Positive ANA + Jo-1, thyroid issues.. overwhelmed and trying to understand what’s going on
Hi, I’m new here and just overwhelmed and trying to figure out what’s going on with my body.
For background, I was diagnosed with endometriosis at 15 and have had two laparoscopies. I’ve always had random symptoms on and off, but over the past few months things have escalated pretty quickly.
I recently moved states, and my mental health has improved a LOT… but at the same time my physical health has gotten worse. It honestly feels like my body finally feels “safe” and is now unloading everything.
Here are the main symptoms I’m dealing with: • Heart rate spikes up to 140 just from standing, walking, or basic tasks • Daily fatigue, shakiness, and feeling weak, legs feeling heavy • Midday “crashes” where I feel like I physically can’t function • Brain fog / “wired but exhausted” feeling • Heart rate dropping into the 40s - 50s at rest • Rashes on face, chest, and stomach triggered by heat, stress, or crying • Sneezing fits for hours after crying or reactions to my own sweat • History of hypermobility (joint issues, past dislocations, etc.)
Some of my recent labs: • Positive ANA (gave me no numbers just said positive) • Jo-1 antibody: 1.9 • CO₂: 21 • Free T4: 0.91 • TSH: 5.46
I also did a DUTCH test that showed: • Low cortisol • Low estrogen • High androgens • “Adrenal fatigue” pattern
Right now I’m being referred to rheumatology and cardiology, but the process has been slow and honestly overwhelming.
I strongly suspect some combination of: • POTS • MCAS • hEDS
The Jo-1 result obviously raised concern for antisynthetase syndrome, but I’m honestly unsure how well that fits overall. I have noticed when I get colds now I do cough alot which o rarely ever do and cough up mucus but it goes away after a week or so. Im just confused.
I feel stuck in this in-between where something is clearly wrong, but I don’t have answers yet.
I’m also a mom of two young kids, so trying to manage this day-to-day has been really hard.
I guess I’m looking for: • Has anyone had a similar mix of symptoms + labs? • If you had a positive Jo-1, what did it end up being for you? • Did anyone start in the POTS/MCAS direction before getting an autoimmune diagnosis (or vice versa)? • What helped you manage symptoms while waiting for answers?
I’m trying really hard not to spiral, but it’s a lot. I’d appreciate any insight or even just hearing I’m not alone.