Is the fibrotest available in states? I am in Colorado

[bldenver]

Hi.
This is the first time I have ever posted.

I have 2 concerns.
,
My ALF, for the  first time,is borderline,instead of being in the normal range.. I had it repeated twice. It was always within normal range before, and all my other liver enzymes are normal except my sgpt and sgot which remain only slightly elevated throughout the years. My viral load was up to 4 million, but precipitously dropped to 470,000 within the last two years.I'm having trouble making sense of all of this. I have had Hep c for probably 30 years or so

My Doc wants me to get  a biopsy, but I have many allergies, one to Lidocaine.

I am wondering where I can get a fibrotest done in the U.S. I am new to the state of Colorado (and confusion and anxiety).

Can anyone help me understand what may be happening..and where to get fibrotesting done?
thank you

[IAmTheWalrus]

I do not know any doctors in Denver. If I did I would send you a private message with a recommendation (maybe others have).  I am not sure if an endorsement of a doctor on a public post would be allowed here. ??

I have to agree with you that the biopsy, or any risk at all, is not worth it if treatment is not an option. If you don't mind me asking, why do you believe that you could not undergo treatment of HCV? I have quite a few allergies, too. Maybe your belief that you cannot treat is valid or maybe not, but it would certainly be worth a lot of scrutiny before eliminating a potentially life-saving option.

Hope I am not sounding unsympathetic, I am just perplexed. I hope you get the answers and care you need here and with a doctor.

[IAmTheWalrus]

I do not know any doctors in Denver. If I did I would send you a private message with a recommendation (maybe others have).

Your situation seems quite unique. I am not sure how a doctor would proceed to assess your condition without a biopsy. If treatment is out of the question, why bother with the testing at all?

Are you allergic to narcotics or benzodiazapines? If not, perhaps a biopsy without a local anesthetic would be OK. But if Tx is not an option, again I would ask why bother?

Hope I am not sounding unsympathetic, I am just perplexed. I hope you get the answers and care you need here and with a doctor.

[bldenver]

What kindness is shown to me. Thank you all so much.

Here is what is really troubling me. I have found so many, how can I say this nicely, so many docs that don't care about ME, once they hear my list of allergies. It is finding that oh so elusive doc, that you all sound like you were lucky enough to find, that really listen to my particular allergies and concerns.
Last week I needed a mole biopsied. After trying to insist on doing it with no numbing agent, which the doc wouldn't do, I "let " him use something, not lidocaine. Forgoing the details, I ended up with an allergic reaction to what they used anyway, and also ended with blood poisoning at the site of the injection and have been sick for two weeks with it, because no antibiotic. So  I'm just sweating  it out. That's a perfect example of what happens when I try to move forward, and I try to assert myself. No one listens.
How do I find this doctor that will listen to my particular concerns? Can people make recommendations on this site?

[IAmTheWalrus]

HCV infection can cause elevated AFP levels as can advancing cirrhosis. A CT scan to rule out HCC tumors would be wise either way. If the AFP is simply elevated because of the cirrhosis, then you are more likely to develop HCC tumors and a CT scan is likely to catch this event before the tumor gets large or spreads to other organs. When the tumor(s) are caught early, there is a greater success of resection and the possibility of transplant is an option. If the cancer grows too much or spreads, transplant is not an option.

Possible HCC would be the most immediate threat and should be studied with imaging for a tumor as Copy suggests.

I am just curious why TX is out of the question for you. Depending on your liver disease progression there may come a time where it is the only option other than waiting for liver failure and transplant. Having done both, I think the TX the safer/easier route compared to end stage liver disease and transplant. Keep in mind, many are listed for transplant who do not live to get a compatible organ. Many die on the waiting list. Not to bum you out, but to put a little perspective on where not treating can take you. The best tool for you and your doctor for making that decision is your liver condition determined by tissue sample. There are some arguments to be made for the Fibrotest, but the biopsy is regarded and the best tool for this now in the US.

[bajawoman]

Copyman is right I had a Fibrotest FibroSure is the same it is worth it my test came back grade 2 stage 1
I am happy with that and feel comfortable you may want to have other tests at the same time I also had the alpha feta protein test for cancer and today had the HOMA for insulin resistance and a Tyroid test so easy just blood tests. I am sure you should at least get all the blood work you can. I have had Hep C since I was 17 and only found out 3 months ago I will be 62 next week so you see for me it did not progress very fast  I think for your peace of mind go for the blood tests you can tell your doctor this is the way you want to go I am sure others here have had the Fibrosure test so I know you can get that done  then you can have more information to decide your options
I also was a mess so nervous and scared and the symptoms I was feeling from the diagnosis of having Hep C actually was a relief as the symptoms for the past years have gotten worse now I know what it is that is making me feel so lousy and has for quite some time the worst is the depression and anxiety that has created more symptoms and magnified the fatigue and anxiety I was prescribed Lexapro have been on it two weeks it is an anti depressant and it has truly changed my life I have more energy and am feeling like my old self again you may want to also talk to your doctor about how you are feeling emotionally and physically after I found out I was all over the place not knowing what to do I have decided to hold off for a while to take the interferon I will decide after the 1st of the new year interferon is not for everybody there are alternative meds to make you feel better but with alergies you need to be careful so good luck and read all you can read this is what I have learned from this site to Educate myself so when I am ready to make a decision It will be a well informed one
Just try and go inside your self and breath excercise is very important and so is hydration drinking water good pure water and eating right these are your best defense right now
good wishes to you be as well as you can be take care
sidne

[copyman]

i think the doctors are doing the right thing trying to get you to do a biopsy. There are cutting edge docs then can adjust treatment to fit most hard to treat patients. I guess they want to see if you are advanced then they could tailor a treatment around your med conditions. I believe there is always a way to do treatment, with the right doc of course. At least for your peace of mind get a fibrosure test, if this test comes back at a low stage of fibrosis then you can rule out cirrhosis with as much as 80-85% accurate. good luck

[bldenver]

Dear Everyone,

thank you so much for the information.

The reason I have not gotten the biopsy, besides fear and allergic reactions, is that because of my allergies, I can't take the treatment anyway. So the whole thing just becomes circular and rather pointless.

Pretty depressed right now. I have two docs pushing me for biopsy, and really, what is the point, as my old doc us to say in west coast, what is the point of that risk, if  you can't take treatment anyway.

[Trinity4]

I am allergic to many many antibiotics, and preservatives in many medications. So even if a substitute for Lidocine, procedures are very risky for me. I'm totally too scared to have  a biopsy.

Biopsy can be done without any numbing agents.  It is not painful, and only lasts 30 seconds.  Most of us have this procedure done, so if it were not tolerable you wouldn't see most of the members on this forum posting their their results.  If your concern is an allergic reaction, not all facilities numb the area prior to biopsy so the procedure can and is be done that way.  You cab ask for a mild sedative which would ease you anxiety.
Thirty years of having HCV should prompt you to want to get a biopsy for your own peace of mind.  Enzyme readings and viral load have nothing to do with the amount of liver damage you may have right now.   MRI or CT Scan will not tell you how much damage there is to your liver.  Biopsy is the only ACCURATE method to determine this.
With the allergies you have mentioned, and you are considering treatment, that may be a problem.  Lots of toxins in SOC.
Trinity

[copyman]

i think what you meant is fibroSCAN test. this is only available at a few locations. the fibrotest is available by many different names from different labs. The equilvelant Labcorp test is "fibroSURE". this blood test is only accurate for the low end (no cirrhosis) or high end (cirrhosis), not that good for middle of the scale. It could rule out cirrhosis if the test came back at a low #. The fibroSCAN is more accurate but like I said not readily available in the USA. You would have to make an appointment with a doctor that has the SCAN machine and get the scan during a visit with them. with an increasing AFP I would opt for a CT or MRI to rule out cancer. AFP is more of an indicator or cancer then fibrosis. BEFORE YOU WORRY, let me say that the AFP usually has to be in the HUNDREDS for the person to have cancer. So relax and most likely the slight increase is because you have HCV. Like the other poster said the viral load has nothing to do with liver damage, it flucuates all the time. Best of luck

[bldenver]

thank you for your time.

I made a mistake on my post. I was nervous. I meant my alfa feto protein AFP is now borderline, and was always normal. (I accidently wrote ALF,don't know where that came from).

I am allergic to many many antibiotics, and preservatives in many medications. So even if a substitute for Lidocine, procedures are very risky for me. I'm totally too scared to have  a biopsy. Will an MRI tell me about liver status, other than cancer?
Thank you again

[IAmTheWalrus]

Viral load really does not provide a good indicator of disease progression. After 30 years of infection, I would watch your liver condition closely. The "gold standard" for assessing disease is the biopsy. Fibrotest is a blood test and is really not accepted as a substitute for a biopsy.

With a biopsy, the purpose is to look at the actual liver tissue under a microscope to determine the extent of damage done to the liver by disease. This can be helpful in determining if the disease has progressed to a point where treatment is advisable, or if the disease has progressed to a critical stage (cirrhosis).

There is an imaging system called Fibroscan that is being used experimentally to assess liver condition non-invasively but I am not sure it is widely available. There are some others here who have experience with the Fibroscan and the doctor/location where this is done.

If you are allergic to lidocaine, perhaps there is an alternative local anesthetic that can be used for the biopsy?  The biopsy procedure is not really a big deal.

[bajawoman]

Greg Everson, University of Colorado Health Sciences Center, Denver, CO
this is what I came up with when I searched the internet
Your Doctor I would suppose if you requested it,  can order it and they will draw your blood at your local Lab and  they will send it to the labtthere in Denver or you can contact the University of Colorado Health and Sciences Center in Denver.
the page I went to said  the State of Colorado uses this test and (is the only state) that has it? Not sure if this is still true it was dated 2004 but apparently they were using with testing prisoners with HCV  Good Luck  

[bldenver]

welcome.

i know it is scary to post, but you've joined a supportive community.