Iron infusion levels

Zarabear

Well-Known Member
Finally...
First infusion on Oct 23rd, and the rest on the subsequent Tuesdays after. Last one is the week of Thanksgiving! So glad to have this finally set.
 

nedsmehlp

Well-Known Member
http://www.injectafer.com/about-ida/absolute_vs_functional_iron_deficiency/

This may help those who need iron infusions but have trouble convincing a doctor.
http://www.injectafer.com/about-ida/absolute_vs_functional_iron_deficiency/

This may help those who need iron infusions but have trouble convincing a doctor.
My Oncologist/Hematologist keeps saying you’ll need an infusion next, then next time, he’s been saying it for over a year, and makes me come in every 3 months. He doesn’t take my Ferritin level. I have severe RLS. My ferritin is 10, iron 76, folate >20, iron bind capacity 457, hemoglobin 13.8, iron saturation 17%. Is it time to insist on an iron infusion? My family dr gave me a prescription for fusion iron capsule and I’m so nauseated!! Please any suggestions or are my levels okay?
 

southernlady

Administrator
Staff member
My Oncologist/Hematologist keeps saying you’ll need an infusion next, then next time, he’s been saying it for over a year, and makes me come in every 3 months. He doesn’t take my Ferritin level. I have severe RLS. My ferritin is 10, iron 76, folate >20, iron bind capacity 457, hemoglobin 13.8, iron saturation 17%. Is it time to insist on an iron infusion? My family dr gave me a prescription for fusion iron capsule and I’m so nauseated!! Please any suggestions or are my levels okay?
No, your levels are not okay. Insist on getting infusions for RLS.
 

nedsmehlp

Well-Known Member
No, your levels are not okay. Insist on getting infusions for RLS.
Thanks so much for the help! I hope he listens, he gets pretty mad when I question him. I don’t think they realize what the DS is cause when I had kidney stones they told me to quit taking calcium!! Even when I told them I have bone loss in my mouth! Sorry, but I’m so frustrated, they don’t even want to learn what I need. They consider my surgery like the gastric bypass. By the way I requested that blood work you posted for DSers, and my PTH is 44, PTT 33.6, vitamin A 96.2, B12 2000, E (alpha) 23.5, E (gamma) 0.3, copper 175. Sorry to keep picking your brain!
 

southernlady

Administrator
Staff member
Thanks so much for the help! I hope he listens, he gets pretty mad when I question him. I don’t think they realize what the DS is cause when I had kidney stones they told me to quit taking calcium!! Even when I told them I have bone loss in my mouth! Sorry, but I’m so frustrated, they don’t even want to learn what I need. They consider my surgery like the gastric bypass. By the way I requested that blood work you posted for DSers, and my PTH is 44, PTT 33.6, vitamin A 96.2, B12 2000, E (alpha) 23.5, E (gamma) 0.3, copper 175. Sorry to keep picking your brain!
When mentioning labs, we need lab range to help you.
I do know your B12 is fine. Several of us have B12 over 2000 with no supplements at all.
 

nedsmehlp

Well-Known Member
When mentioning labs, we need lab range to help you.
I do know your B12 is fine. Several of us have B12 over 2000 with no supplements at all.
Vitamin A mine 96.2 range 22.0-69.5, I take 25,000 per day. Copper mine 175, range 80-158. Vitamin E (gamma) 0.3, range 0.5-4.9. I went around and around with my hematologist nurse and she said my iron is normal. They will not ok an iron infusion.
 

nedsmehlp

Well-Known Member
I contacted Dr. K’s office and had my PCP fax him my blood work results. I have a video call with Dr. K next week. Hopefully, I can get help with getting an infusion.
 

Spiky Bugger

Well-Known Member
Thanks so much for the help! I hope he listens, he gets pretty mad when I question him. I don’t think they realize what the DS is cause when I had kidney stones they told me to quit taking calcium!! Even when I told them I have bone loss in my mouth! Sorry, but I’m so frustrated, they don’t even want to learn what I need. They consider my surgery like the gastric bypass. By the way I requested that blood work you posted for DSers, and my PTH is 44, PTT 33.6, vitamin A 96.2, B12 2000, E (alpha) 23.5, E (gamma) 0.3, copper 175. Sorry to keep picking your brain!
Is there a reason you’re stuck with this guy?
 
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