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Iron: What gets it down?
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$$ of myself, could I twist everyone's arm who knows something about this to post it here?
Thanks!
Mike
Like, I saw a post from MerryBe about a drug named desferal or something that reduces iron and maybe could even replace plebotomy. She also mentioned that black tea binds iron. I didn't know either of these things. I've got high iron and i want to get it down, if possible before starting therapy.
There's this webpage I read (http://lefcms.lef.org/protocols/infections/hepatitis_c_01.htm) that says: " Despite substantial scientific evidence, however, few physicians implement iron-depletion therapy before beginning antiviral therapy. This partially accounts for the high failure rate of conventional drugs in eradicating the virus (Boucher E et al 1997; Martin-Vivaldi R et al 1997; Tsai NC et al 1997). So it seems like it might be important for me to start doing something now rather than later about my high iron, but I don't really know what to do. I mean, there's lactoferrin and IP6/Inositol as supplements, but there are also probably a lot of other things that reduce iron. I'd really like to know what they all are so I could decide what to take.
Maybe others would benefit from the same info.
So, if I'm not making too much of a pain in the a$$ of myself, could I twist everyone's arm who knows something about this to post it here?
Thanks!
Mike
thanks for explaining the tests.
I have read that starting out some docs try to get us down to 50...knowing during tx our levels will rise.
However...they only do that if we are above normal (50-290) to start with.
I see Mike's point here. My doc said..."you shouldn't worry your biopsy showed no iron in the liver"...but that biopsy was over a year ago....and my iron has doubled since then.
from 144 to 387...and that is on a LOW iron diet.
Maybe you could explain why what what was going on a year ago means nothing bad is happeneing now? I'm a little confused by his reasoning that a biopsy a year ago proves what is going on now is not a problem.... and would like to know if there is sound science there....or if I'm getting the brush off.
any thoughts here? thanks
MB
I have read that starting out some docs try to get us down to 50...knowing during tx our levels will rise.
However...they only do that if we are above normal (50-290) to start with.
I see Mike's point here. My doc said..."you shouldn't worry your biopsy showed no iron in the liver"...but that biopsy was over a year ago....and my iron has doubled since then.
from 144 to 387...and that is on a LOW iron diet.
Maybe you could explain why what what was going on a year ago means nothing bad is happeneing now? I'm a little confused by his reasoning that a biopsy a year ago proves what is going on now is not a problem.... and would like to know if there is sound science there....or if I'm getting the brush off.
any thoughts here? thanks
MB
Mike
Sorry I was in a bit of a mood yesterday. I was talking about your Ferritin
I wont call you normal again.
If you are inside the normal range even high normal, what can you do.
I must admit that if I were in your shoes I would like it a little lower but normal is normal. And high normal is still normal. Your Iron does fluctuate.
I know what you mean about high ALT/ASTs, bit of a worry aint they. High GGT is not good either These all idicate something is happening.
All still normal for HepC though. So I can still say you are normal.
That’s thing about blood markers while they do indicate something is going on they don’t give a good picture of how bad or how fast damage is occurring.
When you get a biopsy you will get a clearer picture of what is happening and if they check for Iron this will also give more info on your liver iron stores.
Till then it’s a bit of a guess.
All the Best
CS
Sorry I was in a bit of a mood yesterday. I was talking about your Ferritin
I wont call you normal again.
If you are inside the normal range even high normal, what can you do.
I must admit that if I were in your shoes I would like it a little lower but normal is normal. And high normal is still normal. Your Iron does fluctuate.
I know what you mean about high ALT/ASTs, bit of a worry aint they. High GGT is not good either These all idicate something is happening.
All still normal for HepC though. So I can still say you are normal.
That’s thing about blood markers while they do indicate something is going on they don’t give a good picture of how bad or how fast damage is occurring.
When you get a biopsy you will get a clearer picture of what is happening and if they check for Iron this will also give more info on your liver iron stores.
Till then it’s a bit of a guess.
All the Best
CS
To MKAndrew and all:
My lab reports say that the normal range of serum ferretin is 30 - 300. I've got around 300. You can say it's still within the normal range, but let's face it, it's way more than what I need or what's good for my infected liver. Even if I didn't have HCV, I wouldn't want to be at the ULN for iron, I'd want to be down at least in the middle, around 100, or even 50. That's normal, too, and it isn't overloading the system. But my liver IS infected, and the virus is using iron to kill hepatocytes. So 300 is even worse now. Whether I'm on therapy or not, I don't want all that unnecessary iron in me giving the virus an extra hand in knocking off liver cells.
That's my logic. Anyone out there see something wrong in it?
For CockSparrow:
Normal? I don't get you, CS. I've had elevated AST and ALT for years, my GGT fluctuates around 300, so does my serum ferretin, and my total bilirubin is at 2.2, twice the ULN. I may not have varices or portal hypertension yet, but if I've been carrying this virus around for forty years as seems to be the case, there's gonna be liver damage. And even if the damage isn't too great so far, it can accelerate at any time. There's nowhere says that fibrosis and cirrosis progression is lineal over time. Quite the contrary. Older folks like me (I'm 64) are bad bets, not only for tx but for eventual outcome. Check the statistics. I'm most likely gonna die of this disease eventually, regardless of what the present extent of liver damage is.
You call that normal? I don't. I call it having a bad and almost untreatable disease. I'm going to do everything I can to keep that disease from progressing.
Mike
My lab reports say that the normal range of serum ferretin is 30 - 300. I've got around 300. You can say it's still within the normal range, but let's face it, it's way more than what I need or what's good for my infected liver. Even if I didn't have HCV, I wouldn't want to be at the ULN for iron, I'd want to be down at least in the middle, around 100, or even 50. That's normal, too, and it isn't overloading the system. But my liver IS infected, and the virus is using iron to kill hepatocytes. So 300 is even worse now. Whether I'm on therapy or not, I don't want all that unnecessary iron in me giving the virus an extra hand in knocking off liver cells.
That's my logic. Anyone out there see something wrong in it?
For CockSparrow:
Normal? I don't get you, CS. I've had elevated AST and ALT for years, my GGT fluctuates around 300, so does my serum ferretin, and my total bilirubin is at 2.2, twice the ULN. I may not have varices or portal hypertension yet, but if I've been carrying this virus around for forty years as seems to be the case, there's gonna be liver damage. And even if the damage isn't too great so far, it can accelerate at any time. There's nowhere says that fibrosis and cirrosis progression is lineal over time. Quite the contrary. Older folks like me (I'm 64) are bad bets, not only for tx but for eventual outcome. Check the statistics. I'm most likely gonna die of this disease eventually, regardless of what the present extent of liver damage is.
You call that normal? I don't. I call it having a bad and almost untreatable disease. I'm going to do everything I can to keep that disease from progressing.
Mike
Got to disagree with you buddy. I had high ferritin 783 or something like that and had to have phlebotomies prior to tx. Also had PCT which is caused from iron overload too but HCV needs iron to replicate.
Iron’s Role in Hepatitis C Infection
Hepatitis C inflicts most of its damage by latching onto molecules of iron, resulting in free-radical damage to liver cells. In turn, the liver becomes inflamed, which can lead to the formation of scar tissue (fibrosis). If left unchecked, this steady damage will result in cirrhosis or liver cancer.
About 30 percent of people with hepatitis C have very high iron levels. Reduction of serum iron has been shown to normalize liver enzyme levels, which are elevated during periods of active liver damage (Fong TL et al 1998). Iron depletion therapy has also been shown to improve the response to conventional medicines used to treat hepatitis (Fargion S et al 1997). The only effective way to decrease serum iron is to have an iron loss, as occurs when donating blood. Hepatitis C patients cannot donate blood for common use, but their blood can still be removed, although it must be discarded.
Serum ferritin is a measure of the amount of stored iron and is used to guide therapy. A serum ferritin value between 30 and 80 ng/dL is optimal. Many hepatitis C patients have serum ferritin values in excess of 300 ng/dL.
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).
I don't think Mike's are too high yet, but high iron is a no no!
Trinity
Iron’s Role in Hepatitis C Infection
Hepatitis C inflicts most of its damage by latching onto molecules of iron, resulting in free-radical damage to liver cells. In turn, the liver becomes inflamed, which can lead to the formation of scar tissue (fibrosis). If left unchecked, this steady damage will result in cirrhosis or liver cancer.
About 30 percent of people with hepatitis C have very high iron levels. Reduction of serum iron has been shown to normalize liver enzyme levels, which are elevated during periods of active liver damage (Fong TL et al 1998). Iron depletion therapy has also been shown to improve the response to conventional medicines used to treat hepatitis (Fargion S et al 1997). The only effective way to decrease serum iron is to have an iron loss, as occurs when donating blood. Hepatitis C patients cannot donate blood for common use, but their blood can still be removed, although it must be discarded.
Serum ferritin is a measure of the amount of stored iron and is used to guide therapy. A serum ferritin value between 30 and 80 ng/dL is optimal. Many hepatitis C patients have serum ferritin values in excess of 300 ng/dL.
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).
I don't think Mike's are too high yet, but high iron is a no no!
Trinity
You cant seem to accept that you are normal can you.
Nornal Iron is not 50 it is 50-300. Your high normal thats all.
Normal Normal Normal OK
Iron at 50 or so could actually be bad on Tx as you need iron to make Red Blood Cells that the Riba kills off. You dont want to run out.
I am in the Southern Hemiphere and i dont have to bribe anyone.
CS
Nornal Iron is not 50 it is 50-300. Your high normal thats all.
Normal Normal Normal OK
Iron at 50 or so could actually be bad on Tx as you need iron to make Red Blood Cells that the Riba kills off. You dont want to run out.
I am in the Southern Hemiphere and i dont have to bribe anyone.
CS
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