1. < Autoimmune Diseases

Difficulty regulating body temperature. Does anyone else have this?

Posted by ladyaceintx1 @ladyaceintx1, Nov 30, 2023

For the last several years after having COVID in 2021, I have had difficulty maintaining a warm body temperature and if I get too cold, it is almost impossible to warm up which drops my blood pressure, gives me chills and causes hypothermia.
I've just dealt with it but sometimes without warning it just "zaps" me...causing me to run for a blanket, hot drink or shower which only mildly helps. I've stood shivering in a scalding hot shower.
Has anyone else experienced this? What causes this condition and what has helped you deal with it? I haven't had any testing done but would be interested in learning more about this.

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harley22 | @harley22 | Dec 2, 2023
In reply to @harley22 "I have trouble maintaining my body temp as I am always hot, and I sweat doing..." + (show)
@harley22

I have trouble maintaining my body temp as I am always hot, and I sweat doing a little activity,which I never have done before my CIDP diagnosis.
My husband hates putting on our ceiling fans or air conditioning because he’s always cold.
I’m wondering if this has to do with my neuropathy, as I never even had hot flashes when I was going thru menopause.
This has caused a lot of arguments between us over the temp of our air conditioning.
He likes it at 78 and I like it at 76 degrees.

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I’m too warm at 77, so I put it to 76, which is better for me.

REPLY
covidstinks2023 | @covidstinks2023 | Dec 2, 2023
In reply to @ladyaceintx1 "I just scheduled an appointment with my PCP, per your suggestion on 12/26/23 so we will..." + (show)
@ladyaceintx1

I just scheduled an appointment with my PCP, per your suggestion on 12/26/23 so we will see. Thank you.

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I am with the others. I would get a complete thyroid panel. TSH, T3 & T4 & Thyroid antiglobulins & antibodies. My Hashimotos (Hypothyroidism) did not show up in the normal thyroid panel It wasn't until I went to an Endocrinologist that did the complete panel mentioned above that my thyroid anitglobulins & antibodies were high. Also Raynauds Syndrome can make your hands and feet very cold as Thyroid Disease (depending on if you which one you have...hyper or hypo) can make you cold or hot. Praying for you and God bless you.

REPLY
2 replies
maddiemae | @maddiemae | Dec 2, 2023
In reply to @harley22 "I have trouble maintaining my body temp as I am always hot, and I sweat doing..." + (show)
@harley22

I have trouble maintaining my body temp as I am always hot, and I sweat doing a little activity,which I never have done before my CIDP diagnosis.
My husband hates putting on our ceiling fans or air conditioning because he’s always cold.
I’m wondering if this has to do with my neuropathy, as I never even had hot flashes when I was going thru menopause.
This has caused a lot of arguments between us over the temp of our air conditioning.
He likes it at 78 and I like it at 76 degrees.

Jump to this post

Hi all. I, too, have trouble regulating my body temp. Hot, cold, hot, cold. The hot comes on in an instant. I have dysautonomia and this is a issue with that. Dysautonomia is not rare but difficult to diagnose.

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1 reply
harley22 | @harley22 | Dec 2, 2023
In reply to @covidstinks2023 "I am with the others. I would get a complete thyroid panel. TSH, T3 & T4..." + (show)
@covidstinks2023

I am with the others. I would get a complete thyroid panel. TSH, T3 & T4 & Thyroid antiglobulins & antibodies. My Hashimotos (Hypothyroidism) did not show up in the normal thyroid panel It wasn't until I went to an Endocrinologist that did the complete panel mentioned above that my thyroid anitglobulins & antibodies were high. Also Raynauds Syndrome can make your hands and feet very cold as Thyroid Disease (depending on if you which one you have...hyper or hypo) can make you cold or hot. Praying for you and God bless you.

Jump to this post

I’ve had thyroid labs done recently with my routine labs and they were normal.
My thyroid levels are WNL.

REPLY
ladyaceintx1 | @ladyaceintx1 | Dec 2, 2023
In reply to @maddiemae "Hi all. I, too, have trouble regulating my body temp. Hot, cold, hot, cold. The hot..." + (show)
@maddiemae

Hi all. I, too, have trouble regulating my body temp. Hot, cold, hot, cold. The hot comes on in an instant. I have dysautonomia and this is a issue with that. Dysautonomia is not rare but difficult to diagnose.

Jump to this post

@maddiemae
What is your condition exactly, the cause of it and the treatment? Is it curable?
Is it a metabolic condition?

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2 replies
ladyaceintx1 | @ladyaceintx1 | Dec 2, 2023
In reply to @covidstinks2023 "I am with the others. I would get a complete thyroid panel. TSH, T3 & T4..." + (show)
@covidstinks2023

I am with the others. I would get a complete thyroid panel. TSH, T3 & T4 & Thyroid antiglobulins & antibodies. My Hashimotos (Hypothyroidism) did not show up in the normal thyroid panel It wasn't until I went to an Endocrinologist that did the complete panel mentioned above that my thyroid anitglobulins & antibodies were high. Also Raynauds Syndrome can make your hands and feet very cold as Thyroid Disease (depending on if you which one you have...hyper or hypo) can make you cold or hot. Praying for you and God bless you.

Jump to this post

@covidstinks2023
The Rheumatologist that I saw did mention immediately that I have Raynauds but failed to mention causes, treatment or anything else. I've dealt with those symptoms my entire life, but the sudden drop in body temperature which also makes my body feel cold from head to feet, and causes this shivering sensation even if I'm buried under multiple blankets is very strange. Any ideas?

REPLY
1 reply
covidstinks2023 | @covidstinks2023 | Dec 2, 2023
In reply to @ladyaceintx1 "@covidstinks2023 The Rheumatologist that I saw did mention immediately that I have Raynauds but failed to..." + (show)
@ladyaceintx1

@covidstinks2023
The Rheumatologist that I saw did mention immediately that I have Raynauds but failed to mention causes, treatment or anything else. I've dealt with those symptoms my entire life, but the sudden drop in body temperature which also makes my body feel cold from head to feet, and causes this shivering sensation even if I'm buried under multiple blankets is very strange. Any ideas?

Jump to this post

My Rheumatologist didn't act like it was a big deal and didn't talk about it. I was diagnosed actually years ago by a G.I. doctor when I mentioned to him about my hands and feet being so cold but my body was warm. He said I had Raynauds. That was it. I ignored it over the years, but, it was on my medical record. I will say, it has gotten worse since COVID last year. Sometimes my fingers and toes turn blue under the nail and feel like ice. It hurts my hands to pick up ice to put in a cup and I run warm water when I am filling ice glasses and put my hands under it because it is painful. Getting in a tub of hot water with epsom salt and putting my hands down in the water & feet will warm them up pretty quickly. I don't have a flare with this every day....it's off and on. Raynauds does tend to run along side of Systemic Lupus and several other autoimmune diseases. I have borderline Systemic Lupus, Fibromyalgia, Arthritis, both thyroid diseases & long Covid. Praying you get some answers.

REPLY
1 reply
ladyaceintx1 | @ladyaceintx1 | Dec 2, 2023
In reply to @covidstinks2023 "My Rheumatologist didn't act like it was a big deal and didn't talk about it. I..." + (show)
@covidstinks2023

My Rheumatologist didn't act like it was a big deal and didn't talk about it. I was diagnosed actually years ago by a G.I. doctor when I mentioned to him about my hands and feet being so cold but my body was warm. He said I had Raynauds. That was it. I ignored it over the years, but, it was on my medical record. I will say, it has gotten worse since COVID last year. Sometimes my fingers and toes turn blue under the nail and feel like ice. It hurts my hands to pick up ice to put in a cup and I run warm water when I am filling ice glasses and put my hands under it because it is painful. Getting in a tub of hot water with epsom salt and putting my hands down in the water & feet will warm them up pretty quickly. I don't have a flare with this every day....it's off and on. Raynauds does tend to run along side of Systemic Lupus and several other autoimmune diseases. I have borderline Systemic Lupus, Fibromyalgia, Arthritis, both thyroid diseases & long Covid. Praying you get some answers.

Jump to this post

The Rheumatologist said I was negative for Lupus although I had a positive ANA. My GI said I'm negative for Autoimmune Pancreatitis because I failed my 47 day steroid trial although we still have no known cause of my chronic pancreatitis. I have vague, intermittent symptoms such as spontaneous rashes etc that would indicate an autoimmune condition but I can't seem to find either the right rest or right doctor to get a diagnosis. I noticed more changes after a bad case of COVID-19 in Dec. 2021, but again, all my doctors just use the term "inconclusive" evidence and don't pursue it.
I feel frustrated but mostly just try not to worry about what I may have but can't diagnose.

REPLY
1 reply
buddabu | @buddabu | Dec 2, 2023
In reply to @ladyaceintx1 "I just scheduled an appointment with my PCP, per your suggestion on 12/26/23 so we will..." + (show)
@ladyaceintx1

I just scheduled an appointment with my PCP, per your suggestion on 12/26/23 so we will see. Thank you.

Jump to this post

Ask him to check your iron too. My husband spent 18 days in the hospital with pneumonia. He lost a lot of weight and is always cold. It was his iron levels.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Dec 2, 2023
In reply to @ladyaceintx1 "The Rheumatologist said I was negative for Lupus although I had a positive ANA. My GI..." + (show)
@ladyaceintx1

The Rheumatologist said I was negative for Lupus although I had a positive ANA. My GI said I'm negative for Autoimmune Pancreatitis because I failed my 47 day steroid trial although we still have no known cause of my chronic pancreatitis. I have vague, intermittent symptoms such as spontaneous rashes etc that would indicate an autoimmune condition but I can't seem to find either the right rest or right doctor to get a diagnosis. I noticed more changes after a bad case of COVID-19 in Dec. 2021, but again, all my doctors just use the term "inconclusive" evidence and don't pursue it.
I feel frustrated but mostly just try not to worry about what I may have but can't diagnose.

Jump to this post

@ladyaceintx1 You might check into a comprehensive medical center/university hospital near you. The doctors there usually learn/know more than local doctors. My experience with my undiagnosed autoimmune disease bears that out. Local doctors couldn’t tell what was wrong when they saw my MRI. They didn’t know what to do. My husband called the university hospital 1 hr away and they said to come down. Looking at the MRI, they knew exactly what was wrong and I’ve been under treatment ever since. Keep a journal of all your symptoms and make an appointment!
Do you think you can make some calls on Monday?

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