Posted , 4 users are following.
Hey guys, I’m glad there is a forum to ask these questions since my doctors aren’t always there!
I was diagnosed a couple of months ago, and was given 4 phlebotomy sessions to do in the last month. My ferritin had previously climbed from 450 to 560 to 630. Then after the 4 phlebotomies I am at 132??? I am wondering if anyone else has experienced spikes or drops like this? Thanks
1 like, 3 replies
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Guest Benjamin5280
Posted
i also had a rather rapid drop in ferretin level after just a few phlebotomies. I am heterozygous however. I attribute the rapid decline to the fact that the high ferritin level was caused by liver toxicity caused by supplements, in my case niacin, which I had been taking for several years for elevated cholesterol. You didn’t say, but are you homozygous and are you taking meds or supplements that might cause liver toxicity?
Benjamin5280 Guest
Posted
Thanks Mark,
I'm not 100% sure if I'm homozygous (a big word for me!), but I think my test showed a "matching pair" or something? And I know it said that there is a 100% chance that my kids will have hemochromatosis. So I believe I am homozygous. I am currently taking enzymes, omegas, vitamin d, and only asthma meds (inhaler)... nothing that should affect my liver negatively. I actually took milk thistle earlier this year for a bit to heal my liver as my liver counts were high, but everything I take now is to supplement my anti-inflammatory diet. My doc said I do have a tiny bit of liver damage but I figured that was from past alcohol consumption and ferritin over time.
I suffer from atypical migraines, and I want to find out if they are caused by inflammation that is fueled by high ferritin. My ferritin was 400 a few months ago, and before I had a phlebotomy it slowly climbed over 600. I didn't change anything in my diet or supplements, just donated some blood... anyways, thanks for your input!
bruce97898 Benjamin5280
Posted
My ferritin will not follow a linear reduction. I started very high at 4,000, now at 273. During my two years, I saw it climb and sometimes drop quite drastically. Interestingly, the bigger drops in ferritin levels seemed to follow a rise, which is what happened to you.
Ferritin is not the same as iron, so what the body is doing with it in response to the phlebotomies is a wild card. It probably throws your whole regulation out of whack a little bit. One other thing I haven't been able to find out is if ferritin has a life cycle like other cells where it just breaks down after so much time and is discarded as waste, which would make sense to me why if we produced a lot in one week, it would all go away at the same time later on. Since ferritin is a protein, that is a something I speculate on. I try to read some of the medical literature on that, but I can't find anything at least in simple enough language a non-clinician can understand that speaks to that.