Didn't get infusion

[southernlady]

Bottom line for me, even if every DS patient had an iron problem, it appears to be a minor inconvenience for the most part for many, but when compared to never having the DS and having the plethora of all the other MO related issues, (not to mention quality of life)...many wouldn’t even be around to have the need to have your iron checked...I got it!

The HARDEST part is finding a PCP/Hema that is willing to trust YOUR instincts.

 

[DianaCox]

Right - I drive 35 miles each way to go to Henderson, because he "gets" that iron needs to be given long before it is out of normal range, or it is MUCH harder to fix the problem. I was referred to him by Dr. Rabkin, and he is very cooperative. And (also importantly) my insurance has always paid without question.

I've been very tired and lethargic recently, but I don't think it has anything to do with my iron levels, just my lack of exercise or even physical activity. But that is being used as my symptoms to support the insurance claim. And I don't expect I will feel any differently after the infusions, as I haven't in the past (though I was hoping I'd go from feeling OK to feeling like I had superpowers!) - this is preventive maintenance as far as I'm concerned.

 

[DianaCox]

And - this is why you track TRENDS, not just absolute values. This is why I'm getting infusions with my ferritin at 28:

 

[Munchkin]

Thank you Ladies for the info. You guys are pricelss, and I truly mean that! I just learned a lot. AGAIN! I think that last sentence @Munchkin said says a lot too. I’ll bet there’s a lot of non-DS folks iron deficient also, you guys are just on top of it more. Also, I do understand the individuality of it all. I can remember way back that my Mom was always low on iron and had to take some kind of pill. Also, many ladies have that monthly depletion. Bottom line for me, even if every DS patient had an iron problem, it appears to be a minor inconvenience for the most part for many, but when compared to never having the DS and having the plethora of all the other MO related issues, (not to mention quality of life)...many wouldn’t even be around to have the need to have your iron checked...I got it!

It's also a safe bet that a huge percentage of the general population is D deficient as well.

 

[Charris]

@DianaCox looking at my numbers do you think I should push for an Infusion?

 

[DianaCox]

@DianaCox looking at my numbers do you think I should push for an Infusion?

Why would you even remotely think you need an iron infusion, when your ferritin is WAAAAY high? 450 when the normal high is just over 200?

 

[Charris]

Because my labs that the tpn draw weekly keep saying I'm anemic. I'm taking oral iron and had an infusion 6 weeks ago in hospital. Maybe it just kicked in? I just started oral 2 weeks ago. I've noticed like with my rny its getting harder to go I got impacted. My iron stores were too high then so I was told no more iron.

 

[DianaCox]

I think your issues may well be beyond my meager paygrade on the topic - your ferritin may be high because of anemia of chronic disease.
http://en.wikipedia.org/wiki/Anemia_of_chronic_disease