bother trying PaP again after aerophagia failures w/ LPR?

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johnspartan
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Re: bother trying PaP again after aerophagia failures w/ LPR?

Post by johnspartan » Sun May 28, 2023 8:11 pm

Callen wrote:
Sun May 28, 2023 12:09 am
johnspartan wrote:
Sat May 27, 2023 2:20 pm
Am still working on trying to boost low ferritin, which can cause sleep disturbances, and is likely compounded by the autoimmune gastritis... if you don't have enough b12, you won't process iron properly. Just had bloodwork done again, we'll see how that is. Never had an iron infusion, but most docs won't give you one unless your ferritin is near zero.
Fix this. The bioavailability of PO iron vs. IV iron is nuts. I would do everything you can to get IV infusions: Beg, Lie, Borrow, Cheat, Steal. I'm being hyperbolic, but I feel it's certainly worth a shot. Also, I recommend a full iron panel if you haven't already. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7567229/
Thanks Callen, I will do my best. HIstorically I have had very little luck with oral iron. My ferritin generally hovers in the "just-below-normal" range, though it has been as low as 7 and they still did nothing. My understanding is that even the average hematologist (I've seen 3 in the past) won't do infusions with the info I typically get from the panel.

Just did this last week.

IRON, SERUM 84 REF 59-158 UG/DL
UNSATURATED IBC 229 REF 112-347 UG/DL
CALC TOTAL IBC 313 REF 250-450 UG/DL
CALC % IRON SAT 27 REF 20-50 %

FERRITIN -> 25 <- REF 30-400 NG/ML

Right now I'm also seeing a neurologist who thinks I should be targeting around 100 NG/ML, so that is something.

Callen
Posts: 87
Joined: Tue Apr 25, 2023 8:52 pm

Re: bother trying PaP again after aerophagia failures w/ LPR?

Post by Callen » Sun May 28, 2023 8:47 pm

johnspartan wrote:
Sun May 28, 2023 8:06 pm
Callen wrote:
Sun May 28, 2023 12:09 am
johnspartan wrote:
Sat May 27, 2023 2:20 pm
Am still working on trying to boost low ferritin, which can cause sleep disturbances, and is likely compounded by the autoimmune gastritis... if you don't have enough b12, you won't process iron properly. Just had bloodwork done again, we'll see how that is. Never had an iron infusion, but most docs won't give you one unless your ferritin is near zero.
Fix this. The bioavailability of PO iron vs. IV iron is nuts. I would do everything you can to get IV infusions: Beg, Lie, Borrow, Cheat, Steal. I'm being hyperbolic, but I feel it's certainly worth a shot. Also, I recommend a full iron panel if you haven't already. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7567229/
Thanks Callen, I'm working on it. My iron panel loooks ok - except for the ferritin. My understanding is that even the average hematologist (I've seen 3 in the past) won't do infusions with the info I typically get from the panel.

IRON, SERUM 84 REF 59-158 UG/DL
UNSATURATED IBC 229 REF 112-347 UG/DL
CALC TOTAL IBC 313 250-450 UG/DL 05/26/2023 01:52 am
CALC % IRON SAT 27 20-50 % 05/26/2023 01:52 a
EDIT: I just saw you posted your ferritin levels. Overlooked them. Try bouncing the idea off of your neurologist "Hey, I understand our goal is to get my ferritin around 100 and I'm around 25. I've been taking iron supplementation for years and this has been a recurring theme. Do you think intravenous iron would be more effective?"

Have you tried reviewing literature regarding low ferritin? Some lab tests are higher quality and have greater specificity than others. I'm not sure that's the case for you, but it's worth looking into IMO

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chunkyfrog
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Re: bother trying PaP again after aerophagia failures w/ LPR?

Post by chunkyfrog » Mon May 29, 2023 11:33 am

Vitamin C helps with iron absorption.
If you cannot tolerate vitamin C, IV may be the only alternative.

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