Ferritin, iron and thyroid levels

[Pauly Boy]

As they say it gets more "curioser and curioser". I got my 3rd test results in a little over a week. Among other levels of interest, my ferritin was at 1019( high), iron was 240 (high) but my iron binding was in range ( thank you). My doc jumped my synthyroid to 50 mcg cause my level is still at 12.1, but did go down a few tenths from my first test. I've heard that playing with the iron / ferritin levels can be a tricky thing due to sensitivity of the liver to the meds. Well, we go in Tuesday and we see I what we want to do with all of it. Oh, doc did agree to give me procrit and said he can get it approved and in his office in a day and a half( we'll see). I'll see how I feel after the week-end, if my HGB( 11.2) drops more or if I still feel poorly we go to Procrit. Whats the other med for HGB? Anybody use it? Oh, next meeting will be prior to 5th shot, what tests should I push for?. Thanx..Kill those bugs!!!   Pauly

[GoofyDad]

I had high iron and ferritin on tx too. Can't remember iron level, but it was well out of range. Two feritin readings were like 1,700 and 1,900.

Docs were un-concerned. Called it a meaningless number and blamed it on inflamation. They rechecked my biopsy and said we'd wait till after tx, then look for <a href="http://www.liverdoctor.com/Section4/hemachromatosis.asp">hemachromatosis</a> if levels didn't recede. Treatment would include phlebotomy and family planning, which I think  is doctor speak foor "Don't play hide the salami with chicks who also have hemachromatosis".

3 months post tx, Iron and Ferritin are back to normal. Sorry, I know nothing about synthroid.

[jmjm530]

And the top of the mornin' to you. Forgot to ask you, is your next TMA at week 24, or will you be testing earlier? BTW I had a celebratory dinner last night that should score some points with Cando Macho Man -- Bacon Cheeseburger deluxe with onion, tomato
and pickles, fries with Ketchup, Beer, Cheesecake,Chocolate Chip cookie-- with of course, a Pepsid Complete Chaser :) However, I think it will be Oatmeal, whole wheat toast, skim milk and banana for breafast today. Hope this finds you celebrating in your own way.

-- Jim

[sfbaygirl]

The drug my Hemotologist gave me for low Hgb is Aranesp. I think the protocol is to give the shot under 11, which can be good, if you are really suffering from the anemia. I got my shot in the dr's office and it worked very well. I am back up to low normal and feel good. Still shortness of breath.

The good thing about Aranesp, especially if you get the shots at the dr's, is 1) it works for 2 weeks instead of one 2) you can get it at 11 instead of below 10 for procrit. The suffering and waiting  to go down below 10 sounds awful from stories I have read here.

Good luck!

Jim;  So jealous, but so pleased you are celebrating.  Tonight I am going to see Boccelli. I love his voice. When I was in Italy I listend to his cd alot.  Ususally, I am a Rock fan,  but this guy can reach some deep emotions. So I will be celebrating the pain and passion of him tonight.

[GoofyDad]

To paraphrase Robin Williams, <b><i>Good Morning, SVR.........</b></i>

Onion? Tomatos? Pickles? Good God man, those are V-E-G-E-T-A-B-L-E-S, if you haven't heard. You tryin' to warm up to Forsee or something?

Assuming things settle down with other bloodwork, I'll do the next VL at 24 or 26 weeks.

This last test shows ALT rose to 51 since previous two tests of 20 and 20. Also, platelets have fallen from 110 to 90. Platelets had progressively climbed from about 60 at EOT up to 110. Baseline was 123 and 115. So, to recap, undetectable at 12 mos post, with ALT headed up and platelets headed down. The oposite of what I'd hope for. Could be a single test n anomaly of course.

I reposted all the details above incase someone has some insight. I'll retest in a couple weeks.

Also, what about TMA false negatives. Are they ever heard of?

[jmjm530]

I did get a bit carried away last night, partly because I had been denied so many things to eat during treatment, because of my chronic and serious reflux (GERD). The GERD is about 80% better now but I won't push it like last night too often.

I'm embarrased to say I'm famiiar with Boccelli through the TV show, American Idol. LOL. In fact, isn't he doing a duet at the concert with their second place finisher, Catherine McFee? Anyway, have an enjoyable evening. He does have a very moving voice and maybe I'll go out today and purchase one of his CDs myself.

-- Jim

[GoofyDad]

Well Boccelli is surely preferable to Brocceli - although in sufficient amounts, either could probably be quite moving....

[fishdoc]

hey jim, I am answering from yesterdays thread... i think you hit it on the head with "straight to retreat" because if I was clear at 12 weeks after the increased dose, my 48 weeks started with the dose increase.  my dr here doesn't even know I went, or that I increased the dose..I'm not scheduled to see him until late July..........

[sfbaygirl]

Goof,  Good morning SVR!  

Don't you mean 12 week, not 12 month PCR? That is weird you platelets are going down and alt going up.  I am NO expert, but as much as our blood goes on a roller coaster on the tx drugs, perhaps it's revolting from not having it's favorite riba and interferon taken away. Mikey liked it!  Why don't you email Todd?

My platelets went down 30 pts. this week, everything else is fairly normal. Platelets are scary as the rescue drug available no one seems to give. I sure hope mine stays high enough to treat.

Also platelets do go up and down, so another test is a good idea!

Any plans for a celebration? You sure deserve one!

[jmjm530]

Yeah, good morning (almost) SVR. LOL. (My doctor still acts somewhat cautious even though he agrees the 12 week strongly correlates with the 24 week. My feeling is that he and his collegues have been burned a few times based on 12-week results, but I'm only speculating)
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Your lab blips don't seem at all significant to me, and remember it's the TMA that counts now, baby :) My hgb went way up, then down a little post tx -- same with my wbc -- doctor wasn't phased at all.
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Regarding false negs on a tma. My understanding -- at least with Quest's  Versant HCV Qual TMA that we both took, is that false positves are more common than false negatives. In fact I believe they re-run all positives but do not re-run negatives.

Still, I ordered up a Real Time PCR (sensitivity 50 IU/ml) at the same time, for just that reason. In other words, to catch a false negative, since I assume PCR's are very accurate. So, if my tma was neg and my pcr positive, besides being really confused, I'd re-run things.

What actually happened is I had expected my PCR to come back before the TMA, as the PCR takes 3 days at most. Blood was drawn Thrusday and I got my TMA results the following Wednesday morning when I posted here. I just figured the PCR would follow later in the day. But it didn't, so I got a little nervous thinking maybe the two results contradicted each other, and they were now re-running one or the other. Didn't arrive Thursday either, so got even more nervous. Finally arrived Friday morning and I took a really deep breath as it was <50. As stupid as I felt, I'll probably do something similar at six-months, just to be safe.

-- Jim

[jmjm530]

Ah...I think...LOL...Now I realize you've been talking about two different doctors and I'm not sure which one said what. But from what you say now, it appears that your second doc (not the one you're currently treating with) recc a dose increase and will treat you 48 weeks from now (for 60 total) assuming you become non-detectible 12 weeks from now (really week 24), but all this is unknown to your actual treatment doc (doc number 1). Hopefully, I got it, but more important that you get it :) Sounds like a plan but you still might consider going 72 weeks total, depending on your stats, and the study projections that I believe Willing posted.

-- Jim

[sfbaygirl]

Boccelli was on American Idol? Opera? I never have watched a whole show, although some singers sounded really good.

The best CD is Romanzia (sp) I would sing this at the top of my lungs when I was in Sicily last summer. I am sure the hotel staff and guests loved me! I'm sure the only reason they didn't say anything is b/c we were in the honeymoon suite at a very expensive hotel. He was playing at the ancient theater right next to our hotel a few days after I left. I was bummed I didn't get to see him. John bought some pricy tix for tonights show a few months ago, as he knew how I loved him. Sweet guy.

I am surprised I didn't mispell Boccelli. Yeah, broccoli moves me all right... I think those broccoli sprouts all over my body on your calendar will be quite moving as well!

[GoofyDad]

I'm not losing any sleep over this - but I do feel that to reasonably expect improved architecture I need to maintain ALT down around 20. My goal is to recapture one grade, thus eliminating cancer screenings. That's when I'll feel I can pretty much put this behind me.

And Jim, it would be so wasteful to consume a well seasoned pair of Odor Eaters in one sitting. I grate measure portions onto my organic spring mix. And Dan-the-man-Quayle is NOT my idea of a role model. Now John-my-man-Belushi...

[sfbaygirl]

You are right. I'd take Beluchi over Quayle any day! I watched the Beluchi Bros. the other night. What a hoot. Wonder whay ol' Quayle is up to these days. Hopefully not teaching English!

[jmjm530]

speaking of eaters..I"m gonna go run for some bkfast, so last comment for awhile...

I really don't think you need to get your alt down to 20 to stop fibrosis from progressing or to have it regress. Where did you come up with that? My understanding is that it's the absence of the virus in SVRs that will regress fibrosis in many but not all cases.
But the only way to monitor things is with periodic testing such as biopsy, fibroscan or maybe blood marker tests. Regarding "cancer screening" -- I guess you're talking about AFPs?. I was told to get that blood test every six months for life regardless of whether I clear or not.

-- Jim

[GoofyDad]

I'm on blood tests every 3 mos and ultasound every 6. It's more the emotional thing -- I'd like to hear the doc say, ferget it, minimal risk of cancer... and he volunteered he would do so if bx showed reversal away from cirrhosis.

Anyway, as I understand it fibrosis is caused by regeneration of liver cells in an inflamed environment. Raised ALT is an indicator of iflamation (or at least accelerated cell death). And so, by my not-so-common-sense logic, reduced ALT is what I want.

Enough about this, I'm gonna relax and see what comes.

[GoofyDad]

Make that Brocolli vs. Boccelli. Rotten jokes are that much less appealing when spelled wrong.

I guess at stage 4, I'm pretty tuned into to liver markers. Low platelets are of course a sign of deteriorating architecture, and ALT speaks for itself. Seems very unlikely architecture has collaapsed in 2 months with no (serum) viral presence. Waiting a couple weeks seems the way to go. Doc attributed ALTs to likely viral bug 'passing through'. I'll consider additional VL testing if things don't resolve.

BTW, the Doc also conceded he was quite worried about relapse with the raised ALT and pending TMA. Said he crossed his fingers. Sometimes you have to toss the science and go with proven technology. His silence on the ALT until TMA results were in was deafening.

[jmjm530]

From experience, I'll tell you that your raised ALT's wouldn't have phased my "name brand" doc at all.

Still, he's not conceding SVR based on just a 12-week negative. In fact, I have a feeling that no one in the team gave me very good odds for SVR from the beginning based on geno (1b), age 59, and histology (stage 3), and are still somewhat surprised. So you're saying that even if your ALT's are normal (but don't drop more) you may do a TMA before week 24. Certainly can't hurt except for the stress of waiting for results, but you got to keep telling yourself that the odds of staying negative at this point are around 98-99%.

-- Jim

[sfbaygirl]

It sounds like you are really worried. I am sorry to hear this about the alt. I would be worried too. But as we know worry won't help anything and stress really does cause disease. I hope you are doing some fun things and getting your mind off these tests. You are SVR, remember! The waiting game is the worst! Do you know when the results will be in?

Take your kids to Stinson, throw the frisbee or some balls. We are all thinking about you and know you will be okay.

Dan Quail mispelled a vegetable and everyone thought it was funny. Actually it was!  

Chin up buddy, don't worry until you get those results back. Right now you are SVR and you are gonna stay that way! Forsee felt it in her bones, remember?

[jmjm530]

FWIW, here's my NP's take on ALTs. She told me that during treatment ALTs are knocked down to what she termed "treatment level ALTs". But after treatment they sometimes rise to "post treatment level" ALTs which may be a little higher. In her opinion, it doesn't mean your liver is acting up, just that your body is gradually finding its natural ALT level as the drugs leave. My ALTs were around 20-24 for most of treatment and then blipped into the 30's for a couple of weeks after treatment and were back around 20 at my 12-week test. In the past, I've also found my ALTs very sensitive to diet, in fact I could normalize my slightly elevated ALTs by going on a very low fat diet. You didn't end up eating those odor eater's by mistake did you? That could also raise the ALT.

[GoofyDad]

I am thrilled with my progress towards eradicating this virus, let there be doubt about that. And I'm sure the last thing anyone needs to hear is me grousing about residual raised ALT. So I'm sorry if it hits a bad note with anyone. The elevated ALT does leave a loose end in my mind though. As I see it, the underlying point of tx is to end the assault on the liver (non-hepatic issues notwithstanding), and raised ALT is an indicator of ongoing assault on the liver. So knocking down the bug without maintaining ALTs at least within normal range leaves me still a bit unsettled.