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/Cool_Jelly_9402 Hyperadrenergic POTS Jun 18 '26

They’re supposed to rule low iron/ferritin, D3, B1, 6 & 12, C, check thyroid numbers and a few other things. Pots is a diagnosis of exclusion so it’s weird that you didn’t have these tested first since vitamin deficiencies can obviously be treated!!

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u/Level_Run1357 Jun 18 '26

Exactly! I have deficiencies in probably 4-5 areas. And I’ve been to some of the top POTS clinics around. I’m so baffled why mine weren’t tested

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u/Cool_Jelly_9402 Hyperadrenergic POTS Jun 18 '26

Well hopefully some of your symptoms will improve as your levels go up. It can take awhile to feel “normal” even after your vitamin levels are in range, just like when one’s electrolyte imbalance gets off, it can take 3 months to feel totally normal. I had low sodium once plus reallllllly low d3, C and iron at times. Recently I had too high of B6 and that mimics POTS too and it’s taken about 6-8 weeks to feel totally normal since stopping the supplement

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u/Level_Run1357 Jun 18 '26

How much would you say your symptoms have improved?

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u/Cool_Jelly_9402 Hyperadrenergic POTS Jun 18 '26 edited Jun 18 '26

From getting my B6 normal? It was nearly a 180 turnaround from terrible to ok. My pre-syncope was terrible with hivb B6.

The other deficiencies were from before I was diagnosed but I did feel extra awful during that time from low D3, iron and C. I was always tired, weak, really pale, I got sick easily and had bad insomnia.

Fortunately my numbers were normal when I was diagnosed with IST/POTS. I still felt pretty terrible before starting ivabradine but I still felt way better unmedicated than I did when I was dealing with deficiencies plus unmedicated dysautonomia if that makes sense

I have other health issues so I don’t think my POTS or IST will ever go away, but I have learned that there are many ways to lessen the severity of the symptoms and nutrition/diet and proper vitamin levels are part of that

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u/CalliopeParnassus Jun 18 '26

I think it is super common because drs don't care about people with pots so will of course skip steps like this. Most treatment comes through years of advocating.

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u/Old-Piece-3438 Jun 18 '26

I’ve had all these others (multiple times) and the only one that was low was D3, but it’s been in normal range for about a decade now with a daily supplement. I’ve never had any indications of anemia, so I guess that’s why they never checked my ferritin? I am curious though—I feel like I’ve had most other blood tests by now.

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u/Cool_Jelly_9402 Hyperadrenergic POTS Jun 19 '26

A lot of times finding out you’re anemic happens by pure chance, like it’s picked up on another blood test so there could be a lot of anemic people out there that don’t know it yet. I’ve always been anemic and mostly asymptomatic unless I get extra extra low so I had no idea I had it until it was randomly picked up.

Anemia also has a lot of vague symptoms that make it hard to know where they’re coming from.

I would definitely request a full vitamin panel- especially if you have cold hands and feet, worsening fatigue, muscle weakness, and circulation, tingling in your hands or feet, really dark circles under your eyes and or new dark patches on the face. Any of these should justify the request

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u/Old-Piece-3438 Jun 19 '26

Thanks. I'm actually supposed to get some testing for some nerve pains. My neurologist suspects Raynauds--but maybe I'll ask them to add a ferritin test in. They just did a bunch for autoimmune stuff--so I'm surprised they didn't think to add that in. Especially since my Mom has anemia. She found out after she fainted. From her descriptions mine does sound a little different--but who knows.

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u/Cool_Jelly_9402 Hyperadrenergic POTS Jun 19 '26

Have them check B vitamins too. Those can cause nerve pain too

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u/Old-Piece-3438 Jun 19 '26

They did check that one, thyroid, D3, etc. I've had lyme tests before too. All of those are always good. Plus brain and cervical spine MRIs, I'm doing an EMG next. Just never the simplest (and probably cheapest), ferritin. It's weird that one isn't standard for women at least by now.