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.
Hello, I'm a 23 male and was diagnosed with Hemochromatosis over two years ago. I started routine blood letting and reduced my ferritin from 700 to 35. I've also have undertaken a number of EDTA Chelation treatments - However I have a problem...
I'm extremely tired all the time. I feel as if I have absolutely no energy, sometimes I can hardly think straight and small problems are huge. I'm not sure what to do. After EDTA i feel better, kinda of like how I used to feel before my iron levels got high and I was diagnosed. I just want to feel normal and I'm really not sure what I have to do.
Would TS levels effect ones mood/ thoughts? my Haemoglobin is normal I think. Trying to keep ferritin below 50. Any other recommendation, because if this is better, there is definitely something wrong!
Thanks in advance.
:)
I'm extremely tired all the time. I feel as if I have absolutely no energy, sometimes I can hardly think straight and small problems are huge. I'm not sure what to do. After EDTA i feel better, kinda of like how I used to feel before my iron levels got high and I was diagnosed. I just want to feel normal and I'm really not sure what I have to do.
Would TS levels effect ones mood/ thoughts? my Haemoglobin is normal I think. Trying to keep ferritin below 50. Any other recommendation, because if this is better, there is definitely something wrong!
Thanks in advance.
:)
http://onlinelibrary.wiley.com/doi/10.1002/hep.24330/pdf
I had plebs every week for 8 months (I started at 1300 ferritin), then EDTA to get lead and cadmium out and I keep my ferritin now between 30 and 50. Changed my diet to exclude all grains, so am totally gluten free. Even "gluten free" stuff drained me. I've been told dairy is also bad news and have cut that back lots. Still some tiredness, but not nearly as bad as I was.
Doctors seldom focus on the Transferring Saturation issue (or the rise in saturation immediately after every phlebotomy.)
iron must be safely transported by transferrin when travelling through blood stream, or its an absolute free radical poison, causing cellular damage everywhere; Extreme fatigue comes with this, plus for me nausea and a general "not well" feeling even though i have no liver or organ damage (originally caught my HCC at 650 Ferritin level).
The free radical episodes also can cause extreme brain fog. There's debate over whether iron crosses the brain barrier, but i've tested myself over & over and whenever my saturation is in alert status (meaning there's free radical iron unbound in my bloodstream) my brain fog is most intense AND my central sleep apnea gets worse (central apnea is the rare type where the brain stops telling your lungs to breathe during REM sleep especially).
Also after all the phlebotomies, you've put yourself through MANY free radical episodes which take time to recover from. (see my explanation in my long post mentioned opening sentence. Since time of that posting, my hematologist confirmed that happens to everyone!! (The body "over-reacting" to phlebotomies by taking TOO much blood out of storage and sending your body into a TS episode).
Once your ferritin is truly low (for me, that means below 40-50), my fasting saturation finally drops--and as Stephen has also observed, my brain fog significantly clears (and my central apnea tends to get better). This must be because the body is trying to conserve the little iron thats left in storage and doesn't release it into your blood stream as readily. it truly should be maintained LOW for best brain and body health. Though few hemotologists are sensitive to this issue, there are those who wlll maintain below 50.
Well you've accomplished this, so the only thing that comes to mind about your situation is that a high iron meal will STILL send you into a TS episode.
Stored iron is NOT the only issue!
And Vitamin C not only causes more iron to be absorbed from food, it also releases iron from storage (So large amounts of Vit C also can send you into T Saturation Episodes, and MSM also can by releasing iron from storage). These issues are very important and might explain some of your symptoms!! i know nothing about the chelation treatments and if there can be any side effects from those.
Best Wishes!!