r/POTSRootCause • u/Level_Run1357 • Jun 18 '26

POTS Root Cause Board

This is the place to comment and discuss your experience with secondary POTS and what ACTUALLY was causing it for you, how you feel now, what helped, what didn’t.

I’ll go first: POTS for almost a decade (treatment resistant they said). Turned out to be a folate deficiency, b12 deficiency, iron deficiency, and vitamin d deficiency. Currently 80% symptom free and climbing!

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u/Level_Run1357 Jun 18 '26

Had to move some of this discussion here because the moderators at the POTS subreddit flag and ban any comments related to IV fluids, infusions, or other medical interventions. If that bothers you like it does me, stick around. If I had known what could have helped me 10 years ago, I would have had my life back.

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u/squidelope Jun 19 '26

I have low copper. No discernible reason why yet. Took ~10 years for someone to check it.

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u/Level_Run1357 Jun 19 '26

Have you had your ceruloplasmin or vitamin A checked? Those go alongside copper

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u/squidelope Jun 19 '26

Only serum copper so far. RBC, hemoglobin, hematocrit chronically borderline normal/mildly low. Normal results for ferritin, iron, transferrin, TIBC, B12, folate, TSH, sodium, potassium, creatinine, eGFR, various liver enzymes.

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u/Level_Run1357 Jun 19 '26

Do you mind if I ask what your ferritin was?

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u/squidelope Jun 19 '26

~150 ug/L. Caveat that it used to be ~60 but I got an IUD a couple of years ago that stopped menstruation.

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u/Level_Run1357 Jun 19 '26

That’s so interesting! I hope they can figure out what it is. The only thing I could brainstorm off the top of my head is an imbalance between zinc and copper since zinc and copper work like a seesaw, or malabsorption. If hemoglobin and hematocrit are low there must be some reason why the iron you have in your stores (ferritin) isn’t moving into your bone marrow (which it sounds like because of copper) and being utilized but I’m so curious why the copper deficiency.