2b's test 4 week tests-hmmm

This topic has 41 replies, 14 voices, and was last updated 8 years, 11 months ago by klhilde.

Viewing 15 posts - 1 through 15 (of 42 total)

1 2 3 →

Author

Posts
7 December 2015 at 10:18 pm #5438
2b
- Topics: 17
- Replies: 332
- Total: 349
- Guardian Angel
@2b
Hi everyone, well after eagerly awaiting my test results, I’m not sure what the hell I have learned, I think not as much as I wanted to learn.

Even after an hour long phone conversation with people at the clinic, emphasizing over and over that I wanted a 4 week quantitative viral load test, I think they still screwed it up.

I got results for a hepatitis c antibody test that say this:

Component Standard Range
Hepatitis C Ab <1.00 S/C

Your value: 33.90 What does the 33.9 mean? I've always had viral load heptimax tests before so this is new to me.

No quantitative viral load heptimax results, just that antibody test with the 33.9 value

I'm not sure what that 33.9 means other than that I'm positive for antibodies, which I would assume in any event I would be after only 4 weeks of medication and 30 years of having this.

They did other tests, metabolic panel and stuff, and the AST is now 26 and the ALT 25, on the last a few months ago tests, they were ALT 56, AST 51 , they have been higher than that, but usually 50's 60's, so I'm taking that as a positive sign.

so am I missing something? was this just a screw up ordering an antibody test at this point after 30 years of infection and 4 weeks of treatment, or is this something normally done or/and shouldn't they have ordered the quantitative viral load test instead, or in addition to?

Any advice appreciated, I've written to them and said, HEY, I want to know my quantitative viral load--haven't heard back yet.
thanks, all.

GT 2b; since 80’s, no prior tx, sofosbuvir and daclatasvir compounded from API’s at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. I feel GOOD!! I knew that I WOULD!””
8 December 2015 at 1:20 am #5448
Bloot
- Topics: 3
- Replies: 65
- Total: 68
- Recovery Champion
@bloot
Hey mate – I will only answer the parts I know

The drop in AST/ ALT liver enzymes is a very positive sign the drugs are working
Healthy cells in the liver contain these enzymes. When they are damaged they leak these into the blood hence the higher scores.

I’m not sure what your antibody results mean

But I do know that liver clinics won’t, as far as I have experienced, test for viral load
I went for my bloods yesterday and the nurse said (a different nurse this time, but same line)
‘Why would we test for viral load. If you have the virus, the viral load is irrelevant.?’
Well maybe for a psychological benefit to see my VL drop from 11 million to under a million, say, and I could see how well the drugs are working and if I should continue the treatment to 24 weeks.’
‘If this test comes in as hep c negative, then we will assess your options then. Viral loads are very expensive and only allowed 1 or 2 a year and the information is not useful. You don’t need a viral load.’

I know quite a few people who work in, or used to work in the health system
The fact is that while they are monitoring you, they own you
While they are instructed to support generic patients, many do it begrudgingly and they still treat you as though you are their property and you really have to agitate for information
And even then it depends on the individual person you are dealing with

Every person i have dealt with has been quick to give me a hard time for going with treatment before OK’ing it with them.
This was with the liver clinic doctor at Penrith hospital
‘We support the generic treatment. But you’ve gone off and done it before your fibroscan so we have to come in now and sweep up the mess after the fact.’
‘Well just what mess is it you’re sweeping up? I’m a G3 rather than the G1 I thought. But the sof/ dac I am taking is the same for either. And I have got 3 months treatment now and will get another 3. After my fibroscan we can decide if I should continue with the next 3 or not. All I’ve done is access treatment as soon as I could rather than see the door close in my face! So can you explain to me exactly what this mess is that you are cleaning up?’
‘Oh look mate, I’m not having a go at you, but,,,blah blah’
On and on it goes and it just reminds me of the dislike I developed for doctors in particular after my previous interferon/ ribavarin tx.

If you want a viral load you may have to go through Dr Freeman at GP2U – and you are only allowed 2 a year, so he suggests one at the beginning and one at week 8 (pretty sure – I asked him and it’s somewhere on this forum)
You may want to pay the consult fee of $99 I think it is and have a speak to the doc to get a blood script and some info not tainted with bullshit.
One other thing, get him to tick the box that says ‘send a copy to patient’ or something like that. Either that or you will have to get the liver clinic to get the results for you, or get another consult with the doc.

Good luck mate – pity they can’t even tell you what the results mean??
Thankfully we have the generic alternate and Dr Freeman so we only have to put up with this crap as a cheaper option to paying out of your own pocket for scripts and tests.

52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263

Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
6/11/15: Sof/ dac started
26/11/15: ALT 41 AST 41
7/12/15: ALT 36 AST 30 Virus undetected

2004 biopsy F3
Fibroscan appt Jan 11 2016.
8 December 2015 at 1:44 am #5449
2b
- Topics: 17
- Replies: 332
- Total: 349
- Guardian Angel
@2b
thx Bloot, but you prob didn’t realize im in the US, so maybe a bit diffferent. The clinicians PROMISED me they were going to do a viral test load before I went in to give em my blood last week, they have pretty much always done one before every 3 or 4 months whenever I wanted, even thoguh i wasnt’ getting treated, so I was taken aback that I didn’t get one NOW that I have a reason to see if they have decreased.

My numbers have always been relatively low, 100,000 or even less sometimes, so I was really hoping they would all get wiped out in 4 weeks, but now I’m thinking while there might not have been that many of em, the ones that I did have were extra tough or something…I know, its crazy conjecture, but you start thinking stuff like that

Now I’m just wondering what that number meant that came with the antibody test, if it meant anything at all.
Still waiting to hear back from Dr. if they really ordered the viral load test or not. Now I’m working on my 5th week.

GT 2b; since 80’s, no prior tx, sofosbuvir and daclatasvir compounded from API’s at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. I feel GOOD!! I knew that I WOULD!””
8 December 2015 at 1:55 am #5452
Bloot
- Topics: 3
- Replies: 65
- Total: 68
- Recovery Champion
@bloot
In the US. Oh well, gave me a good reason to have a rant anyway lol

I’m sure someone will be able to shed light on what those results mean
Good luck mate for an end to the mental conjecture
Your AST/ ALT are great. so I’m sure you’re on track to be cured
You’ve still got quite a few weeks for tx to knock off any tough stragglers

52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263

Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
6/11/15: Sof/ dac started
26/11/15: ALT 41 AST 41
7/12/15: ALT 36 AST 30 Virus undetected

2004 biopsy F3
Fibroscan appt Jan 11 2016.
8 December 2015 at 2:56 am #5460
Bloot
- Topics: 3
- Replies: 65
- Total: 68
- Recovery Champion
@bloot
I’m far from a doctor or even an expert and all I’ve done is type ‘Hep c Ab <1.00 S/C' into my search engine
So please take this with a grain of salt
But I've found 2 pieces that may indicate a reason to feel positive conjecture rather than negative

Results are calculated as normalized signal-to-cutoff (S/Co) ratios obtained by measuring the signal strength of sample and the signal strength of an internal cutoff. Samples with an S/Co ratio of ≥1.0 are defined by the manufacturer as positive.

Also here on Page 10
http://www.cdc.gov/nchs/data/nhanes/nhanes_11_12/HEPC_G_met_Hepatitis_C_antibody_confirmed.pdf

Final VITROS Anti-HCV
Test Result (s/c)
Conclusion from Testing
Algorithm Interpretation
<1.00 Negative Anti-HCV IgG not detected.
Patient is presumed not to be infected with HCV.

>1.00 Reactive Anti-HCV IgG detected. Patient is
presumed to be infected with HCV, state or
associated disease not determined. Follow
CDC recommendations for supplemental testing

Couldn’t find anything on the 33.9 value

52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263

Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
6/11/15: Sof/ dac started
26/11/15: ALT 41 AST 41
7/12/15: ALT 36 AST 30 Virus undetected

2004 biopsy F3
Fibroscan appt Jan 11 2016.
8 December 2015 at 3:03 am #5461
Chester
- Topics: 7
- Replies: 199
- Total: 206
- Guardian Angel
@chester
I hope the doc’s going to pop up and say we’re both wrong 2b but I think all they’ve told you is that you have or had HCV now or some time in the past. Which unfortunately ain’t exactly news.

I haven’t seen these sort of results before but looking at these links:

http://hcvadvocate.org/hepatitis/factsheets_pdf/antibody_test.pdf
http://www.medhelp.org/posts/Hepatitis-C/Hep-C-Test-result-S-Co-Ratio—01/show/1385507
http://www.medhelp.org/posts/Hepatitis-C/going-to-doctor-tomorrow/show/288073

The link from that Bill 1954 guy down the page a bit doesn’t work anymore but you can now find it here:

http://www.labtestsonline.org.au/learning/test-index/hepatitis-c#tab-index=2

Bloot if that nurse is getting her info from someone claiming to be a doctor, you should ask him or her which cereal box they got their medical degree out of. Get a VL through GP2U and see if you can transfer to a clinic that actually knows what the hell they are doing.
8 December 2015 at 3:12 am #5464
Chester
- Topics: 7
- Replies: 199
- Total: 206
- Guardian Angel
@chester
I did the same thing bloot and my initial reading was the same. But then looking at it more closely I think that <1 is just indicating the range of what is considered a negative result. Depending on the test, I think if it was above 1 but under the relevant value in the hcvadvocate article he would need more sensitive testing done. Above the relevant value, he's just had HVC some time but not necessarily currently active disease. If my interpretation is right, all of us will always test positive to that particular test even after cure. In other words, it looks like they've not only failed to do a VL but done the most useless frickin' test they could come up with.
8 December 2015 at 3:13 am #5465
Bloot
- Topics: 3
- Replies: 65
- Total: 68
- Recovery Champion
@bloot
Sorry for the bum steer 2b

I know what you’re saying Chester
But i’m over arguing with these people or trying to find another clinic
They are doing my Fibroscan and bloods at the same time on Jan 11
I’m going to get my VL at 8 weeks through Dr F at GP2U and have a chat to him at the same time
i’m more exhausted now going through all this than I ever have been in my life
I hope the results will be positive with a negative

Good luck 2b

52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263

Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
6/11/15: Sof/ dac started
26/11/15: ALT 41 AST 41
7/12/15: ALT 36 AST 30 Virus undetected

2004 biopsy F3
Fibroscan appt Jan 11 2016.
8 December 2015 at 3:14 am #5466
2b
- Topics: 17
- Replies: 332
- Total: 349
- Guardian Angel
@2b
Hi bloot, well i did that too but I think the less than symbol is to denote the “standard range”, i.e,, normal non hcv infected pserson, such that if you have no number to the right of it you are ok, and in my case there IS a number to the right of it, meaning i am not in the standard range, and therefore, yes, the “news” they have provided me with is that i have hepc antibodies….wow, who would have known???

so really I guess the only mystery (other than still not knowing my viral load after 4 weeks), is what if any meaning that “33” number means?
so I’m flummoxed about that number…got a short reply back from a nurse saying they are ‘looking into” what happened to the viral load test tha twas supposed to have been ordered.

GT 2b; since 80’s, no prior tx, sofosbuvir and daclatasvir compounded from API’s at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. I feel GOOD!! I knew that I WOULD!””
8 December 2015 at 3:15 am #5468
Bloot
- Topics: 3
- Replies: 65
- Total: 68
- Recovery Champion
@bloot
Chester wrote:

I did the same thing bloot and my initial reading was the same. But then looking at it more closely I think that <1 is just indicating the range of what is considered a negative result. Depending on the test, I think if it was above 1 but under the relevant value in the hcvadvocate article he would need more sensitive testing done. Above the relevant value, he's just had HVC some time but not necessarily currently active disease. If my interpretation is right, all of us will always test positive to that particular test even after cure. In other words, it looks like they've not only failed to do a VL but done the most useless frickin' test they could come up with.

And it's a bit of a bloody joke joke that we're left deliberating over the results on a hep forum
Rather than the doctor telling 2b what the hell it means

52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263

Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
6/11/15: Sof/ dac started
26/11/15: ALT 41 AST 41
7/12/15: ALT 36 AST 30 Virus undetected

2004 biopsy F3
Fibroscan appt Jan 11 2016.
8 December 2015 at 3:16 am #5470
2b
- Topics: 17
- Replies: 332
- Total: 349
- Guardian Angel
@2b
Thanks Chester, I see you came to the same conclusion I did,…a completely useless test, a complete waste of money…what a revelation, I have hepc……wow, sure glad I found THAT out.

GT 2b; since 80’s, no prior tx, sofosbuvir and daclatasvir compounded from API’s at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. I feel GOOD!! I knew that I WOULD!””
8 December 2015 at 3:17 am #5471
Chester
- Topics: 7
- Replies: 199
- Total: 206
- Guardian Angel
@chester
I think the 33.9 is just the number you are above 1. Don’t worry about how high it is unless the doc says otherwise for the reasons I’ve said above.
8 December 2015 at 3:22 am #5473
Chester
- Topics: 7
- Replies: 199
- Total: 206
- Guardian Angel
@chester
Bloot wrote:

And it’s a bit of a bloody joke joke that we’re left deliberating over the results on a hep forum
Rather than the doctor telling 2b what the hell it means

Indeed.
8 December 2015 at 3:24 am #5474
Chester
- Topics: 7
- Replies: 199
- Total: 206
- Guardian Angel
@chester
2b wrote:

Thanks Chester, I see you came to the same conclusion I did,…a completely useless test, a complete waste of money…what a revelation, I have hepc……wow, sure glad I found THAT out.

I know. Lucky huh? Now you might want to get treated or something.

Oh wait……..
8 December 2015 at 3:34 am #5475
sabrecat
- Topics: 2
- Replies: 258
- Total: 260
- Guardian Angel
@sabrecat
Got a similar response at a liver clinic in Sydney. Went there for a fibroscan only and they offered to do the four week bloods. The clinic had reservations about generics (as I have reservations about fatigue, and having HCV scarring my liver and getting another HCC) and they mentioned their concerns a lot.

Blood tests were advised by telephone but I am still waiting for them to be sent to my G.P. though they did call him. In the big scheme of things I expect the my wanting to see the results is for me (normal liver tests after 25 years!) and will not change things.

I do though, find it disconcerting how such an obvious protocol of sharing information is so hard to do with Hep C. Reminds me of the stages I experienced (metaphor wise) having HCV:

1. First is the elephant in the room. You carry the knowledge of being HCV positive wherever you go – blood tests, telling dentists, broaching it with potential partners….

2. next the albatross – you start getting fatigued, weary of watching nothing improving, and eventually what you had convinced yourself would not happen, a HCC.

3. and now folks, the final metaphor – the opportunity to be the ostrich standing between a rock and a hard place with its head in the sand.

In regard to 3. above, “No thanks, can’t oblige”. Get treated.
Author

Posts

Viewing 15 posts - 1 through 15 (of 42 total)

1 2 3 →

You must be logged in to reply to this topic.