Body temperature regulation

[vepa]

Does anyone else have really drastic changes in their body temperature? I have been having extreme swings. I drank a cold glass of water too quickly the other day and my fingers and toes turned to ice and I started shivering. The thermometer said my temperature was at 94.6 (I double checked it with a second thermometer and the second one said 95.1). Then I took a hot shower to warm up and when I got out my temperature was at 99.7.  

I'm hesitant to even bring it up with my doctor because he already seems to think I'm too obsessed with paying attention to things like my heart rate and blood pressure and he's going to think this is my newest level of neurotic. But if these numbers are accurate, that means my body was literally in hypothermia. I'm not sure what that means from a medical standpoint or if it's dangerous, but it definitely freaks me out. 

[DizzyGirls]

I know what you mean by doctors thinking we are too obsessed with things....drives me nuts!  I know what I would do is to make this a science project.  Have a hypothesis and set out to prove it as theory.  You will have to do this a number of times, time and date it, temps, too.  After a couple of weeks, physically show the doctor your paper of times, dates, and temperature readings.  My girls' POTS doctor tells us to do that.  She wants data, more than just a one or two time occurrence. 

[Lily]

I second the suggestion to collect data (but then, I'm a science professor, so of course I would).  In order to prevent the introduction of accidental bias in your measurements, you might try taking your temperature at the same time every day, maybe 3 set times.  And then also add in additional times if you feel particularly hot or cold.  I don't know how long you will need to do this, but if you keep it up long enough you will have a nice data set to show your doctor.   

[Guest ANCY]

I also agree with trying to find more data! There are apps out there as well, I'm sure you could find one which would meet your needs. I would also include activities from around the time of the recordings. I did this for a period of time myself and did learn quite a bit. Something else you might want to add is your sweating pattern, not sweating can allow your temp to rise higher than normal.

[corina]

I agree with the others on getting more data. Also, for me mestinon works wonders on keeping my temp up. You may want to ask your doctor about this. 

[vepa]

Thanks guys! I'll work on collecting a little spreadsheet of dates and times and measurements. 
I think I get a little too anxious about talking to a doctor about anything these days. Maybe it comes from years of being dismissed prior to getting a real diagnosis, but I always feel like they're going to laugh off anything I say, or tell me I'm being ridiculous for being so obsessed. I even find myself questioning the accuracy of my equipment (heart rate monitor, thermometer, blood pressure cuff, etc.) because I feel like the doctors aren't going to believe me and maybe I am making a big deal out of nothing. I guess this is also a good exercise in working on my self-advocacy skills. 

[Talon123]

I love how these docs think you check symptoms too much. Before hyperadrenergic pots I was a cage fighter, scared of nothing, and even walked to the hospital with a broken leg. This disorder has brought me to my knees in tears. Don't let them tell you you're being a wimp. 

So ive found as far as heat and sweats I've just accepted it, I'll be sweaty. When you get bone cold however and it feels like your body is shutting down its intolerable. I've found b vitamins to be the best to keep you warm, niacin especially. Not to hijack the thread, but has anyone else noticed their symptoms: temperature or otherwise are much worse in the morning? My post 8pm functioning seems to be something I could live with. Every day from 8am to 7pm is a test of how much more can I take?

Ive also found doing some exercise helps me not be too cold for hours afterwards. Even just 20 minutes on the elliptical. I know for folks with standard pots though that can be tough

 

-Mark

[Ashleigh]

I know I’m prone to strange changes in body temperature, and often find that my temperature is very low at times when I feel very hot and dizzy, so I think body temperature regulation can definitely be a problem.

I’m not doubting your temperature results (POTS/dysautonomia can make our bodies do weird things), but those temperatures really are very low, so I understand your concern. You mentioned that you drank a glass of cold water before taking your temperature – did you take it orally? The water could have temporarily changed your mouth temperature, so your thermometer reading may not have been an accurate measurement of your true body temp. If there was a long gap between drinking the water and taking your temperature, or you didn’t use an oral thermometer then nevermind, you just had seriously low temps! 

[vepa]

6 hours ago, Ashleigh said:

I know I’m prone to strange changes in body temperature, and often find that my temperature is very low at times when I feel very hot and dizzy, so I think body temperature regulation can definitely be a problem.

I’m not doubting your temperature results (POTS/dysautonomia can make our bodies do weird things), but those temperatures really are very low, so I understand your concern. You mentioned that you drank a glass of cold water before taking your temperature – did you take it orally? The water could have temporarily changed your mouth temperature, so your thermometer reading may not have been an accurate measurement of your true body temp. If there was a long gap between drinking the water and taking your temperature, or you didn’t use an oral thermometer then nevermind, you just had seriously low temps! 

 

The first reading was orally, and I had the exact same thought, which is why I decided to double check it with a second thermometer via the ear and got the 95.1. But then someone told me ear temps are supposed to be higher than oral temps so that means my oral temp would've still been lower than that?? Idk. I've started checking my temperature rather frequently out of curiosity, and it seems to drop low a lot more often than it goes high. Either way, I think I've only ever actually seen it at the expected 98.6 once.  But it gets drastically less regulated and fluctuates back and forth a lot when I've had less sleep or if I'm stressed out. For example, this morning I had to get up at 4am and drive 5 hours to another town for work. I stopped at a convenience store to buy some coffee and their A/C made me start shivering uncontrollably. I went back to my car and blasted the heat and checked my temp and it said 96.0. Just from their A/C! So it's definitely something that I'll be talking to the doctor about soon.