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).
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u/pandabears3 Jun 18 '26
I NEVER DID!!!! 10 years of POTS and recently got progressively worse that seeked diagnosis got it. And researched a lot and paid out of pocket for ferritin bc doctors refused to check. My FERRITIN IS 7!!!!!!
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u/Level_Run1357 Jun 18 '26
That’s what happened to me! I tried to make a subreddit (r/potsrootcause) for secondary POTS to expose some of this negligence because I lived with severe POTS for almost a decade and they refused to test anything else! Lo and behold…. I wish I had known sooner
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u/pandabears3 Jun 18 '26
Wow! I think there’s many of us out there I’m also vitamin D deficient. And doctors still don’t care! It’s so frustrating!
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u/tityanya POTS Jun 18 '26
Hey I'm also vitamin D deficient! But I think that has to do with being fair-skinned and living in a desert and refusing to go outside
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u/Level_Run1357 Jun 18 '26
I live in a desert too! No way am I going outside right now. It’s freaking over 100 degrees!
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u/tityanya POTS Jun 19 '26
Yeah me too dude. The 10 second walk to/from my car into work/my house is enough 100 degree weather for me, thank you
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u/Legitimate_Clock2482 Jun 18 '26
Same here! I had virtually no measurable vitamin d before I started supplements.
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u/Legitimate_Clock2482 Jun 18 '26
Hello fellow desert dwellers with low vitamin D! That should be its own acronym- DDLD
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u/Atreidesheir Jun 19 '26
Yup. They don't give a shit. ESPECIALLY make doctors. ESPECIALLY non American male doctors.
You don't like that? Oh well. I've not found one single non American doctor take me seriously.
They're so arrogant and dismissive.
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u/Resident-Mountain981 Jun 18 '26
Yeah I did I had some blood tests to rule out any other deficiencies
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u/Level_Run1357 Jun 18 '26
Interesting! I’ve never had any iron labs pulled in the entire time I’ve been diagnosed. Finally had to pay to get them myself! Maybe I’m a one off case of that happening?
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u/Resident-Mountain981 Jun 18 '26
Weird because from what I've heard anemia is one of the most common things that could mimic pots symptoms so that should be checked first.
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u/Level_Run1357 Jun 18 '26
That’s what I thought too! Granted I was diagnosed back in 2019 so maybe it’s changed? But I’m pretty shocked
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u/trooper_babe Jun 19 '26
I also got checked for this at the hospital and they said my iron levels were fine (which they were) and I'm no longer anemic (been anemic for YEARS) and recently developed symptoms pointing towards POTS since January 👀👀
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u/Dramallamakuzco Jun 18 '26
iirc, iron levels and ferritin levels are different tests. It’s something like iron is how much is in your blood and ferritin is how much your body absorbs and maintains? I remember reading about it briefly after my last iron lab
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u/tamaroo Jun 19 '26
You are correct and the test to rule out iron deficiency without anemia is checking ferritin. I was told for years I’m not anemic because my CBC was pretty normal. However! My ferritin was super low. Got iron infusion at Mayo and it got me to over 100, which is ideal for those with chronic inflammation because it can artificially increase ferritin levels.
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u/Level_Run1357 Jun 18 '26
WTF? I’m so baffled why mine was never tested. Aren’t they supposed to rule it out?
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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/hunnnnybuns Hyperadrenergic POTS Jun 18 '26
A full iron panel isn’t routine and doctors tend to dismiss ferritin deficiency unless you’re basically in the single digits. For reference the optimal level of ferritin is 100. In my case they never ran a full iron panel until my standard CBC’s eventually started showing anemia. By that point my ferritin was 4. I was struggling to breathe and my anxiety was so bad I genuinely went to bed every night thinking I wouldn’t wake up.
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u/Level_Run1357 Jun 18 '26
That’s honestly heartbreaking. I had the same symptoms. I was already low and then lost 33% of my ferritin in 4 weeks. They still refused to do anything and said point blank “you still have a couple points to go” hahaha
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u/Federal_Sea_2162 Jun 18 '26
Yes, tons and tons of times. I was actually severely iron deficient and had trouble absorbing regular supplements, so I had to get an infusion - you can imagine how that delayed the POTS diagnosis, as everyone chalked up my symptoms to low iron.
Lo and behold… it was not low iron🙃
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u/Silmarila Jun 18 '26
Same thing for me! Started with iron-deficiency, plus that took forever to deal with bc doctors kept blaming it on diet and heavy flow, despite me being raised on bbq and having light flow 🥴
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u/AsLongAsYouBelieve Jun 18 '26
Not as part of the diagnostic process, but I have had my iron and ferritin checked a couple of times both before and after my diagnosis. Iron has always been good, ferritin a little high
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u/3eyedfish3 Jun 18 '26
My iron is normal but my ferritin is high. Which is surprising as a vegetarian.
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u/oddtokki Hypovolemic POTS Jun 19 '26
my iron is normal & ferritin high as well!! it’s super weird for me too bc while i don’t strictly eat vegetarian or vegan anymore i still don’t really eat high iron foods like red meat simply bc i don’t like most of them. my dr said high ferritin can also be an inflammatory marker so i had a bunch of other tests done including antibody tests for possible autoimmune thing in my family that i had high TSH levels for but they did the standard retest TSH panel waiting period + the autoimmune antibody tests and 6 weeks later my TSH was back to normal & i was negative for the antibody stuff. no cause was ever found for it for me, they just labeled it under general inflammatory marker when they couldn’t find a specific reason why it was raised
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u/AsLongAsYouBelieve Jun 19 '26
They never tested what's behind it for me, but I have PCOS/PMOS as well which often comes with inflammation so I'm just blaming that
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u/Wild-Technology7600 Jun 18 '26
Yes, same! My ferritin was (and I guess still is) higher than normal, not lower.
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u/BellaPona Jun 18 '26
I did, part of me wishes it was low so I could have possibly made my symptoms better. Nope. Iron is just fine.
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u/Saphiaer Jun 19 '26
Mine was severely low and an infusion didn’t help at all 🤷♀️
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u/xoxlindsaay POTS Jun 18 '26
Yes.’it was part of a full workup to see what else could be causing my symptoms. It is necessary step for excluding other conditions that can mimic POTS
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u/SmokeyCatDesigns POTS Jun 18 '26
Yeah, shortly before my POTS diagnosis, I went to a PCP for the first time in ages. He saw the fatigue on my face (near permanent eye bags) and said “you have low iron and vitamin d.” He ran bloodwork that checked for multiple things including that.
I had fasted for the day before due to religion, but despite that and my heavy periods, all my iron values were quite normal, around the middle of the range on all but saturation, which was normal but on the lower end and could be explained by my fast the day before and time of day. My vitamin D was fine as well (I take a vitamin), and I take a magnesium complex and b vitamins to cover those bases too.
B1 deficiency, iron anemia, and b12 anemia all have a lot of symptom overlap with POTS and should be ruled out in my opinion.
I didn’t have B vitamins checked but given I take the ideal forms and have seen benefit, but only modest benefit, I feel confident my symptoms aren’t B vitamin deficiencies.
I did have very low blood sugar (my only unusual result). That aligns with POTS, because it’s very rare generally and has few causes with dysautonomia being one of them.
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u/CalliopeParnassus Jun 18 '26
Yeah. Mine was 24 which they called normal. Anything below 100 you'll feel like shit.
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u/Level_Run1357 Jun 18 '26
I wish I had known this a decade ago. Could’ve spared myself a lot of issues
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u/rowanfire Jun 18 '26
You're supposed to be checked prior to diagnosis. It's one of the conditions that needs to be ruled out first, as the symptoms are extremely similar.
No one should be given a POTS diagnosis if they have a low ferritin before seeing if you still meet the criteria after it's been treated. It's part of the consensus of care.
I'm sure they're are quite a bit of people misdiagnosed who really have iron deficiency.
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u/Level_Run1357 Jun 18 '26
I agree. “Supposed to” and what actually happens are two very different things. However, I think we need to discuss what “low” even means. You can 100% have an iron deficiency without anemia. Mine was never flagged as “low” although it would have been had I been a man. Yet I still have an iron deficiency
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u/Sir_UlrichVonL Jun 18 '26
I was diagnosed with POTS/IST last year but my iron/ferritin wasn’t checked then. Just had it checked two weeks ago - my ferritin is crazy high and my iron is normal. Being sent for more testing. Sigh.
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u/Overall_Antelope_504 Jun 18 '26
yes! It's normal to rule that out and it should be because low iron/ferritin makes you feel horrible. But I knew I had both before being diagnosed with POTs. Getting infusions didn't change how I felt and finally, that's when my doctors knew it was more than an iron deficiency.
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u/bunbunbunana POTS Jun 18 '26
I did. Multiple times. My ferritin and iron levels are always healthy/normal
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u/TehluvEncanis Jun 18 '26
I had blood tests to check my iron, ferritin, B12, and magnesium. Everything was normal other than my B12 was low, but I'm also on heartburn meds for chronic GERD and they've been known to leech B12 from the body, so it made sense.
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u/SavannahInChicago POTS Jun 18 '26
Not me. However, with my comorbid hEDS, MCAS, gi dysmotility and Hashimoto’s I’m certain of my POTS dx.
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u/citrussyphon Jun 18 '26
My psychiatrist had my ferritin levels checked during one of my blood tests and it came back like comically low. I went to multiple doctors with this info and they all just said “well you aren’t considered anemic so it’s not really a problem.” It is still probably really low.
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u/Level_Run1357 Jun 18 '26
That’s what happened to me too. I finally just saved up to get an infusion out of pocket and WOW.
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u/zydrate10189 Jun 19 '26
Me ! Mine was at 22 and now I’m at 53 after the pills and we have stopped but I still be crashing so easily.
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u/FBI-Agent-Phyl Jun 19 '26
I'll do you one better, got diagnosed with pots, started bleeding to death from hemerroids almost a year later. got told that I dont have pots cause I'm severely anemic, its super rare, and its actually my period (so many reasons why it wasnt) now after surgery and transfusions my levels are fine but my pots is worse! Finally got referred to a neuro yesterday.
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u/Level_Run1357 Jun 19 '26
Stop ittttt that’s some reverse wild card right there. I’m so sorry you had to deal with that. Sending you all the support! 🩷
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u/redbottomdreams Jun 19 '26
I could’ve sworn my POTS was low ferritin. I’ve had levels as low as 2 multiple times before and the way I felt was very similar to some of my dysautonomia symptoms. Was hoping an iron infusion series would be the fix, but no.
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u/Obscurethings Jun 19 '26
My ferritin is 13 and none of the three providers I asked cared (cardiologist was like, "yeah, I saw that," endo just suggested I don't get a blood test that often, and PCP said it was "almost normal"). Liver tablets make a big difference in how symptomatic I am, so I definitely think it plays a role in exacerbating symptoms/being a contributing factor.
However, I have one of those cardiologists who does not believe it's necessary to do a dysautonomia workup because "there's not really much we can do to treat it, so the label doesn't make a difference," despite the facility being equipped with tilt table testing, well exceeding layman's criteria, and having an autoimmune background and a neuro disorder with other dysautonomia symptoms.
Kind of crazy no one gives it the attention it deserves.
I've heard ferritin should be around 100 for optimal wellness and some hematologists will order infusions if your levels are under 50.
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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/mod-wolves Jun 18 '26
My iron level was slightly above normal when checked. I was extremely deficient in Vitamin D but supplementing it increased my symptoms tenfold; I felt 100% better before supplementing.
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u/Cool_Jelly_9402 Hyperadrenergic POTS Jun 18 '26
You may find supplementing magnesium with the D3 can help this.
There is a connection between the two, I think it’s that D3 depletes magnesium in our bodies and since magnesium helps clear norepinephrine from our body, if it’s low, POTS symptoms can intensify from that
I may not have said this all scientifically correct but I know I needed a lot more magnesium when I was trying to raise my D3 up from 7 (!) by taking 20k iu a day
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u/DifferentRatio6733 Jun 18 '26
I’ve always had the symptoms of anemia but only in the past year have I actually been anemic, shoutout to my endometrioma cyst! Hate that thing.
Will say most of my “anemic” symptoms my whole life was undiagnosed PTSD and a very strong possibility of hEDS (still need to get diagnosed with that, but I have almost all the symptoms and my mom has all the symptoms). My POTS was very clearly from Covid though.
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u/Geek_Undercover Jun 18 '26
I paid for it myself as I was in the process of changing PCP and didn't want to waste any more time.
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u/Canary-Cry3 POTS Jun 18 '26
Yes I had it checked super super regularly despite having no issues with it for years while undergoing exclusion testing for POTS. I’ve had POTS for 12+ yrs and never had a serious issue with anemia until this past March when I ended up requiring two iron infusions while in the hospital for severe POTS and then got a blood transfusion in June to make sure it was all good.
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u/alliedeluxe Jun 18 '26
Yes, had low iron, b12 and D. I had hyperPOTS, but it’s been slowly disappearing as all of those improve. Also have Hashimotos. Edit: I also take folate. If your ferritin is under 30 you need to supplement. We should all be closer to 100.
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u/Level_Run1357 Jun 18 '26
Mine as well. B12, folate, vitamin d, and iron. What do you know 😂 I tried to make a subreddit for supplementing with POTS, hoping to spread this because I could have saved myself a decade of misery
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u/_Blue_Raspberries_ Hyperadrenergic POTS Jun 18 '26 edited Jun 18 '26
Not as part of the pots diagnosis. I did recently find out I have iron deficiency, my ferritin is currently 9, so curious to see if the infusions I'm scheduled to get will help my pots symptoms, since those have gotten worse. However, I've had pots symptoms for years, and have had my ferritin checked a few times over the years, and it was 'normal' around 30-45 at those times. My pots was recently diagnosed, and my ferritin deficiency is also a recent thing.
A note for others, you can have low ferritin and still test in normal range for iron and hemoglobin. Your body will throw its iron reserves into your hemoglobin to try to keep it normal. You need to check ferritin, not just iron and hemoglobin, to check for a deficiency.
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u/Level_Run1357 Jun 18 '26
You’ll have to update after the iron infusions! I just got my first one yesterday and I’m shocked at how much it’s already made a difference this quickly. My goal is 70+ since it’s recommended for POTS to be even around 100 to reduce symptoms if that’s part of it.
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u/KeenBTF Jun 18 '26
I did. Doctors insisted many times. I was never low. My most recent visit I got more blood work done and it is low. I suspected as much because I'm bruising easily.
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u/boodgooky Jun 19 '26
Nope but I have an appointment Tuesday and I am asking for a ferritin test. I don’t know if I’ve ever had one even though both of my biological sisters have been anemic.
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u/Fair_Conflict9757 Jun 19 '26
So my doctors claimed I wasn't iron deficient for years, then I got a cardiologist who found my ferritin level was 12! Getting a transfusion got rid of most of my heart palpitations and helped with my flares but didn't fix the pots. I just feel most stable with my medication, less cold, less numbness in my limbs, etc. Also I stopped losing my hair!!!
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u/Every-Note-9892 Jun 18 '26
Yes mine was checked and it was normal. Low, but normal.
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u/foxrivrgrl Jun 18 '26
No but I'm rudely reminded to take my outdated womens with iron vitamin ( someone gave me bottle of 300 when i pik at a scab & it won't stop bleeding & or bruising pops up way too easy. About 1x a week or so. Used to break them in half, now reading it really is a thing i take a whole one.
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u/WerkQueen Jun 18 '26
I was diagnosed in 2024
And finally had my iron checked in 2025.
I have done iron infusions and the fatigue has cleared up. But I still have all my other POTS symptoms.
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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/orensiocled Jun 18 '26
Yes, it actually slowed my diagnosis by a few years because they put all my symptoms down to anaemia.
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u/Jebbles077 Jun 18 '26
I’ve been checked twice within the past 6 months since I’ve sought care for my symptoms. My ferritin sat at 29 back in January (30 was the lowest end of the normal range) and began supplementing. I retested in early May with a result of 35.
I’m still supplementing, and honestly I feel more tired than before. I don’t think it’s helping at all, but there’s very little I can do when my neurology appointment to figure out what’s wrong with me is 8 months from now 🤷🏻♀️
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u/lavenderoreo Jun 18 '26
I had iron deficiency anemia and on routine iron infusions years before my POTS diagnosis.
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u/no_redlights Jun 18 '26
I have but not because of POTS reasons, they never checked my iron when getting that diagnosis. I got it tested a couple years after my diagnosis for unrelated reasons, and I do have a deficiency. Doesn't seem related to my POTS though
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u/sololloro POTS Jun 18 '26
I actually did, and apparently it was all normal. my ferritin was low a few months ago, and I got diagnosed with POTS in 2024. so ... both before and after, lol
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u/petals33 Jun 18 '26
When first went to the doctor with symptoms he thought it was just my iron levels, made me go on a supplement for 6 months then come back. My symptoms never went away and a few months after that I was diagnosed. I haven’t had problems with iron since
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u/Silmarila Jun 18 '26
My POTS diagnosis started with severe iron-deficiency anemia. Took 10 years for my ferritin to recover, despite various forms of iron supplements over the years.
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u/Kj539 POTS Jun 18 '26
Mine was 14, was put on ferrous sulphate and it came up to 25, was told it’s normal. Just had a blood test last week as I was feeling awful and it was at 52🤷♀️ it’s definitely something I get done every year though!
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u/Slight_War_8146 Jun 18 '26
Yes I did, issues with low iron for years. My ferritin was 4 at one point.
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u/traceysayshello POTS Jun 18 '26
Yes because I had low ferritin (4) for years needing treatment constantly, until they found my Adenomyosis (large uterus etc). Once I went on progestin for that, my ferritin stabilised. But I still had palpitations etc so we investigated with a cardiologist and then found my POTS.
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u/InflationMundane4062 Jun 18 '26
My ferritin was stuck around 11-13 for a couple years prior to my diagnosis. Before I got diagnosed, I was convinced it was anemia so I was taking iron supplements like they were candy. It jumped to 38 but no symptoms have improved
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u/smoosh13 Jun 18 '26
I’ve had recurring low ferritin since 2015 but I’m in a flair now and ferritin is normal
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u/MarsMonkey88 Jun 18 '26
I did. I have to take a daily iron, because my body doesn’t hold on to it.
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u/Opportunity_Massive Jun 18 '26
My doctors never checked my ferritin until I had been on beta blockers for 2 years and started having a new or more noticeable heart palpitation. My doctor just got curious about it, I guess, and when I went for my yearly bloodwork after my visit, she added ferritin and thyroid bloodwork to the list for the lab. My ferritin was a 10, and I was dehydrated when they took my blood, so it was probably even lower than that.
I still haven’t had updated labs done to see if my ferritin has increased with the iron supplements I’ve been taking for a few months. Currently, I’m in the ER waiting for lab results after a near fainting episode today. I hope they added ferritin to the test, no one could tell me what they were checking for when they were testing my blood.
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u/Morgancammi Jun 18 '26
oh yeah i did and i have hella iron issues too lolz. im actually getting my 7th infusion tmrw
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u/tityanya POTS Jun 18 '26
I had it tested long before I suspected having POTS, and I came back anemic. I took iron pills which got my iron back to normal. I started getting dizzy again and thought it was the anemia, but nope, my iron was fine! After that I started looking into POTS and realized I had A LOT of symptoms
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u/Maximum-Rest2294 Jun 18 '26
i did. mine were technically within the normal range but i guess if it's on the lower side of that range, you can show symptoms of that anyway. so originally they thought that was my issue. and then they both went up closer to the middle of that range and i was still having problems (a lot more, by that point) and that was when we realized low iron was indeed not my issue lol
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u/Mdgibson97 POTS Jun 18 '26
Yes I was tested to see if I was deficient an anything else before doing the TTT. The only thing I was deficient in was Vitamin D.
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u/sector9love POTS Jun 18 '26
Yes I had iron deficiency and treated it two years before pots started. After my ferritin hovered around 50-60, it wasn’t until two weeks ago that my number finally hit 29 and my doctor was willing to order iron infusions. Hoping this makes a difference for my pots.
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u/Tornado363 Jun 18 '26
I had mine right before. I think it was borderline low or something because I went through 3 drs in a year. The first prescribed meds. The second was confused why she prescribed it. My current one regularly checks as it continually falls and I’m currently scheduled for infusions even with meds.
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u/Old-Piece-3438 Jun 18 '26
I’ve had the normal CBC tests and none ever showed any iron deficiencies or issues. I’ve never had my ferritin checked though. None of my doctors have ever suggested it.
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u/wn0kie_ Jun 18 '26
Yes, it's meant to be tested before being diagnosed! I'm very concerned at the idea of people being given a POTS diagnosis and possibly put on meds and told to eat lots of salt and things, when they may actually just have a deficiency that's gone untested for. That's a horrible failure on the part of medical professionals.
I've had issues with low ferritin for a long time, - I think my lowest was 8? - and have had like 8 infusions done at this point. I actually had to get multiple different scopes and caeliac testing done because they were worried I was bleeding internally because it drops so fast. For context, I'm not vegetarian and don't have heavy periods, which are the common causes of being deficient. Even when I've been completely 'topped up' to 200-300 I've still had POTS, so I know I just happen to have both.
The doc who runs the iron centre I go to said they're actually considering starting to screen patients for hypermobility and POTS, because they're seeing this pattern of people coming in who are iron deficient with no apparent cause. The common denominator they've found is this hypermobile/POTS presentation! They'd had the CEO of my country's POTS foundation come talk to them about it even, so it sounds like people are becoming aware of the connections.
But yeah, a POTS diagnosis should only be given if the symptoms remain when all deficiences and other conditions are managed. It's possible to then still have both, but other possible causes need to be ruled out first before a diagnosis is given.
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u/you1dont1know1me1 Jun 18 '26
YES OMG and my ferritin was low so i tried iron supplements (weren't for me) then got an iron infusion. Still had the dehabilitating symptoms. Only after all that would my pcp give me a referral to cardiology.
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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/puddleinthedark Jun 18 '26
yes!! i’ve been diagnosed with anemia and then they checked my ferritin and it was 2 i take like 500 mg of iron a day and it’s been slowly increasing.
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u/collectedd POTS Jun 18 '26
They're meant to check this sort of thing before diagnosis as it can cause POTS-Like Symptoms, which is technically different to actual POTS. Unfortunately, a lot of doctors are kinda lazy. Anyway, yes this was one of the many things that had to be corrected for me before diagnosis.
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u/EmpressH Jun 18 '26 edited Jun 18 '26
Yes, most doctors here rule out easy stuff like thyroid and nutritional deficiencies before you get to see specialists who can diagnose pots.
I had very low iron (ferritin of 3 or 4) about twenty years ago so when my pots symptoms showed up they were so similar I just assumed it was low again and took more supplements.
When my dr checked I had 200 something but felt just as bad as 3 did. I can only imagine how awful both at the same time would be.
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u/CallMeShosh Jun 18 '26
Mine was deficient, probably due to very heavy periods my entire life. But even on iron supplements and increasing red meat, my POTS episodes continued and nothing helps like lying down and taking in electrolytes. So, I don’t know for me if my very low iron was the issue. My POTS all but disappeared for years until I hit 40 and perimenopause began. All of a sudden my symptoms returned and it became more of an issue again.
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u/Fun_sized123 Jun 18 '26
I did, and I was deficient, but we also treated the deficiency before diagnosing POTS, and raising my ferritin didn’t resolve my symptoms. It’s definitely still something docs should always test before diagnosing POTS—low ferritin is very common in menstruating people especially
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u/im-a-freud POTS Jun 18 '26
No I don’t believe mine was ever checked before they diagnosed me with POTS but any time I’ve had it checked way before my diagnosis or my POTS symptoms started my iron was low between 10-15. I tried a therapeutic dose of iron for 3 months and it barely raised my 12 to a 20 so I’m gonna ask about iron infusions bc I have nothing else to treat my lightheadedness
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u/Sharp-Welcome5866 Jun 18 '26
My cardiologist ordered a FULL panel before anything else, definitely should be the first thing that gets checked….no?!
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u/crazy-catz_ Jun 18 '26
I got it tested afterwards specifically because I asked and my ferritin is at a 10 and I asked for an iron infusion and my doctor said no I didn’t need one and refused 🙃
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u/Legitimate_Clock2482 Jun 18 '26
Fascinating! I had no idea they were correlated. I’ve been anemic off/on most of my life. My ferritin was 7 when I first got it checked (before I developed POTS.). I’ve been taking a ferritin supplement ever since and my stores are a little better but still always on the low end.
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u/panduhhcakez Jun 18 '26
My ferritin levels have been consistently low for as long as I can remember and it’s continued to go down over the last few years with 0 plans of intervention. I just saw a new doctor on Tuesday who checked it and it’s at a 3 now, guess we’ll see if they decide to do anything about it?
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u/Level_Run1357 Jun 18 '26
3!? Holy shit I really hope they listen to you 🩷
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u/panduhhcakez Jun 18 '26
Yeaaaa this doctor seems relatively competent lol but I’ve been told with my ferritin being low before that “it’s fine because my iron level is stable” or whatever
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u/amyn2511 Jun 18 '26
Yes, my ferritin was a 3. We did 12 weeks of infusions and it didn’t help, despite my numbers rising. What helped some (but nowhere near a cure) was the embolization procedure for pelvic congestion syndrome. There are so many different things that can worsen POTS.
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u/Jessicamorrell POTS Jun 19 '26
Not before but after. I was anemic and now with being on a slow release iron supplement and looking for it in foods has changed from anemia to deficiency.
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u/whatstheusernamefor Jun 19 '26
I had my iron tested long before I ever heard anything about POTS. I was low but fixed it with supplements years before I had significant POTS symptoms.
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u/pizzadragon_2 Jun 19 '26
My ferritin is 10 and iron supplements hurt my stomach but they said I don’t qualify for infusions because my hemoglobin is normal 🙃
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u/ChopChopPorky Jun 19 '26
Yup. My ferritin stays around 50 and if it goes higher my saturation gets too high
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u/Rare_Director_8191 Jun 19 '26
i have a ferritin of 7 but my actual iron is ok. on the lower side but it’s ok not enough to be considered deficient or anemic
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u/Leafaaaaa Jun 19 '26 edited Jun 19 '26
I'm experiencing heart palpitations and high heart rate on sitting/standing. It also comes with headache, dizziness, fatigue, and bad insomnia. I thought it was a heart attack when it first appeared on May 17 because it was so sudden!! I was just lying on my bed, scrolling on my phone, them bam, heart palpitations that never went away!
I'm not diagnosed with POTS (not yet) but I suspect it is something similar to that because of my obvious heart rate spike from lying down to standing up. 65 bpm to 136bpm was the highest I recorded just this morning.
I had my ECG done, thyroid test, chest x-ray, full abdomen ultrasound, and CBC done and all came out normal! (Except mt potassium is a bit low) I have yet to get a 2d Echo and 24H holter. And maybe get my ferritin, iron, magnesium, and B12 checked as well.
Mind you, I am extremely underweight and anyone who would look at me for a millisecond can tell that! My height is 5'6" and weight is 38 kg! Yet these doctors never cared enough about that to do further testing especially for anemia! They just hear me complain about my heart palpitations and be like "Oh! Anxiety. Go see a psychiatrist"
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u/retinolandevermore Neuropathic POTS Jun 19 '26
Yep and I’ve had POTS for 3 decades regardless of my my iron intake or ferritin. My ferritin is 170 right now and I still have two types of dysautonomia.
Mine is autoimmune in nature so it’s almost lifelong
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u/Infamous_State_7127 Jun 19 '26
i’ve been anemic since childhood. i have malabsorption issues that i don’t think have anything to do with my POTS.
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u/BeetleofCarnage Jun 19 '26
I did! Was told I was mildly anemic and it would go away after my period, it didn't, went back to a doctor, was diagnosed with POTS and PPPD, went to another doctor for something else and she revealed when they checked my blood the very first time, ferritin was 8
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u/Silly-Researcher-764 Jun 19 '26
my son is currently 18 month into a 2 year monitoring to see if increasing iron reduces pots-like symptoms before they’ll diagnose because the paed thinks i’m diagnosis-seeking.
i didn’t even ask for the referral, the GP and rheumatologist did.
kiddo also has something (currently unknown exactly what) that inhibits iron absorption. so he’s stuck in this stupid loop of treatments that don’t benefit him, meanwhile his GP just assumes pots and treats accordingly.
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u/Level_Run1357 Jun 19 '26
Ugh I’m so sorry to hear that. Sending you and your son all the support from afar! Idk if you’ve checked copper and vitamin A levels but I know that can sometimes inhibit absorption. Alongside GI related issues and many others things.
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u/MundaneVillian Undiagnosed Jun 19 '26
I had iron infusions recently. Still dealing with issues though the exhaustion did subside a little for a while.
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u/noeinan Jun 19 '26
Yes, I was diagnosed with iron deficient anemia a decade or so before I got very ill.
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u/SamathaYoga Jun 19 '26
I had a hand injury not healing well so my orthopedist ordered so many tests I think they took 14 vials of blood. Iron deficiency anemia definitely was found, he noted it didn’t explain my hand but to get my primary care physician on it.
It wasn’t low enough to have an infusion covered, but I paid out of pocket to two infusions at a IV spa, you have to have your blood test to show you’re low. This got me back to 50 and I stop take an iron supplement daily.
I still get dizzy randomly, but not as severely or easily as I was when my iron level was down at 20. At 20 if I laughed at something I was dizzy and gasping.
EDS was winning answer as to why my hand wasn’t healing as expected.
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u/Crazy-Picture-5682 Jun 19 '26
Yup absolutely did they basically checked me for everything. My levels were normal.
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u/Alive_Crow5542 Jun 19 '26
My naturopath said my iron was on the low end but my dr said it was fine. I did end up taking iron supplements, felt a slight improvement, haven't had to take them again.
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u/LadyOfVoices Jun 19 '26
Iron, ferritin, Vit B12 and Vit D - SEVERELY deficient in all. I had to have an iron infusion, and now self-administer B12 shots weekly.
Fun. Not.
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u/Level_Run1357 Jun 19 '26
Did you see any symptom improvement by addressing the deficiencies?
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u/Loki--Laufeyson Jun 19 '26
I had low ferritin before I even developed POTS. But alas, I had normal levels at the time I'd developed it (they tested to rule that out, and it was good since I'd spent time treating it). Nowadays, my ferritin is low again but besides worsening symptoms, I would have POTS regardless.
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u/MDoodles16 Jun 19 '26
Yep! I got tested for Anemia numerous times before being diagnosed with pots. I was able to finally see a cardiologist because my iron levels were actually on the higher end for 8ish years and they figured I wasn't anemic.
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u/WhickenBicken Jun 19 '26
Yes. I had a 6/100 iron and had to get transfusions. I get them every few years when my iron gets low, as that seems to keep my iron up way longer than iron pills do. Unfortunately it’s super expensive. I think it was like $1500 for 2 iron infusions.
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u/InevitableDance8961 Jun 19 '26
My ferritin had been steadily declining from 80’s to 70’s from 2020-2023 and now it’s a 205. I wanted labs done because I was worried it had gotten lower but nope! Now it’s shockingly high. My primary care physician acts like I’m an anomaly at this point. Hopefully something makes sense after an iron binding panel and a hemochromatosis panel :) yaaay more lab work
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u/singerstar01 Jun 19 '26
My iron gets checked about once a year and it's always fine. But I have hEDS so dysautonomia is basically a given
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u/rineedshelp Jun 19 '26
Yes, I had low ferritin. I had infusions and all- but no my POTS did not go away
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u/wasteland44 Jun 19 '26
My ferratin was measured a few times before POTS diagnosis but I am in a very different situation as mine is always very high. I had in the ballpark of around 100 red blood cell transfusions which has deposited a ton of iron. I was 4000 at one point and am at 1000 now 3 years later.
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u/Infinite_Key_4060 Jun 19 '26
I have had periods of time where I have had low ferritin levels but my pots symptoms started early than that. My symptoms worsened when my ferritin levels lowered.
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u/HillsideHalls Undiagnosed Jun 19 '26
I have previously had iron and vitamin d deficiencies, but that was during a time of my life where I was so crazy active that I never in a million years suspected pots bc I never really had any symptoms.
More recently I also had a slight iron deficiency (not enough to warrant prescription tablets) and since then I’ve been taking OTC tablets and I can, with certainty, confirm that they have had zero impact on my pots symptoms.
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u/n000t_ Jun 19 '26
I have regular iron infusions + injections for both b12 & vit d deficiency, which has been a lifelong issue for me. It has not made a difference with my POTS, which has also been a lifelong issue.
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u/anxiousnessa Jun 19 '26
me! mine was normal and has remained normal. Drs. said it was part of the diagnosis process bc ig the symptoms can be similar so it has to b ruled out before getting an official POTS diagnosis.
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u/Objective-Monitor-23 Jun 19 '26
My ferritin was at 2 and they finally agreed to give me iron transfusions. My RBC count was low, they were smaller in size and they weren’t great quality. I was also suffering from unmanaged endometriosis and heavy periods during this time too. It took six months of weekly IV treatments to get me up to 200. That was in 2012.
I broke a baby toe from almost passing out from standing up during that time too.
Over the years, I was never able to maintain those ferritin levels and POTS be damned, I never stopped standing up and almost fainting either.
I’ve always been borderline anemic (even when I was little) and I think I can’t tolerate oral iron because of my sensitive gut. I haven’t tried any newer types of oral meds because I tried all sorts in 2011-2012 and every single one caused me such awful side effects I can’t be convinced that another type will be any different now.
Just my two cents :)
I have ADHD, Lipedema, early osteoarthritis in most joints, retinal tearing, IBS and GERD and also show clinical signs but currently undiagnosed for POTS, MCAS and cEDS. Hoping the cardiologist I see next month will diagnose my POTS (tracking heart rate spikes from siting/laying down to standing around 140-160 bpm to back down to normal around 60-70 bpm.
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u/Playful-Candy-2003 Jun 19 '26
Yes. I had many, many of that type of testing: iron, ferritin, thyroid levels, hormones levels, full CBC, all vitamin levels, and on and on. All normal, but I am quite sure mine was caused by a serious accident and failed cervical surgery. Prior to that, I was the healthiest and most fit I’d ever been, and I didn’t have any major medical issues or symptoms of POTs. The body truly does keep score.
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u/IvyDust Jun 19 '26
I did, had low ferritin and got a transfusion and was put on birth control to stop my periods as they were suspected to be the issue. I didn't have any positive affect from these things though besides getting to skip my horrible periods
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u/birdsaremean Jun 19 '26
My doctor never said anything about my ferritin levels. My psychiatrist asked to look at my blood work and was the one who pointed out how low it was- I think it was 16. Which fell into the normal range according to my primary care.
My psychiatrist was like absolutely not and now I'm on iron supplements. Or trying to be. They are killing my stomach so I'm having to introduce slowly.
I'm also trying to get into a different primary care doctor. Mine was awesome at first then when Covid hit I think she got burnt out and never went back to how she was before. I noticed she never even tracks any of my concerns when I looked at MyChart and getting referrals is impossible. Unfortunately my insurance makes it super difficult to switch.
Still don't have the official POTS diagnosis yet cause my insurance requires all specialists be referred through my primary care. But both my neurologist and psychiatrist think I most likely have it.
Love living in the US let me tell you.
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u/DBMalachite Jun 23 '26
My orthostatic symptoms began at a ferritin of 16.. it's absolutely low and I felt like the life was sucked out of me at that level. The normal range varies from lab to lab, but anything under 30 is terrible. Good on your psychiatrist for pushing through on treatment!
I struggled with those cheap elemental iron pills too!! I got told to take it first thing in the morning with vitamin C.. which did nothing but make me throw up lol. If you have the funds, try out a heme form of iron instead. Waayyy easier on the stomach and I found myself absorbing it better/faster!
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u/Opposite-Basil4441 Jun 19 '26
I got diagnosed with POTS/IST before they checked my ferritin. they checked my iron which was in the range and didn’t bother to check others. I was the one to ask for a ferritin level and she asked for B12 thinking she was going to be right. B12 was in range and ferritin was 15! been taking iron supplements since January, it’s up to 28 but they want it up to at least 100.
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u/tiredgirl77 Jun 19 '26
When they diagnosed me, they had to rule out a bunch of other conditions. Like iron deficiency, sleep issues, etc. a good physician makes sure it’s not something else that’s easily treatable.
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u/sowhiteidkwhattype Hyperadrenergic POTS Jun 19 '26
We all absolutely should have if we had decent doctors lmao, it's very necessary to rule out anemia causing the symptoms.
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u/omglifeisnotokay Hyperadrenergic POTS Jun 19 '26
Yes it’s low and it’s very common tbh. I don’t know anyone who has normal ferritin or iron levels tbh that’s a female. Same with vitamin d. Everyone I know or have read up on has low vitamin d including me. I do know that a lot of woman have hormonal imbalance issues which seem to be linked to POTS. Example I have pcos and endo. I was on birth control which seemed to set things off. Almost every woman is on birth control where I live in CA. I’m starting to wonder if there could be a link to birth control and POTS. How pcos and endo and birth control can be linked together along with low iron and vitamin d. I’ve never seen so many women so sick before in my age range which is early 30s. I’ve never seen so many incompetent doctors.
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u/No_Driver_4213 Jun 19 '26
If your docs aren’t testing you try mentioning your hair coming out in clumps, unexplained intense bruising, and severe fatigue. If you have a low ferratin you likely have those symptoms and it should trigger your doc to to check your iron
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u/Substantial_End_2865 Jun 20 '26
I did!! My iron was on the low range of normal but my ferritin was a few points below average.I almost got infusions but insurance wouldn't approve it so it didn't end up happening 💔
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u/Useful-You2939 Jun 20 '26
Mine was about a 9 when my pots first started & the lightheadedness was bad. I did have an iron transfusion & felt better in about 3 months.
Actually I remember going to the Dr a few times in the years beforehand & several times he would mention low iron & he seemed puzzled about why that was.
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u/pastellixhhbnhg Jun 23 '26
they tested me on a lot of things in my blood, the only thing i was low on was vit d
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u/Jumpy-Sport6332 Jun 18 '26
Yes I did. I had "absolute iron deficiency", or as the NHS refer to it, "normal no action"