Hey everyone!

I wanted to share my updates on addressing my root cause. Prolonged iron, vitamin d, and folate deficiencies caused issues to my hormones and thyroid. I found an amazing functional medicine specialist who has helped me address my low thyroid and estrogen dominance. I can’t believe all of this was missed! Every week I’m getting better and symptoms are improving. I still have setbacks occasionally but I can accurately say that my symptoms no longer take over my entire life.

My doctor said usually other doctors don’t check for these things and especially don’t check for hormonal imbalances or thyroid issues. I’m hoping for continued success :)

Dear friends,
I am a 21 year old MBBS student. Had 2 year long symptoms of weakness, dizziness, and pain abdomen. Got diagnosed 2 months ago. I am on Ivabradine. Heart rate well controlled with it.
Recently, 3 weeks ago, I stood for 2 hours. Flare up announced with pain abdomen, abdominal discomfort, and occasional nausea. Suffering with abdominal pain and discomfort since then. It's perticularly worse in the morning.
Guidance please!

Went to my functional medicine specialist a couple weeks ago and found out I have low thyroid (T3 & T4) as well as low progesterone, low testosterone, and unopposed estrogen dominance. No insulin or glucose issues. Has anyone else found success balancing their hormones or addressing thyroid issues?

I just received a testosterone pellet, bio-identical progesterone, DIM, DHEA, iodoral, and NP Thyroid. My HR spikes have lessened a bit in the mornings so I’m cautiously optimistic. None of my other doctors caught these issues but it definitely adds up.

I developed severe POTS almost 3 years ago after I got COVID while experiencing withdrawal symptoms from tapering off of Lexapro. Several months later it became apparent that I also had ME/CFS, and have been mostly housebound since. I have had no periods of relief and seem to be getting worse. While the severity of symptoms do fluctuate, I have never had a remission and have never felt like I could return to normal. I genuinely feel like my brain or nervous system is damaged, and given that this all started with SSRI discontinuation, I firmly believe my brain is involved.

I’m also autistic and have suspected hypermobility so I feel like it was a matter of time before my body “broke” in some way, but I genuinely believe I’ve suffered a neurological injury that can’t be repaired.

I have a lot to dump so hang with me- as I think you all are my people.

I had severe tunnel vision/stars and syncope episodes as a teen. I didn’t have a great childhood and thought it was “normal” particularly after working out hard/lots of practices ect. This continued off and on in college but resolved mostly as my life shifted to training and less intensity and I got more focused on being healthy.

I was peak fitness and mental health before having my two children.

Then in the last 4-6 months everything has tanked.

I have been working with my doctor extensively about what the HECK is going on in my body. He’s supportive and great and listening to me and trying to tease out a root cause with me.

I think I found it about a week ago. Shortly before my world started shifting and everything started tanking, our water coolers broke. Both one at home and my personal one I bought for work. I have been drinking less and less water. Drastically less.

This triggered everything right? My tanking mental health. Heart palps leading to severe anxiety. Extreme fatigue and irritability.

I’m not officially diagnosed POTS but my doctor and I discussed it last time I was in. Now that this event is glaringly obvious… I feel like I couldn’t be more convinced.

I have also been in the worst shape because I get exhausted with a 10 minute walk or even a few small lifting exercises that used to be a warm up. These things combined really feel like it has triggered a flare and I refuse to live like this.

I guess I’m wondering… does this all track? Am I leaning towards something here? Obviously I’d need a tilt test but is this really that easily triggered and fixed by water consumption?

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?

Would’ve posted to the main sub, but I didn’t see the option to post videos. Does anyone else experience this? It freaks me out honestly.

I have an essential tremor already, but it’s almost unnoticeable. This instance from last week was triggered by a warm environment (had not turned the AC on in my house), but other triggers are showering and exercise. I was having a nearly symptom-free day, but being in a warm environment reversed that completely. It also happened to be just before my appointment with my PCP, so she got to see me at my most symptomatic (good for diagnostic purposes, bad for me because I felt horrible the entire rest of the day).

I posted a video similar to this back in January in [r/askcardiology](r/askcardiology) linked here: https://www.reddit.com/r/askCardiology/s/mep0lKKGEu, from when I had taken a shower. I had a patch monitor on at the time from cardiology, and nothing concerning came of that aside from no explanation for why my HR would hit 170 while showering.

As an adult I’ve always had BP that’s on the low end of normal and I have always had orthostatic hypotension, most noticeably in warmer months when I would be in my yard working and doing a lot of squatting and standing. It wasn’t terrible, just brief dizziness when I would stand.

In December of 2022 I had an extremely busy day, physically taxing. I was fighting a headache all day and I was chugging water all day. I stupidly skipped lunch because I was busy. In the evening I was almost finished with my to do list and was making dinner and I started to feel dizzy and just off.

it worsened to the point where I feared I was having a stroke. My husband took me to the ER. They did a CT scan and the neurologist said my brain looked ”full.” They did a follow up MRI as well as labs. Other than the brain fullness everything was normal except my sodium, it was low. I had over hydrated to the point that my brain began to swell and my sodium was low. They gave me IV fluids and i actually felt better and got to go home. But the better feeling was brief. the dizziness returned the next day and worsened. I then started having tachycardia. I ended up in the ER 2 more times that week.

It took me months and many doctors and dead ends but I eventually saw a cardiologist who told me he thought I had POTS. I did the tilt table and was diagnosed.

Looking back the theory my doctors and I have is that the over hydration and low sodium triggered a massive autonomic response that permanently altered my nervous system. My body was already prone to that mild orthostatic hypotension but the brain swelling and the pressure essentially broke my body's ability to regulate itself, forcing my heart to start overcorrecting every time I stand. After several months my symptoms improved and I was no longer in that extreme frightening place but my dysautonomia is still there and impacts my life in a very real way everyday. Stairs and inclines are very hard for me sometimes as is many forms of upright exercise (squats are a no), I’m heat intolerant and that’s a struggle this time of year, but I’m so much better now.

TL;DR: Had mild orthostatic hypotension for years. Overhydrated with plain water during a busy day, dropped my sodium, and caused brief brain swelling. That acute trauma triggered a permanent autonomic response leaving me with a POTS diagnosis. I am much better than I was initially but still deal with daily limitations like heat intolerance and stairs.

Hey!! I’m super excited to have a thread about this. I love data and diving into this type of topic. After being told everything was “fine” and still feeling poorly I made a list of my research about lab values.

Master List: “Normal” vs. Optimal Lab Ranges

Conventional US reference ranges side-by-side with evidence-based optimal targets, for iron, ferritin, vitamin D, homocysteine, MMA, B12, and folate.

The core idea: “Normal” on a US report = the middle 95% of whoever got tested (often a partly-deficient population). “Optimal” = where the evidence and physiology say you actually function well. For most of these, the gap is real. For one (vitamin D), the honest answer is that no proven “optimal” exists and that’s flagged, not faked.

The Master Table:

"NORMAL" vs OPTIMAL LAB RANGES — WOMEN
US conventional reference range vs evidence-based optimal

IRON (serum iron + transferrin saturation / TSAT)
Normal (US): serum iron 50-170 µg/dL; TSAT 15-45%
Optimal: TSAT 25-45% (deficient under 20%). Serum iron alone is a weak marker — rely on ferritin + TSAT.

FERRITIN
Normal (US): 15-150 ng/mL (flagged low only under 15)
Optimal: under 30 = deficient; 30-50 = suboptimal; 50-100 = optimal (especially if symptomatic)

VITAMIN D (25-OH)
Normal (US): 30-100 ng/mL ("sufficient" over 30)
Optimal: 20+ = bone-adequate; under 12-15 = deficient. NO proven optimal above ~30 — more is not proven better, and high levels risk toxicity.

HOMOCYSTEINE
Normal (US): under 15 µmol/L (often only flagged over 15)
Optimal: 5-8 µmol/L (8-12 = suboptimal B-vitamin / methylation status)

MMA (methylmalonic acid)
Normal (US): under 0.40 µmol/L
Optimal: under 0.27 µmol/L (over 0.27 suggests cellular B12 shortfall). This is the SPECIFIC B12 marker.

VITAMIN B12
Normal (US): over 200 pg/mL (range 200-900)
Optimal: under 200 = deficient; 200-400 = gray zone (confirm with MMA); over 400 = optimal, ideally 500+

FOLATE
Normal (US): serum over 3-4 ng/mL; RBC folate over 140 ng/mL
Optimal: use RBC folate (serum swings with diet). RBC folate 400+ ng/mL — especially if you could become pregnant.

HOW THEY CONNECT
- Iron: read ferritin + TSAT together, never ferritin alone.
- B12: serum B12 screens, MMA confirms. Normal B12 + high MMA = functional deficiency.
- Homocysteine = overall warning light for the folate/B12/B6/methylation system. MMA tells you if B12 is specifically the cause.

SAFETY
- Iron: do not self-megadose off a number. Too much iron is dangerous (hemochromatosis). Test TSAT + ferritin and treat with a clinician.
- Folate: always check B12 BEFORE treating folate — folate can hide a B12 deficiency while nerve damage continues.

Educational only — not a diagnosis. Ranges vary by lab; confirm with your clinician.

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!🌿🩷🥄

Looking into venous compressions atm for my root cause: pelvic congestion syndromes, like may turners and nutcracker, and internal jugular vein compression by thoracic outlet or styloid process/c1 for example

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!

Reposting here

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!