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Medical Forum / Diseases and Disorders / Hepatitis / January 2009

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Shawn - 24 Dec 2008 01:24 GMT
Hello,
My wife is 54, always has very healthy, never been to the doctor except when
she had our children but now she has been dx with HCV. We suspect her
tattoo(s) she got back in the 70's. Anyway,  She originally went to the MD
because she was always tired. A liver function test showed elevated enzymes.
Refered to a gastro who ran a viral load which is at 2.5 million. He told
her unless she wanted to proceed with treatment now , no point to biopsy.She
seems set to live with it until her viral load gets higher and some better
treatments come along. Now our questions, What kind of health issues are
related to HCV? I know its attacking her liver and it leads to cirossis but
what kind of issues do some of you have as a result of the virus? How fast
does the viral load grow?
Thanks In Advance
Fergy
Thip - 24 Dec 2008 18:22 GMT
> Hello,
> My wife is 54, always has very healthy, never been to the doctor except
[quoted text clipped - 10 lines]
> Thanks In Advance
> Fergy
Extreme fatigue, memory problems, arthritis-like aches and pains.  The viral
load varies from day to day; the test just determines how many are running
around that particular day.

I don't like your wife's doctor.  She should have a biopsy to determine the
extent of liver damage before she can make an informed decision to treat or
wait.  Her liver may be very healthy, or teetering on the brink of failure,
or anywhere inbetween. I would either insist on a biopsy or get another
opinion.
Thomas Wagner - 24 Dec 2008 18:24 GMT
>My wife is 54, always has very healthy, never been to the doctor except when
>she had our children but now she has been dx with HCV. We suspect her
>tattoo(s) she got back in the 70's. Anyway,  She originally went to the MD
>because she was always tired. A liver function test showed elevated enzymes.
>Refered to a gastro who ran a viral load which is at 2.5 million. He told
>her unless she wanted to proceed with treatment now , no point to biopsy.

Well... without a biopsy, the gastro has no idea about the state of her
liver. He may think everything is fine, but given that she has obvious
symptoms, she should insist on having a biopsy done. Neither viral load
nor liver enzymes indicate anything about the state of her liver. You
can have only slightly elevated liver enzymes and a low viral load with
a liver that's almost gone.

Find another gastro, quickly.

Thomas
Signature

To reach me, complete my last name in the address.

Waterspider - 24 Dec 2008 18:30 GMT
> Hello,
> My wife is 54, always has very healthy, never been to the doctor except
[quoted text clipped - 10 lines]
> Thanks In Advance
> Fergy

With all due respect, your doctor is an idiot.

Ask for a referral to a hepatologist or gastroenterologist, who will proceed
with a liver biopsy becaue this is the only way to determine the extent of
liver damage from hepatitis C (liver function tests and viral count are
irrelevant in confirming the degree of fibrosis/cirrhosis).

Or, have your wife request treatment immediately because after that many
years of HCV infection, liver damage is pretty much a given. Treatment, even
if it does not erradicate the virus, will prevent further damage and often
considerably improves existing damage. However, the odds are in her favour
for curing hepatitis C with treatment. She may be able to find a clinical
trial for better treatment than what is currently prescribed, with the added
benefit of no charge to the patient.

Finally, have yourself, and your children, tested. Hepatitis C is not a
sexually transmitted disease, but blood-to-blood contact is not unusual in
decades of living together... a shared razor perhaps, a cut from a kitchen
knife, you get the idea.

On behalf of the group here, please invite your wife to post her questions
or generally chitchat and get to know us. I am the same age as your wife and
did treatment several years ago. It was successful, I feel healthier than I
have since I was in my 20s, and life is good again. This group helped me
tremendously; it's a great source of information and support.

Good luck to you and your wife.
TX-012 - 24 Dec 2008 19:53 GMT
> Hello,
> My wife is 54, always has very healthy, never been to the doctor except when
[quoted text clipped - 10 lines]
> Thanks In Advance
> Fergy

Please find another doctor. A skilled hepatologist with plenty of
experience treating hep c. Thirty years is a long time to have hep c,
it is very likely that she has a severely damaged liver. She needs a
biopsy to find out; and she may need to get on treatment ASAP.

Go here: http://www.hepatitisdoctor.com/ He may be able to help you
find a doctor, if not, the links there and elsewhere may help. This
site will also help you understand the symptoms...
greyhackles - 24 Dec 2008 21:19 GMT
>Hello,
>My wife is 54, always has very healthy, never been to the doctor except when
[quoted text clipped - 10 lines]
>Thanks In Advance
>Fergy

"He told her unless she wanted to proceed with treatment now , no point to
biopsy"

Oh...my...goodness.

Talk about putting the cart in front of the freakin' horse!

And yet another illustration that the person who graduates last in his/her
medical school class is called "Doctor".

Your wife is clearly in the care of a moron. Please have your spouse get a
referral to a gastro doc that actually has a clue about chronic HCV.

/greyhackles
Thip - 24 Dec 2008 21:27 GMT
>>Hello,
>>My wife is 54, always has very healthy, never been to the doctor except
[quoted text clipped - 29 lines]
>
> /greyhackles

Now Grey, don't be afraid to speak out and say what you really think.
Dwight - 25 Dec 2008 07:20 GMT
> Hello,
> My wife is 54, always has very healthy, never been to the doctor except when
[quoted text clipped - 10 lines]
> Thanks In Advance
> Fergy

Thought you were someone else at first. I just want to add my name to
the rest of the list of those that have told you what they think. I
agree with them completely. Your wife needs to know if and what kind of
liver damage she may have. She also needs to know what type which can
help in determining if she wants to treat now or later.

Dwight
anonymousone - 25 Dec 2008 16:16 GMT
> Hello,
> My wife is 54, always has very healthy, never been to the doctor except when
[quoted text clipped - 10 lines]
> Thanks In Advance
> Fergy

You got good advice here. If she contracted it back in the 70's there
is a good chance
she has severe liver damage. I, too, probably contracted it in the
early 70's and, when it was discovered
in 2005, I had absolutely no symptoms. However, a subsequent liver
biopsy determined I had grade 3
stage 3 liver disease. That means I was approaching cirossis (grade 4)
which is irreversible and would have been a death sentence.

I am happy to report that the 48 week treatment was successful in my
case and the Doctors advise me my
liver will go back to normal.

Calling your Doctor a "moron" is being kind.

If your wife decides to wait until "some better treatments come along"
it could well be a fatal decision.

You need to get a competent Doctor. At the very least, you need to
talk to him about his bad advice, possibly stronger measures are in
order.
tom - 25 Dec 2008 16:33 GMT
> Hello,
> My wife is 54, always has very healthy, never been to the doctor except
[quoted text clipped - 10 lines]
> Thanks In Advance
> Fergy
I probably carried the virus around for 35 years before it was discovered
while treating something else. Never been sick and have always had normal
liver function levels. My load was also around 2.5 million. My doc wanted a
biopsy but when I pressed him as to what he would concretely gain from that
information he said that if I started treatment and only partially responded
the biopsy results could help decide whether to continue treatment. I opted
to skip the biopsy and start tx. That was almost 4 years ago and I've been
virus free ever since about a month into treatment. After seeing my
Gastroenterologist about a year ago, at which time he released me from his
care, he said he no longer recommends a biopsy.
anonymousone - 25 Dec 2008 20:27 GMT
> > My wife is 54, always has very healthy, never been to the doctor except
> > when she had our children but now she has been dx with HCV. We suspect her
[quoted text clipped - 20 lines]
> Gastroenterologist about a year ago, at which time he released me from his
> care, he said he no longer recommends a biopsy.

No harm in that. A biopsy lets you know where you stand though.
greyhackles - 26 Dec 2008 01:59 GMT
>> > My wife is 54, always has very healthy, never been to the doctor except
>> > when she had our children but now she has been dx with HCV. We suspect her
[quoted text clipped - 22 lines]
>
>No harm in that. A biopsy lets you know where you stand though.

Of course that's true. And often the biopsy results provide a rational basis
for an informed decision to treat or not to treat.

That said, if a person decides to go ahead with treatment *without* having a
prior biopsy, that's perfectly fine. While a prior biopsy would contribute to
the knowledge base of condition vs treatment success, for the individual
patient who had already decided to treat, that biopsy doesn't provide much if
any advantage.

But how can a person who has been infected for many decades make an informed
decision *not to treat* if they have no clue what state the liver is in?
That's the thing that baffles me about this particular case.

A 2.5 million viral load is considered high, three decades of infection is
well into the time frame that clinical symptoms are bound to be apparent, and
increasing degree of liver damage is inversely associated with treatment
success. How a supposed "doctor" comes to the conclusion that a biopsy is only
recommended *after* a decision to treat has been made is bewilderingly
irrational...

/greyhackles
Shawn - 27 Dec 2008 06:09 GMT
I failed to mention that the Geno Type is 1

> On Thu, 25 Dec 2008 12:27:50 -0800 (PST), anonymousone
> <tedw2@earthlink.net>
[quoted text clipped - 72 lines]
>
> /greyhackles
anonymousone - 27 Dec 2008 08:18 GMT
> I failed to mention that the Geno Type is 1
>
[quoted text clipped - 77 lines]
>
> > /greyhackles

That just means the odds of success in treatment are less.
dBo - 27 Dec 2008 13:29 GMT
Pretty much ditto to what has already been said by others. I was dx in
late 2005 at age 54, after about three years of very mildly elevated
liver enzymes that my PCP assured me more than once was soooooo
insignificant it was not to be worried about, "as we get older, fatty
liver deposits etc etc" It was when I saw a nurse partitioner for some
unrelated complaint that SHE because extrememly concerned about the
elevated liver ezmyes becase there was a pattern that they had been
going up a tiny bit more with each passing year. I had a load of
around 2.5 mill, as well. Geno 1a

My gastro insisted on the liver biopsy and thre results came back at
stage three, one short of cirrhosis. What a shock. I had no idea there
was anything "wrong" with me. I too figure I picked it upback in the
early 70's when I worked as a dental assistant to an oral surgeon,
then as a medical assistant in the Medical Center - lots of blood
contact in both cases..

I too vete with another doctor, a second opinion, and don't be lulled
into complaceny by thinking she does not feel sick and has no
symptoms. Neither did I, that I knew of, yet there I was, one step
short of cirrhosis. In my case I began TX immediately, won the war,
slayed the  Dragon, and two years later remain virus free. I wouldn't
put this off with out more deifinitive infomration - like a biopsy!
~Deb
metspitzer - 29 Dec 2008 03:13 GMT
>I failed to mention that the Geno Type is 1

Be prepared to quit drinking, drugs and smoking.  Stage 4 serious. You
should be trying to find the best liver doctor in the state.
Waterspider - 29 Dec 2008 19:20 GMT
>>I failed to mention that the Geno Type is 1
>>
> Be prepared to quit drinking, drugs and smoking.  Stage 4 serious. You
> should be trying to find the best liver doctor in the state.

Just to clarify...
- Shawn's wife does not know what stage her liver is in.
- There are many drugs, be they prescription, over the counter and off the
street, that will not harm the liver. And there are many that will. One must
know the effects and side-effects of any drug and base their decision to
take it (or not) on that information.
- The jury's still out on smoking-- it's not a good idea for anyone, but
there's no evidence to suggest it accelerates liver damage.
- Yes, everyone with hepatitis C should abstain from alcohol.
metspitzer - 29 Dec 2008 22:18 GMT
>>>I failed to mention that the Geno Type is 1
>>>
[quoted text clipped - 10 lines]
>there's no evidence to suggest it accelerates liver damage.
>- Yes, everyone with hepatitis C should abstain from alcohol.

Yeah, I had confused it with another thread in the group.

Never mind...........

Sorry
john - 27 Dec 2008 13:26 GMT
> Hello,
> My wife is 54, always has very healthy, never been to the doctor except when
[quoted text clipped - 10 lines]
> Thanks In Advance
> Fergy

Hi Fergy,
I have had it for 30 years.Never felt unhealthy in anyway.I wouldn't
have known i had it.I was at late stage 3 possible early signs of
cirrohsis.In my case i also tell people it was the tattoos but i don't
believe that to be true.
best luck with whatever you deceide.
john
john - 27 Dec 2008 13:29 GMT
> Hello,
> My wife is 54, always has very healthy, never been to the doctor except when
[quoted text clipped - 10 lines]
> Thanks In Advance
> Fergy

Hi Fergy,
Get a biopsy immediatly.Only way to know what you must do.
john
Phobia - 05 Jan 2009 20:55 GMT
Hello all,
I'm helping a friend who's daughter was just told she probably has HepC and
was just transferred to a hospital. Her Liver enzyme test is 1000, Is that
high? I was surprised to hear other people's range being over 2 million!
Thank you
Cathy

On Dec 23, 8:24 pm, "Shawn" <s.f...@sbcglobal.net> wrote:
> Hello,
> My wife is 54, always has very healthy, never been to the doctor except
[quoted text clipped - 14 lines]
> Thanks In Advance
> Fergy

Hi Fergy,
Get a biopsy immediatly.Only way to know what you must do.
john
greyhackles - 05 Jan 2009 21:25 GMT
>Hello all,
>I'm helping a friend who's daughter was just told she probably has HepC and
>was just transferred to a hospital. Her Liver enzyme test is 1000, Is that
>high? I was surprised to hear other people's range being over 2 million!
>Thank you
>Cathy

First, you're conflating "liver enzymes" with "viral load". The latter can
range from "undetectable" through many millions, with a 2 million viral load
being somewhere in the middle of the "normal" range (fwiw, my last viral load
test just prior to beginning therapy was 7 million).

The former - "liver enzymes" - typically describes the amount of ALT and AST
present in peripheral blood. While each blood test lab has their own
description of "normal range", the typical normal range for  ALT is between 0
to 50 U/L, and for AST is between 15 to 40 U/L.

A reading of "1000" would be extraordinary - and probably off the chart - if
it was actually for a liver enzyme, which seems to top out around 600 U/L -
and that would be for a patient with a very sick liver. Unless the lab uses a
different metric of measurement (which seems rather unlikely - ALT & AST test
metrics seem highly standardized around U/L).

If the "1000" was for a viral load test, that would be unusually low for
someone not currently on anti-viral therapy, but it isn't completely out of
the realm of possibility. I have read of treatment-naive patients that had
such extraordinarily low viral loads, but it is quite unusual indeed...

/greyhackles
Waterspider - 05 Jan 2009 22:09 GMT
>>Hello all,
>>I'm helping a friend who's daughter was just told she probably has HepC
[quoted text clipped - 33 lines]
> the realm of possibility. I have read of treatment-naive patients that had
> such extraordinarily low viral loads, but it is quite unusual indeed...

If she's been told she "probably" has Hep C, it's not a viral load test
result.
Maybe somebody missed a decimal for ALT/AST and it's 100?
Phobia - 06 Jan 2009 04:51 GMT
>>>Hello all,
>>>I'm helping a friend who's daughter was just told she probably has HepC
[quoted text clipped - 40 lines]
> result.
> Maybe somebody missed a decimal for ALT/AST and it's 100?

First I would like to thank both of you for answering and making me feel
welcome.

Secondly, I just found out this young woman does not have Hep C, the
elevated test result was due to a medication she was taking called Tegratol
(sp).
Thank you
Cathy
Waterspider - 06 Jan 2009 09:11 GMT
>>>>Hello all,
>>>>I'm helping a friend who's daughter was just told she probably has HepC
[quoted text clipped - 49 lines]
> Thank you
> Cathy

Thanks for the update, Cathy, and I'm glad to hear your friend's daughter
doesn't have Hep C.

It seems all too common that people do not get clear explanations of their
medical condition from doctors. It's perfectly natural to panic a bit and
it's easy to come to the wrong conclusion when you don't have all the info.
Yeah, yeah, the doctors are busy, but they are well educated and thus should
be aware that the patient is going through major stress just from not
knowing what the hell is happening. Five minutes to clarify a diagnosis or
test results shouldn't be too much to expect, considering what the lack of
it puts the patient, and their family and friends, through. Okay, rant off
<g>

Hope it all works out well, and quickly.
Shawn - 14 Jan 2009 02:40 GMT
Well I was searching for a clinical trial put on by a university and found
one at the Baylor University in Houston. We have an appointment tomorrow
01/14. The lady took all the info from my wife and told her she was an
excellent candidate. We would discuss the program and set an appointment for
a full blood study. Once the results on the blood test come back, they will
do a complete physical, mri on the liver then a biopsy. Then they will begin
treatment. We will know more about it after our initial visit.. Wish us
luck..
Sara - 14 Jan 2009 04:30 GMT
> Well I was searching for a clinical trial put on by a university and found
> one at the Baylor University in Houston. We have an appointment tomorrow
[quoted text clipped - 4 lines]
> treatment. We will know more about it after our initial visit.. Wish us
> luck..

Good Luck!!   Please, keep us posted.

Sara
Shawn - 17 Jan 2009 22:58 GMT
Well we went to the meeting at the advanced liver therapies dept at   St
Luke /Baylor. They are conducting a study of a trial drug. They called it a
number that I cant remember. There are 7 arms of the study. Arm 1 is the
standard Inferon/Ribovirin. Arm 2-7 are of the Studies meds and a combo of
another drug in various doses. She is scheduled to go the 23rd for blood
work and to schedule a complete physical then a biopsy. Two weeks after they
find out what
arm she is assigned and begin treatment. I'll keep yall posted
Shawn

On Jan 13, 9:40 pm, "Shawn" <s.f...@sbcglobal.net> wrote:
> Well I was searching for a clinical trial put on by a university and found
> one at the Baylor University in Houston. We have an appointment tomorrow
[quoted text clipped - 7 lines]
> treatment. We will know more about it after our initial visit.. Wish us
> luck..

Good Luck!!   Please, keep us posted.

Sara
Thip - 17 Jan 2009 23:54 GMT
Good luck!

> Well we went to the meeting at the advanced liver therapies dept at   St
> Luke /Baylor. They are conducting a study of a trial drug. They called it
[quoted text clipped - 5 lines]
> arm she is assigned and begin treatment. I'll keep yall posted
> Shawn
john - 19 Jan 2009 14:30 GMT
> Well I was searching for a clinical trial put on by a university and found
> one at the Baylor University in Houston. We have an appointment tomorrow
[quoted text clipped - 4 lines]
> treatment. We will know more about it after our initial visit.. Wish us
> luck..

Wishing you both the best of luck.........
john
 
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