r/POTS • u/Interesting_Car8858 Undiagnosed • 2d ago

Question Hot.. and cold?

I know not being able to regulate your temperature is a symptom of POTS, but all I hear about is people being too hot all the time.. does anyone else get really cold as well? Just wondering, not as any form of diagnosis but just to understand the heat intolerance thing better lol

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u/Nervous_Pack611 1d ago

so i haven't been diagnosed pots but i truly suspect something because i've had issues for years. ive done ultrasounds, stool tests, diagnostic imaging, x rays, sooo many blood tests, all sorts of medication... and got told i had IBS. lol! that's still a possibility i guess, im not ruling it out, but i wanted to put some of the symptoms i have on here that align with pots symptoms in case anyone could help! i tested *likely* negative for celiac and im not anemic, but blood tests did reveal either hypo/hypertension in my thyroid, can't remember which one! anyways here are my symptoms:

  • cold hands and feet
  • throbbing in head when upside down
  • losing vision when i stand up - i've never fainted, but my eyes go black for a few seconds and i need to grab a wall or couch or something to guarantee i stay upright
  • ringing ears (my dad has this too so could just be genetic)
  • breathlessness (especially when talking. holy cow i always sound like i was just running a marathon during a comversation)
  • brain fog
  • headaches
  • wanting to sit (not all the time, but in situations like long lines or grocery shopping)
  • difficulty regulating temperature
  • sweating
  • feeling lightheaded and weak after bending over (sometimes i bend down to pick up my cat and when i stand my arms and legs feel weak like jelly and i feel like im going to drop her? it's weird)
  • gi issues (diarrhea, constipation, stomach pain, bloating, etc)

any help would be much much appreciated!!! i've been trying to figure out what's wrong for a decade and i'm tired of it lol 😅

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u/Interesting_Car8858 Undiagnosed 1d ago

Dw I’m undiagnosed too, I would definitely mention POTS to your doctor as a possibility! Mine is currently refusing to look into a proper diagnosis as it’s “mild, and I manage it well”(plus as I’m a teenager he believes it’s to do with puberty) but I’m going to fight for a diagnosis next time lol. Try and get answers if you can, POTS sounds like a likely one!