Aa
Elevated ALT and upper right quadrant pain
My situation started in NOV 04 when I got very sick. I was very weak and my lymph nodes were very swollen. I went to the doctor who did a blood workup which included a liver function test. My ALT came back at 141 so she ordered a hepatitis screening and reordered the liver test. The hepatitis results came back negative and my ALT dropped to 82. In January I got sick again. I went back to the clinic and once again she ran a liver test and the ALT came back at 152. She referred me to the Internal Medicine clinic at the local hospital. When I met with them they wanted to redo the hepatitis screening and had me undergo a cat-scan, ultrasound, MRI, and EGD to check for cancer or any other problems. Once again the hepatitis results came back negative and all tests came back negative with the exception of the EGD which showed a H-plyori infection. They also checked for autoimmune hepatitis which came back negative. They re-did my liver function test and the number had dropped to 75. About a month later they did another blood test and the results came back at 169. They finally did a liver biopsy which came back with no specific diagnosis. In May I had a blood test and my ALT had risen to 252 and the pain in my liver area is getting worse. A
None of here are doctors but here's a layman's guide to elevated ALT: http://my.webmd.com/hw/lab_tests/hw20645.asp
Based on the fact that they gave you a biopsy, I would think you would have had a thorough work up for most of the stuff mentioned in the link above. On the other hand, doctors often let a lot of things fall through the crack. Maybe time for a second (or third) opinion from a liver specialist. Make sure you have all your test results including all bloodwork, biopsy reports, etc.
-- Jim
Based on the fact that they gave you a biopsy, I would think you would have had a thorough work up for most of the stuff mentioned in the link above. On the other hand, doctors often let a lot of things fall through the crack. Maybe time for a second (or third) opinion from a liver specialist. Make sure you have all your test results including all bloodwork, biopsy reports, etc.
-- Jim
i want to thank everyone so much for your experiences w/hep c. it has given me some peace of mind to hear from both sides. those of you that have went through tx & those of you that are waiting. i still do not know which way i will go, but i think i'm leaning towards tx. i would still like very much to hear from any of you that have type 1a w/very high vl & no fib or cirr w/moderate inflamation. it helps to hear different experiences & information. i know that sometimes i feel like why me. i dont even know how i contacted hep c. its amazing how many people out there that have this disease. i have lots of family that are concerned & i can talk to, but it helps so much talking to people that are having the same experiences you are. again i thank you all so much for helping me out and answering my questions. i go back to the gastro fri so any more info would be welcome. god bless.
Maybe I missed it earlier, but could you share with us your consultation with Dr. Schiff, if it indeed did take place?
As a geno 1 with stage 3 liver damage, who cleared at week 6, I'm curious why he apparently recommended 48-weeks instead of extended tx. I've been getting different input from my docs. Thanks.
-- Jim
As a geno 1 with stage 3 liver damage, who cleared at week 6, I'm curious why he apparently recommended 48-weeks instead of extended tx. I've been getting different input from my docs. Thanks.
-- Jim
Man, you have ESP or something? Just got back from seeing him, and what an interesting and absolutely brillant man he is indeed. Looks like he is going to take me under his wing and follow up on me from now on.
And everyone in the office, employees and other patients wanted to know why I was allowed to meet with him, as he does not see new patients. Seems the man is for ever eager to learn, and my situation interests him.
I showed him all my info, labs, biopsy, CT, etc. He looked at my VL and questioned whether or not I even had the virus, and whether or not I had been retested, etc. He seemed intrigued that I might be infected at birth, as my mother has it and is the same geno. He told me CT was great, but outdated. Ordered me to have another, and recommends every 6 months. Also ordered me to get scoped for veins. I was also ordered to have labs for tests I have never heard of before, and ANOTHER VL. I had to go to hospital where biopsy was done an release the pathology slides to him, as he wasn't happy that all I had was a report, non graded or staged by the reviewing Dr. He will personally review my slides and compare them to my Fibroscan that they did today. New procedure similar to ultrasound, that measures fibrosis and is noninvasive. New technology in testing, but used in Europe. My numbers where VERY low, and the person administering it said that the lower the numbers the better, mine where 5 and below. My wife tried to pick her for a range scale to see where I stood. She said that a few patients that where stage 3's, ranged around 40. Here I am ranging below 5, so she was amazed when I told her I was thought to be stage 3.
As far as elevated ALT's during treatment, he said that is not alarming at all because of the fact of me being treated with Pegasys. Also that they are only mild. But I was alarmed when he suggested that I might possibly have cirrhosis because of lenght of infection, and that is why he ordered new tests. Told me not to fear the word, as IT IS REVERSABLE in many.. And that being on tx, and handling it as well as I have without any dose reductions or intervention was amazing. My Hemo has risen from past labs, and everything looks great. At week 43, Hemo 13..
I told him about the recommendation for my continuation of Peg after week 48, and he looked me dead in the eye and asked if that was the million dollar question? He got real excited and loudly said: "NO"!!!
Then asked if I liked the stuff that much that I would want to unecessarily continue. He said that my incredibly LOW VL and being undetectable where all very good reasons to be optomistic, and I got the impression that LOW VL and EVR are VERY, VERY favorable. My wife cried, as he told her once the virus is gone, the liver naturally produces collagen which eats away at the scar tissue. Reversal does happen, and he used the word "cured" many, many times. "6 months after discontinuation of tx if the patient tests "undetectable", label yourself cured." But did tell me alcohol use even in moderation, is OUT OF THE QUESTION..
That is from the liver "godfather" himself.
The man is a character, and absolutely wonderful. You can tell he loves what he does and is eager to continue studying and learning. He picks up on everthing, and processes every word you say. I felt a HUGE weight lifted off my shoulders in his presence, and worry free.
But he said extended tx is not for people in my situation. Extension only in cases of slow response, or prior relapse. Maintance is for people with no other options. Also suggested LOTS of new technology in the pipeline, and hooked me up with a number for anyone in my area looking to get into trials. Testing for a vaccine currently, and VX-950 will be in the US with trials within the next month or two.
But my prior anxiety, and "million" dollar question was answered today about me extending tx with one very loud and assertive, NO!!!
Let me know if you want anymore specifics. It was amazing to rack the mind of this man, and here first hand from the man the "other" Dr's still learn from.
And everyone in the office, employees and other patients wanted to know why I was allowed to meet with him, as he does not see new patients. Seems the man is for ever eager to learn, and my situation interests him.
I showed him all my info, labs, biopsy, CT, etc. He looked at my VL and questioned whether or not I even had the virus, and whether or not I had been retested, etc. He seemed intrigued that I might be infected at birth, as my mother has it and is the same geno. He told me CT was great, but outdated. Ordered me to have another, and recommends every 6 months. Also ordered me to get scoped for veins. I was also ordered to have labs for tests I have never heard of before, and ANOTHER VL. I had to go to hospital where biopsy was done an release the pathology slides to him, as he wasn't happy that all I had was a report, non graded or staged by the reviewing Dr. He will personally review my slides and compare them to my Fibroscan that they did today. New procedure similar to ultrasound, that measures fibrosis and is noninvasive. New technology in testing, but used in Europe. My numbers where VERY low, and the person administering it said that the lower the numbers the better, mine where 5 and below. My wife tried to pick her for a range scale to see where I stood. She said that a few patients that where stage 3's, ranged around 40. Here I am ranging below 5, so she was amazed when I told her I was thought to be stage 3.
As far as elevated ALT's during treatment, he said that is not alarming at all because of the fact of me being treated with Pegasys. Also that they are only mild. But I was alarmed when he suggested that I might possibly have cirrhosis because of lenght of infection, and that is why he ordered new tests. Told me not to fear the word, as IT IS REVERSABLE in many.. And that being on tx, and handling it as well as I have without any dose reductions or intervention was amazing. My Hemo has risen from past labs, and everything looks great. At week 43, Hemo 13..
I told him about the recommendation for my continuation of Peg after week 48, and he looked me dead in the eye and asked if that was the million dollar question? He got real excited and loudly said: "NO"!!!
Then asked if I liked the stuff that much that I would want to unecessarily continue. He said that my incredibly LOW VL and being undetectable where all very good reasons to be optomistic, and I got the impression that LOW VL and EVR are VERY, VERY favorable. My wife cried, as he told her once the virus is gone, the liver naturally produces collagen which eats away at the scar tissue. Reversal does happen, and he used the word "cured" many, many times. "6 months after discontinuation of tx if the patient tests "undetectable", label yourself cured." But did tell me alcohol use even in moderation, is OUT OF THE QUESTION..
That is from the liver "godfather" himself.
The man is a character, and absolutely wonderful. You can tell he loves what he does and is eager to continue studying and learning. He picks up on everthing, and processes every word you say. I felt a HUGE weight lifted off my shoulders in his presence, and worry free.
But he said extended tx is not for people in my situation. Extension only in cases of slow response, or prior relapse. Maintance is for people with no other options. Also suggested LOTS of new technology in the pipeline, and hooked me up with a number for anyone in my area looking to get into trials. Testing for a vaccine currently, and VX-950 will be in the US with trials within the next month or two.
But my prior anxiety, and "million" dollar question was answered today about me extending tx with one very loud and assertive, NO!!!
Let me know if you want anymore specifics. It was amazing to rack the mind of this man, and here first hand from the man the "other" Dr's still learn from.
I am a female, 43 years old, type 1a, have stage 1, grade 1 liver biopsy, my viral load is 2500000. I am currently on treatment with Pegasys,180mcg and ribavirin, 1000mg. I just did my seventh shot last night. I am having some side effects from the meds but I wasn't feeling very well before I started them, either. I'm not sure what you are interested in knowing. I guess I'll just wait for you to ask so I don't fill you with info you're not interested in hearing about.
Smiles, Sue
Smiles, Sue
Hello, how can we help you? I am a female, 50, geno type 1, Grade 1 Stage 2, dx 3.5 years ago VL 1mil. I think you are trying to make the decision to treat or not. I went through the same thing first year on this sight trying to decide what to do. After my last bx last month I decided to wait on tx. I had decided to start in Sept but now I am going to wait. For what?? I don;t know. I feel great, once in awhile i get discomfort under my right rib cage but after cat scans, ultrasounds, etc, all normal I have put off tx. I am enjoying the summer doing triathlon after triathlon, training hard and playing hard. So, there you go, good luck with what you decide and keep in touch.
Moey
Moey
Wow! It will take me a little while to digest everything you said but a few preliminary thoughts. (BTW it wasn't ESP, it's just that I saw you post recently you were doing 48 weeks so I just assumed it was based on a consult with Schiff.)
Regarding tx length -- I got almost the exact same response from an equally eminent heptologist. That extended tx beyond 48 weeks is only for slow responders or relapsers. So -- since I was treatment naive and virus negative at 6 weeks, he said there was no reason at all to treat longer than 48 weeks, in spite of the fact that I'm a stage 3. In fact, he said he wouldn't matter if I was a stage 4.
On the other hand, Dr. Cecil recommends two-years for stage 3 and 4 geno 1's based on their high relapse rate.
And then my doc recommends 72 weeks based on age and stage.
CONFUSING, huh? LOL
-------------------------------------
At this point I'm really torn on tx length but at week 24, I still have some time to make the decision. In all their defense (or not defense) I still have not found a study that specfically deals with the relationship between SVR and tx length in geno 1's with stage 3 or 4 damage. The study doesn't exist so I think the docs are all looking at the same (incomplete) data and making their own interpretation, although Cecil implies he's basing his recommendation on his own database. I wish he would publish it so others could evaluate. I think what Schiff and my guy is saying is that there is no data to support extended tx in early responders, so why risk the sides, etc.
-----------
Fibroscan Test. I've read about it but glad to know it's in this country. The thing I like about it is that unlike Fibrosure it can be done while on treatment. In fact, if I can't find someone in my area that does it, I may just hop a plane to Florida and have it done at Schiff's office. Do you have their phone number, I'd like to see what insurance they take.
-------------------------------
Your low Fibroscan result is very promising. I'm assuming that Schiff did not know your Fibroscan score when he said you might have Cirrhosis?
I'm curious what he says when he hears the score and reviews your biopsy slides. Not sure if he told you, but make sure you get ALL the biopsy slides for review. I had about five of them, including three special stained slides. The really important one is the Trichrome stain that shows bridiging fibrosis or not. Make sure that's included. Often they only hand you one slide and the reviewing pathologist is looking at a short deck. That's what happened when I had my biopsy reviewed and now I have to do it again with all the slides.
------------------------------------------------
I was a little confused when you said Schiff ordered new tests regarding the possiblity of cirrhosis, since I was under the impression that the blood markers like Fibrosure were meaningless when on treatment. Do you know what specific tests he ordered in this regard.
In fact, you have time, and get all your testing done, it would be great if you could post all the tests and procedures Schiff ordered so we would all have the benefit of his knowledge.
---------------
Glad things went so well for you and I can tell you're being well taken care of. And only a few more shots left. We're all jealous here. :)
Keep us posted on any developments.
-- Jim
Regarding tx length -- I got almost the exact same response from an equally eminent heptologist. That extended tx beyond 48 weeks is only for slow responders or relapsers. So -- since I was treatment naive and virus negative at 6 weeks, he said there was no reason at all to treat longer than 48 weeks, in spite of the fact that I'm a stage 3. In fact, he said he wouldn't matter if I was a stage 4.
On the other hand, Dr. Cecil recommends two-years for stage 3 and 4 geno 1's based on their high relapse rate.
And then my doc recommends 72 weeks based on age and stage.
CONFUSING, huh? LOL
-------------------------------------
At this point I'm really torn on tx length but at week 24, I still have some time to make the decision. In all their defense (or not defense) I still have not found a study that specfically deals with the relationship between SVR and tx length in geno 1's with stage 3 or 4 damage. The study doesn't exist so I think the docs are all looking at the same (incomplete) data and making their own interpretation, although Cecil implies he's basing his recommendation on his own database. I wish he would publish it so others could evaluate. I think what Schiff and my guy is saying is that there is no data to support extended tx in early responders, so why risk the sides, etc.
-----------
Fibroscan Test. I've read about it but glad to know it's in this country. The thing I like about it is that unlike Fibrosure it can be done while on treatment. In fact, if I can't find someone in my area that does it, I may just hop a plane to Florida and have it done at Schiff's office. Do you have their phone number, I'd like to see what insurance they take.
-------------------------------
Your low Fibroscan result is very promising. I'm assuming that Schiff did not know your Fibroscan score when he said you might have Cirrhosis?
I'm curious what he says when he hears the score and reviews your biopsy slides. Not sure if he told you, but make sure you get ALL the biopsy slides for review. I had about five of them, including three special stained slides. The really important one is the Trichrome stain that shows bridiging fibrosis or not. Make sure that's included. Often they only hand you one slide and the reviewing pathologist is looking at a short deck. That's what happened when I had my biopsy reviewed and now I have to do it again with all the slides.
------------------------------------------------
I was a little confused when you said Schiff ordered new tests regarding the possiblity of cirrhosis, since I was under the impression that the blood markers like Fibrosure were meaningless when on treatment. Do you know what specific tests he ordered in this regard.
In fact, you have time, and get all your testing done, it would be great if you could post all the tests and procedures Schiff ordered so we would all have the benefit of his knowledge.
---------------
Glad things went so well for you and I can tell you're being well taken care of. And only a few more shots left. We're all jealous here. :)
Keep us posted on any developments.
-- Jim
As far as length of tx, believe me I have been racking minds for months. I have corresponded with Dr Cecil a few times via email, and also his forum. He does suggest longer tx, but does highly believe in EVR and low VL as well. These are proving to be extremely high predictions of likelyhood of SVR. But if you follow studies and research, Cecil's approach to tx is not very popular with the medical community. Induction dosing does not produce the same SVR rates as hitting the virus hard off the bat. When administered at low initial levels, the virus is able to mutate, thus the high relapse rates. Two other Dr's I have seen, both only recommended 48 weeks. The one monitoring my tx, suggested it based on the HALT C trials.
Yes, he did talk about possibility of cirrhosis before, then sent me across the street to his office for Fibroscan. Pretty neat procedure, as it has a little tip on the wand that they position in between your ribs to view liver. The administer asked where my biopsy was done, and in that spot the number read at 5. On the other end, the reading was 4.2.. She was very positive about the low number stating that is what you want.
I was told that there is two machines in the US being tested right now, and the other is in Massachusetts somewhere.
As far as lab tests, I will have to get the results. There was 4, and one was VL, another ferritin, but the other 2 where for tests I haven't heard off. Something he said he tests for that is genetically inherited with the virus, and easily treated.
Yes, he did talk about possibility of cirrhosis before, then sent me across the street to his office for Fibroscan. Pretty neat procedure, as it has a little tip on the wand that they position in between your ribs to view liver. The administer asked where my biopsy was done, and in that spot the number read at 5. On the other end, the reading was 4.2.. She was very positive about the low number stating that is what you want.
I was told that there is two machines in the US being tested right now, and the other is in Massachusetts somewhere.
As far as lab tests, I will have to get the results. There was 4, and one was VL, another ferritin, but the other 2 where for tests I haven't heard off. Something he said he tests for that is genetically inherited with the virus, and easily treated.
it looks like part of your question got cut off why don't you post a comment at the end of this thread to continue and be able to finish what you were saying...
did they check for hemachromatosis? or fatty liver disease? are you at all overweight or have diabetes? i think you said your liver was moderately enlarged...and that could be fatty liver...have dr check for NASH, non alchoholic steatosis. i assume drinking is not your problem or you would know that is the reason for the high enzymes...there are many things that can cause liver problems and raised enzyme levels...drs can do tests to check for them...perhaps they have'nt really checked for the rarer ones?
also you may want to repeat that biopsy it sounds like something went wrong....or perhaps your dr did'nt give you all the info...get a copy of your biopsy report and tell us exactly what it says...if it is a healthy liver it doesn't necessarily mean you don't have something causing problems with it...it just means the damage isn't there yet...but usually the biopsy report goes into some length on the health of the liver tissue and iron stains...you should find this out...it wouldn't just say nonspecific....that would be very strange...either something went wrong with the test or like i said your drs not telling you the details of the biopsy report...you will want a copy of that and all your blood tests if possible to take to the hepatologist and keep for your own records...
here is a site that lists several things that can cause liver problems and info about them...i'd bring the list to a hepatologist since they are the ones who really know what's going on and how to tested for various things...
also remember that your alt is high even in the 70's. i almost have or have beginning cirhosis and my alt and ast were in the 70's when i was first diagnosed with hep c before treatment...
usually much higher alts and ast indicate a serious liver or other problem...so don't give up and find a teaching hospital or large hospital near you to get some referals to a good hepatologist...
this is a GREAT list of possible liver diseases to ask dr about. just cut and paste in adress bar.
http://cpmcnet.columbia.edu/dept/gi/disliv.html
here are just a couple others i found on the net that may help you...i did a google search for "reasons for high liver enzymes" i found lots of stuff...you should try it too...
http://www.thebody.com/Forums/AIDS/Labs/Archive/Liver/
http://www.insurewiz.com/Publications/Liver%20Function%20Tests%20June%2005.pdf
http://cpmcnet.columbia.edu/dept/gi/disliv.html
did they check for hemachromatosis? or fatty liver disease? are you at all overweight or have diabetes? i think you said your liver was moderately enlarged...and that could be fatty liver...have dr check for NASH, non alchoholic steatosis. i assume drinking is not your problem or you would know that is the reason for the high enzymes...there are many things that can cause liver problems and raised enzyme levels...drs can do tests to check for them...perhaps they have'nt really checked for the rarer ones?
also you may want to repeat that biopsy it sounds like something went wrong....or perhaps your dr did'nt give you all the info...get a copy of your biopsy report and tell us exactly what it says...if it is a healthy liver it doesn't necessarily mean you don't have something causing problems with it...it just means the damage isn't there yet...but usually the biopsy report goes into some length on the health of the liver tissue and iron stains...you should find this out...it wouldn't just say nonspecific....that would be very strange...either something went wrong with the test or like i said your drs not telling you the details of the biopsy report...you will want a copy of that and all your blood tests if possible to take to the hepatologist and keep for your own records...
here is a site that lists several things that can cause liver problems and info about them...i'd bring the list to a hepatologist since they are the ones who really know what's going on and how to tested for various things...
also remember that your alt is high even in the 70's. i almost have or have beginning cirhosis and my alt and ast were in the 70's when i was first diagnosed with hep c before treatment...
usually much higher alts and ast indicate a serious liver or other problem...so don't give up and find a teaching hospital or large hospital near you to get some referals to a good hepatologist...
this is a GREAT list of possible liver diseases to ask dr about. just cut and paste in adress bar.
http://cpmcnet.columbia.edu/dept/gi/disliv.html
here are just a couple others i found on the net that may help you...i did a google search for "reasons for high liver enzymes" i found lots of stuff...you should try it too...
http://www.thebody.com/Forums/AIDS/Labs/Archive/Liver/
http://www.insurewiz.com/Publications/Liver%20Function%20Tests%20June%2005.pdf
http://cpmcnet.columbia.edu/dept/gi/disliv.html
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
