I have found there is no science to this. I'm not a doctor, but I'm 4 1/2 years in. Sometimes I hardly drop anything from a phelb, sometimes, it's a lot! I found diet and exercise work the best. I think your lucky you are dropping so fast. I started at 1000, the Dr also gave me six months, but I only needed three months to drop to under 100. I did it every two weeks. My first doctor also didn't think anything under 300 was high. I'm with a new doctor and I stay under 50 at all times.

Thanks for the encouragement. I contacted the Dr. who says go ahead and have another phleb. and then wait 4 weeks to test. I am feeling better. Marcia

I forgot to say it was 104 this time after 3 weeks.

Hello Stephaniehh,

You mentioned diet and exercise works better than Phlebs? Are you referring to how diet and exercise keeps iron levels stable or have you found that they tend to lower the ferritin numbers?

The reason I ask is I am searching for ways to lower iron levels naturally. Due to the hospital scheduling, I have to wait until the end of the month before my first Phleb. I am anxious to give blood and see if the pain stops.

To lower it naturally, the only thing is wheatgrass. I took a month off as my doctor wanted me to recover some. I took wheatgrass tablets and dropped at a decent rate. I stopped for a month and am now getting regular wheatgrass at a juice shop. I haven't had a test yet, but I think it's working as the iron leaving in the stool changes its color. Don't use parsley or turmeric as they lower ferritin levels but by depositing it back in organs. There are medical studies on wheatgrass. My uncle with HH started wheatgrass and besides a drop in ferritin, saw his hair color come back!

In my case my ferritin was at 950ug/l when they started the phlebs. Then after about 4 phlebs, it shot up to 1350. I then had weekly plebs for 8 months. Sometimes a phleb would drop my ferritin by 50, sometimes I'd plateau and it would stay the same (250 in one case) for about 3 plebs. Now I bounce around from 45 to 60. I test every 2 weeks and get a phleb if it goes above 50. I've got liver and heart damage from the hemochromatosis so keeping the ferritin low is hopefully getting the iron out of the tissues. It does seem to be helping the afib issue I have with my heart.

Wheatgrass is interesting. I will look into that. I found doing coffee enemas with its glutathione producing and liver cleansing effect worked very well for me.

Its amazing how the ferritin levels can fluctuate with the saturation levels. I guess its the bodies way of constantly trying to balance whats going on inside it. Has anyone had high bilirubin levels with HH?

The ferritin levels are a lagging indicator. The body may produce more ferritin from available iron in response to the phlebotomies. Remember that phlebotomies directly reduce iron, not ferritin.

I had my lab results and these are the consistent results over 10 months: on average ferritin drops an overall average of 8 units per day with only phlebotomies. It averages 11 units per day adding wheatgrass. This was done twice four month apart.

I've been doing this since 1998 and I don't use Serum Ferritin as an indicator to phleb. I use Transferrin Saturation% since that is the free iron in the blood.
When my saturation goes into the 40s, I get fatigue and brain fog. I've been feeling crappy lately but didn't know if it was my thyroid hormone level (TSH) or my saturation. This past Monday my ferritin was 21 but my saturation was 47%. My doctor allows me to decide if I want to be phlebbed. I opted to be phlebbed on Thursday and now feel normal.
I stay away from beef and lamb for the most part and if I do have either I take calcium or dairy since calcium interferes with iron absorption.

JMHO