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

[CockSparrow]

Iron: What gets it down? No Idea, NAC Maybe.

I do know what picks it up though. Magnets.
CS

[dranurag]

Hemolysis during tx by ribaverin does raise it but if you already have high iron you should modify your diet and stop any supplements.You can on the other hand be having hemochromatosis or hemosiderosis both of which lead to iron deposits in liver and cause liver damage separate from hep c

[Trinity4]

Mike,
I had 13 phelbotomies prior to tx.  Ferritin went from 783 to 17.  Worked for me. My doc was very emphatic about reducing the iron prior to tx but the primary reason was because I had PCT.  High iron is not something you want while on tx.  Some say it doesn't matter but I have read too much info and know better.
Trinity

[GSDgirl]

I also had PCT, It took me 5 phelbotomies to get my levels down.  I started tx for hep very soon after.  Did the sun cause large liquid filled blisters on your hands?  It did mine and oh boy did they hurt, I couldn't even hold a pen at one point and anything would just rip my skin.  The scars have faded alot but under certain lights they are still visable

Denise

[nygirl7]

Mike,

Any serious question is ALWAYS welcome.  You can't post too much when you have a new disease and you have questions to ask.  We all did it at one time or another. shoot...I drove people CRAZY when I first started here (and at that time we had a "limit" that was imposed and we could only begin like two threads every few months so it was REALLY hard to handle not posting!)

PS The organizing isn't a mania of just yours...........it seems to be REALLY prevalent amongst heppers, I don't know why but lists upon lists upon folders of information and questions.....................most of us have done it and found it really did help us!

[Trinity4]

You are the first person I've seen since posting in October that also had PCT.  If it hadn't been for that diagnosis I probaby wouldn't have known I had hepc.  My hands were terrible, very fragile skin that would tear even if I bumped my hand on the wall.  Blisters were especially bad when I would get in the sun but I didn't know the sun contributed to blistering so I went all last summer without using protection on my hands. It was painful and my hands looked like hamburger meat at times.  I started noticing my skin wasn't so fragile about half way through the plebotomies.  Now scars are very pale and going completely away.  My hands actually looked purple in the sun light because of all the scarring at first.  I don't think my doc needed to bring my ferritin level down so low but he's a knucklehead anyway so I'm not suprised.  My hemoglobin dropped to 10.5 and I started tx a week after my last phlebotomy so I figure I'm a good candidate for anemia anytime now as I'm in my 7th week of tx.  Blood work as of 3 wks ago did not indicate anemia but I just had another CBC done yesterday so we will see.  I feel like I got double whammied with the fatigue because I felt pretty bad to begin with after all those phlebotomies and now tx.  Oh well, we do what we have to do and just suck it up I guess.  Just wanted to let you know I have also shared that experience,
Trinity

[miked]

High iron levels was was led to my HCV diagnosis.

I've read a lot about high iron and tx.  Elevated iron can take a toll on all internal organs and must be managed.  Phlebotomy (blood letting) is the gold standard to lower iron levels.

As for tx, there are studies out there that elevated iron levels can really effect the outcome of SOC tx so reducing the levels before tx'ing makes sense.

What really brings the iron levels in your blood down is being cured.  I failed my first tx with SOC but am SVR after 24 weeks on Prove 3 with VX950.  Since then ALL of my labs have normalized, including iron.  Good luck.

miked

[merryBe]

prebleeding is one thing, but while on tx this will lower and push many into procrit territory.

I'm trying tannin, and tums, and no citrus unless eaten alone.
also reading labels for low iron dairy/bread/soup/pasta/cereal..you name it...some pasta and cereal contains 50 % of daily allowance...you do do NOT want iron fortified anything.
also eat no red meat/prunes/raisins/nut butters///all highly absorbable forms of iron.
further, if you eat your meat fish dishes separately from your mail meals you will absorb very little of your veggie stir fry and salads...reason being the Heme-iron in the meat proteins helps the non-heme veggie irons to absorb....so keep meats to 1-2 oz of white meat or cheeses....
also if you do indulge in chocolate or coffee..take milk or tums with it...and the iron absorption will be blocked.
even the decaff black tea has tannin, so it works well with the evening meal.
too much calcium can bind one up so be sure and take your PPC and lactulose.
also do not take tums in the meal you take Riba in.

when looking at lists remember that the amount of iron in a food is not the same as the absorbable amount...Absorption is what you need to focus on.
for that reason avoid citrus and vinegarette which help break down salad irons into absorbable forms.

[Trinity4]

I think diet can effectively control iron but in my case with ferritin so high diet would never have made a difference.  It just depends on the levels.  Plebotomy dumps a huge amount of iron from the body in a relatively short period of time.  So far I am not anemic but that's not to say it won't happen down the road.  Many are forced to procrit without ever having plebotomy.  I'm not an advocate of this procedure, as a matter of fact I hated it, but there was no other solution for me.
Trinity

[fretboard]

I read this somewhere, if somebody already posted this info. forvgive me for not reading it before I posted.  You can lower your iron level by maintaining a good diet, normally that means balanced meals.  Stay away from vitamin A, take it easy on the salt and don't take any supplements unless you know that they don't affect the increase of iron levels.  Oh, drink plenty of water and moderate excercise, excercise in moderatation is very important in maintaining iron levels.  hope this helps.  later

[mike716]

I'm going to respond to the posts one by one in the order they were sent. Hope that's okay with everyone.

M.

[mike716]

You're first. So, magnets pick it up? Well, then maybe they can put it down, huh? (Hardy-har-har)

M.

[mike716]

Stop supplements? That's sort of going too far, isn't it? I mean, I just got started on suplements, and I'm still convinced they're a good thing.

Maybe I should watch what my intake is of certain iron-rich supplements. But which ones are they?

Maybe I do have hemochromatosis or hemosiderosis. I sure can't count on my doc to tell me, though, even if he knows, which is doubtful.

Can you tell me what the blood test indications for these are? That would be a good place to start.

Mike

[mike716]

I see phlebotomy as a last resort. For now, I'd like to try other stuff, like iron-reducing nutrients.

What is PCT? I put it into Google and got two hepc-related phrases: Prothrombin Consumption Time and Porphyria Cutanea Tarda. Are either or bot of these related to iron?

[robeire]

Watch out for iron cooking pans,stainless steel cookware etc-iron leeches out of these- water supply is worth chekkin out as well-
I ve read some research in the past i think it was in italy, about IP6
http://en.wikipedia.org/wiki/IP6

Even though Iron Overload. Org insists that Phlebotomy
is the only way to reduce your Iron stores we see several
other natural chelators being mentioned in the internet.
So far I have been able to find the following ones:
1. IP-6 or Inositol Hexaphosphate which is Phytic acid
2. Milk Thistle
3. Green Tea extract
4. Citrus bioflavonoids

personally I do all the iron reducing measures already mentioned

best wishes
Robinireland

[mike716]

Thanks very much for your support. I'm trying to moderate my questioning here as I don't want to become a bore. There's so much I don't know, though, and so many good people here who have been around and have some, if not all, of the answers.

If this were a normal listserv-type mailing list, I wouldn't have to post separate posts to each person I was trying to dialogue with. But the style of posting on this forum forces me to look conspicuous, like sending ten posts to this thread, one after the other. I suppose I look like a jerk, but who cares about appearances at this point?

Mike

[mike716]

What are Prove 3 and VX950?

M.

[robeire]

Hey Bro , we are all in this together ;)
keep researching / asking /investigating !!
dont let pride and guilt  limit your recovery !!

Have a nice weekend my friend
God Bless
Rob

[Trish77]

just a hint that I noticed people posting to more than one person within a post and it made sense so I adopted that method as well .... but not always.  You'll figure out what your own preferred method is.

[mike716]

Thanks for the new ideas on anti-iron stuff.

Do you have any URLs for tannin vs. iron? Tums?

What's wrong with citrus? Should I stop eating all this grapefruit (I've become a grapefruit nut since reading about naringenin). Or just stop eating it at breakfast with other stuff?

I've been eating a lot of oatmeal recently. And other whole grains. Do you think that might be a bad thing to be doing? Have they got a lot of iron?

Ditto re prunes and raisins. I thought they were good for you and have been devouring large quantities recently. Is that bad?

Milk in coffee is okay, then? Stops the iron-absorption? (These are important dietary points, I think. And I definitely believe that diet is the key to keeping down progression of liver disease.)

PPC is that polyunsaturated form of phosphatidylcholine that HR recommended, is that right?

Mike

[mike716]

What's hateful about phlebotomy? What bad stuff happens?

M.

[mike716]

Do you know of any websites that give info on which specific supplements are good/bad for iron levels?

M.

[mike716]

Thanks for the info and URl, Robin.

I have been drinking a lot of green tea. Do you think it's a lot better to take the extract?

I've found at least six different forms of milk thistle, the ultra-thistle (PPC-linked) form being the most interesting one, maybe. Which form of it did you decide on?

Ditto re IP6/Inositol. Also: were do you get it?

Mike

[GSDgirl]

I am not trinity but I can answer the phlebotomy question.  They use an 18 gage needle to drain blood, I think it was 500 cc's at a time.  Personally to me it hurt like crazy.  Also the PCT is porphyria another awful disease caused by hep c.  I think there are only one in 150,000 hep c patients that get it, maybe more.  I also had it.

As far as the iron goes, you have to read the labels.

Denise