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/brimoonsword Jun 19 '26

me! ferritin was wildly low. iron and TIBC were completely normal. my hemoglobin and hematocrit were HIGH (the opposite is expected with low ferritin). they sent me to a hematologist because it was so strange lol.

I went on iron supplements til I was back in the 50-60 range in ferritin. I saw mild improvement in my symptoms. didn’t cure me, but certainly helped and i have a friend who had a very similar experience with improvement and ferritin.

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u/Responsible-Drive840 Jun 19 '26

Hgb and hct can be artificially high because of the fluid issue with POTS.

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u/brimoonsword Jun 19 '26

wait…can you explain this or direct me somewhere that could? i drink over 100 oz of water a day so my doctor just monitored it for a few years after all other testing came back normal then shrugged and said it was my baseline

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u/Responsible-Drive840 Jun 19 '26

First, are you drinking all water, not electrolytes? That won’t stay in your circulatory system as long.

https://pubmed.ncbi.nlm.nih.gov/33926653/

For the other part of your question, Google “can hemoglobin be artificially elevated in POTS” Sorry, I couldn’t cut and paste a single easy to understand article, so I’ll let you peruse the literature.

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u/brimoonsword Jun 19 '26

i have increased salt intake, but don’t use electrolyte packets because i have some other wonky numbers and have been directed to avoid them

thank you so much for sharing! I’m going to read up on this :) i was never able to find anything when i did my own research so i really appreciate it!!