1. < Autoimmune Diseases

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 12:22am
In reply to @missamy "I am having incredible night sweats. Wake up soaking wet then freezing to death. I start..." + (show)
@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 6:45am

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

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sharon44r | @sharon44r | May 26 10:09am
In reply to @artemis1886 "I stay freezing since my neuropathy has became worse. Total hysterectomy in 2019 onHRT hormones (..." + (show)
@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 11:19am
In reply to @sharon44r "My rheumatologist dropped me too. If they can’t figure it out in their tunnel vision they..." + (show)
@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.

Jump to this post

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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