Iron infusions--is this note to doctor too harsh?

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SleepyBhamster
Posts: 91
Joined: Tue Aug 25, 2020 4:04 pm
Location: Birmingham, Alabama, USA

Iron infusions--is this note to doctor too harsh?

Post by SleepyBhamster »

I spent a long time composing a note to my new neurologist begging her to send me for an infusion so that I might possibly be better in time for a planned road trip in a few weeks. Very disappointed in her response that they have very few people who need iron infusions and she has no channel to get me in to get infusions. She wants me to continue iron pills (ferrous gluconate)--but I only just started on one a day with food. Yes, she said I may increase as quickly as I'd like, but couldn't that still take many months to show improvement?

So here's what I was going to write--but I don't want to offend her since I only just started going to her and she's otherwise pretty awesome. Lack of sleep can make me ... less diplomatic, but I'm getting pretty desperate for some sleep.
I don't understand why I did not have to wait for an infusion in that earlier circumstance I told you about [anemia pre-RLS]. There was no talk of having me wait until oral iron was tried first. And I'm very surprised and disappointed that UAB doesn't offer them. Am I understanding you correctly that you can't even refer me somewhere at UAB to receive them? No hematologist there who can administer one?

I will try to pursue it with my other doctor. I think you're great but can't understand why a doctor would want a patient to continue suffering because that's the usual procedure.

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Iron infusions--is this note to doctor too harsh?

Post by stjohnh »

Note to doc sounds ok to me. You probably should get a different neurologist. This one has 2 strikes: 1. Doesn't know about IV Iron consensus recommendations, and 2. won't really listen to the patient (you).

In the US, any doc with an MD degree can order IV Iron. Most neurologists won't order IV iron, but refer the patient to a hematologist. Hematologists give IV Iron frequently, so are attuned to dosing, using the infusion center, etc, making it simpler for the neurologist to refer to hematologist. Problem with hematologists is they frequently think IV iron is ONLY for iron deficiency anemia (which most RLS patients don't have, they have brain iron deficiency) and people with RLS may have to educate the hematologist, assuming the neurologist that made the referral didn't do that.
Blessings,
Holland

SleepyBhamster
Posts: 91
Joined: Tue Aug 25, 2020 4:04 pm
Location: Birmingham, Alabama, USA

Re: Iron infusions--is this note to doctor too harsh?

Post by SleepyBhamster »

Gee, I had an appointment tomorrow with a different neurologist but assumed he wouldn't be as good as this one, so I cancelled it.

I think I will add to my note: "Are you telling me that no neurologist here at UAB who works with RLS patients sends them for iron infusions? If that is the case, then UAB probably wouldn't qualify as a recommended provider for RLS Foundation members."

:-(

badnights
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Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Iron infusions--is this note to doctor too harsh?

Post by badnights »

I would definitely remove the cutting edges from your note, if it's not too late. I wish I'd seen this earlier. I wrote a note to a doctor once and it caused me a world of trouble. The problem with notes is it's so hard to get the nuance right. Also, no opportunity for the doctor to explain herself, and no opportunity for you to modulate your reaction.

I'm too tired to finish this with good examples of how you could say it. Sorry.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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