Can’t regulate body temperature.

Have you had a biopsy for small fiber neuropathy? That is a problem with people with neuropathy the body does not regulate temperature in the body. The other test is a EMG/ nerve conduction test. A neuromuscular neurologist does the testing.

Not tried that. But it is a starting point and I really appreciate the help. A neurologist sounds like a good place to start. Thank you.

I have had a nerve condition study before but it was long before this issue

Have you had hormone levels checked? Extensive thyroid panel from an Endocrinologist? I have the hot/cold issue all the time and I have both Hashitmoto's & Graves Disease....both are thyroid issues. Primary doctors do not check all of your thyroid levels. My Hashimoto's did not show up in my TSH, T3 & T4, but, in a complete thyroid panel with an Endocrinologist. My Graves Disease showed up in my TSH. I rotate between Hashitmoto's and Graves disease all the time.

Praying for you to get some answers soon. Blessings....

I second the neurologist and you need a small fiber biopsy rather than an EMG. This is your autonomic nervous system. Although, if you have a problem there, the neurologis is not likely to help. The next dr. would be a reumatogist for a full autoimmune panel, including Sjogren's Disease.
The other about the TSH etc is a good one also. Best Wishes!

I have day/night sweats and chills and IBS-D problems. I have been on doxycycline for a month and now they are watching what happens when I am off. I am journaling my symptoms daily. I have had low body temp for years, no doctor really gave it a second look. I see an Endo for thyroid and parathyroid issues, a GI doc for IBS-D and an Infectious Disease doc for the night sweats. It is a mess trying to parse symptoms and get the right doctor to look at their portion of the problem. I also have PMR (Poly Myalgia Rheumatic). It is a problem that is not at all well understood and treated by a Rheumy.

My Infectious Disease doctor cannot determine the cause for my sweats and chills, all his specialized tests come back normal, so he is reluctant to keep me on an antibiotic. Doxy helps more than other meds. Amoxicillin eliminates the night sweats (they can be drenching) but they return quickly. Not so with doxy. My CBC and Comprehensive Blood Panels are never really bad, just a little out of normal. It is a journey.

I am exactly the same! Absolutely wet through sweating 🥵 but yet my hands and feet are like blocks of ice!
But then the next minute I’m
Absolutely freezing 🥶 and cannot warm up for agessss! I’ve got pots syndrome as well so that’s got a big part to play in it..

Oh and I’ve just started the perimenopause too but I’ve been like this my whole life..been referred to endocrinologist as my blood markers show very low levels of cortisol so I got an appointment 24hours later then got referred three days later..that’s verrry quick isn’t it?! I’m kinda worrying as they’re rushing me through so fast..

I have sarcoidosis and have suffered from around-the-clock hot flashes, night sweats, episodes of freezing, lack of thermoregulation for going on 20 years. Ambient temperature and environment make no difference. I suffered serious sleep deprivation (to the point of suicidal thoughts) due to being constantly woken up by night sweats. I'm certain I have small fiber neuropathy (although the one biopsy I had five years ago was "borderline") as well as chronic inflammation, both of which affect my hypothalamus and autonomic functioning. Peri-menopause was suspected when this all first started (I was in my mid 40s ) so I tried every hormone therapy out there but nothing worked. Finally, a new OB/GYN nurse practitioner told me about Gabapentin. "It's been used for thermoregulation for at least 30 years," she said. No one had ever suggested this before, which was mind-boggling. Sure enough, 100mg in the morning and 200mg before bed (a tiny dose) keeps the sweating/freezing cycle mostly at bay with no side effects that I've noticed.

How wonderful you finally have a med that actually helps!
And from a nurse practitioner! I bet the folks writing on this post will we excited to give it a try. Happy Holidays!