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475555 tn?1469304339

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
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475555 tn?1469304339
Hi, Willy. Thanks for the advice on iron overload prevention. I am looking into all your suggestions.

Sorry I didn't reply sooner, but I am not receiving email notifications of thread posts or personal messages. I've contacted the Medhelp people, but they haven't been any help. So I never know any more when there are posts to the threads I'm interested in. It's one of the main reasons I've stopped posting to Medhelp.

As to my health, I am still asymptomatic, except for being tired all the time. But the fibrosis is definitely progressing, according to recent tests. Mt eciDopplers aren't great. Portal veing flow is on the borderline of hypertension.

Anyway, thanks again for your help with the iron thing.

Cheers!

Mike
Helpful - 0
Avatar universal
In spite of a recommendation for an herbal type product which someone has now patented....... and labeled "gold"  (meaning it must be really good, eh?)

I first read about IP6 through Dr. Mercola.  I would google that and read whatever he had to say about it, as well as it's role in reducing iron stores/ferratin.  

Americans often want a simple pill they can take to make everything better.

My own approach is to understand diet better.  If you use the board search engines, or HCV boards you might begin to understand it better.  I do a number of things.  I reduce iron intake, I reduce cooking/eating off of cast iron cookware, eschew/reduce red meat consumption.

Did you know that drinking tea with meals decreases iron pickup?  Did you know that drinking orange juice with a meal increases iron pickup?

Look into the issue of hemochromatosis.  People affected by this disease suffer from iron overload.  If you use some of the interventions and management tools those affected also use you may be helped with your iron overload issues.

I was just over range in 2005 and in 2012 I am within range without taking any pills, phlebotomies, etc.

I hope you are well.......

Willy
Helpful - 0
475555 tn?1469304339
Hi, SharonDave. I was interested to see that someone (you) posted to this old thread (I received an email about your post). The subject - iron - isn't old, though. Very current, IMHO.

What is IP6 Gold and where do you get it?

Cheers!

Mike
Helpful - 0
Avatar universal
Get the IP6 Gold by the research doctor who developed it, Dr. Shamsuddin.
It is the best.
Helpful - 0
475555 tn?1469304339
Thanks for the link, Trish.

Yes, it's hard to know how much to trust these nutrient pushers like Life Extension. They're selling products. I take everything they say with a grain of salt.

For example, they say that liver inflammation is caused by oxidative dammage and is the cause of fibrosis, but my hepatologist (and other things I've read) says that inflammation of the liver is caused by the immune system reaction to the virus, and that if there were no inflammation that would be worse.

Another example: Someone posted a research article on lactoferrin that says it causes increased serum ferretin, whereas Life Extension claims it lowers serum ferretin.

I've noticed that sites like Life Extension often quote other sites and articles without crediting them, pretending what they are saying is their own work. That's not only immoral and illicit, it's dangerous, because misinformation can get passed around that way and end up sounding like a consensus of opinion.

But where are we to get trustworthy info when the medical community is adverse to discussing alternative therapies?

It's a bad situation.

Mike
Helpful - 0
Avatar universal
Well...doing something for money isn't a bad thing.  Whole economies and our own employment depends on people doing something for money rather than the pure altruism of it.  People in the health business have perhaps chosen an education in that and may also have an entrepreneurial spirit or want to work for themselves and no harm in building a business that earns you a living while at the same time meeting the needs of others...whether it's appliances, life insurance or health services.

Now...where the difference is to me are those that TAKE ADVANTAGE of someone's situation, such as health situation to extort money out of them by offering them something that does little other than line their own pockets while directing the recipient further away from the help they are seeking.

So when I see these sites....that they make money doesn't bother me.  It's whether what they're selling is actually all they say it is and can be proven and if they have integrity.  And isn't THAT hard to assess!  

If anyone knows anything at all about this Life Extension group.. I wouldn't mind knowing.

Trish
Helpful - 0
Avatar universal
Are they in it for the money? Yes, you bet they are! But who isn't these days? Do I trust their science? No, but I like a different brand of yogurt too. And, I don't take colloidal silver either. Mike
Helpful - 0
Avatar universal
From:  http://www.lef.org/protocols/infections/hepatitis_c_01.htm

An incredibly comprehensive article dealing with Hep C, what it does to the body, what natural supplements to take to counter those effects and what the risks are for each supplement.  I don't know how this Life Foundation is but I found the article impressive.  So a caveat...I don't know if these guys are on the money..posting the following for people to think for themselves on.

"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."

  "Reducing Iron Stores
Elevated serum iron levels are often found in people with hepatitis C and cause further oxidative damage to the liver. Certain nutritional supplements have shown evidence of reducing serum iron levels. To help keep serum iron levels in the low normal range of 30 to 80 ng/dL, high doses of green tea polyphenols and high-allicin garlic may be beneficial.

Lactoferrin, a subfraction of whey protein, may be especially beneficial as an adjunctive treatment for serum iron overload in hepatitis patients. Lactoferrin is a potent antioxidant, antiviral agent, and scavenger of free iron. In addition, lactoferrin is directly involved in the upregulation of natural killer cell activity, making it a natural modulator of immune function (Yi M et al 1997; Ikeda M et al 1998, 2000). As an immune booster, lactoferrin has been shown to work synergistically with interferon to reduce the viral load (Ishii K et al 2003).

Taking 300 mg of elemental calcium can reduce iron absorption by as much as 50 percent. When eating iron-rich foods, hepatitis C patients should consider taking a high-potency calcium supplement at the same time (Hallberg L et al 1991)."

Helpful - 0
475555 tn?1469304339
Thanks for the info and analisis, hon. I'm gonna have to make an independent decision about reducing iron, as my doc here won't discuss it and probably knows nothing about it :¬[

For the moment, I'm trying to stick to dietary control, but I may have to go the chelator route if this doesn't work. I don't think going into tx with 300 is a good idea. Not from what I've been reading.

It's too bad there isn't more interest in these sorts of topics in the research community. It's so darned hard to get any real up-to-date information.

M.
Helpful - 0
264121 tn?1313029456
Here's a link to an old study (1995) where they did use desferal to reduce iron prior to treatment.  They only reduced to under 250, considering that low enough in serum iron terms, so again, I guess I'd look at the recent studies you find, take them to your hepetologist, and see what he thinks.  My own feeling is that 300 would be ok but you should talk to your doc of course. There is at least one new chelation drug now that is easier on the body (not sure what its called but your doctor would know).  

http://www.blackwell-synergy.com/doi/abs/10.1111/j.1365-2893.1996.tb00003.x

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264121 tn?1313029456
Here's an article I found done in 2004.


BACKGROUND/AIMS: Iron overload is common among patients with chronic hepatitis C (CHC). In this study the role of hepatic iron concentration (HIC) and serum iron parameters was assessed to determine response to standard and pegylated interferon (IFN)/ribavirin combination therapy in patients with CHC. METHODS: Liver biopsies were obtained from 169 IFN-naïve patients (m=115, f=54, age: 40.8+/-10.7) with CHC. 140 patients were treated with standard IFN/ribavirin, 29 patients with pegylated-IFN/ribavirin. Biopsy specimens were evaluated according to the DiBisceglie scoring system and iron grading. HIC was determined by atomic absorption spectroscopy. Ferritin and transferrin saturation and presence of HFE-C282Y and H63D gene mutations were determined at baseline. RESULTS: Nonresponders to combination therapy had higher serum ferritin levels at baseline (p<0.01). There was no difference of HIC, transferrin saturation levels, and the HFE-mutation status between responders and nonresponders. Logistic regression analysis revealed serum ferritin as an independent predictor of response. HIC correlated with the DiBisceglie score (r=0.352, p<0.001), iron grading (r=0.352, p<0.001) and serum ferritin (r=0.335, P<0.001). CONCLUSIONS: Pretreatment liver iron concentration does not predict response to combination therapy in patients with CHC. In contrast, high baseline serum ferritin levels are predictors of poor response to antiviral therapy.

http://www.ncbi.nlm.nih.gov/pubmed/15158344?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=1&log$=relatedarticles&logdbfrom=pubmed
Helpful - 0
29837 tn?1414534648
According to the Hepatologist Dr. Gish, the eating of iron supplying cereals and vegetables is not a big deal. The big deal, is taking iron as a supplement. One-A-Day vitamins makes an adult vitamin with NO iron. My iron has also gone up in the past two blood works.

Interestingly, he said he doesn't look at that as an indicator, but rather the results of the last biopsy (2005) which showed normal iron levels. Oh, and by the way, I believe this is the longest thread since I've been a member her for several years...

Magnum
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264121 tn?1313029456
desferal is, I believe, the oldero chelator that is the most difficult on the body.  Its the one you would want to avoid I think.  I really think though that your body is going to use the iron making blood in the early stages of treatment.  And also, I don't think they can prescribe a chelator until you are over 1000.  I went from over 3000 to 61 just restarting my bone marrow after treatment with no phlebotomy or chelator.  

The ribavirin causes reduced red blood count in virtually everyone.  I would at least talk to your physician about the odds that you will use your stores in the first four weeks of treatment.  I only built up such high levels because I had so many transusions in such a short time during treatment and my treatment was still successful.

Helpful - 0
475555 tn?1469304339
Thanks for all the info, links, and good ideas, Merry. I'm trying hard to control my diet, and have started doing some natural supplements. I'm eating a lot of whole grains and fruit, and drinking green and other teas instead of coffee. Still trying to find sources here in Argentina for ppc and other supplements, especially nartural iron chelators, but so far not much luck. However, I persevere...

Mike
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475555 tn?1469304339
What are those chelation drugs you mentioned?

What I have in mind is using natural chelators until going on tx. But I can't find any info on which ones to take, how much, and when to stop.
Helpful - 0
233616 tn?1312787196
3 answers I forgot...I've switched to golden raisens...that lowers the iron content.
yes to milk in coffee...any calcium with iron will help bind it....like even cheese if you insist on some red meat....ergo philly cheese steak, pastrami with cheese, cheeseburger...even if not a bloody meat, like chicken breast still is heme..and so still think dairy with it will help.

as to oatmeal and PPC....well my cholesterol went from 150 to 123 on oatmeal alone..
the PPC has lowers it a little more....116.....so my guess is the oatmeal has the greater effect, though the ppc has more antifibrotic action..so both are good from that standpoint.
make sure you look for Milk that is not fortified with iron.
mb
Helpful - 0
233616 tn?1312787196
Yes you are right, it does get confusing. A doctor saying no big deal, who has no idea how much your Meld is changing, or why you iron has doubled or if it will go back down...  I mean, sure when I start taking no SOC drugs in 10 more months, my iron will go back down as my HGB goes up...it's the meantime I'm worried about...and since they won't give procrit until you basically can't walk....meanwhile where is the iron going and what damage is done and how fast?

here's something Cocksparrow wrote me privately that I don't think he's mind me sharing.
he knows a lot about it...and this should help you get some more clarification.

>>>>>>>>I Don’t have time to do this justice in the thread.
Basically when you have anemia you get high Iron

This is off another forum. This is pre Tx not during Tx.
Dwight, your serum iron level will probably become elevated after you've
been on tx just a couple of weeks, all those dead red cells will dump
lots of iron into your blood. It probably wouldn't hurt to continue
phlebotomy until your hgb drops below 12 or so.
Elmo

http://community.webtv.net/elmoemerson/DocElmosHepFile

Here are a couple of links
http://www.ncbi.nlm.nih.gov/pubmed/7699235

http://www.indianjnephrol.org/article.asp?issn=0971-4065;year=2007;volume=17;issue=4;spage=188;epage=193;aulast=Prakash

http://www.hcvets.com/data/hcv_liver/iron_and_ribavirin_increased_hep.htm

You will get the idea
Search on Ribavirin Iron you will get quite a few hits.

From the last link. It old but explains what happens quite well
Accumulated iron deposition within the liver might reach excessive levels during prolonged treatment, especially in patients with high preexisting concentrations of hepatic iron.

Now this is why I don’t think it is a big an issue as we think it is. Its high Hepatic Iron that the problem not high serum Iron, You had no liver iron so even if Riba is putting some there it shouldn’t be causing you many probs.
Not much you can do about it anyway.
(author Cocksparrow to MerryBe)

hope this helps. I'm not as nervous as I was following the above answers.
mb
Helpful - 0
264121 tn?1313029456
One other thing.  Just initiating treatment may bring down the level as your body pulls from it to fight the red blood cell loss from the ribavirin.  Something to think about.  

They typically won't use the chelation drugs unless your iron is at least 1000, but at least one of the chelation drugs is very difficult on the body although I understand there is a least one new chelation drug that's a bit easier.  
Helpful - 0
264121 tn?1313029456
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.    
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475555 tn?1469304339
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
Helpful - 0
264121 tn?1313029456
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?
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475555 tn?1469304339
I know what you mean. Seems like every food processor is trying to "help us" by supplementing iron. It's maddening.

M.
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315996 tn?1429054229
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.
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475555 tn?1469304339
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
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