Replied by Bessie (Calgary, Alberta, Canada) on 07/16/2010
Hi Lizeth - I'm sure Ted will be answering your question about your friend's excessive iron in the blood, but - in the meantime - one thing that may help is donating blood. Google Hemochromatosis blood donation and read how it helps with iron overload (plus it assists those in need of a blood transfusion). In case anyone is wondering about safety, the FDA has guidelines established for those with Hemochromatosis who want to donate blood. Best of health!Replied by Ksuter (Henderson, Nevada, Usa) on 11/22/2010
Hi Lizeth from San Bruno, Ca I found on the internet that IP-6 with Inosital helps the body get rid of the stored iron leaving the useful iron alone. I am using it myself but do not know if it is working yet. I bought it in the powder form cause it is expensive in the tablet form. Mine is pharamacuetical grade. Just google the IP6 and uses or therapy for more info. I take it first thing in the morning to give me about an hour before eating and either late afternoon or before bed so that it doesn't take away the circulating iron my body needs. I just hope it is working. Good luck I didn't want to do the blood giving thing.Replied by Catherine (Wellington, New Zealand) on 12/26/2010
I have recently been diagnosed at age 68 with genetic hemochromatosis. I immediately started to research all the information I could find on the internet. Discovering that agressive venesection (having blood taken) is the simplest and quickest way to lower iron stores I arranged, not without difficulty, for weekly sessions. Not all physicians are up to date with iron overload disorder!!! Apparently removal by chelation agents is not as effective as venesection. If the iron overload is not genetic but lifestyle induced (eg metabolic syndrome, heavy drinking etc. ) then lowering iron stores is very rapid with venesection. The genetic type has a much slower rate of reduction.
One thing is certain, chronic fatigue very often presents as a first symptom. Anyone with fatigue should have their SERUM FERRITIN levels checked. The earlier the disease is diagnosed the less likely for major organ damage. Unchecked iron overload reduces life expectancy. Some outcomes are liver cancer, heart disease, stroke, diabetes, arthritis, alzheimers, epilepsy and more. Should you have the genetic strain all relatives should also be checked, including children!! The genetic strain is more common in caucasians particularly of Irish/Scottish descent. Some sensible diet restrictions are indicated, no alcohol or sugar, reduce red meat consumption, no Vit C with food. There are foods that inhibit iron absorption. Info is readily available on the intenet check out [email protected] also of particular note calcium is the only element that completely inhibits iron absorption. Hope this helps someone.. Wish I had known about it before my problems started. Love this wonderful site.
Replied by Catherine (Wellington, New Zealand) on 03/26/2011
Hemochromatosis update: Have been having weekly venesections for 3 months now and have started to get improvements mostly in the last month. A lessening of joint pain plus a loosening of muscles which has allowed me to walk more freely and quickly (instead of the old hobble) I get longer and deeper sleep, now up to 4-5 hrs instead of 2-3 as before. Also I have a more cheerful frame of mind, I used to be irritated easily, now hardly at all. (losing weight too! ) Iron levels have moved down from just under 1000 to 300. (apparently liver damage occurs over 1000) in NZ venesections are stopped when levels get to 50 but overseas evidence suggests a ferritin level of 0-9 is a better outcome.
This is a very common disorder and I believe all people presenting with CHRONIC FATIGUE, ARTHRITIS OR DIABETES2 should have their FERRITIN levels checked, particularly if of Celtic or African ancestry.
Maybe the colour of your blood will give you an indication, mine is still thick and a dark reddish brown.. I'm waiting till it looks more like tomato juice, then I'll know I'm coming right. Even then I will have to have blood drawn periodically to keep levels down. At last I have the solution to why it was no matter what I did or remedies I tried, none were truly effective. Who knew the remedy could be so simple and the complaint so ovewhelmingly overlooked by most physicians, and the general populace so generally ignorant of the disorder at all. Apparently as much as 0.5% of the population are affected... Do the math, the numbers are appalling!!!!!
Replied by Rolo (Palm Desert, California) on 12/24/2011
I would like to know the result of Ksuter from Henderson, Nevada about her use of EP-6 and Inositol to treat her high ferritin in her blood. My wife was just advised that hers was very high and before she start taking Exjade, which is a very dangerous drug, I would like to know the result, if any, of her taking EP-6 and Inositol.Replied by Bess (Calgary, Alberta, Canada) on 12/24/2011
Hi Rolo - Has your wife considered Iron Reduction Therapy? This Web site has some information.
http://www.irondisorders.org/phlebotomy
Good luck! Bess
Replied by Sally_oh (Escazu, San Jose, Costa Rica) on 12/30/2011
My husband has Hemochromatosis and has been giving blood off and on for several years now. In the summer of 2010, he stopped due to some other health issues and an international move. When he started up again March 2011, his ferritin was 3000ng. It had never been that high! He's been giving blood weekly for almost 8 months and his ferritin is down to 300. He also lost just over 15 pounds in the first six months which was unnerving, but the phlebotomist said this is not uncommon.
We looked at IP6 but the information was not conclusive so we never went that route. From what I know about it, I don't think it will work fast enough to be of benefit.
Replied by Hoke (Oakland, Ca) on 02/01/2013
Try eating more cabbage for iron overload. It seems to eork
