Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
Every one with Brain Fog from Hemochromatosis (HC), let's help each other out. Because I'm my own Health Advocate I've discovered something I haven't heard about from others; I've also read that the issue of Free Radical Iron damage (Poisoning, really) isn't discussed enough with HC. I'm CONVINCED that's what causes the brain fog issues. Please let me explain, and then let's share test results and experiences.
The Transferrin Saturation test is usually used as a diagnostic tool for HC, and then afterwards IGNORED. Oh but it shouldn't be! Iron is an absolute Free Radical Poison in your bloodstream if not properly BOUND. Transferrin is the binding agent in our bloodstreams which carries iron SAFELY to where it's needed (to build hemoglobin, etc).
If your "Transferrin Saturation" (TS) test shows 70%, what that means is, 70% of your available Transferrin is being USED at that moment, is presently BOUND to iron in your bloodstream. Now that 70% is much higher than the general population... Most people would only get that high of a count if they just ate a nice juicy steak. But YOU have that fasting. NOW THINK... You eat a juicy steak and all of a sudden--there's not ENOUGH transferrin left in your bloodstream to properly bind it. If you were to take a TS test right then--it would probably come in flagged in ALERT status. (I had the lab actually CALL me one time!) Even above 80% means loose binds are falling... But if you get up to 100%, that means you definitely have at least SOME iron going free radical through your blood stream. How much is unknown--because they can't measure above 100%! Maybe LOTS of free radical iron... a POISON that's destroying cells randomly wherever it goes--Including brain cells. Incidentally, this is why Doctors can't prescribe TOO MUCH iron to anemic patients. You'd think the more the better, right? NO because it can't be safely transported in the blood. If you have a anemic friend who takes iron pills--warn them! Two pills is NOT better than one! Even an iron deficient person can't safely take too much iron.
Ok but you & I already have too much iron (and often low transferrin counts as well--just the transferrin itself (not the saturation, which for us is high). Doctors worry about the iron build up in our organs--which is what's been STUDIED and proven and that's great that they try to get it down by giving us phlebotomies. But they have no idea the TS issue is causing us brain damage because it HASN'T been studied, researched and proven yet. But we ALL KNOW we have brain fog!
So for me personally (I don't know how many others this is true for), I have the additional complication that after I give blood (ESPECIALLY if it's taken too fast, like at the Red Cross)... My body OVERREACTS to the blood loss. It's as if my body says, "Wow! Blood loss! Let's take iron out of storage and rebuild this blood NOW!!" Problem is it takes TOO MUCH iron out of storage--And all of a sudden I'm in a TS ALERT status! (Sometimes 100%, documented by blood test). No Doctor tests your blood AFTER a phlebotomy--they test BEFORE and that's why no one knows this is happening. Besides which they usually don't bother with TS test anyway. But I buy my own cheap blood tests online which is HOW I discovered this. I'm convinced that's (one reason at least) why some people feel bad after phlebotomies, and have weird bad symptoms. AND why often their arthritis and some other symptoms of HC IMPROVE by the end of their series of phlebotomies--but brain fog DOESN'T.
By the way, Vitamin C may do the SAME thing! It not ONLY causes you to absorb more iron from your food--but ALSO somehow effects RELEASE of iron stores--probably elevating TS. I tested this only once so far. Took 1000 mg Vitamin C on an empty stomach during the night; TS test in the morning. Where normally my fasting TS is 63%, that morning it was over 80%. Interesting. So I'm planning to do more "self-testing" soon... A prepaid Transferrin Saturation test is only about $30 at online blood testing sites; just start ordering tests yourself and be your own health advocate. Please share your results and let's help each other! The doctors only pay attention to the stored iron.
Other things we can test...
OK, let's say you're like me and take too much iron out of storage after a phlebotomy. Would taking IP6 or Lactoferrin help BIND IT while you're in this dangerous state? Or how about you want to eat a juicy steak--would taking an IP6 with it prevent an elevated TS level? I would think YES--but the one and only time I tested it (different circumstance), it seemed to have the OPPOSITE effect! Of course drinking tannins or taking calcium along with iron will prevent some of it from being absorbed too. Let's start testing these things! Buy TS test online and share your condition ("just ate steak--tested TS level 2 hours afterwards") and share your results.
Or just share WHATEVER you've found has helped your brain symptoms! The brain can heal itself, so I've heard it's good to take things like fish oil, coconut oil... Final word of caution; I am NOT a Doctor so I would never advise against whatever your Doctor advises. But I can't think of anything I've suggested here that my Doctor would tell me NOT to do. They might think you're wasting your time and money--but they're not the ones with their brains on freeze frame; some of our research may pay off!
The Transferrin Saturation test is usually used as a diagnostic tool for HC, and then afterwards IGNORED. Oh but it shouldn't be! Iron is an absolute Free Radical Poison in your bloodstream if not properly BOUND. Transferrin is the binding agent in our bloodstreams which carries iron SAFELY to where it's needed (to build hemoglobin, etc).
If your "Transferrin Saturation" (TS) test shows 70%, what that means is, 70% of your available Transferrin is being USED at that moment, is presently BOUND to iron in your bloodstream. Now that 70% is much higher than the general population... Most people would only get that high of a count if they just ate a nice juicy steak. But YOU have that fasting. NOW THINK... You eat a juicy steak and all of a sudden--there's not ENOUGH transferrin left in your bloodstream to properly bind it. If you were to take a TS test right then--it would probably come in flagged in ALERT status. (I had the lab actually CALL me one time!) Even above 80% means loose binds are falling... But if you get up to 100%, that means you definitely have at least SOME iron going free radical through your blood stream. How much is unknown--because they can't measure above 100%! Maybe LOTS of free radical iron... a POISON that's destroying cells randomly wherever it goes--Including brain cells. Incidentally, this is why Doctors can't prescribe TOO MUCH iron to anemic patients. You'd think the more the better, right? NO because it can't be safely transported in the blood. If you have a anemic friend who takes iron pills--warn them! Two pills is NOT better than one! Even an iron deficient person can't safely take too much iron.
Ok but you & I already have too much iron (and often low transferrin counts as well--just the transferrin itself (not the saturation, which for us is high). Doctors worry about the iron build up in our organs--which is what's been STUDIED and proven and that's great that they try to get it down by giving us phlebotomies. But they have no idea the TS issue is causing us brain damage because it HASN'T been studied, researched and proven yet. But we ALL KNOW we have brain fog!
So for me personally (I don't know how many others this is true for), I have the additional complication that after I give blood (ESPECIALLY if it's taken too fast, like at the Red Cross)... My body OVERREACTS to the blood loss. It's as if my body says, "Wow! Blood loss! Let's take iron out of storage and rebuild this blood NOW!!" Problem is it takes TOO MUCH iron out of storage--And all of a sudden I'm in a TS ALERT status! (Sometimes 100%, documented by blood test). No Doctor tests your blood AFTER a phlebotomy--they test BEFORE and that's why no one knows this is happening. Besides which they usually don't bother with TS test anyway. But I buy my own cheap blood tests online which is HOW I discovered this. I'm convinced that's (one reason at least) why some people feel bad after phlebotomies, and have weird bad symptoms. AND why often their arthritis and some other symptoms of HC IMPROVE by the end of their series of phlebotomies--but brain fog DOESN'T.
By the way, Vitamin C may do the SAME thing! It not ONLY causes you to absorb more iron from your food--but ALSO somehow effects RELEASE of iron stores--probably elevating TS. I tested this only once so far. Took 1000 mg Vitamin C on an empty stomach during the night; TS test in the morning. Where normally my fasting TS is 63%, that morning it was over 80%. Interesting. So I'm planning to do more "self-testing" soon... A prepaid Transferrin Saturation test is only about $30 at online blood testing sites; just start ordering tests yourself and be your own health advocate. Please share your results and let's help each other! The doctors only pay attention to the stored iron.
Other things we can test...
OK, let's say you're like me and take too much iron out of storage after a phlebotomy. Would taking IP6 or Lactoferrin help BIND IT while you're in this dangerous state? Or how about you want to eat a juicy steak--would taking an IP6 with it prevent an elevated TS level? I would think YES--but the one and only time I tested it (different circumstance), it seemed to have the OPPOSITE effect! Of course drinking tannins or taking calcium along with iron will prevent some of it from being absorbed too. Let's start testing these things! Buy TS test online and share your condition ("just ate steak--tested TS level 2 hours afterwards") and share your results.
Or just share WHATEVER you've found has helped your brain symptoms! The brain can heal itself, so I've heard it's good to take things like fish oil, coconut oil... Final word of caution; I am NOT a Doctor so I would never advise against whatever your Doctor advises. But I can't think of anything I've suggested here that my Doctor would tell me NOT to do. They might think you're wasting your time and money--but they're not the ones with their brains on freeze frame; some of our research may pay off!
Did you ever come to any conclusions from your study regarding TS and the damage it can cause. I'm looking into taking IP6 or something similar to pull my TS down, as it is high all the time and I get brain fog.
Thanks, Peter
My TS% is tested every time I go for labs for HH. I very rarely look at the Serum Ferritin level because it's usually good. Anytime my TS% is over 40%, I get phlebbed. Fortunately for me my doctor concurs using the TS% as a phlebotomy indicator.
This past year I have been having allergy issues which causes overwhelming fatigue and brain fog in me. When the TS% is below 40% and the TSH (Thyroid) is good, if I have brain fog and/or fatigue, I take an allergy med for a few days and that usually does the trick.
i'm afraid i didn't have the results i'd hoped from from ip6. Matter of fact, i took on empty stomach before bed and then again upon rising an hour before blood test. it HIKED my Fasting Transferrin Saturation Count!!! Totally the opposite of what it should have done!! maybe i'll try testing again sometime to double confirm.
That was very disappointing and Lactoferrin didn't seem to help either :-( (although i think it might have helped a bit when taken with a meal).
So my only solutions so far seem to be to try to keep low iron diet, and to keep my numbers low thru phlebotomies. Like Stephen, i find that when numbers climb so does BRAIN FOG. My "magic number" seems to be between 40 & 50 Ferritiin. When below 40, my FASTING Transferrin Saturation finally drops! And so does my brain fog :-)))) My explanation for this (just edu-guessing) is that when the ferritin is that low, the body tries to conserve it and doesn't release the stored iron into your bloodstream as readily. This really does help to keep Ferritin below 40 for me.
Best Wishes!!