Hemochromatosis Support Group

There really is no "norm" for bloodletting. Everybody is different. I think everybody gets too caught up in all the terminology...and drives themselves bonkers trying to sort it all out. After being diagnosed, the only thing to be concerned about (the only thing you have any control over) is keeping those ferritin levels down. Most of the (often confusing) terminology relates to arriving at a proper diagnosis. - Hematocrit is about red blood cells & is an indicator that you are 'okay' to donate. - But it is your ferritin level that dictates the overall frequency of treatment.
Personally, it took me a long time to get that ferritin down. When diagnosed I was sitting at about 1,600. Weekly phlebs for six months got it down to 600 and change. Then went bi-weekly for another six months & got it down under 300. Three years later, i now go in about every 8 weeks & the ferritin is usually around 50 prior to (that same day's) phlebotomy. - I'm content with that.

I was diagnosed at 2400+ and did weekly phlebs for twelve months, my crit stayed around 31, and I was able to phleb every week. I now go every three weeks and my crit is around 39. I like to keep my ferritin around twenty but throughout the year it will steadily rise and in Dec I will go weekly again just to get it down to 20, which is when I feel the best. We are all very different so you will need to learn to listen to your own body and figure out what is best for you. You are your own best advacate. Some here have to force feed there DR. information about HH, but we do what we have to.

My doctor told me that my Hematicrit should be above 33 (mine is mid 40s)... Giving blood makes me very tired and my heart goes crazy from the shock. I'm on a every 2 weeks with saline replacement with every pheb.

Good luck to you!

Hi, I recently found out I have hemochromatosis.I'm a 32 year old woman and I was tested because my twin brother has it, and is blood letting all the time. My doctor told me that I didn't have to do that because I menstruate. Is this true? I don't trust that doctors know all that much, especially about rare disorders. Is there a certain chart or levels from a blood test that determine whether you need to blood let?

Thank you. I appreciate the advice. :)

HollywoodGal - I'm sorry about your incompetent doctor. How could he/she be so irresponsible as to suggest something so ludicrous without even a simple blood test? You will be better off getting a new doctor and reporting him/her to the AMA! You can learn more about Hemochromotosis by downloading a pdf from the CDC. It's a little technical but very informative... BTW - symptoms of HHC as portrayed by the "symptoms" aren't always what people experience. In fact I had a huge number of symptoms that I've only been able to find others experiencing on here. Good luck to you!

Hollywood, We cannot really help you answer that without knowing what your ferritin is. If you do not know what it is get it tested and do not let your Dr tell you no. I was diagnosed at 38 and i had to phleb weekly for a year. If you can catch it early then it will spare you from that. Gidget

Hi all,

I have a question for anyone out there. I've been reading a lot of the posts in regards to people getting their blood work done while they're getting their phleb, I don't understand that. I have to fast for 12 hours for my blood work then go eat and go back a few hours later for my phleb. I can't see doing a phleb when your body hasn't taken in any food for 12 hours, it contradicts what a lot of people are saying about eating a good meal a few hours before a phleb. Have I missed something here? Thanks:-)

I do not have to fast for ferritin and hematocrit test and i have my test done at the end of my phlebs. If you are trying to get diagnosed then it is important to fast but if you already know you have HH and are getting phlebbed regularly why fast< unless you are having other test done also.

Okay I am going in for a phleb today and I will be asking about this......he may be doing other tests but he didn't mention it. Thanks so much gidget, will check in when I get back or tomorrow. Have a great day and week!:-)

Ann

It turns out (after a very long day) that the doctor wants to do a CBC, Ferritin and iron saturation test for the first few phlebs to just see how everything is working together, so that answers that question. I just wanted to clarify that I did go eat after the blood work and went for my phleb about 3 hours later.

This phleb went much faster as it was done properly as opposed to my last visit. It took an hour to fill the bag last time and 10 minutes this time. I was unnerved about the discussion amongst the nurses in regards to the proper protocol as this took one hour before I was even poked. The nurse at this clinic has never done a phleb before, this time there was a good nurse that taught her how to do it properly. I am hoping next time it goes off without a hitch:-)

I have one weird side effect right now from the phleb and had it on the last one....my teeth hurt....does anyone else get this....it feels like my nerves are exposed.