Merlyn wrote: I think one of my remaining puzzles is whether ferritin is really a good indication of total iron storage in the body. There seems to be conflicting information. In other words, since my ferritin is only 66, actually 37 after one phlebotomy, how do I convince a doctor to try to take it down to 10... if I understand Steve Barfield correctly, you should keep drawing blood until ferritin goes down to 10, because in that process, the body will start pulling the iron out of organs... wouldn't most doctors think that if you get the ferritin down to 25, you should leave it, and not keep drawing blood? Any thoughts on this?
I'm not sure, but I believe ferritin is a gauge of how much iron is in the liver. With hemochromatosis doctors seem to be fixated on the liver, but as you'll know from reading the HH forums, many other parts of the body can be effected. My liver tests always seemed to be good and never showed up anything at all. My brother has a really bad liver, so maybe the liver is more of a male problem?
I know that I won't be letting them take too much blood at once, because of the heart arythmias, trembles or whatever they were. I'm still getting them at times, but they are not painful like in Jan/Feb. I'm sleeping 7 hours through the night now, it's so nice to get a straight sleep, and my energy is good. I have developed pain in my lower spine and elbows area that does not respond to pain killers, which I think is a Porph thing. It comes and goes. If I take a nap it usually goes away.
I've got quite a learning curve to go through now, but I believe so long as I stay away from my triggers, Iron, hormones, alcohol and drugs I should come out of this attack. I'm on my son's old diet (Failsafe), because I need to get a handle on what my triggers are in the food department and I need to eat regularly every 2-3 hours, high carb, and high sugar if I start to feel weird.
I'm not a bad cook, so it's back to preparing everything from scratch so I know exactly what's in it, and testing additives one at a time. Been there, done that, just not for myself. Payback time, my son reckons