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Old 06-19-2007, 03:02 PM   #1
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How can consultant be sure with antibody test only?

For the last 10 years or so I've gradually found myself getting tired easier, and went to my doctor many times with no diagnosis. Then, a couple of months after my husband died, I saw a different doctor who ordered a hep c antibody test, no questions, no councelling.. nothing. It came back positive, I had another which was also positive, and yesterday I saw a gastro specialist. So far the only test I've had are antibody tests and liver function tests that came back normal, but I thought I had it still from the moment I got my first positive result. So, yesterday the gastro doctor gave me a quick examination and ordered a lot of blood work, from RNA test to viral load and genotype, having told me that I had advanced chronic hep c.. without even an RNA test. He did say I had spider nevii, although I'd been told years earlier that was acne rosascae.
So, I'm expecting an appointment for an ultrasound scan sometime in the next 3 weeks (that's an appointment date, not the appointment) and I go back to get the results at the end of October. I've not been asked if I have any questions, been given any information apart from I may be suitable for treatment or I may not, and had no counselling. So everything I know has been learned online, I have no family now, and being left in the dark with zero support is a scary place to be.
I guess that most of you are in the USA, but I have the services of the UK health scheme, and it's a lottery depending on where you live. But at least I don't have to worry about being unable to get health insurance because I've been tested because if somebody is seen as having a good chance of responding to treatment and the local hospital isn't short of funds, then treatment is free. But of course nobody has asked me if I want treatment, they just assume.

But one thing puzzles me. An antibody test can be positive when you have cleared the virus, although only a small percentage do that. So how can the doctor go ahead with everything before he's got the results of the RNA test? Also, even here people are supposed to be given information and counselling before they even have an antibody test, but I got nothing.. just that test buried amongst others initially, then my getting a letter saying I needed a repeat hep c antibody test, when I didn't even know I'd had the first one.

 
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Old 06-20-2007, 05:39 AM   #2
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Re: How can consultant be sure with antibody test only?

Hi, if I were you I would get another doctor one that is in tune with your needs and that will explain Hep C and the tests needed to be sure this is your problem. You need Viral load, Tsh, and all that stuff before your specialist can determine if a liver biopsy is needed. This is no time for assumptions, you and the doctor need to definitely know if you have HEP C. Good luck to you and I hope it is something else but if not you have to get the right facts and tests before you or the doctor can decide on any tx if needed. Get a second opinion, this is your life you are concerned about. Joyce

 
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Old 06-20-2007, 01:40 PM   #3
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Re: How can consultant be sure with antibody test only?

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Originally Posted by unrealbutok View Post
Hi, if I were you I would get another doctor one that is in tune with your needs and that will explain Hep C and the tests needed to be sure this is your problem. You need Viral load, Tsh, and all that stuff before your specialist can determine if a liver biopsy is needed. This is no time for assumptions, you and the doctor need to definitely know if you have HEP C. Good luck to you and I hope it is something else but if not you have to get the right facts and tests before you or the doctor can decide on any tx if needed. Get a second opinion, this is your life you are concerned about. Joyce
I'm getting all the tests, but here it is very difficult to get a different doctor unless you pay, and I have no medical insurance, few do here unless they are very wealthy.
I will find out if I have hep C as I had all the bloodwork done a couple of days ago, although assuming that I have it now when between 20 and 40% who have had acute infection in the past do clear it themselves, but will always give positive antibody tests. I figure that I could have been infected about 40 years ago.
No liver biosy has been mentioned to me, only an ultrasound scan. Here a biopsy isn't always required. I certainly wouldn't agree to having one unless I knew that I have the virus now. But it took three months just to see this doctor and get the bloodwork done, and he is a generalist gastroenterologist, not a hepatologist. I have to wait another four months to get the results, I assume, as it will be four months before my next appointment. If I ask to see another doctor I could wait a year or more to do so. I had the RNA test, viral load, genotype, and a pile of other tests, including some to determine if I'd be suitable for treatment when I saw this doctor, so I will find out one way or another, even though he didn't tell me what blood tests he was ordering, I found out by peeking at the order for the tests. I also have had tests for cardiac enzymes, bone, thyroid, ALT, and a lot more, so no point in starting again with a very long wait and no guarantee that another doctor would be any better.

I'm afraid the UK health service is collapsing under the cost of expensive new treatments, there aren't enough staff, infections such as MRSA are endemic in our hospitals now (one reason for wanting to avoid any hospital stay if possible, especially one that involves any surgery) and there are cases of people dying while waiting to see doctors for the first time with such as suspected cancer. So I'm using the internet to answer my questions as best I can, and have read a lot, although of course that's no substitute for one to one.

 
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Old 06-21-2007, 06:20 AM   #4
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Re: How can consultant be sure with antibody test only?

Quote:
Originally Posted by oneandonlyalone View Post
I'm getting all the tests, but here it is very difficult to get a different doctor unless you pay, and I have no medical insurance, few do here unless they are very wealthy.
I will find out if I have hep C as I had all the bloodwork done a couple of days ago, although assuming that I have it now when between 20 and 40% who have had acute infection in the past do clear it themselves, but will always give positive antibody tests. I figure that I could have been infected about 40 years ago.
No liver biosy has been mentioned to me, only an ultrasound scan. Here a biopsy isn't always required. I certainly wouldn't agree to having one unless I knew that I have the virus now. But it took three months just to see this doctor and get the bloodwork done, and he is a generalist gastroenterologist, not a hepatologist. I have to wait another four months to get the results, I assume, as it will be four months before my next appointment. If I ask to see another doctor I could wait a year or more to do so. I had the RNA test, viral load, genotype, and a pile of other tests, including some to determine if I'd be suitable for treatment when I saw this doctor, so I will find out one way or another, even though he didn't tell me what blood tests he was ordering, I found out by peeking at the order for the tests. I also have had tests for cardiac enzymes, bone, thyroid, ALT, and a lot more, so no point in starting again with a very long wait and no guarantee that another doctor would be any better.

I'm afraid the UK health service is collapsing under the cost of expensive new treatments, there aren't enough staff, infections such as MRSA are endemic in our hospitals now (one reason for wanting to avoid any hospital stay if possible, especially one that involves any surgery) and there are cases of people dying while waiting to see doctors for the first time with such as suspected cancer. So I'm using the internet to answer my questions as best I can, and have read a lot, although of course that's no substitute for one to one.
Your health system sucks! I didn't know it was like that in the UK but you live and learn. Gosh, you have to wait 4 months just for test results? I feel for you but I hope that you get the proper help. Just try not to get any infections or anything. I guess we here in the USA should appreciate our health system. I'll pray for you and hope that things work out for you. Thanks for giving me a lesson on how the health system in the UK works. I guess it is better than nothing. I'm sure more Heppers can give you more information to help you get a better understanding on what to expect.

Oh, with such a long wait for tests results, I hope they don't get lost in time, that would be devastating. You take care and posting on the health board can help you find some answers. Joyce

 
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Old 06-21-2007, 01:26 PM   #5
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Re: How can consultant be sure with antibody test only?

Quote:
Originally Posted by unrealbutok View Post
Your health system sucks! I didn't know it was like that in the UK but you live and learn. Gosh, you have to wait 4 months just for test results? I feel for you but I hope that you get the proper help. Just try not to get any infections or anything. I guess we here in the USA should appreciate our health system. I'll pray for you and hope that things work out for you. Thanks for giving me a lesson on how the health system in the UK works. I guess it is better than nothing. I'm sure more Heppers can give you more information to help you get a better understanding on what to expect.

Oh, with such a long wait for tests results, I hope they don't get lost in time, that would be devastating. You take care and posting on the health board can help you find some answers. Joyce
Well. one thing was fairly fast. I have an appointment for an ultrasound scan in only 20 days time!
But I haven't any idea how long it will be before I get the blood test results.. it could be by post, or I could have to wait until the end of October.. same for the ultrasound. But it took a month to et my last antibody test result, apparently that's the normal time to wait here, but I'm sure that it doesn't take that long to do the analysis, just have to wait in line until your turn comes.

I know that hep C wasn't dectable in the 1980's, but I thought that something would have been found.. positive but non-A, non-B. I had a routine hepatitis test back then that was OK, so if I'm right about that, then I can only think of very rare ways in which I could have got it.

 
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Old 06-23-2007, 12:16 PM   #6
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Re: How can consultant be sure with antibody test only?

Thanks for the info Zadaw.
40 years ago I used intravenous drugs for a few months, so that's the likely origin and I read that a positive antibody test with that history was regarded as a 95% sure indicater of chronic Hep C. For the last 14 years I've had problems with fatigue, gradually getting worse, and the doctor found spider nevii when he did the exam.

I have an appointment for an ultrasound scan in three weeks time and I was told that I was being considered for treatment if I was suitable. But I've been told absolutely nothing, not had an opportunity to ask questions, and from what I've read about treatment, it sounds terrible, especially the possibility of ending up worse off. I've read all the side effects including the fatal ones, and the possibility of liver disease speeding up with tx.
As I posted before, my liver function is normal and my doctor seemed to think that odd, but I've also read that it's possible to have normal levels and liver damage.

I have a lot of questions, but I've never been given the chance to ask any. I don't even know if treatment would be worth the risk and the pain, especially as I am alone with nobody to provide help or support after my husband's death early this year. I work full-time and feel better working than when I'm at home, although the work tires me. But if I was offered treatment and put it off, later I could be considered too old, as I'm 57 now and I think that nobody over 60 is treated here.

So, I could be described as very confused, and needing information that isn't offered. The doctor said I had advanced chronic Hepatitis C, but how can he know how advanced apart from assuming that I've had it for 40 years? True, that's the most likely time of infection, but it could have been any time up to the mid 1980s, pinning a date on it isn't easy.Maybe I'll be given some information in 4 month's time.. or maybe not.

 
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