Better sit down. That is my DH’s ferritin count: 3,000 nanograms per millileter. Normal is 30-400 ng/mL. Yeah. We are in hemochromatosis shock over here. My iron man is actually laying down.
His TIBC (total iron-binding capacity) is 96%. Normal is 40. His body works overtime keepin’ that iron.
About 10 years ago, in Key West, Hal went to give blood, as he often does. Er, did. He is O+ which is pretty valuable blood. O- donors are the universal donors. Anyone can take O- blood, whether you are positive or negative. O+, while not universal, can still be given to anyone with + blood. That makes O+ the second-most valuable blood.
One day, out of the blue, they wouldn’t take his blood anymore because his iron was too high. Well, huh. He did some investigating and discovered he had hemochromatosis: his body holds onto its iron. Normal humans like you and me, we pass excess iron. Not Hal. His body hoards it until it kills him. Nice.
The only “cure” is blood letting. To do it often enough (once a week till you have a normal count, then at least once or twice a month for life) one needs a prescription. Blood banks will only take your blood once every six to eight weeks. Which is ridiculous: blood letting is good for you. Go give blood and see how great you feel. Seriously.
For the last month or so, Hal’s joints have been bothering him, his skin is a little tan looking and he hasn’t given blood in almost a year because of all the stress we’ve been under. He finally went to a lab here in KY and got a full iron panel. He took that to a walk-in clinic, explained that he’s been diagnosed in the states and in Costa Rica with hemochromatosis, was not interested in a long, involved, expensive test-taking process and could he please have a prescription for blood-letting?
Neither of us expected he would get a prescription first trip, but he did. Hallelujah, there is a little justice in the world! He went straight away to give blood (free at the blood center, by the way). That was last week. The blood center sent that first pint off for more analysis. This week, when he gave blood, he found out his count was 3,000 ng/mL. Whoa.
Hemochromatosis has been part of our lives for many years now and lemme tell ya, we are suddenly taking it real serious-like. No more messing around with this baby. (Uncle Brian, are you listening?)
Every time Hal gives blood, his count should go down by 30 ng/mL. Talk about poco a poco. But, in two years, giving blood every week, he’ll have normal ferritin levels. Hey, we’ll take it.
From everything we’ve read, what you eat has something to do with your body storing iron, but is not nearly the main thing. You can give up every single food containing iron and still enjoy high ferritin. It must be either bled out of your body for the rest of your life or build up in tissues and organs. Once you are in normal range and letting regularly, you can eat whatever you want. For the moment, Hal avoids red meat, gave up wine and raw shellfish, we don’t cook with cast iron.
The really exciting hemochromatosis news is offered by this article. Some very interesting ideas, case studies and results that would seem to encourage more study. Um, more studies would certainly be in the offing were there any money in the disease. Which there isn’t.
Walter Last, the author and a scientist, suggests, among other protocols, 300mg elemental calcium and green and black teas with meals to inhibit iron absorption. He has a list of recommended supplement, including 500mg Vit C (traditionally a no-no for hemo sufferers) spaced throughout the day. All ideas worthy of testing!
Except for the IV chelation. I’m a follower of Dr. Andrew Cutler’s chelation protocol and, though I know people who have done the IV and lived, I would not go that route.
Way further down in the article, Mr. Last talks about a patient who significantly impacted his ferritin levels and recalled his liver to life with massive doses of Vitamin C. The patient had been given five weeks to live, so while this case study does not make history, it’s a pretty dramatic representation of the power of either positive thinking or Vitamin C.
Mr. Last believes hemochromatosis may not be caused by an inherited gene, the conventional belief, simply because not everyone with the gene gets the disease. Rather, considering his case study, it might be caused by a “tissue deficiency of antioxidants.” Fascinating.
Being a die-hard Linus Pauling fan, I love this theory. So much so that little miss I’m-my-own-doctor-since-it’s-worked-so-well-for-me and her dear husband are going with tissue deficiency of antioxidants. Bring on the Vitamin C and fermented cod liver/butter oil!
Do you have information or ideas about quelling the hemochromatosis beast? If so, please share — we’re all ears!!! Muchas gracias!