What do I tell the doctor to get a good iron infusion?

Marquis Mark

Well-Known Member
My NP at Kaiser is very nice, but she only gives me small doses of Venifer (iron infusion) at a time. My iron and Ferritin levels barely stay at the low end of the range. I've read some posts here that suggest we should keep our iron and Ferritin levels at the upper end of the range. So what is the medical rational I give her so that she orders me a good sized infusion, not this piece meal stuff she's been doing?
 

Sheanie

Well-Known Member
You obviously need a full infusion. Ask for a referral to get a full infusion in the chemo lab. Tell your NP that nothing else will do, that you are tired of this pussy footing around.

Look up anemia symptoms. Check off the ones you have, drive the point home that your care thus far has been dismal.

DSers dont retain iron as normies do.
 

Marquis Mark

Well-Known Member
You obviously need a full infusion. Ask for a referral to get a full infusion in the chemo lab. Tell your NP that nothing else will do, that you are tired of this pussy footing around.

Look up anemia symptoms. Check off the ones you have, drive the point home that your care thus far has been dismal.

DSers dont retain iron as normies do.
Why in the chemo lab?
 

Sheanie

Well-Known Member
Because your NP can only safely administer small doses of iron. The full chemo lab has a pharmacist and a doctor available, so they can give larger IV iron doses safely.

For instance, I have had reactions to many drugs. I get a cocktail of IV drugs before my iron, to prevent any reaction. They also run mine very slow, over 3 hours, and put a warm compress on the site.

The chemo lab also has the most experienced staff with IVs.
 

RainCity

Well-Known Member
My hematologist has yet to order me an infusion. Last fall my ferritin had dropped to 30, so she said to take more iron. I’ve been consistently taking 2 Proferrin (Heme iron) tablets a day since then, and my ferritin earlier this week is now 47. She’s happy with that.
 

Sheanie

Well-Known Member
My hematologist has yet to order me an infusion. Last fall my ferritin had dropped to 30, so she said to take more iron. I’ve been consistently taking 2 Proferrin (Heme iron) tablets a day since then, and my ferritin earlier this week is now 47. She’s happy with that.
Like I probably already said, its more about when you are SYMPTOMATIC, and looking at the whole iron picture. Even hematologists sometimes do not go by ferritin.

I become symptomatic below 60 ferritin, with my H & H normal. I have no problem getting infused at that level.

Are you symptomatic?
 

Spiky Bugger

Well-Known Member
My hematologist sometimes says something like, “Well, it’s on the low side, but it’s within range.”

To which I respond with, “How long did it take to go from out of range on the high side range to almost out of range on the low end? And...since it never goes up, only down...how low do we want it to get?”

And then, he usually says, “Oh! That’s right! Well, let’s top off your tank now.”


Sheanie is so weird...I’ve been getting infusion for...I dunno...ten or twelve years and I have seen ONE person have that horrid reaction, and it is hard to watch, to an iron infusion. I’m at the opposite end with Injectafer. It seems to bother fewer patients and, in my case, it takes fewer infusions, that go faster, and last longer.

My first infusions took hours and I had to go for several weeks in a row. With the Injectafer, I get two infusions, a week apart, no drugs before the infusion, the infusion lasts less than 45 minutes, and this last series has been good for over a year.

But you need a hematologist. They ROUTINELY provide iron infusions to chemo patients, so it doesn’t scare them.
 

Marquis Mark

Well-Known Member
I got the NP to give me the full 400 mil of Venofer. Usually she piecemeals it out 200 at a time. I just told her I was fatigued and had brain fog. That seemed to be enough for her. I also told her that since my digestive system is altered I absorb nothing, or next to nothing, from food so we needed to be hyper vigilant and err on the side of abundance. She didn't argue about it. I got it done at the chemo place, fully monitored. I find the NP more willing to give me what I want than some of the MDs at Kaiser, so that's why I usually go through her. Plus she's cute so, you know, that helps.
 

Sheanie

Well-Known Member
I got the NP to give me the full 400 mil of Venofer. Usually she piecemeals it out 200 at a time. I just told her I was fatigued and had brain fog. That seemed to be enough for her. I also told her that since my digestive system is altered I absorb nothing, or next to nothing, from food so we needed to be hyper vigilant and err on the side of abundance. She didn't argue about it. I got it done at the chemo place, fully monitored. I find the NP more willing to give me what I want than some of the MDs at Kaiser, so that's why I usually go through her. Plus she's cute so, you know, that helps.
WOOT! WOOT!

Hope this gets you up where you should be! Way to self advocate.
 

Spiky Bugger

Well-Known Member
I got the NP to give me the full 400 mil of Venofer. Usually she piecemeals it out 200 at a time. I just told her I was fatigued and had brain fog. That seemed to be enough for her. I also told her that since my digestive system is altered I absorb nothing, or next to nothing, from food so we needed to be hyper vigilant and err on the side of abundance. She didn't argue about it.
Great, but...it wouldn’t hurt to get to know your friendly Kaiser hematologist. Once we remind them that we always malabsorb, they like us a lot. Compared to their usual patients…generally, they are much sicker, either from cancer or from chemo…we are “easier” patients because we are healthier.

.
 
Top