Shane Posted June 15, 2018 Report Share Posted June 15, 2018 TTT was negative for both tachy and hypo. Cardiologist 2 days ago put me on Florinef (0.1mg 1x) anyway because it still seems symptoms point to low blood volume. Endo has done every workup (negative except slightly high T4free and RT3) except CRH Stimulation test, but may wait as I'd have to get off Florinef for a couple days. I have been a bit low on potassium over the past year but ok lately. I'll see how it goes, but want to be prepared for next step, because I am basically home bound other than doctor visits (strangely I feel less symptoms when I go there, but crash a bit most times I come home) Symptoms: 45 days of h***. Low core body temp in AM 96-97 improves by late afternoon, palps 24x7 inescapable, SOB better as the day progresses but always there, severe head rush on postural changes that has improved as time has passed (still there though - a bit tachy but always settles down), eating causes SOB, later meals better, energy pretty much in the crapper. Cardiologist knows EP at Hartford hospital if I need to go that way. How long is the queue for Vanderbuilt, Mayo, NYU Lagone, etc? It seems like it freakin' 6 months. Just want to keep all options open. Thanks. Quote Link to comment Share on other sites More sharing options...
WreckingHotelRooms Posted June 15, 2018 Report Share Posted June 15, 2018 Sorry to hear that, I had TT today also that showed nothing so I know how you feel. My next appointment is an ATOMIC Neurologist - however I have clear nervous system symptoms, like tremors, sweating a lot, huge pupils. This doesn't really sound like it would be any help for you. Wishing you all the best though Quote Link to comment Share on other sites More sharing options...
Shane Posted June 22, 2018 Author Report Share Posted June 22, 2018 So frustrated. Called the cardio back, they said since the Florinef didn't make any difference, there was nothing more they would offer. I asked for a referral for sweat/valsalva,etc. testing (since I already had the tilt) or at least someone they knew that had experience with autonomic issues...they said to get those tests you have to go to the ER, ***!! Ok, so whats the plan, I guess I will take 3 showers in a row, take a 5 mile walk in 90 degree weather and then plop myself down in the Yale ER. Quote Link to comment Share on other sites More sharing options...
KiminOrlando Posted June 22, 2018 Report Share Posted June 22, 2018 My doc ordered those tests. The ER down here only makes sure you aren't going to die before you call the doctor the next day. I hope your strategy pays off. Quote Link to comment Share on other sites More sharing options...
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