Medical Forum / Diseases and Disorders / Hepatitis / January 2009
New Diagnosis
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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
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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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