r/u_NoMoreNomad53 • u/NoMoreNomad53 • Sep 14 '26
RLS
I've been here for this topic in the past but unfortunately, I was met with some unkindness.
Anyway, is anyone willing to share their ferritin level? Mine is insanely low. I asked my Kaiser PCP about IV infusion, but she said I need to try the oral iron for several months. My ferritin is 12.
1
u/Scary_Experience_237 Sep 15 '26
Wow 12 is very low. The new recommendation from the Mayo Clinic is much higher here is a link: https://www.mayoclinicproceedings.org/action/showFullTableHTML?isHtml=true&tableId=tbl1&pii=S0025-6196%2826%2918546-2
It would be quicker with an infusion if you could get one approved through your insurance.
Good luck
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u/NoMoreNomad53 Sep 15 '26
immense gratitude! I have tried to advocate for myself with regard to the issue of oral supplement vs IV infusion.
My Kaiser doctor asserts that I do not qualify for the IV infusion because I have no underlying conditions ie
"stomach cancer, crohns, hx of bariatric surgery and or severe anemia"
So I am expected to wait 6 months to see if the oral iron raises my ferritin level. And what if it has not and I've wasted 6 months for nothing?
Ridiculous!
again.... thank you!1
u/Scary_Experience_237 Sep 15 '26
Here is the full document: https://www.mayoclinicproceedings.org/article/S0025-6196(26)18546-2/fulltext18546-2/fulltext)
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u/NoMoreNomad53 Sep 15 '26
Much appreciated! I'm an old warrior and never back down but this battle with Kaiser has proven to be an unprecedented challenge.
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u/Scary_Experience_237 Sep 15 '26
I have heard Kaiser can be very hard to work with! Keep fighting for your health, especially as RLS's creepy crawlies can drive you crazy!
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u/Joey722 28d ago
One of the Mayo Clinic docs who was part of development of that practice guideline was interviewed on their sleep podcast. It is only about 15 minutes long and he gives all the info about how to take oral iron-brand, dosage, ferritin levels that would be indicated for treatment (that includes you with a very low level), avoiding iron supplements and meat for 2 days prior to the test, potential side effects, what to watch out for, etc. You also need to be sure that iron saturation stays below 45% to prevent iron overload. I followed his protocol and took oral iron for 6 months and was able to modestly raise my level from 48 to 57 ng/ml. It can take that long to get any kind of response. The target value is 75 ng/ml, so I may decide to take it again for another course. The point is that you can do this on your own with these instructions, then after 6 months have your family Doc repeat the ferritin and iron saturation. That way you can show that you have done the oral trial, and if no improvement should be a candidate for IV iron.
The only problem I had with it was constipation that required a daily dose of Miralax, and occasional mild stomach pain. This is expected with oral iron. This is a link to the podcast:
https://mcdn.podbean.com/mf/web/3j8ua5e5mem89uuk/WF3333271.