Do you get by without iron infusions?

[Spiky Bugger]

BY THE WAY... @Eztli thanks for asking this question.

Because of your inquiry, I realized that MAYBE the reason I'm lollygagging around the house with minimal energy and demanding a diet of tri-tip and ribeye steaks MIGHT JUST BE RELATED to iron. I called my hematologist and it seems my last infusion was in June...so I'm probably overdue.

I asked him to order a blood test and advised him that I may need my iron tank topped off.

Hey, @hilary1617 my first hematologist told me that post-infusion euphoria sometime occurs because the first place the iron goes is to the brain...and makes it happy.

 

[DSRIGGS]

I don't supplement iron at all and never have. For some reason during my last surgery my iron really dropped and I was infused the next day. Since then I have not supplemented and my iron numbers are good.. I am chronically anemic but it is not iron deficient anemia.

 

[hilary1617]

[QUOTE="Hey, @hilary1617 my first hematologist told me that post-infusion euphoria sometime occurs because the first place the iron goes is to the brain...and makes it happy.[/QUOTE]

Euphoria is the right term! A couple of days after infusion, I'm filled with energy, exuberant, and I feel sharp.

On the other hand, when I am in need an infusion, not only am I lethargic overall, but my brain itself seems to be sluggish and doesn't perform well. Specifically, I have communication glitches, some verbal, but mainly in written / typed communication. I don't know if there's a term for the effect, but in essence, I stutter in my emails by repeating letters, whole words, insert extraneous characters. My sense of humor isn't as sharp. I'm dull.

Iron makes me happy and brighter!

 

[Petunia]

Does everyone get 3 infusions in a cluster or is it just me? I'm going in for #2 of three this week;#3 next week. Everything tastes metallic to me this time. Since I am a veteran of infusions, at least I get to skip the Benadryl. Usually get a burst in energy when the series is over, so that's something to look forward to.

Different kinds of iron require different dosing. My first one was only for an hour and I had to sit for 1/2 hour afterward, this last one was an all day infusion. I believe I was there 8 hours total. My surgeon first prescribed the one that is 3 infusions but insurance wouldn't pay for it so we had to switch to the cheaper type.

 

[Eztli]

Thanks everyone, I really appreciate your responses.
Considering I need an infusion before surgery, I am guessing I will need them after as well. I was just wondering about the general percentages, and if maybe I was doing something wrong that I need an infusion prior to even having surgery.

 

[bearmom]

Ive been reading a lot and some people seem to be fine just taking lots of iron supplements, and other people seem to have to get iron infusions.

I am getting an iron infusion prior to surgery, so I know my PCP is on the same page and it hopefully will not be an issue to get them after surgery etc.

But i am curious, does anyone have an idea of the percentage of people who need iron infusions vs those who don't? Or perhaps, if you used to need iron infusions but no longer do, what are you doing differently?

I've never needed an iron infusion, at 9 years out. I do take oral iron, but only every other day.

 

[BayouSwitch]

I was about 8 years post op before my iron deficiency surfaced. After trying to donate blood for a coworker with cancer I was rejected at the donation site due to low iron. Didn't think much about it but it happened to coincide with my yearly checkup with surgeon. Following bloodwork was told to see a Hematologist immediately and my labs were in a critical level. Was immediately sent for 8 weeks of iron infusions which I have had to repeat about every 10 to 12 months. This is very daunting for me since I have a pretty big phobia about IV's. So, we are now trying to do as a maintenance program of once every eight weeks instead of eight weeks in a row every year. I prefer this and so far is working pretty well.

Before my diagnosis, I didn't know how bad I felt until I didn't feel that way anymore. It took several weeks but I started to bounce back and feel like myself again. I was enormously exhausted every day. I would go home at lunch time to sneak in a quick nap. I would have to nap before I could tackle cooking dinner once I got home from work. Nearly froze to death every day. Unbelievable restless leg syndrome.

I will never again let myself get that bad off. Of course, I just thought I was stressed and tired. It kind of sneaks up on you gradually so it's easy to play off as just being pooped. But, of course, any of you who have had genuine fatigue know that it is completely different from just general sleepiness.

I can usually tell when my iron starts to dip because my restless leg starts to act up.

p.s. We tried oral iron supplementation and just got minimal results and all the bad side effects.