Seeking Hep C treatment, do I need a Hepatologist?

Hey, everyone. I haven't been on HW for quite a while. I have been frustrated trying to get answers from doctors and I am hoping one of you can give me some good information and advice. I have been HEP C positive since 1998. I have had numerous viral loads done since 2001 that all reflected I was <43 units, undetectable. After getting medical coverage with Medicaid I was finally able to get into see a Gastro specialist this past month. He did a viral load that detected over a miillion units. He stated this was very uncommon to happen as I was told that my body had fought off the virus. Now, I am in shock and wondering, can this happen.. I just had a viral load done last year that was undetectable. Now it is not. I have made no lifestyle changes and am trying to figure this out.

All this time, I have been told I could not get treatment because I already had an undetectable viral load. Now, I can get treatment. My concern is that indeed, the disease has been progressing. They have tested me for different types of cancer and a host of other diseases. The entire time, it has been the Hep C.

My next question is, before I sign up for treatment, would I be in better hands with a Hepatologist? And does anyone know of one in central Florida? I will probably be frequenting this forum in the future. It was a valuable asset to me when I was trying to find out what was wrong.

I had a lot of contact with Connie through email and phone. I am saddened at her passing. She was truly a warrior. She will be missed by many. I appreciate any suggestions and ideas on how I could be undetectable from the start, with no treatment and years later jump to detectable. Thanks
Hugs,
Mitzi

Post Edited By Moderator (MamaLama) : 4/22/2014 2:20:17 PM (GMT-6)

Hey, Mama Lama!!

Good to know you are still here!! I have been missing in action for a year. It's taken me this long to process appointments and coverage through medicaid. Thank you so much for the information. Another question I have is the nearest location I can get a Fibroscan done. I live in Titusville, central Florida located. I understand the fibroscan is non invasive. That it definitely the route I want to take. Do you know if this test is done primarily for liver transplant or could I possibly have one done prior to treatment? I have never had a liver biopsy and feel I need a more definitive look at my liver other than ultrasound. My most recent ultrasound shows fatty liver, no ascites.

Because it has taken so many years to become detectable, treatment has been withheld. I am hoping I am not too far gone to conquer the dragon. Major concern is platelets at 80,000.

Glad to hear you and partner doing well. It's great the medication was covered. I am so thankful I made the decision to go on SSI with medicaid. This would not be possible without this coverage.
Hugs
Mitzi

Glad to see you back Mitzi..


Sandia

Thanks, y'all. Where is Ziffle. David, and Mick? Those are a few I remember fondly. It is good to be back. Kind of like going home. And the light is always on here, that is the wonderful part. When I got the news this week from my gastro, I left the office, got into my car, and my very first thought was getting home and coming here. To me, that is priceless.
Hugs,
Mitzi

ziff is here too...there was a funny one yesterday from arneeb about hooterville

mick sends me a note on holidays...he is not posting these days, and is back to work...

ml

I believe that Mick is now single, sort of...

Thanks for the input, themiz! I am in complete agreement with you on the viral load testing. The Gastro stated this was not normal, to be undetectable from the very beginning and then 15 years later, bam, VL over a million. Most of the viral load testing was done through Quest Labs. I, too, am inclined to confirm this recent finding with a different lab.

My lifestyle has not changed in the past year, so why now? I had been told by multiple doctors that my immune system had cleared the virus on it's own. Another doctor said I was a false positive. I knew that wasn't the case because in 2011, my viral load was undetectable at <43, however they were able to establish my genotype as genotype 1. Common sense tells me there must be enough viral load to genotype. So none of it makes sense to me. I have been told different things from five different doctors, three were specialists. I'm thinking I need to run to a Hepatologist!!
Hugs
Mitzi

I am back again with an update. I have spent 7 months trying to get approved for treatment. First, I had United Healthcare through medicaid. They denied. The Gastro assistant told me to switch to Staywell. They denied stating I had to have Fibrosis, stage 3 or 4. I saw my Gastro Dr. today. He ordered a Fibroscore blood test. I am not very happy with this specialist because of his lack of effort to get me approved.

My question is does anyone know the three locations in the state of Florida to get a Fibroscan done. I know one is in Sarasota. The specialist does not want to do a liver biopsy because my platelets are so low. He also stated that A liver biopsy is no longer needed to confirm the progress of liver disease. I do not know if this is true or not.

A little voice inside of me is telling me to get a specialist over in Orlando. I have been working on this almost a year now with a response that these things take time. I don't want to wait until I am on death's doorstep to get treatment. The Gastro wants to try and get me on the new drug, Harvoni. Any advice will be greatly appreciated.

David, I chuckled when you remembered my nick name.
Hugs,
Mitzi

hi Mitzi, lets see!!! your platelets are 80, and you have no biopsy or fibroscan. and your gi dr dida fibroscore bloodtest. fibroscore is not accurate by itself. what has your dr said, about your very low platelets. your dr doesnt have the fibrosis stage or your grade of inflamation. these numbers can only be accessed by biopsy. fibroscan will give you a stiffness number.

your dr has little chance of approval for geno 1 without your biopsy score.
barry

Okay, I have more information. The test my gastro
dr. used was Fibrosure not Fibroscan. It is bloodwork. I got the results today and I don't think it is good. It showed a result of F-4 Cirrhosis. I have been telling the doctors I have noticed a change in how I feel for the past year. The Dr.'s assistant told me today with a result of a 3 or 4 it is usually automatically approved by Staywell through Medicaid.
My question is do I have end stage liver disease? The test measured the amount of fibrosis in the liver. I hope that putting things off for the past year hasn't caused me to be untreatable. My platelets are 75,000. I was told they did not want to do a liver biopsy because of high risk of bleeding. The doctor is trying to get me approved for Harvoni. Is the Fibrosure test of F-4 result the same as having stage 4 cirrhosis? Isn't that end stage liver disease? I need some advice. I am scared. I am feeling that I need a second opinion.
Hugs, David, you are so funny. ZelDDa
Mitzi

Thanks David. I will try to find out what the procedure is called. Maybe someone on HW will know.
I am so frustrated because I am unable to get any definitive answers, even from the specialist.

I would be interested to know how long it took for HW people to get approved for Harvoni through their insurance companies. I started the process 7 months ago. I was told that after filing three appeals, the drug manufacturer would cover the cost. Don't know how true this is. I will be hanging out at the HW Cafe more often. I am happy to see you are doing well.
Hugs
Mitzi

Thanks, David. I am writing that down right now to discuss with my doctor. Yeah, after seeing the Rainmaker, I know the insurance companies deny, deny, deny. I am worried that too much time is going by without treatment.

The doctor's assistant, Bonnie, told me the process takes about two months to approve or deny. More time passing. I am trying my best to remain positive, but it is so frustrating not being able to get answers. If someone reads this and has recently gotten approved or denied, how long did it take? As for a liver transplant, I think I have too many problems with my heart to get approved so treatment may be my only option.

Thanks for being there...
Hugs
Mitzi

If you're not cirrhotic and the Harvoni works (it does 94% of the time) everything should be fine. Fibrosis is reversible.