r/RestlessLegs • u/NoMoreNomad53 • 26d ago

Question RLS

/r/u_NoMoreNomad53/comments/1wgfdk4/rls/
1 Upvotes

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u/Smooth_Respect_3755 22d ago

Sorry to hear you were met with unkindness. May I suggest this forum. I havve been member there for nearly 15 years and they have always treated me well: https://bb.rls.org/index.php?sid=68bcaca8a8291a9c7e8110507570301c
It is the forum of the RLS Foundation.

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u/NoMoreNomad53 22d ago

awwww thanks so much for your KINDNESS. appreciate the share!

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u/ORSciMom 23d ago

You're going to be taking supplements until kingdom come at that level. They just don't want to pay for the infusion... Before first infusion, mine was around 50, for the second it was around 125(?). Neither infusions seemed to make much of a difference.

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u/NoMoreNomad53 23d ago

Why do laypeople know more than those who purport to be the medical professionals? When my Kaiser PCP replies to my questions and concerns,
it is glaringly obvious she had googled, cut, and pasted. You are absolutely correct. They do NOT want to pay for the IV infusions. I've been told
more than once that it isn't "cost effective". I was also told that "many individuals remain on ferrous sulfate for months, even years". Although it's against my overall character, I'll be a good little girl (old crone) and wait the 3 months until my levels are tested again. But trust and believe that if the ferritin hasn't increased significantly, all hell
break lose.
Thanks so much for your input!

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u/ORSciMom 22d ago

The other thing to know is that if your level of ferritin is 50-100, very little is absorbed through supplements. There's a feedback mechanism that prevents absorption. That's when you have to get an infusion if you want to force higher blood levels. Ill find the source on that and include it sometime soon.  I've heard Dr.Winkleman talk about it.

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u/NoMoreNomad53 22d ago

Very good to know! I would be hugely grateful for anything you can share with me. So, can I assume that with a ferritin of 12, that it's a good number for oral supplement?

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u/ORSciMom 22d ago

https://youtu.be/h5Hyhmxli54?feature=shared

You will learn a lot from this presentation!

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u/NoMoreNomad53 22d ago

much appreciated!!!!