Iron: What gets it down?

[mike716]

Okay, I'm probably posting too much. So I'll ease up after this one. But I've seen some suggestions by forum members about how to get down iron levels, and I thought it would be a nice idea if everyone who knew of some way to do it posted it so that we'd have a list of them. I'm into organizing things. I know it's annoying but I can't help it, it's a mania of mine.

Like, I saw a post from MerryBe about a drug named desferal or something that reduces iron and maybe could even replace plebotomy. She also mentioned that black tea binds iron. I didn't know either of these things. I've got high iron and i want to get it down, if possible before starting therapy.

There's this webpage I read (http://lefcms.lef.org/protocols/infections/hepatitis_c_01.htm) that says: " Despite substantial scientific evidence, however, few physicians implement iron-depletion therapy before beginning antiviral therapy. This partially accounts for the high failure rate of conventional drugs in eradicating the virus (Boucher E et al 1997; Martin-Vivaldi R et al 1997; Tsai NC et al 1997). So it seems like it might be important for me to start doing something now rather than later about my high iron, but I don't really know what to do. I mean, there's lactoferrin and IP6/Inositol as supplements, but there are also probably a lot of other things that reduce iron. I'd really like to know what they all are so I could decide what to take.

Maybe others would benefit from the same info.

So, if I'm not making too much of a pain in the a$$ of myself, could I twist everyone's arm who knows something about this to post it here?

Thanks!

Mike

[alagirl]

Honestly I can't see 300 being such a huge issue that you need to do phlebotomy pre-treatment, although that said, I think one or two units would probably bring it down to low normal.  One phlebotomy might completely normalize someone in your position.  Phlebotomy isn't bad really, and I had mine done at my GP and we didn't even have all the right equipment.  It went from 1000 to normal very fast after we initiated the phlebotomy.

And mine was around 3000 for a lot of my treatment due to the multiple transfusions I had, but my own bone marrow used it.  My hematologist was freaking a little bit but still supported me on treatment.    

[mike716]

In all blood tests since I was diagnosed in february, it's been consistently up around 300 (I can't remember what units it's measured in), and my lab report gives 300 as the Upper Limit of Normal. It worries me a lot, although I've got all sorts of other scores that aren't so good either, like GGT (around 100), bilirubin (around 2), and ALT/AST in the high 50s. But the iron bothers me more than this other stuff, because of what I've read about it. Plus I'm sure there are some dietary things and supplements I can take that will get it down, if I could just figure out what they are and where to get them.

What do you think, should I send for something like Inositol and start taking big-ish doses for a while?

Mike

[alagirl]

Its weird but my iron levels went from ultra ultra high to nil in a few weeks just restarting my bone marrow after therapy.  The best way to get rid of iron is definitely phlebotomy if your blood count can sustain it.  I was overdosed four or five years ago by an apparently well meaning but idiotic hematologist and phelbotomy was very successful for me.  But that was before I had hepc.  I was prepared to do that again after this tx but by some miracle my own bone marrow used my iron to get restarted.  (Or maybe it was my exclusive diet of ben & jerry's that brought it down since calcium binds iron - kidding)

Vitamin c helps the body absorb iron, so you don't want that.  

How high is your iron right now?

[mike716]

I know what you mean. Seems like every food processor is trying to "help us" by supplementing iron. It's maddening.

M.

[scratchinghead]

Look on all your cereal and processed foods. Sometimes iron is supplemented or is high enough to make a different choice. I found this to be true especially with breakfast cereals, cold and hot. Energy bars too.

[mike716]

This whole iron thing is really confusing, isn't it? I wouldn't be surprised if the doctors didn't understand it either. Of course, no doctor would ever admit he/she doesn't know something. :¬]

I saw my gastro last week for my IBS and asked her about iron vis-a-vis the liver, and getting mine down. She said it was okay to have high-ish iron now as it could help with the anemia once I'm on tx. When I queried her about the studies showing that iron is part of the fibrosis process, and that high iron is associated with non-response to tx, she said that was wrong. Who do you believe? The researchers and the doctors are always at each others' throats.

Mike