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Low temp 95.F, cold feeling. Seeing Dysauto doctor next week, what if i dont have symptoms during the exam?


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Last night I came home from work around 9pm, where I was sitting all day. I have a desk job, and there is a lot of sitting, although I do have a desk where I can raise up my computer monitors and stand occassionally. Anyway...once at home, I started feeling really cold. Checked my temp and it said 95.3F. I'm not sure how accurate my thermoteter is, but I've had this cold feeling before multiple times, and my temperature would be low. My heart rate was around 55-60bpm. After about 30min-1hr, my temp rose back closer to normal, and then I felt better again. I take Multaq for AFIB, twice a day, and took it that evening at 7pm like always. So I'm not sure if it is this medicine causing the issues or not. 

I'm also seeing a Dysautonomia doctor next week for the first time. My symptoms seem to come and go. What happens if I see them, and I dont have symptoms during that time?

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Well I just took my temp now, and it is showing normal 98.6F. So I guess this thermoter is fairly accurate. So can Dysautonomia cause low body temp?

Is there anything else that could cause these symptoms? I'm not sure what other doctor I can go see about this issue. My primary care, cardiologist, EP, and hematologist all ran extensive tests, and they cant find anything wrong.

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Have you tried doing the "poor man's tilt table test" when you are feeling bad?  You lay down, take your bp/hr, then sit up and take your bp/hr, then maybe 5 minutes later stand and take your bp/hr.  Take it a couple of times at, say, 2, 5, 8,  minute intervals.  See if you heart rate goes up.  I would record your bp/hr at each step of this process.  And, yes, dysautonomia can cause temperature fluctuations.  Most of us have swings in temp at some time or another.  Dysautonomia can cause Reynaud's and erythromelalgia, too.  Where the blood vessels either contract or relax too much.  Good luck on your testing and let us know what they say!!

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Don't worry about being symptomatic at the appointment. When I saw my autonomic specialist for the first time I told him my story and listed all of my symptoms and he knew that I had hyperPOTS just based on that ( he confirmed it with testing ). Yes - I get low temp and elevated temp accompanied by chills or sweats - it is from dysautonomia. Best to make a list of all of your symptoms, regardless if you feel they are from dysautonomia or not. The doc will need to hear all of them so he can decide what is from dysautonomia. Best of luck - I know this appointment is very important. Keep us posted!!!

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I would celebrate and rejoice not having symptoms during your exam, or any other time. 

Your doctor knows that dysautonomia symptoms wax and wane. Finding balance in my daily life has been one of my cardiologist's most important goals--it blows my doctor's minds when I come in looking good and walking well. It means I am doing what they have recommended and they LOVE that. Doctors love to not just know but see you are making that effort--it's in your attitude as much as your numbers. We do swing in and out of severity with our symptoms, everyone of us does. What happens today will not be what happens tomorrow, or tonight or next week. Everyday is a different set of symptoms to match how you tend yourself. Are you getting enough water and sodium, enough of all the electrolytes? Are you walking or doing other exercise? What are you eating? Are you remembering to take all your meds? These are things you can talk about with your doctor at your appointment--let them know how you are handling life and its challenges. Not having symptoms when you visit means you are doing something to reduce them--let that beautiful accomplishment shine through with pride. Do also talk about your worse symptoms and what you are doing to reduce them. If you are having a good day share with whomever will listen. Sadly, a lot of us do not have them too often, so when they come throw a party in your own mind and celebrate those good days. 

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Thanks for the responses. One more thing. Can dysautonomia cause issues where your heart works harder when climbing stairs? 

I've been noticing that going up one flight of stairs at work causes my heart rate to go up to 130-140bpm and I get palpitations. I thought this was caused by Lamictal that I was taking at one time but I am now off that medicine and this issue reoccurred. 

The only other time my heart rate would get so high was when I had blood clots. But I've been checked recently and on a blood thinner and my doctor says I'm negative for clots at this time.

Ive been avoiding the gym and exercising because every time I go up stairs or workout a little bit my heart rate climbs a lot. 

I'm now wondering if this Multaq for afib is causing this issue as well. I'm at a loss for a definite answer at this point. 

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My HR is around the same as yours after I climb stairs. Showering it can go even higher so I really have to take it slow and remember not to turn the water to boiling temperatures (my favourite thing!) 

I've also had body temps as low as 33C (91-92ish F) which is the worst! Dysautonomia definitely throws off your temperature regulation.

Hope you're feeling better. All the best!

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