hey jbelar, I cannot answer your question yet. I have been only diagnosed for about a month, so I don't know about all the tests. But , I was hoping you could tell me how you got your children HH tested? They are beautiful kids and I can tell you are a great Mom. I am having a difficult time getting my pediatrician to understand that testing is important for HH. suzq.

jb, they usually recommend ferritin levels at about 50. i was bled down to 11 and i became anemic, i have since changed docs . i am up to 23 now. only good thing is i get to eat foods with iron in it.. just don't want to get too crazy. i am not a professional, however i would ask your doc if it is wise to go further down. as i found out we can become anemic wich aint no fun neither.
you should be on a maintenance phlebing. or working on a schedule. i am doing that now.. it looks like i don't load real fast so i may get away with donating at the redcross every 120 days.
you do have the right to refuse a phleb.... if need be. i did.
take care now, and remember i am not a doc so check with them first.
dc

Everyone is different, you have to figure out when you feel best. I like to keep mine between 20 and 30. My last test it was 19. I feel great.

Hi JB,

As Gidget says you will figure out at what level you feel best regarding ferritin. I feel best at around 20, but have to keep around 70 as I also have hashimotos which requires a higher ferritin and Sat% to be treated properly. Devil and the deep blue sea...

Having said that, do you know what your haemoglobin levels are? Haemoglobin should be 12-16 (below indicates anaemia, as mentioned by Duane) and if it's below 12 you should not be phlebbed.

@ YREKADC... my only concern with stopping is my sat% is still at 64%. @ fructmals...I wasn't able to get my kids genetically tested. The geneticist said, since it is an adult onset disorder, they don't test children and allow them that decision when they are 18. My pediatrician is going to test their iron, ferritin and liver once a year to monitor so I am ok with that.
@ AndreaUK...my hemoglobin is still at 14 and my hematocrit is still at 42.5. I am ok there. I had my phlebotomy yesterday so i am hoping i am ok. Should I have noticed something by now if it wasn't good for me?

Yes, I think you can safely assume you are ok, if phleb was yesterday and there are no ill effects.

Ok, good. Here's hoping it doesn't go back up before next month's labs and I can move on to maintenance. I am only going once a month right now and have had 5 phlebs. Not bad. Don't really know my pattern yet though.

JB,

I have seen several threads on something called iron avidity that some people experience a rise in % saturation by the phlebotamy process.

Maybe as you increase the time between phlebs based on ferritin, your sat numbers will decrease on their own.

The other piece of data that I have seen numerous times is that serum iron and sat% can vary during the day. Are you getting your bloodwork done after fasting? It looks like tour Hgb is staying solid, so to me you do not seem to be in danger of being overbled.

I think that you said that you really do not notice any differnce in how you feel before or after phlebs. I am also in that category. One of the things that I am monitoring is the MCV number on my CBC test. I have read that this number will decrease by 3% from the base level when your body is approaching being de-ironed. I am still at a ferritin of 223 after 37 phlebs and my MCV stays at 102 to 103. Maybe someone else in mauintaince can comment on MCV before and after maintenance.