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.
Hey ladies and gents! How is everyone?
Just thought I'd ask. I am still taking biweekly phlebotomies. Haven't had a ferritin test in a while but the last one was around 100. That 3166 seemed so far away until 2 days ago when my joints started hurting again- Oh well such is life. I guess I will hate the winter for the rest of my life. Still get palpatations. Still have the brain fog which is the worst symptom. I swear the guys at work think I'm an idiot now lol.
So where is everyone with treatment? How ya feeling? Do your joints start hurting when it gets cold and rainy? Go ahead and rant!
Just thought I'd ask. I am still taking biweekly phlebotomies. Haven't had a ferritin test in a while but the last one was around 100. That 3166 seemed so far away until 2 days ago when my joints started hurting again- Oh well such is life. I guess I will hate the winter for the rest of my life. Still get palpatations. Still have the brain fog which is the worst symptom. I swear the guys at work think I'm an idiot now lol.
So where is everyone with treatment? How ya feeling? Do your joints start hurting when it gets cold and rainy? Go ahead and rant!
I just called and got my ferritin results which were taken 5 minutes before my last phlebotomy...
19!!!
And then I got a phleb on top of it so that explains the tiredness and shaking and pale skin!
I am going for my 3rd phleb today. The doctor called last Friday on my bloodwork done the day of my second phleb, he said my ferritin was down to 316, the bloodwork which was done before we started treatment came back with a ferritin of 513. So basically my ferritin has dropped substantially by 200 points after just one phleb. Since the doc is only testing me bi-weekly I'm a little concerned to do the 3rd phleb until todays blood work comes back. Is the reduction in ferritin happening too fast? He was still waiting on the saturation tests to return, so I will most likely have them when I go there this morning.
I have quit drinking for 2 months now and wonder if that has anything to do with the rapid fall in numbers, I know my liver AST and ALT are back to normal now....
We have also discussed doing weekly bloodwork because of this, we had originally set it up for biweekly because of the schedule of fasting and then going to eat and then phlebbing...not to mention the long drive. It makes for a very long day in crappy weather. I guess a person's gotta do what a person's gotta do though, so weekly it is.
Any input welcome, thanks so much and have a good day!
Ann