Re: Iron deficiency anemia

August 2, 2002

Now that we are on the topic of iron again-I desperately need some help. I am

severely iron deficient. I have no stored iron-ferritin is 1- and I have very

little circulating iron. My iron issues began before bypass surgery, although

they were not severe until I was a post-op. Don't seem to absorb any iron

from food, and maybe not even from supplements. After a couple of

transfusions, my hematologist switched me over to IV iron. I used to get

intravenous iron once a week-this really helped my anemia a lot-I no longer

needed to get transfusions. The hematologist, after some trial and error,

figured out last winter that I would probably need these infusions for life.

Once a week for maybe a year and then at least once a month for maintenance.

Well, as luck would have it, my insurance became Medicare as of this past

January 1st. I got medicare because I was approved for total disability by

Social Security, due to the anemia and other issues. Well, medicare refuses

to cover the IV iron, so I am back to transfusions!!!! I am so unhappy about

this. The transfusion help, but basically for the first 4 to 6 weeks after a

transfusion I feel pretty good, and then over the next 6 weeks my energy and

health decline until they are in the pits again and I need another

transfusion. There are other drawbacks-transfusions always carry some risks,

and also they do NOTHING to build up ferritin/stored iron. They only give a

temporary boost to circulating iron. The only thing that can build up your

strored iron is iron!!--either oral, injections (don't work for me) or IV. My

hematologist has appealed-because she has many cancer patients that she also

treats with the IV iron-but medicare says no-they approve it for kidney

dialysis patients, but not for cancer patients or anemia patients.

I feel like I am between a rock and a hard place. And to make matters works,

when my iron dips low enough, I get restless leg syndrome every night so bad,

that I want to jump out of my skin! And I chew ice like crazy--another anemia

side-effect-- which cracks your tooth enamel. I know, I know, I should just

not chew it, but believe me, it is a compulsion!!!! It is a condition called

pica, and it is crazy--like heroin addiction or something-impossible to

resist that ice!--not that I have personal experience with heroin addiction

LOL.

Anyway, sorry for the long desperate post, but I am at the end of my rope.

All of you who have been successful in gettin IV iron covered by

insurance--do any of you have medicare as your primary insurance. If so, did

your doc have to fight to get it covered? How did you get approval. HELP!!!

Fran

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