can we chat Ferritin and iron levels ?


Well-Known Member
I am 15+ years out DS. I have struggled with anemia prior to the DS . I had a hysterectomy prior to DS due to heavy bleeding, which ended up being a huge tumor. It's been a roller coaster ride with my ferritin and iron levels for years. I was borderline infusions, but then was able to get levels up with increased multiple brands of iron.

We have moved quite a bit too which means some docs do not understand. I just had my ferritin and folate levels rechecked and my folate is back in normal range, but my ferritin is still hovering at 377 despite a decrease in intake of iron. I have read a lot about side effects of it being high, including increased pain with arthritis ! BINGO ! My pain levels have been horrid and this is just not like me.

Even swimming does not. Over the past 4 months I decreased my iron by 106mg a day and it only dropped one point on labs. I used to take 3 Multigen (70 mg elemental iron each) and Ferretts Iron (106 mg of elemental iron ) just to say at the low end of normal.

Due to my high pain levels I was looking closer at my labs and it's now been since June of 2015 that these levels have been this low, despite backing off the iron. I used to take more Ferretts Iron in the past.

I know we need to supplement to our personal labs. Anyone have any suggestions on how much more iron I should decreased without bottoming out ? I had really thought cutting back by the 106 mg would of helped but it has not.

Thanks for any input.


Staff member
Have a chat with a hematologist as too high can be indicative of other things. Dh’s was in the 400’s, yet his other iron markers started dropping. He’s still keeping an eye on them but his other markers have straightened out. If it gets too high, they may have to take some out to level the playing field.


Well-Known Member
I have never seen a hematologist as labs have always been somewhat stable. I saw the labs online and my PCP has not called yet. I assume she should call tomorrow. I stopped taking my iron over the weekend, figured it wouldn't hurt. I think my insurance requires referral now to a specialist. I will check and see. So many in this area have no idea what to do with DS labs / facts. Although PCP has seemed good overall and she does what I ask as far as labs. I suppose I should google this afternoon and see what other things it might indicate. Hubby had knee surgery and I have been pretty swamped with work too.