Making great progress by addressing my underlying deficiencies! Still unbelievably stunned I was never tested for any of these for the decade I had POTS…The correction in HR and HRV was so quick it’s unbelievable.
My mom and sister both have POTS as well. My sister and I were diagnosed around the same age and my mom was diagnosed about two years before me. Some say POTS is not genetic but it clearly is to some extent? Ours is not autoimmune, not related to any GI concerns or hormonal concerns, none of us were sick before symptoms started. And all of has had it pre-covid… any theories?? Or does anyone else have family members who also have POTS?
Linking a foundational article for reference: Journal of the American College of Cardiology (2019) by Bryarly, Phillips, Fu, Vernino, and Levine.
https://www.jacc.org/doi/10.1016/j.jacc.2018.11.059
Summary:
This review establishes that POTS is a heterogeneous clinical syndrome rather than a singular disease. It emphasizes the necessity of identifying the underlying physiological factors/drivers. This article shows the different subtypes of POTS and maps out how these subtypes overlap with catalysts such as connective tissue disorders, autoimmune conditions, and other factors.
Hi everyone!
One of my friends created a discord and facebook for support if anyone would like to join!
Hiii!✨️
Thank you SO much for your interest in joining The Spoonie Sanctuary🥄🩷🌈✨️
Here are the invite links for Discord and Facebook if you’d like to join us!
Discord💜: https://discord.gg/kFM4FhA3P
Facebook💙: https://www.facebook.com/share/g/1JELYUCmqF/
This is a small, gentle space for people with chronic illness, neurodivergence to exist without pressure.
I just created it them so please read the rules as well as the welcome post and please introduce yourself if you'd like!🫶🏻
You’re welcome to join wherever, or just take your time with it! No expectations at all, and if you have any questions at all please let me know!🌿🩷🥄
What underlying factors are you currently investigating relating to your POTS, or what do you suspect is related?
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!
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).
Thought I’d share my first iron infusion update. After being ignored by every single doctor I saw, I finally had to save up money to pay out-of-pocket for an infusion. Happy to report back that the first infusion alone improved my health so much! My goal is to get my ferritin above 70 to see if it reduces my POTS symptoms. Turns out I’ve been living with an iron deficiency for the past decade. Could this be the answer to my POTS? I’m not sure yet but it’s worth a fucking try ☺️
If your autonomic nervous system is actively crashing but your doctor is pointing to a spreadsheet and telling you your bloodwork is "normal," you are likely caught in a fundamental statistical trap. Been there done that.
The medical system operates on a critical, often unacknowledged premise. It treats the patient as a statistically average person, rather than evaluating individual biological requirements. This failure is especially obvious in standard ferritin (iron storage) reference ranges.
When a laboratory establishes a "normal" reference range for a biological marker/lab ranges they pull the bloodwork of the local population, plot the data on a bell curve, and chop off the top and bottom percentages. If the population they are testing is chronically deficient or depleted, the statistical "average" drops into the basement. The medical system takes a massive, population-level health failure, plots it on a graph, and calls it "normal."
This is especially an issue when it comes to the differences between lab cutoffs for males vs. females. In most standard labs, the bottom cutoff for a man's ferritin is 30 ng/mL while the cutoff for a woman’s ferritin is 15 ng/mL. Why? Do men need more ferritin? Quite the opposite. The biological requirement for ferritin does not change based on gender. The range is lower for women strictly because the medical system normalizes uncompensated blood loss (menstruation) without proactive iron replacement. They averaged a population of chronically iron-depleted women and standardized the deficit.
So when you go to your doctor with a ferritin of 20 while feeling fatigued, experiencing hair loss, autonomic dysfunction, etc. you will not be flagged as low even though a male would. Hematologists and other specialists have frequently set the cutoff as 30 for both genders. Your labs are not “normal” and you’re not crazy. You’re being compared to a deficient population and being told you’re normal because you’re also deficient.
Dysautonomia and POTS specialists frequently argue that a ferritin of 50-100 is ideal for POTS. (And in general). Raise some hell out there! 🔥
How many of yall had or have an iron deficiency alongside POTS? Any improvement with raising ferritin levels or reduction in symptoms?
Welcome to r/POTSRootCauses. As the mod and creator of this subreddit, I thought I’d share my story and why I created this subreddit.
I was diagnosed with POTS 4 years after I started having symptoms. I have lived with POTS for almost 8 years. Throughout my journey, I tried every beta blocker on the market, every treatment, every exercise protocol, and still became sicker and sicker each year. For the past 8 years I have studied POTS relentlessly and firmly rejected the premise that POTS is incurable for everyone and has unknown causes.
I have argued that for many of us, POTS is a compensatory reaction to a misfiring system caused by something else. For years I was passed around from doctor to doctor and lurked in the POTS subreddit for support. However, I quickly realized it was not a space I could stay in any longer. I pulled all my own labs, rejected the idea POTS is a mystery box, and found severe deficiencies all over my labs. I have now been working to correct these deficiencies and seen symptoms slowly start to improve.
HOWEVER, after attempting to share these findings, I quickly realized there is not a space for those of us who refuse standard answers from medicine and those of us who wish to discuss potential cures and treatments that are off the beaten path. Many POTS groups have strict rules for discussing being cured or investigating root causes. Not here. Say what you want. Talk about LMNT and don’t worry about a message popping up saying “this community does not promote LMNT due to political differences”
Welcome to the Wild West. It’s time to get angry folks. Let’s figure this out together. As an INTJ and science nerd, I’m excited to discuss findings and compare labs with others. Enjoy!
Hey everyone! I'm u/Level_Run1357, a founding moderator of r/potsrootcause.
This is a secondary subreddit/home for all things related to POTS and potential root causes, uncensored.
If you have POTS and refuse to accept the diagnosis as the end goal, have an interest in investigating root causes, and want to discuss theories and helpful tips/tricks, this is YOUR place. We don’t ban you for discussing what fixed your POTS or reduced symptoms. While there is not a single “cure” for POTS, we do not believe POTS is incurable for all. Here we hope to find the underlying root cause for our individual biology and manage it effectively.
What to Post
Post anything that you think the community would find interesting, helpful, or inspiring. Feel free to share your thoughts, theories, labs, or research. We welcome anything and everything related to POTS.
Community Vibe
We're all about being friendly, constructive, and inclusive. Let's build a space where everyone feels comfortable sharing and connecting.
How to Get Started
Thanks for being part of the very first wave. Together, let's make r/potsrootcause amazing.
I have a little before bed rant I have to get off my chest. I’ve always known lab ranges for men and women differ, but holy crap is it annoying. For example: Ferritin (iron stores) for men is 30-566 ng/mL and for women it’s 15-205. I’ve even seen some lab ranges saying 13-190 for women. Why? Because many women are iron deficient and the sample pulled for those ranges is not necessarily a “healthy” population. Men and women have the same iron needs. (One could argue women maybe a bit more so due to menstruation).
So… 25 for a woman would be “normal” but 25 for a man would be “deficient”. My boyfriend is easily able to be taken seriously and treated for his levels but I’m told “everything is fine and normal”. And we wonder why we can’t get medical help. Make it make sense.
I have a little before bed rant I have to get off my chest. I’ve always known lab ranges for men and women differ, but holy crap is it annoying. For example: Ferritin (iron stores) for men is 30-566 ng/mL and for women it’s 15-205. I’ve even seen some lab ranges saying 13-190 for women. Why? Because many women are iron deficient and the sample pulled for those ranges is not necessarily a “healthy” population. Men and women have the same iron needs. (One could argue women maybe a bit more so due to menstruation).
So… 25 for a woman would be “normal” but 25 for a man would be “deficient”. And we wonder why we can’t get medical help. Make it make sense.
Curious is anyone here has POTS and a folate deficiency or high homocysteine. I found some interesting links. Symptoms like craving bleach or chlorine? Ridged fingernails?
I’m curious if anyone else has POTS and a MTHFR mutation. I found some interesting links.
I guess the downside of having a specialist who “knows eds” is that every issue is now chalked up to it or a comorbid conditions. Like I’m pleased my doctor believes me but also, there’s no inquisitiveness into my issues… kinda the same boat I’d be in with a run of the mill pcp lol
Ohhh your heartrate goes from 70 to 145 when you stand up and you become woozy and have to sit down because you might pass out? POTS
Can’t bend over because your head gets so heavy and dizzy you feel disoriented? POTS!
Basic tasks like cleaning and going on a casual walk skyrocket your heartrate to the 150s? Welcome to the POTS club.
Plus a ton of other misc symptoms like poor exercise abilities, tremors in sleep, extreme anxiety, general malaise…
My main pcp didn’t buy this and neither did I. He did a full panel of bloodwork and we spotted a mild iron deficiency, explained by only hitting 30% RDA in my diet. It wasn’t even super low; my ferritin was high 30s which most doctors would ignore unless they’re super up to date. Turns out ideal ferritin should be closer to 100 for women, and in my case that’s proven true.
4.5 months of an otc daily supplement later, my resting heart rate is 61, and when I stand up it goes to the 80s briefly and then immediately drops down from there. I bent over to clean my baseboard today. Yes!!
I literally gained my life back because of a stupid iron chewable.
Later, I found a study that says iron deficiencies must be ruled out before a POTS diagnosis is landed on. So do yourself a favor and get a full iron work up if you haven’t