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Avatar universal

hep c

hi again
thanks for the advice from everyone, you all seem to know a lot about this disease, i know nothing, the itching is driving me crazy, i dont even know what causes it,i dont think i will find a doc that wil treat me i have been to two gastros the fisrt one refused and my platlets were 120 back then two years ago, the second one well he did try like i said i managed to get in to shots of peg but that was it as my norm doc started having heart attack at the rate my blood counts were dropping, so they ended up stopping treatment, so does anyone know how you know you are in the end stage liver disease, or what symptoms to look for as they wont even give me biopsy to see if i have liver damage or cirrohis
23 Responses
Avatar universal
The only advice I can give you right now is find a new doctor, perferably a hepatologist. There is no other way to find out how bad your liver is damaged than a biopsy.

Someone else will be along to answer your question on end stage liver disease and give you some sites to go to.

Good luck to you. I hope your name fits your situation.

Avatar universal
You should find a new doctor. Like doll face recommended go to a hepatologist. Most major teaching hospitals have clinics with a team of hepatologist on staff. I saw 3 GI docs before ending up with a good hepatologist but even every one of them recomends liver biopsies right away. LL
Avatar universal
You probably will not get a biopsy because of your low platelets, there is a risk of bleeding. But they can dx your situation with blood work. You need to see a knowledgeable doctor, get lab work done, and get answers to your questions that you can understand. Be pro-active and demand action.

My husband was taken off tx because of his low platelets. They were not interested in giving him anything to boost them. I think some were saying Vioxx was also a platelet enhancer, but didn't they take that off the market or something?

Google cirhossis (?) and end stage liver disease until someone comes on board with sites. The itching is a sympton of liver disease but for the life of me I can't remember what causes it right at the moment.

Good luck
Mattie
Avatar universal
The alternative to conventional biopsy that Couchpotato is referring to is called FibroSure. It's a test created by LabCorp.  It can be ordered by any physician, including your family doctor.  It's supposed to be pretty accurate if your level of liver damage falls on either extreme of Stages 0-1 and Stages 3-4.  It's that middle range where there's some debate on it's accuracy.

I recently asked my family doctor to order this test for me.  She wasn't familar with it, nor was the lab, so it was a good thing that I had anticipated that and brought with me the description and  specimen requirements.  Here's a link to that information so you can print it out and take it with you to your doctor and lab.

http://www.labcorp.com/pdf/HCVFibroSureLabFacets.pdf

Good luck to you.  

Susan
Avatar universal
Get a PT + APTT coagulation blood test. Also get a visual coag test where they manually nick your skin surface and time the coag. Before my op my platelets always hovered around 64 but my coag time was always within range. Why? I Had HCC which throws off platelet and iron measurements. Any doc can order this test.
Avatar universal
did you happen to read the advice mikesimon gave to biophil a few questions down the list (a question about varises)...he talks to biophil about platlets from some of his experience i thought you may want to see that if you hadn't already...
Avatar universal
please cut and paste and read this article from 5 years ago...surely by now they must have a solution for low platlets so you can get your treatment...the below article is very interesting and there seems to be alot written on this issue...i did a search on low platlets and hepatitus c treatment...i think your dr needs to do some googling!!!

http://www.hepnet.com/hepc/news1030B00.html
Avatar universal
Thank you.
Avatar universal
Welcome kanzou.
Chev, How are you? I start my tx. Friday (was supposed to be Thurs., now postponed by Dr's office till Friday). Anyway, I've been missing you.
Lauren
Avatar universal
Sorry, I was pulled away before I was finished. If your coag results come back as normal, your Total Bilirubin marker is high and you scratch like flea ridden dog at night insist on liver biopsy followed by a ct scan with contrast to rule out HCC.
Avatar universal
hi and welcome kanzoo you sound like you have alot of experience with this type stuff...how are you? do you have experience with hcc? i surely hope not...hope you are well...are you on tx?  

it's nice to meet you...sandi
Avatar universal
Thanks, and thanks for asking...as for the HCC, yes I battled it from 03 to 04 and had my liver removed. Its very important to the readers of this forum when they get a ct scan, I urge them to always get one with contrast. A standard scan misses a lesion (tumor) as it did me for 2 years. If it was detected earlier, I think the RFA (radio frequency ablation) could have prevented my transplant. I'll never know. And no, a bx does not detect this. Mine always came back normal with a slight swelling. They blamed the swelling on "possibly from the HCV."
Poor diag of the bx? Two different hospitals, quite possible.

When my liver was removed the lesion was .2cm (point 2) away from my portal vein. Liver tumors are single rulers, that is, they want to from their own colonies. I was weeks away from the colony reaching my portal vein and devastating my body.

For those who may feel they have HCC or want to rule it out, here are the major symptoms;
Frequent nite sweats
Unusual loss of hair (shower drain cover covered)
Extreme fatigue - if you stop moving you doze off
Severe nite itching - only at night, max sleep is 45 minutes or so. Lotions help but not more than 45 minutes, same as water. Fine during the day, no itching.

No fever, slight jaundice, no ascites, everything else fine and dandy.

MY VL pre transplant = 845,547 (dropped 500,000 via two year herb program, originally 1.3 mil)
My VL post transplant = 278,457 a drop of 567,090 copies

Am I on tx? No, not anytime soon. I'm still investigating the many trials.
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