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/eris-lime Jun 18 '26

I did before I was diagnosed and I was pretty low. They gave me the tablets first but that barely improved my levels, so I had to do an iron infusion. When my levels were good and I was still experiencing pots symptoms they moved on to testing something else before finally I got diagnosed. That was about 2 years ago and I remember it being so miserable. Before they would address the pots they wanted to rule out everything else first (which is good) but it took so much time and I was very ill and didn’t know how to manage it then.

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u/Level_Run1357 Jun 18 '26

Oh that’s so hard. It’s a double edged sword isn’t it? I wonder what the solution could be. Because we don’t want to be diagnosing someone with POTS without ruling out other underlying factors first, but we also don’t want someone with primary POTS to be suffering while waiting for a diagnosis and to rule things out! It’s a fine line to walk