Aa
What does this mean?
Hi, Iam a 53 year old , basically healthy (other than having Hep c!) female. I was diagnosed in 1992 with Hep c, most likely from a blood transfusion I had at age 23. I have had a liver biopsy, five years ago, which was normal. My liver enzmes are normal and have been normal, my viral load five years ago was 4.5 million per milgram. The doc. told me at that time I was doing fine and Hep c would propably not be a worry to me. I just went back to the physician for my every five year biopsy. He said since my liver enzmes have been normal, my last biopsy was normal (stage 1 for inflamation, 0 for scarring) that he would do a quanatative (dont know how to spell it) blood test to check to see what my viral load is. He said if it were low then we would not repeat the biopsy for another year. As the virus seems to progress every five years. My viral load came back 5 million pr whatever. Up a bit from five years ago. He said it was high, but that with normal enzmes, a normal test five years ago, that my liver seemed to be handling the desease ok and that I still have nothing to worry about. However he did say with my viral load so high that I would not respond to therpy to kill the hep c. My question is, does anyone have this same sort of Hep c, with normal liver enzmes, normal liver biopsy and a high viral load? And what exactly does it all mean? How can you have a high viral load and low enzmes and a normal liver? And what can I do to improve or help my liver? Thank you in advance for your advice. Shannonaleab
Hi. I too always had normal enzymes. I too found out I had it about the same time you did - me in 1993 - and I chose to ignore it until 2005. Since my liver enzymes were always normal, no doctor ever considered testing me. I asked him to in 2005. My biopsy is similar to yours - grade 1, stage 1. My pretreatment viral load was 1.52 million IU/mL.
It is true that you may live your life out and never have any symptoms. It is also true, as Kalio says, that the liver inflammation and subsequent scarring can start to get worse at any time. It would be prudent to get another biopsy if it has been 5 years and to have the genotype testing done (yes, it is another separate test). Also, I would recommend getting copies of all lab work for your own files.
I treated and relapsed (the virus came back after the medicine had left my system) so I might possibly have this for life. Now I seem to be acutely aware of my blood and the possibility of anyone coming in contact with it.
Shannon, you will need to get educated on this disease, because the medical community all but ignores it. It is contagious, and may be life threatening and is definitely not something to ignore.
frijole
It is true that you may live your life out and never have any symptoms. It is also true, as Kalio says, that the liver inflammation and subsequent scarring can start to get worse at any time. It would be prudent to get another biopsy if it has been 5 years and to have the genotype testing done (yes, it is another separate test). Also, I would recommend getting copies of all lab work for your own files.
I treated and relapsed (the virus came back after the medicine had left my system) so I might possibly have this for life. Now I seem to be acutely aware of my blood and the possibility of anyone coming in contact with it.
Shannon, you will need to get educated on this disease, because the medical community all but ignores it. It is contagious, and may be life threatening and is definitely not something to ignore.
frijole
If I am not mistaken, I believe there was somebody on here that had a VL of 27,000,000. Much higher than yours, and they responded to the tx GREAT!!!!!!!! I remember asking a month or so back what peoples VL's were and how they responded. Search this forum by typing in Viral Loads and see what people's response's were. It will be OK.....Get a second opinion from another Dr who specializes in Hep C. Take it easy, it will be fine.
In Him,
R
In Him,
R
Look at this website to learn more about your viral load.
http://hepatitis-central.com/hcv/hepatitis/loadchart.html
Your dr. sounds like he needs to do a little more homework re: hepc.
I have had this disease for over 30 years, have always had normal liver enzymes, my biopsy last summer revealed stage 1 grade II inflammation. I was not aware of any sides from the disease. I am the same age as you and I decided to treat before I got older or sicker. It's a very personal decision but you must have all the facts re: the disease and the tx before you make a choice. It looks like you are in pursuit of knowledge, good luck.
Bug
http://hepatitis-central.com/hcv/hepatitis/loadchart.html
Your dr. sounds like he needs to do a little more homework re: hepc.
I have had this disease for over 30 years, have always had normal liver enzymes, my biopsy last summer revealed stage 1 grade II inflammation. I was not aware of any sides from the disease. I am the same age as you and I decided to treat before I got older or sicker. It's a very personal decision but you must have all the facts re: the disease and the tx before you make a choice. It looks like you are in pursuit of knowledge, good luck.
Bug
Hi, Thank you all for your input. I have not a clue what a genotype is. I will have to look that up. My doc. has never mentioned it or suggested any testing for that? What can of testing is done for that?
% million is near the threshhold between medium and high.
I started treatment with viral load at 6 million (low range of high), and dropped to 206 (yea!) at week 4. Week 12 "undetectable". I waited, and at age 47 had my first biopsy show minmal fibrosis (stage 1), at 53 (last July) my second biopsy after 6 years showed extensive fibrosis (stage 2-3) suggestive of early cirrhosis (Grade 4). I probably should have done treatment earlier, or at least tried it, but wasn't ready because of my good quality of life and financial considerations. I wanted to wait until closer to retirement.
Eric
I started treatment with viral load at 6 million (low range of high), and dropped to 206 (yea!) at week 4. Week 12 "undetectable". I waited, and at age 47 had my first biopsy show minmal fibrosis (stage 1), at 53 (last July) my second biopsy after 6 years showed extensive fibrosis (stage 2-3) suggestive of early cirrhosis (Grade 4). I probably should have done treatment earlier, or at least tried it, but wasn't ready because of my good quality of life and financial considerations. I wanted to wait until closer to retirement.
Eric
I don't know why your doctor told you that.
First the viral load can greatly fluctuates over time. It can be 5 million one day (when you do your test) and a few weeks later a different number (5.5, 7 or 3 etc...). It is just an indicator among others. Nobody can tell you for sure how you will respond to therapy until you really start it.
I am sure people in this group have started treatment with a much higher viral load than you and cleared it.
The fact that your liver enzyme level is low is good. It means that although your virus load is high and can harm your liver, the inflamation is low so damage is for now limited.
Knowing your genotype would be good. For instance '1a' and '1b' are harder to cure so the length of treatment is adjusted accordingly.
To improve or help your liver:
- Follow up regularly to make sure it's condition does not degrade suddently (unlikely but it's good to do this)
- Get educated about Hepc (as you do now, very good!)
and stay informed about new studies coming up, etc...
- Consider the option of treatment. Since your liver is ok, there is no rush in your case but you have to know that treatment work in 50% or more of the cases (depending on genotype and other factors) and get rid of HepC entirely!
- Eat healty food (balanced diet), keep exercising a bit, never drink alcohol
- Switch doctor if the one you have is not so knowledgeable about HepC
Good luck!
First the viral load can greatly fluctuates over time. It can be 5 million one day (when you do your test) and a few weeks later a different number (5.5, 7 or 3 etc...). It is just an indicator among others. Nobody can tell you for sure how you will respond to therapy until you really start it.
I am sure people in this group have started treatment with a much higher viral load than you and cleared it.
The fact that your liver enzyme level is low is good. It means that although your virus load is high and can harm your liver, the inflamation is low so damage is for now limited.
Knowing your genotype would be good. For instance '1a' and '1b' are harder to cure so the length of treatment is adjusted accordingly.
To improve or help your liver:
- Follow up regularly to make sure it's condition does not degrade suddently (unlikely but it's good to do this)
- Get educated about Hepc (as you do now, very good!)
and stay informed about new studies coming up, etc...
- Consider the option of treatment. Since your liver is ok, there is no rush in your case but you have to know that treatment work in 50% or more of the cases (depending on genotype and other factors) and get rid of HepC entirely!
- Eat healty food (balanced diet), keep exercising a bit, never drink alcohol
- Switch doctor if the one you have is not so knowledgeable about HepC
Good luck!
Genotype is found by a simple blood test. Some genotypes are suppose to be easier to treat or have shorter tx times than others. It just depends. This is a good site for info on hepC:
http://janis7hepc.com/index.htm
Best of luck.
Bug
http://janis7hepc.com/index.htm
Best of luck.
Bug
from what your doc has told you so far it sounds like you are talking about a primary doc. make an appointment with a hepatologist and you will get real answers. no liver doc is going to tell you that with 5 million you can not "respond" to treatment. good luck
Kalio1 give you very good advice.
I was diagnosed over 25 years ago, as non-A, non-B Hepatitis, and in early 90's HCV. The last 15 years I have spent hundreds of hours researching this stuff. I have had 3 different "Internal medicine", "Gastroenterologist", and the last 5 years with a "gastroenterologist/hepatologist". This "gastroenterologist/hepatologist" I have now is not a specialist at all, and they are difficult to find.
I am undergoing some complicatiions in my treatment right now, and am not satisfied with this guys level of expertise. I have got a self-referal with a Cedars-Sinai Medical Center (one of the top liver transplant centers) staff member for a consultation.
You do have time, use it to find someone with good experience. Your own lack of knowledge requires you do this.
Eric
I was diagnosed over 25 years ago, as non-A, non-B Hepatitis, and in early 90's HCV. The last 15 years I have spent hundreds of hours researching this stuff. I have had 3 different "Internal medicine", "Gastroenterologist", and the last 5 years with a "gastroenterologist/hepatologist". This "gastroenterologist/hepatologist" I have now is not a specialist at all, and they are difficult to find.
I am undergoing some complicatiions in my treatment right now, and am not satisfied with this guys level of expertise. I have got a self-referal with a Cedars-Sinai Medical Center (one of the top liver transplant centers) staff member for a consultation.
You do have time, use it to find someone with good experience. Your own lack of knowledge requires you do this.
Eric
Judging by what you wrote, I'd STRONGLY encourage you to get to a liver specialist or infectious disease specialist so you can get some correct info. on your Hep C. Your viral load number has NOTHING to do with the level of damage to your liver. He is not telling you correct info. a viral load of 5 milion is not considered "low" at all. I believe it falls in the "high" category but I don't have the chart handy at the moment, it is either med. or high definately not low.
Please make an appt. with a specialist who knows a lot about Hep C and treats many patients with it. You can have a high viral load and little or no liver damage OR you can have a low viral load and subtantial liver damage, you need a lot more info. about your bloodwork and liver before you can make a determination of what your liver status is. It could be the same as it was 5 years ago but his advising you that somehow your viral load would tell you what is up with your liver is just plain false. You want to know what your genotype is, is your spleen enlarged? What is your platelet count? Do you have any other Hep C symptoms? Are you overweight and a whole lot of other questions you need the answer to. I hope he told you not to drink alcohol, drinking is not advised for people who have Hep C.
This is a nonlinear disease, it affects different people at different rates and times. You deserve to know what genotype of virus you have and also you need more info on your liver so I hope you go see a liver specialist ( Heptologist or a Gastroentroligust who deals with a lot of Hep C patients, be sure and ASK about their experience level!)
You need a good doctor who is an expert in this disease, your doctor isn't giving you the right info.
What he told you is NOT always true, people can have normal or near normal enzyme levels and also have severe liver damage, I know, that happened to me. You can have cirrhosis of the liver and have no symptoms too so you really want some hard facts about your condition from someone who knows of what they speak.
You need better doctoring to know for sure. Maybe you can put off your biopsy another year, but I'd make SURE by seeing an expert in this disease. This doctor who is telling you these things does not appear to be expert in this disease.
Please make an appt. with a specialist who knows a lot about Hep C and treats many patients with it. You can have a high viral load and little or no liver damage OR you can have a low viral load and subtantial liver damage, you need a lot more info. about your bloodwork and liver before you can make a determination of what your liver status is. It could be the same as it was 5 years ago but his advising you that somehow your viral load would tell you what is up with your liver is just plain false. You want to know what your genotype is, is your spleen enlarged? What is your platelet count? Do you have any other Hep C symptoms? Are you overweight and a whole lot of other questions you need the answer to. I hope he told you not to drink alcohol, drinking is not advised for people who have Hep C.
This is a nonlinear disease, it affects different people at different rates and times. You deserve to know what genotype of virus you have and also you need more info on your liver so I hope you go see a liver specialist ( Heptologist or a Gastroentroligust who deals with a lot of Hep C patients, be sure and ASK about their experience level!)
You need a good doctor who is an expert in this disease, your doctor isn't giving you the right info.
What he told you is NOT always true, people can have normal or near normal enzyme levels and also have severe liver damage, I know, that happened to me. You can have cirrhosis of the liver and have no symptoms too so you really want some hard facts about your condition from someone who knows of what they speak.
You need better doctoring to know for sure. Maybe you can put off your biopsy another year, but I'd make SURE by seeing an expert in this disease. This doctor who is telling you these things does not appear to be expert in this disease.
5 mil is not that high. There are alot of people that have higher. That number goes up and down. All that really seems to mean on treatment is the lower the number pretty much the more sucess you will have in treatment. Again I don't think 5M is that high. If your AST and ALT are in normal ranges means your liver is keeping the virus at bay. The only true way to learn about how it is affecting your liver is a biopsy. I am not sure if you should wait until next year for one or not. Others that have more knowledge may give you their option. There are no doctors here and we all are dealing with HCV and can only give you the answers as we see them. Good luck
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