Thanks so much for the info, Sandy (ucbgal).

So iron was high, then 1 point above normal, then high again. (309, 146, 285) with  normal  range 37-145. The strange thing is when i quit eating fortified cereals, which i would eat sometimes for 2 meals and always more than a "serving" of 3/4 cup, and red meat, etc,  it was nearly normal, just one point high! But then the last time it was high again. I think that all my other bloodwork is pretty normal, except alt and ast, and my tumor marker is like 24, I think. My red blood cells and hemoglobin are normal,platelets are low (74), alkaline phosphatase is high, neutrophils slightly low and lymphocytes 10 points high. So I guess diet is involved as far as high iron? Hard to believe it could make such a difference.

Anyway, was going to cancel hematologist appt. That is Thursday but now I'm going since it's high again. It's strange! I'll let you know how it goes. I've been eating cereal but not the 100% daily allowance stuff, only 6 or 8% and I rarely eat red meat now, which I used to eat all the time. I'm lucky I didn't kill myself eating Atkins for years. Wish I had had my iron checked then. My cholesterol dropped to normal, interestingly doing Atkins.

 I think all people with this disease should ask to have iron/ferritin checked. It should be included in anyone's blood work, in my opinion. Thanks again for the reply. So nice having people interested instead of clueless and not wanting or understanding the details. I'll keep you posted. Take care.

Audrey

p.s. When my liver doc  saw my first, original highest iron lab, he checked my last liver biopsy and it didn't show iron. Think that biopsy  was in early 2013.

audreyanna,

am so pleased you rejoined this forum. the new meds have better response rates & shorter time frames. it truly is an exciting time for all the developments & advances w/ the new meds.

i to suffer from high ferretin & saturation as well. prior to my 2nd round of tx, my orthopedic surgeon discovered my ferretin problem. i've been anemic/dizzy my whole life & for 30 yrs. took multivitamins W iron & iron supplements as well. 5 years ago my ferretin was 2000 & saturation 90%.

also i don't have hemochrotosis & was told hepc meds would solve my problem. oops it didn't .... i'm 3 mo. eot & have normal iron saturation & a 900 ferretin level. turns out i have meditteranean anemia/thalamessemia minor. sounds like you do as well. if your anemic, low red blood cells,and have low hemoglobin you've got it. the low hemoglobin along w/ popping iron pills creates excessive ferretin. if left untreated one becomes cirrhotic.

my dr. insisted on tx first & soon i will begin blood letting. of course my cbcs will be monitered & if need be i'll use procrit as a rescue drug.

the combonation of hepc & thalamessemia minor is not something to take lightly. thus i know how you feel....lethargic, bloated, bluish tint to eyes and dizzy all the time.

please speak to your heptologist about this. i switched drs. mid tx & new dr. told me he would have resolved my ferretin levels first..

if i'm not mistaken there are 2 other people on the forum w/ this situation as well. maybe they can chime in as well.

be well & best wishes for your recovery.

sandy,ucbgal

Hi Audrey

Just to say Hi and welcome. Good luck with your treatment

Congrats Mark!! I'll bet you are so happy and relieved! Hopefully everyone can have the same good results and they last. Such a short course of treatment, bet it's still sinking in!!  

Thanks for the welcome and great info. Trying to figure out my replies but not using the right ones for the hierarchy of the posts, somehow. ill figure it out sooner or later.

Thanks,

Audrey 

Thanks so much Tig. I truly appreciate it!

Audrey

Hi Audrey,

Welcome! I read your original post regarding the Sovaldi/Olysio combo and am happy to report that it's worked well for myself and others on this board. I started the TX on Feb 14th, my viral load dropped from 3.7 million to 244 after 7 days and then undetected after 21 days with very few side effects. My ALT and AST are also within normal range. I'm hoping you are able to get started and have the same success!

Regards,

Mark

Hi Audrey,

We have a friend and fellow member here, Sandy (UCBGal) and she has had ongoing problems very similar to yours with Iron (Ferrite) levels for years. She's currently waiting for her EOT +12 viral load and we've spoken at length on her iron levels. She has also gone through blood letting and numerous other things to control her iron before, during and now after treatment. She is beginning to have good success with it and I'm going to get in contact with her and ask her to talk with you about this. She's an pro on this subject and can give you a lot of insight and suggestions on what to do. I send her a message now. 

Tig

Tig,

Thank you for the reply. I am actually very focused on this and it feels so good to have lost that doomed feeling For the most part.

I felt pretty doomed a few months ago. My primary dr. did bloodwork and my iron was very high: normal for the test was up to 160 and mine was 309 with 89% saturation!! Liver docs never checked it as far back as I have records, so I didn't know if it had always been that way. I read online how bad that is for everything, especially with cirrhosis already so I was freaking out and felt like I could almost taste iron! So I went to a hemo dr. and it was just one point above normal. I attributed it to no red meat and no iron fortified cereal Or just a fluke. Then I had bloodwork for University of Miami and it was back up again to 285 but saturation was only 67% so don't know what to think about that. Tested me for hemochromatosis and not an issue so guess I just have to be careful With diet.  My spleen is enlarged also and I can't think of simple words sometimes (Brain fog). My alt and ast are always high, 200s to almost 300. So can't wait to see those normalize. But meld score is pretty low, bilirubin and albumin are very close to normal, or whichever tests make up the meld score.

I guess I'm babbling but just wondered if anyone knew about the iron and if that's normal, because it seems very damaging and worrisome. Maybe that's why they don't test for it. But you'd think they would test everyone with hep c and do the bloodletting to get it to normal. I'm going in Thursday to a follow up with the blood dr. and see if he thinks I should get rid of some of it.

ok, I have certainly ran on and on long enough. So nice to be able to get this out of my brain,

Thanks!

Audrey

Audrey,

I'm just glad you've got things back on track, that's what's important right now. I would be encouraged about your future and wouldn't worry about it. I'm sure your son will have his wonderful Mom around long enough for you both to enjoy all the world has to offer!! I'm also sure you've got plenty of time to enjoy that retirement nest egg too, lol! You're going to beat this thing, count on it, okay? Don't worry about anything here, if you need help finding anything, or tips on navigating the forum, just let me know! Please keep us up to date on the news from your doctor. 

Tig

Thanks both of you for the welcome backs and condolences. Yes, it was very hard and I'm sure my liver got worse from the stress of 2011. I was afraid I wouldn't survive it and I still have my bad days But I'm much better with this latest news.

The good thing is I see Dr. Paul Martin at University of Miami who top in his field and his staff said not to worry about the approval and that they may have to appeal it but they have the process down I'm sure. So I'm expecting to hear something within the next 5 weeks, as they said 2 to 6 weeks from when I went.

I have been wondering about my prognosis even with a cure since I have cirrhosis, so that's great news to hear the meds might even help repair it some. Maybe that will be the next medical breakthrough - stem cells or something for liver damage!

I have a son still at home in college and have been such a wreck, thinking I only had a couple years left and I'm all he's got and worried about what would happen to him. Plus I just retired and after 36 years I have a great pension and thought how unfair i wouldn't be able to enjoy what I have worked so hard to get. 

Now with this new treatment and this board of wonderful people in the same situation, I am elated. It feels so good to get this all off my chest to people who understand. Thanks so much for being here. Forgive me if I get mixed up with posts. It's new to me.  

Hi Audrey,

Welcome back to the forum! First, let me send my condolences for the sad losses you suffered recently. That must have been so difficult and likely will take some time to adjust and recover from. I'm so sorry you had to experience such a thing. I hope everything is starting to look a bit brighter and am so glad you've returned here. 

You waited for a good time to retreat and you came back when things are really promising in that arena! I'm sorry that your fibrosis has progressed to cirrhosis, but the good news is, we're seeing fibrosis regression following SVR now. We've got members that are witnessing that as we speak and your opportunity to see the same is quite good. Is there any chance that you'll have another biopsy or perhaps a fibroscan? That's becoming more widely available and is far easier than a biopsy! Please keep us updated on your tests and information.

The indications of high success rates are quite promising. We have members currently taking this combo and their preliminary lab results have been excellent. Every single one of them have either seen rapid undetectable test results or multi log reductions in viral load in just a few weeks time! It's great!! The COSMOS trials offer some very good information on this. Of course at the moment this combination is still considered "Off Label" and we're seeing spotty approval records by insurance companies. However the payment assistance programs are being quite agreeable to help when the doctors approve the combination. I would check into it and then if your insurance hesitates, I would certainly seek the advice of these organizations. We have a list in the Knowledge thread on "Payment Assistance Programs" available.

Continue to look up and if I can help you with anything, just say the word! We're here and we're all on your side. Good luck Audrey! 

Tig

Sovaldi/Olysio Info

Hi Audrey,

Welcome back. Treatment is much easier now, even for cirrhotics. I hope you get approval for Sovaldi and Olysio. It's off-label, so we don't have any Phase 3 studies, but the SVR rate is close to 90%. Keep us informed. Good luck! Cheers.

Ive actually signed up on this website in 2011 but it was a very bad year as my close friend, husband and then mother all passed away so I never got around to posting anything. Feeling much better now, especially with the new treatments available! How exciting. 

i was diagnosed in 1997 and tried the interferon with ribovirin twice. Last time my platelets dropped to below 20 I think and I felt like I was going to die so went off treatment after 3 months, I believe. 

So now I have cirrhosis and not sure how bad, they didn't grade it for me, but have had it quite awhile so have been a wreck about that. Feel ok but take pain pills for neck and shoulders so otherwise I don't know how I'd survive. 

anyway, am waiting for approval for the sovaldi and olysio combo for 12 weeks and am very excited about that. I'm also excited to be part of this board as I have been reading it off and on and you people are great.

anyone cured from the sovaldi/olysio yet?