ginger
Well-Known Member
- Joined
- Jan 3, 2014
- Messages
- 95
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.
Ginger
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.
Ginger