver enzyme test results and extent of liver damage. Elevated liver enzymes only mean something is injuring your liver not how much damage has occurred.

My liver biopsies went from F1, to F2, to F3 and finally F4 cirrhosis after I was probably infected for 30 years. Even now that I am cured of hep c and my liver enzymes are now in normal range I still have liver cirrhosis now for 10 years.

Did you have any testing of you fibrosis done over all your time of infection? Or were you only recently had your fibrosis tested for the first time with Fibroscan and staged as F4 cirrhosis?

Any way just curious about how much follow up testing and what kind you were having since diagnosed with hep c. I hear they do things different in Canada.

Wishing you all the best with your procedure and best possible results.

[almostfinished]

Hi Lynn:
I have had one cat scan on my abdomen showing a small liver cyst, had ALT and other liver tests every couple of years and have had Hep. C from transfusion for 40 years.
My family GP said the ALT and AST were in the high range but acceptable. I was sent back to the hepatologist for pain under my right ribs. She did the fibroscan and said it read 8-10 and would I consider taking the Epclusa. Said it had ZERO side effects.
No ultra sounds, no biopsy's and my constant phone calls about the horrible side effects were never returned, the only one who spoke to me was from the pharmacy that brought me the drugs. They were delivered to my home once a month.This is BS that I can not get my own blood test results except what was sent to me and I posted. I called Public Health today and am awaiting a phone call back from them to see if they can give me the results.

[andrew j]

My Fibroscan reading was 7.7 kPa in 2013 (the most recent test I got) = roughly F2, where F1 is minimal scarring, and F4 is cirrhosis.
... So you should be sitting on F2 er - too - which means that your liver should be able to pretty-much completely recover.

[Lynn K]

Sorry for my confusion when you said your liver was getting hard I assumed you were told you have early cirrhosis. Fo me my Fibroscan before treatment was 27 well into the cirrhosis range.

As Anderw has said you are probably F2. After your hep c is gone your liver will be able to recover. The  American Association for the study of liver diseases (AALSD) says for patients with F2 or less after cure they can go back to living life as though they never had hep c.

Cat scans are equivalent or better than ultrasounds and back when I was diagnosed there was no Fibroscan just needle biopsy. A Fibroscan is fine for tracking of liver damage.

Just really wondering why your doctors office is so adverse providing you your lab tests does not sound like good customer service at all.

So your tests are given to public health? Ours in the US are only reported in the case of communicable diseases as far as I am aware otherwise our records are with our doctors office and maybe an associated family of practices.

I can access my lab work any time on MyChart from several of my providers my primary care has an in-house access. Does your doctors office have any web based access to your test results? That would be a great way for their office to avoid this situation with your test results entirely.

I can also message my doctors office and get an answer back in a few days for non urgent questions. Usually the nurse answers but if needed I get direct answers from my doctor.

So sorry to hear your doctors office is so uncooperative in simply just providing you your own test results for your review.

I wish you had not heard about a lot of side effects and it scared you about treating. While a few unfortunate people have had some problems but  not everything those people experienced at least not at this time have been proven or disproven to have been due to their treatment. Having difficult side effects is not the common experience for most people. I think it is just a human nature thing. When we have a problem we complain but when everything is fine few people comment.

Best of luck getting to see your results