New and confused about symptoms-Freezing cold

[litchfield42]

I was diagnosis about 4 months ago with Dysautonomia.  I thought I had found a great doctor, (which was about a 3 hour drive to get to) but I was wrong.  Or maybe, I shouldn't say that he is not a good doc but never calls me back.  Here's my questions:  I get sooooooo cold, even on warm days.  I decided to get a thermomitor and take my temperature.....its averages around 96.3, but one day went as low as 94.9.  Does anyone have this problem?  I know its common to have heat issues, but how about cold?  I also have very low blood pressure......it averages around 90/59 and has went as low as 69/35.
Also, I have recently went for a endoscopy and was told that the open/close value to my stomach is open (as well as eosinophilic esophagitis).  Does anyone know if this could be caused from the autonomic nerves working incorrectly?
I'm currently taking Midodrine to help with my blood pressure, no change yet.
The good news is, as I sit here researching I think I have found another specialist that is located about 30 minutes from my house!!
Please share your comments.............I'm so concerned!
Thanks

[enzymelover]

   My son had occasional hypothermia (usually around 96, but was 95 once!) 3 years ago, AFTER he was started on Thyroxine for hypothyroidism. His endocrinologist didn't believe me, because of course, Thyrox. should keep his temp. in normal range, but it didn't always. I know he was absorbing it; he had adrenal collapse one week after he started it, and had to start Hydrocortisone for low blood pressure and cortisol loss. (He had a pituitary tumor). I think his tumor may have caused hypothalamus damage, leading to his Dysautonomia, but his surgeon doesn't think so. Raising his T4 just a little bit causes tachycardia.
Now he is too warm most of the time, never hypothermic anymore.

Because of his digestive problems, I have sometimes wondered if his pyloric valve is getting "stuck" on occasion. Interestingly, my pyloric valve would not open a few days after I was born. I had to have surgery at 14 days old to fix it. That was 55 years ago! Maybe something genetic here? (We're all redheads so, recessive genes?

[auntissie]

I  have low body temp. too.  All my thyroid test come back normal.  One doctor said I have a problem with the T4 Converting to T3.  So we tried T3 to see if it would get my body temp up.  I never could and it affected my heart rates.  Not good.  I don't suggest trying this.  They call it Wilson Syndrome.  But, now if I'm really tired I have freezing spells and then they go to hot flashes, later.  I'm sure is connected to the ANS.

[CHRISTYDRAKE]

The autonomic nervous system regulates your body temperature, so a low temperature I'm guessing could be a problem with this.  My son's regular body temp is around 97.  He doesn't experience the coldness though, he gets hot spells.

Coincidentally, when my son was a toddler that muscle which opens and closes to the stomach was also open.  His pediatrician said it just needed to strengthen to close, but I now wonder at alot of stuff he had then were symptoms or a precurser to the dysautonomia he has now.  

[KTFM]

My nose and head gets so painfully cold at night that I have to go to bed. It always happens when my elbow feels inflamed. Three years ago a physiotherapist accidentally stuck a need into my ulnar nerve in my elbow. Ever since then I have had these intermittent autonomic symptoms. In the heat I feel very clammy and can't cool down, but I can cope with that. It is the cold symptoms that are really debilitating. I am even considering moving to a warm country as I can't face another winter in pain. I did see an autonomic specialist a while back who did all the tests with tilt table etc but I was in remission then. He said to increase my salt and water intake and to wear support tights. These measures have not helped. He did also suggest low dose Clonidine as a last resort. Does anyone have experience of using Clonidine for temperature regulation/to improve peripheral circulation?