Iron overload, no blood transfusion

[Carolyn Stein]

Hello All,
I was diagnosed with MDS in March 2019 and began aranesp injections every two weeks. In the process of testing, my doc told me I had extremely high ferritin levels, but was very anemic. I’ve never had a transfusion. Doc put me on iron chelation med for 6 months and it brought my ferritin down somewhat, so was told to stop taking it.
I’ve had high iron counts my whole life, I believe, since being told I didn’t need to take iron supplements when I was pregnant with both of my kids.
They can’t take a pint of blood to help me get rid of some iron because I’m so anemic. My latest ferritin level was 1739, so it’s gotten really high again.
Does anyone out there have similar issues and how did you deal with it? Anyone who’s had a high iron load most or all of your life?
Thanks for reading this, and I’m hoping to find someone else in the same boat.

[buddy west]

How did you do with the iron chelation? I have been told there are bad side effects. My doc doesn’t seem to worry about the higher iron levels I’m 73

[Carolyn Stein]

The only ‘side effect’ was the cost. Even with good insurance, it’s very, very expensive

[Robin Smith]

Carolyn, if you take a multivitamin make sure it doesn’t have iron. Too, remember all white flour and most boxed cereals are fortified with iron. I brought my ferritin down by adjusting my diet so I’m posting a link I used that helped me. Take good care..

https://www.healthline.com/health/hemochromatosis-diet#keep-in-mind

[Carolyn Stein]

Thank you, Robin.

[Author]

Posts