Here are a variety of old posts and notes from my Facebook wall.
To C or not to C
This is primarily for me, my blood relatives and others with Hemochromatosis, however some studies suggest everyone avoiding vitamin C because it can damage DNA. Well, okay ... one study does. First point is that this relates to the pills only, not dietary sources. In pill form, vitamin C can alter iron stores by kicking out an oxygen molecule which makes them nasty free radicals and potentially nastier if they can hook up with some hydrogen peroxide. Then they attack whatever is closest. Iron is typically stored in the heart or liver predominately, so in theory, someone with significant iron overload could cause themselves to have a heart attack by taking vitamin C suppliments. For ordinary folks, there is just not enough research to sway one from taking vitamin C pills. There are many more good effects including the repair of DNA, so it could be that C damages, then repairs leaving one no worse off and maybe a bit better off.
But for my family who at least have a single gene causing a 50% increase in iron absorpsion or 300% for those of us with both genes, there is more to consider. First, we will definitely have more iron stored that can be affected by vitamin C pills. Second, vitamin C in pill OR dietary form will further increase iron absorpsion. Then on the other side, excess iron causes damage to the body that vitamin C can repair and at the same time excess iron decreases vitamin C absorpsion. The CDC says that folks with hemochromatosis should limit vitamin C suppliments to less that 500 mg/day. Agressive experts say to eliminate it entirely. The CDC also says that 2 alcholic drinks a day for a male with hemochromatosis is fine too (...until liver damage is noticed). That seems pretty dumb, so is their vitamin C suggestion just as dumb but not as obvious?
My multi has 400 mg of C and I will hold it at that, but maximizing natural sources seems like the best bet. They do not increase free radicals (like vitamin C pills do) and will work against the free radicals the iron stores are already creating. I will count on my blood donations to keep pulling down the iron rather than go low on a key antioxidant. This is a far more complicated topic than I would have imagined and started with my doctor recommending that I increase vitamin A,C and E suppliments to fight the free radicals that high iron creates. I knew of the studies on C, but could not remember all of this well enough to discuss with him, so that will have to wait until the next conversation.
references:
http://www.victorherbert.com/Lancaster99.htm
http://www.cdc.gov/ncbddd/hemochromatosis/healthy-living.html
http://www.ceri.com/q_v6n6q6.htm
Quick bits on Hemochromatosis
I thought I would jot down what I researched a few weeks back.
Well, I am still on a Hemochromatosis rant. Shocker. So yesterday I commented about how all my cousins should get tested. But why and what does this mean. I know what doctors used to be taught and are taught now about me, but this will continue to change. Bottom line is that folks who have variances (SNPs) on their HFE gene do not process iron correctly. This is the beginning stages of personalized medicine and will continue to get better. I have seen genetic tests which state negative or positive for genetic hemochromatosis based on two criteria, c282y homozygous or c282y/h63d compound heterozygous. The reason why everyone is not given the test is because 50% of those who are positive for these HFE SNPs do not complain of symptoms. The reality here is that the genetic test remains insufficient. There is much more happening on that HFE gene than medicine has figured out. So the 50% issue is due to their lack of knowledge and will at some point get to where they have it actually figured out. At that point all of us may benefit from having a genetic test to teach us how to feel better. In the mean time if you are related to me please watch your iron even if you have had a negative genetic test. The effects of HFE SNPs on daily life can be truly devastating and remain hard to diagnose. Even with my iron levels extremely well controlled it still affects my life every day and I am extremely lucky that I understand it as well as I do. Iron levels are not tested much by doctors because insurance and medicare have decided that it is not needed, but it is very easy to go have the test done yourself and costs about $5. Just make sure you look at transferrin saturation and serum ferritin. Year to year rising levels of serum ferritin should be concerning even if they are not elevated to the point of diagnosing iron overload.
A must read article!
One of best I have read on the story of our people.
23 and Me HH and Genealogy testing
Interesting that two recent studies showing that outside of Northern Europeans, iron overload with the H63D SNP is significant. This one is India and the prior was Greece. Much to learn yet on the HFE gene, but what is becoming clear is that making assumptions about who is affected and how is not wise. I also just learned that Genetic Hemochromatosis is considered common in Brazil.http://webcache.googleusercontent.com/search?q=cache%3A3JjdtLqtQ_cJ%3Acibtech.org%2FJ%2520Biotechnology%2FPUBLICATIONS%2F2012%2FVol-1-No-2-3%2F05-005...Mistry...Mutational...Gujrat.pdf+&cd=1&hl=en&ct=clnk&gl=us&client=ubuntu
To C or not to C
This is primarily for me, my blood relatives and others with Hemochromatosis, however some studies suggest everyone avoiding vitamin C because it can damage DNA. Well, okay ... one study does. First point is that this relates to the pills only, not dietary sources. In pill form, vitamin C can alter iron stores by kicking out an oxygen molecule which makes them nasty free radicals and potentially nastier if they can hook up with some hydrogen peroxide. Then they attack whatever is closest. Iron is typically stored in the heart or liver predominately, so in theory, someone with significant iron overload could cause themselves to have a heart attack by taking vitamin C suppliments. For ordinary folks, there is just not enough research to sway one from taking vitamin C pills. There are many more good effects including the repair of DNA, so it could be that C damages, then repairs leaving one no worse off and maybe a bit better off.
But for my family who at least have a single gene causing a 50% increase in iron absorpsion or 300% for those of us with both genes, there is more to consider. First, we will definitely have more iron stored that can be affected by vitamin C pills. Second, vitamin C in pill OR dietary form will further increase iron absorpsion. Then on the other side, excess iron causes damage to the body that vitamin C can repair and at the same time excess iron decreases vitamin C absorpsion. The CDC says that folks with hemochromatosis should limit vitamin C suppliments to less that 500 mg/day. Agressive experts say to eliminate it entirely. The CDC also says that 2 alcholic drinks a day for a male with hemochromatosis is fine too (...until liver damage is noticed). That seems pretty dumb, so is their vitamin C suggestion just as dumb but not as obvious?
My multi has 400 mg of C and I will hold it at that, but maximizing natural sources seems like the best bet. They do not increase free radicals (like vitamin C pills do) and will work against the free radicals the iron stores are already creating. I will count on my blood donations to keep pulling down the iron rather than go low on a key antioxidant. This is a far more complicated topic than I would have imagined and started with my doctor recommending that I increase vitamin A,C and E suppliments to fight the free radicals that high iron creates. I knew of the studies on C, but could not remember all of this well enough to discuss with him, so that will have to wait until the next conversation.
references:
http://www.victorherbert.com/Lancaster99.htm
http://www.cdc.gov/ncbddd/hemochromatosis/healthy-living.html
http://www.ceri.com/q_v6n6q6.htm
Quick bits on Hemochromatosis
I thought I would jot down what I researched a few weeks back.
- A couple thousand years ago a Celtic lass was born with a mutated gene in the Western Danube Valley.
- Just having the one gene still increased her iron to a degree.
- At some point 2 of her offspring had a kid who was a full mutation (two genes). This is what I have.
- Full mutation alters the immune system to a degree, for instance improving resistance against the bubonic plague, but weakened against Listeria.
- The full mutation also made it harder to starve to death. I wonder if the mood swings also contribute to the famed berserkers in Celtic and Viking history.
- Vikings took a liking to Celtic lasses and sailed them and this mutation all over the coast of Europe.
- Any illness that impacts the spleen (diabetes), liver (cirosis, mood swings, anger), the heart, arthritis (especially in the first two fingers) or skin (tan all the time and all over) combined with a Celtic or Viking lineage is sufficient cause to be tested for transferritin levels.
- Doctors will not catch this typically. They view it as rare despite it being the most common genetic issue in the world and so easy to solve. My wife was smart enough as an RN to know what my lab tests meant and taught the doctor how to diagnos me. Gotta love nurses!
- All you really need to do is drop into the local blood bank every 8-12 weeks as long as you are young and related to me. No problems would likely ever affect you and your blood is safe to use and will help up to three people with every donation.
- If you are not young, then get tested. If you are a full mutant like me, then you donate blood weekly under a doctors order and get your levels normal. Then just keep giving blood every 8 - 12 weeks.
- Finally, if you get cancer and are related to me you must get tested. Cancer accelerates in a high iron environment.
- Since I am a full mutant, all of my aunts and uncles, Greenfield or Watts, were at least carriers. There is nothing wrong with having this. It is just part of our hardy Northern European heritage.
- What you eat will not make a huge difference to your iron levels as long as you donate blood. Be more worried about Listeria than spinach.
Well, I am still on a Hemochromatosis rant. Shocker. So yesterday I commented about how all my cousins should get tested. But why and what does this mean. I know what doctors used to be taught and are taught now about me, but this will continue to change. Bottom line is that folks who have variances (SNPs) on their HFE gene do not process iron correctly. This is the beginning stages of personalized medicine and will continue to get better. I have seen genetic tests which state negative or positive for genetic hemochromatosis based on two criteria, c282y homozygous or c282y/h63d compound heterozygous. The reason why everyone is not given the test is because 50% of those who are positive for these HFE SNPs do not complain of symptoms. The reality here is that the genetic test remains insufficient. There is much more happening on that HFE gene than medicine has figured out. So the 50% issue is due to their lack of knowledge and will at some point get to where they have it actually figured out. At that point all of us may benefit from having a genetic test to teach us how to feel better. In the mean time if you are related to me please watch your iron even if you have had a negative genetic test. The effects of HFE SNPs on daily life can be truly devastating and remain hard to diagnose. Even with my iron levels extremely well controlled it still affects my life every day and I am extremely lucky that I understand it as well as I do. Iron levels are not tested much by doctors because insurance and medicare have decided that it is not needed, but it is very easy to go have the test done yourself and costs about $5. Just make sure you look at transferrin saturation and serum ferritin. Year to year rising levels of serum ferritin should be concerning even if they are not elevated to the point of diagnosing iron overload.
A must read article!
One of best I have read on the story of our people.
23 and Me HH and Genealogy testing
Interesting that two recent studies showing that outside of Northern Europeans, iron overload with the H63D SNP is significant. This one is India and the prior was Greece. Much to learn yet on the HFE gene, but what is becoming clear is that making assumptions about who is affected and how is not wise. I also just learned that Genetic Hemochromatosis is considered common in Brazil.http://webcache.googleusercontent.com/search?q=cache%3A3JjdtLqtQ_cJ%3Acibtech.org%2FJ%2520Biotechnology%2FPUBLICATIONS%2F2012%2FVol-1-No-2-3%2F05-005...Mistry...Mutational...Gujrat.pdf+&cd=1&hl=en&ct=clnk&gl=us&client=ubuntu