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.
I'm in sort of a pickle here. I went for my routine phlebotomy (every 6 months now) and two things happened...
1) My blood was so thick that it was clotting in the tube and it couldn't even make it to the bag.
2) My ferritin has dropped from 23 in May to 13 in November... Without a phlebotomy.
Anyone else, preferably sans those who are menstrating for obvious reasons ;-), had this happen? Any ideas?
I have Inflamatory Bowel Disease. So I'm wondering if this is normal and if not I am wondering if I'm losing blood through my stool...
Thanks.
1) My blood was so thick that it was clotting in the tube and it couldn't even make it to the bag.
2) My ferritin has dropped from 23 in May to 13 in November... Without a phlebotomy.
Anyone else, preferably sans those who are menstrating for obvious reasons ;-), had this happen? Any ideas?
I have Inflamatory Bowel Disease. So I'm wondering if this is normal and if not I am wondering if I'm losing blood through my stool...
Thanks.
Not sure if you've received a reply yet but here's my two cents.
I have labs done on a Monday and based on the results I may or may not get phlebbed. Are you getting phlebbed before the labs? That doesn't make sense.
Since you have HH, your blood is thick. You are at a greater risk for heart attack due to the thick blood. You should be either on daily blood thinners prescribed by a doctor or should be taking supplements that interefere with clotting such as flax seed oil capules, fish oil or red yeast rice. Do not take fish oil, flax seed oil or red yeast rice if you're already on blood thinners.
I used to take flax seed oil but had to stop because it caused a lot of bruising (blood was seeping out of veins into sub layer of skin) on me. I started taking fish oil and red yeast rice daily. About three or four days before I'm to be phlebbed (I start the day I have labs drawn), I drink a lot of fluids (water, juice, Gatorade type drink). Some people take aspirin about an hour before phlebbing. I can't take aspirin any more but the daily fish oil 1200 mgm (2) and red yeast rice 600 mgm (2) seems to do it for me.
Ferritin can drop especially if you have reduce your iron intake and are restricting aborption of iron by taking calcium while eating meat.
Are your stools normal in color or black (tarry)?
JMHO
Diagnosed 1998
In maintenance since 2003
I'll look at my saturation when I get home. I think it was just over normal.
My wife is a nurse and she said that they took my blood samples first, then tried the same vein for phlebotomy twice, which blew it and caused the vein to start clotting.
I hope that's it with the thickness part.
As for the ferritin, I've never dropped without phlebotomy and yea every now and again black and tarry. Might be time to see my gastroenterologist... I may have a bleeding ulcer or something.
Aye yay. This disorder is for the birds.