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Can’t regulate body temperature.

Posted by alex63 @alex63, Dec 14, 2024

Hi. I’m a newbie here and am like probably everyone has been - at my wits end. I need to find a new Dr but don’t know where to start. Problem is - I can’t regulate my body temperature at all. One moment I am hot. Next I am sweating. Next minute I’m shivering cold and totally wet from the sweat. Doesn’t matter if it is day or night. House is at 63, ceiling fan on high, naked in bed with single sheet for cover - I’m sweating- then cold … 10 mins later same thing again. All night long ball day long too. Outside in 33 degree weather and I’m sweating in a long sleeve t shirt. Hair wet from sweat. Can’t get cool. Then all of a sudden I’ll get cold for a little bit and shiver for a while. I’ve had test after test and yesterday I got a diagnosis of hereditary angiogram’s and mast cell activation. That makes no sense based on symptoms although I may have that too I doubt it. It isn’t hormonal and not thyroid related. I’ve searched and searched but can’t find anything similar. Any help is welcomed. Thank you

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artemis1886 | @artemis1886 | May 25, 2025
In reply to @missamy "I am having incredible night sweats. Wake up soaking wet then freezing to death. I start..." + (show)
Profile picture for missamy @missamy

I am having incredible night sweats. Wake up soaking wet then freezing to death. I start getting cold in the late afternoon. No change in temperature in house. I have RA and dermatomyositis. I am currently on methotrexate, IVIG infusions twice a month, Rinvoq, tramodol, synthroid, NP thyroid. Have been off of steroids for about 8 months after low dose usage for 11 years straight. Occasional high doses during flares. Constant sores in my nose and daily nose bleeds borderline anemic. I feel you pain I hope we can both get some relief soon

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Can I ask how much synths and np thyroid you are on? I have Hashimotos and my thyroid needs adjusting. .

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missamy | @missamy | May 25, 2025

I am on 88 mcg of synthroid and 45 mg of np thyroid

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sharon44r | @sharon44r | May 26, 2025
In reply to @artemis1886 "I stay freezing since my neuropathy has became worse. Total hysterectomy in 2019 onHRT hormones (..." + (show)
Profile picture for artemis1886 @artemis1886

I stay freezing since my neuropathy has became worse. Total hysterectomy in 2019 onHRT hormones ( progesterone 250SR, estrogen and testosterone cream 12 meq twicea day). As my neuropathy has became worse my body does not regulate my body temperature. My temperature has always been 97.5 still the same but it can be 105 in Texas and I am wearing a cardigan sweater I constantly carry in my car.
Diagnosis severe axonal sensorimotor poly peripheral neuropathy, dysautonomia, small fiber neuropathy,
Cardiac autonomic neuropathy, asthma, sjogrens, lupus. Just an fyi motor neuropathy causes tremors. My seizures has been linked to my seizures.
Along with RA and Elenor’s danlos a connective disorder, spinal bifida. All my inflammatory markers elevated but test negative for everything which don’t make much sense. I have the lupus rash and ultrasound shows stage 3 rheumatoid arthritis nodules. The doctor tried to tell meI was seronegative RA but read up on RA you can only have the nodules if you are positive now he is mad at me telling me I am too complicated and he is dropping me as a patient. Welcome to RA doctor verses the RN not a good match.

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My rheumatologist dropped me too. If they can’t figure it out in their tunnel vision they dismiss you in pain. I knew I had PMR, but since only my primary saw me during the attack and she ganpve me prednisone, the rheumatologist tried to wean me off prednisone too fast. He said sero negative arthritis. Because of him I had a major flare.
I test negative for rhemotoid arthritis. Honestly, I don’t think anyone really knows what I have, but I know this is all from the covid first 2 vaccines. I’ve been on prednisone low dose 7 mg for 3 years with ups and downs, can’t get lower than that.

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artemis1886 | @artemis1886 | May 26, 2025
In reply to @sharon44r "My rheumatologist dropped me too. If they can’t figure it out in their tunnel vision they..." + (show)
Profile picture for sharon44r @sharon44r

My rheumatologist dropped me too. If they can’t figure it out in their tunnel vision they dismiss you in pain. I knew I had PMR, but since only my primary saw me during the attack and she ganpve me prednisone, the rheumatologist tried to wean me off prednisone too fast. He said sero negative arthritis. Because of him I had a major flare.
I test negative for rhemotoid arthritis. Honestly, I don’t think anyone really knows what I have, but I know this is all from the covid first 2 vaccines. I’ve been on prednisone low dose 7 mg for 3 years with ups and downs, can’t get lower than that.

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My rheumatologist did ultrasound on my wrist and hands. Being an RN Iam not stupid. He said I had seronegative RA. I told him I can’t have level 3 seronegative RA because the only way to get RA nodules is if you are stage 3 seropositive RA. He got really mad at me. I showed him the documentation on it proving him wrong. Oops he got really mad.

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stacy4man | @stacy4man | Jun 14, 2025
In reply to @jmhilde61 "I have sarcoidosis and have suffered from around-the-clock hot flashes, night sweats, episodes of freezing, lack..." + (show)
Profile picture for jmhilde61 @jmhilde61

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.

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I was taking 100 mg a day for one week. I started seeing things that really weren’t there couldn’t make out certain objects for a while. I would think it was something other than it was. Extremely groggy and very forgetful. Definitely couldn’t function in normal life. I wish gabapentin would work for me.

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jmhilde61 | @jmhilde61 | Jun 14, 2025
In reply to @stacy4man "I was taking 100 mg a day for one week. I started seeing things that really..." + (show)
Profile picture for stacy4man @stacy4man

I was taking 100 mg a day for one week. I started seeing things that really weren’t there couldn’t make out certain objects for a while. I would think it was something other than it was. Extremely groggy and very forgetful. Definitely couldn’t function in normal life. I wish gabapentin would work for me.

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It's so interesting how medications can affect different folks so differently! Sorry the gaba doesn't work for you.
I'm actually weaning off mine because I was diagnosed with lichen planus (red sore lesions all over my back) which can be a drug reaction to gabapentin. The lesions have been getting worse over the past two years and nothing has worked to make them go away (I've tried many topicals) so I'm biting the bullet and stopping the gaba. I've already noticed my night sweats picking up again, sigh. It's always something.

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stacy4man | @stacy4man | Jun 14, 2025

Ugh, I'm so sorry. Praying the tapering off gets better. Are you planning on Lyrica or something else?

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asage | @asage | Apr 27 8:42am

I realize this is old, but I have been looking for someone going through a similar thing as me for years. I've been sweating like this for 11 years, and it's getting worse, and it's driving me absolutely bonkers. I have PTSD and I'm told it's because of that but my thermostat got broke during my abuse.

Can I ask how you're doing now if you're still available to talk

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sandalwood65 | @sandalwood65 | Jun 11 11:48pm

It's 34 C outside that's pretty hot. I feel really cold and have winter clothes on. At night I burn up or have night sweats. I'm 65 years old and it's not my thyroid. I have RA, Psoriasis Arthritis, plus Reynaurds.

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Alta Net | @altabiznet | Jun 12 3:03pm
In reply to @sandalwood65 "It's 34 C outside that's pretty hot. I feel really cold and have winter clothes on...." + (show)
Profile picture for sandalwood65 @sandalwood65

It's 34 C outside that's pretty hot. I feel really cold and have winter clothes on. At night I burn up or have night sweats. I'm 65 years old and it's not my thyroid. I have RA, Psoriasis Arthritis, plus Reynaurds.

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@sandalwood65
Unfortunately, you have multiple autoimmune diseases that are contributing. Dysautonomia along with Raynaud's can be causing vasoconstriction, chills and loss of temperature regulation mechanisms in the body. You may want to see a neurologist to get checked for dysautonomia. However, main treatments are still immunosuppressive drugs for RA and PSA plus calcium channel blockers for Raynaud's. Your neurologist may be able to offer some steroids. Beta-blockers are known to work for arrythmias, if you have abnormal heart rhythm.

Dysautonomia causes a wide range of symptoms due to dysfunction of the autonomic nervous system, affecting heart rate, blood pressure, digestion, temperature regulation, and more.
General Symptom Categories
Dysautonomia can impact multiple body systems, leading to diverse and sometimes unpredictable symptoms. Common manifestations include:

Cardiovascular: Rapid or slow heart rate (tachycardia or bradycardia), irregular heart rhythms (arrhythmias), low or unstable blood pressure, fainting or lightheadedness, especially when standing (orthostatic intolerance)
clevelandclinic.org
clevelandclinic.org
+1
.
Neurological: Brain fog, difficulty concentrating, migraines, dizziness, balance problems, and fatigue
clevelandclinic.org
clevelandclinic.org
+1
.
Gastrointestinal: Nausea, vomiting, constipation, diarrhea, and difficulty swallowing (dysphagia)
clevelandclinic.org
clevelandclinic.org
+1
.
Respiratory: Shortness of breath or exercise intolerance
clevelandclinic.org
clevelandclinic.org
.
Urinary and Sexual: Frequent urination, urinary incontinence, and sexual dysfunction

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