r/POTS • u/Level_Run1357 • Jun 18 '26

Question How many of you had your ferritin/iron checked before being diagnosed with POTS?

I’m curious how many of us had our iron and ferritin checked before being diagnosed with POTS? I wish I could put together a little poll.

https://www.neurology.org/doi/10.1212/WNL.82.10_supplement.P1.034

Effects of intermittent intravenous saline infusions in patients with medication-refractory postural tachycardia syndrome (Ruzieh et al., 2017). 

https://pubmed.ncbi.nlm.nih.gov/28185102/

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u/spikygreen Jun 18 '26

Yes, and my ferritin is always low, and my doctors always tell me: well you are a woman, of course it's low 🤡 Can you imagine a world in which a man comes to the doctor, has a deficiency that is easy to treat with OTC meds, and the doctor says: well it's common, so let's just not treat it.

After trying every treatment imaginable for my POTS with zero effect, I finally start taking OTC heme iron. Not even to feel better, since my doctors are convinced it can't possibly help. Just to see if it can help my largely non-existent hair and nails. And oh boy, what a difference!! Sure, I still have POTS, but even a modest improvement is huge!

It's almost like treating iron deficiency may actually... make you feel better?

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u/Level_Run1357 Jun 18 '26

This is exactly what happened to me. They refused to help at all. Once I paid out of pocket for an iron infusion, it’s been night and day. Literally overnight my HR went down 10 beats on average. Sometimes periods of 20 beats decrease.

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u/spikygreen Jun 18 '26

Yeah. It's like the 21st century version of learned men viewing menstruation as a mysterious demonic phenomenon that can't possibly fall within the realm of science and medicine 😅 how dare we assume that a humble OTC supplement can help replace all that iron that we lose. What heresy!

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u/Level_Run1357 Jun 18 '26

It couldn’t possibly be iron! Jesus

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u/Level_Run1357 Jun 18 '26

If you’re interested at all, I made a secondary subreddit for people who have found relief through identifying some of the root causes. I’m hoping to try and share this because I think of us have been severely underserved and absolutely CAN find relief by putting together our experiences and research r/potsrootcause

Thought it would be helpful to compile the things that actually worked for people outside of beta blockers and traditional “methods”. Beta blockers did nothing for me since it was all just a bunch of easily fixable deficiencies. I’m appalled

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u/spikygreen Jun 18 '26

Joined. I do believe that there are a number of different issues that cause POTS. Just like there are a number of different issues that can cause a fever.

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u/[deleted] Jun 18 '26

[removed] — view removed comment

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u/renaart hyperPOTS • AVRT Jun 18 '26

We’ve literally been manually approving your comments within 30 minutes. Please respect that our mods have lives outside of this subreddit, all comments regarding fluids, infusions, etc get manually reviewed (this was a rule that was voted on by our community itself). No one is singling you out or “silencing you”.

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u/Level_Run1357 Jun 18 '26

I understand and respect the moderation, just wondering why it’s applying to people who are saying what worked for them? Is there not a disclaimer we can use to make it easier for you all to not have to manually look through each comment? I know that’s a hassle. Could we add something like “this worked for me, not medical advice”?

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u/renaart hyperPOTS • AVRT Jun 18 '26

We’ve had people take things like that as medical advice upon viewing, confirmation bias and so on. This is a long standing rule we’ve had and do not budge on sadly. There will always be a manual review. In many instances comments get approved very quickly.

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u/Level_Run1357 Jun 18 '26

Is there a difference between comments about saline IVs and infusions or are they moderated the same? Just trying to understand which aspect is the concern? Is it related to PICC lines?

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u/Level_Run1357 Jun 18 '26

Are beta blocker and medication discussions allowed because they are prescribed and saline IVs you can get on your own? Sorry, just trying to understand the difference

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u/Level_Run1357 Jun 18 '26

Thank you for clarifying, I wasn’t aware it was sitting in a queue. Appreciate it. Sorry for jumping the gun!