Hi everyone, I’m new here but hoping I may bother you for some advice and hopefully talk me off the ledge of hypochondria? My doctor is on vacation and I feel like I may finally be putting together the puzzle of my health issues over the last few years.
It all started a couple years ago with increasingly worse PVC’s so I start a beta blocker which stopped them but then I start having super high heart rate and shortness of breath walking up inclines or stairs. That turned into high heart rate just with standing. I pass my echo and stress test so I’m thinking I have POTS. Doctors just shrug their shoulders. Some say I’m too old at 48 for POTS. (Postural Orthostatic Tachycardia Syndrome)
Then last December I wake up with pelvic pain and discomfort under left rib. I’m wrongly diagnosed with kidney stone. Still not feeling well in February so I have a CT scan which showed multiple ovarian cysts and a ruptured breast implant. Ok so maybe my body is having an autoimmune response to the implant rupture? I’m fatigued with joint pain but autoimmune testing neg. Started birth control pill to help shrink ovarian cysts. Maybe cysts and possible adhesions from past surgeries causing left abdominal pain? Had implant replaced and feel almost 100% better! For 3 months I feel great then while in Italy on vacation the fatigue and left rib pain returns. Over the next few months new symptoms show up with increasing fatigue. Squiggly flashes in right eye, headaches waking me from sleep, handful of sweaty nights, ears ringing, increased bone/joint pain.
So last weekend I get a liter of fluid with vitamins and a shot of Toradol to give me some pep. I have the MTHFR mutation which supposedly causes vitamin B12/folate deficiency so this should make me better, right? Nope, the extra fluid must have been too much for my body. A couple days later I’m in the ER with chest heaviness, high BP (170/110), headache, lightheadedness. High d dimer test, hematocrit just barely over high, clear CT and chest x ray so I go home but I keep trying to figure out why did I feel better after surgery? I notice on my blood work over the years that it has slowly crept up. Is it possible the blood loss from surgery is why I felt better? This leads me to thinking rising blood numbers and left rib pain caused by an MPN so I take a look at my DNA data from 23andme and see that I have JAK2 mutations. My B12 level from last March was high at 1400.
Most people don’t seem to have symptoms until their H & H is super high and I’m having symptoms with a hematocrit just barely over normal so I’m really hoping I’m completely off the mark thinking I have PV. Could the IV fluids show my H & H to be lower than they actually are? Oh and one other weird thing. I have an app I use to check my heart rate and it also measures blood viscosity which I always ignored until it began warning me my blood is too viscous.
Thank you so much for your time and advice!