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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

marymaryoregon | @marymaryoregon | Dec 12, 2023
In reply to @kimroepke "I have Raynaud’s Disease which causes body temperatures to drop. I’ve learned to cope with it...." + (show)
@kimroepke

I have Raynaud’s Disease which causes body temperatures to drop. I’ve learned to cope with it. I wear layers of clothes, use electric blankets and I wear an Ororo vest most of the time. Surgeons wear these to stay warm when they are in surgery. These are fabulous! I also wear Little Hotties Adhesive Toe Warmers on my feet/tops/pants and put OCOOPA Quick Charge Hand Warmers in the pockets of my clothing. It’s been expensive purchasing these items, but they have certainly improved my quality of life. You should definitely check into all of these.

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I bought electric battery powered socks off Amazon- amazing! I wear them skiing inside my boots and they were total game changers, I can go outside in snow again!

But why (WHY???!!!???!!!) do they sell electric hand warmers in single packs? Most of us have TWO hands? I use my hand warmer all the time working.

The trick is: don’t start cooling off to begin with!! Once you start to cool, game over. If I have been sitting longer than… oh, half an hour I’m going to need to stand up and walk around or use the hand warmer or just check in and see if I need another layer (this is usually while I’m working at my desk). Once upon a time (4-5 years ago), I could ignore if I was cooling off a little bit because it would be no effort to warm right back up. But that is not the case anymore! Warm up before it’s too late!

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marymaryoregon | @marymaryoregon | Dec 12, 2023

Also- ha! I didn’t see all those other comments about dysautonomia posted before me! Y’all are out there and I’m just discovering it.

Here’s my question of the week (not to take away from the temperature regulation question), but what comes first: dysautonomia or migraines?

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ladyaceintx1 | @ladyaceintx1 | Dec 12, 2023
In reply to @marymaryoregon "Here’s a fun term to ask about: dysautonomia. The autonomic nervous system runs our internal systems..." + (show)
@marymaryoregon

Here’s a fun term to ask about: dysautonomia. The autonomic nervous system runs our internal systems without us normally needing to think about them. Has your internal thermostat gone a bit haywire? I hope not, but you are describing repeated episodes of chills where you can’t get warm. Lots of suggestions in the chat here- and certainly some conditions for your provider to think about and rule out as causing your symptoms. I’ve recently been reading about autonomic dysfunction in autoimmune disease- and there’s some good evidence of it causing symptoms in long COVID- so it might be worth asking about.

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For those who may have already read this post earlier today...the lab corrected my value.
(See below)
I did have a very bad case of COVID-19 in December 2021. I saw my GYN yesterday and mentioned the issue and he ordered a TSH upon my request, but refused to order any other thyroid tests until we got the results of this one. I had the lab done and it shows a low thyroid level of 0.129 mU/L (this is the corrected value) which is low in the Kelsey Care System. (0.384-4.446 mU/L)
He has not reviewed these results yet, so I can't speak to the next steps.
Thanks very much for your input, although most of my physicians don't want to discuss or relate anything to COVID because it's "inconclusive" information they say.

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somde | @somde | Dec 18, 2023

I am the opposite of you. I am so warm sometimes I do not wear a coat in the winter. The only thing cold on me is my feet.
I have to keep a window open in my bedroom in the winter and a fan in the summer,

If you can stand in a scalding shower when cold, definitely see your doctor.
You may burn your skin doing this.

I hope you find out what it is. My doctor tends to “poo poo me off”.
I am going to have to get another opinion. Good luck to you and stay out of those scalding showers.

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somde | @somde | Dec 18, 2023
In reply to @marymaryoregon "I bought electric battery powered socks off Amazon- amazing! I wear them skiing inside my boots..." + (show)
@marymaryoregon

I bought electric battery powered socks off Amazon- amazing! I wear them skiing inside my boots and they were total game changers, I can go outside in snow again!

But why (WHY???!!!???!!!) do they sell electric hand warmers in single packs? Most of us have TWO hands? I use my hand warmer all the time working.

The trick is: don’t start cooling off to begin with!! Once you start to cool, game over. If I have been sitting longer than… oh, half an hour I’m going to need to stand up and walk around or use the hand warmer or just check in and see if I need another layer (this is usually while I’m working at my desk). Once upon a time (4-5 years ago), I could ignore if I was cooling off a little bit because it would be no effort to warm right back up. But that is not the case anymore! Warm up before it’s too late!

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Electric battery power socks…….I can’t believe it.
I’m headed to Amazon right away. I have to wear wool socks to bed even in the summer! Been like this for years!

Thanks for the tip!

Cold in Canada!

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somde | @somde | Dec 18, 2023

I also wanted to say to you I am so glad your Covid is over! I had a bad case in September and I honestly did not think I would make it!

It left me without smell and taste. I can taste a bit now but smell is gone.
Good luck to you! Please see the doctor!!!

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somde | @somde | Dec 18, 2023
In reply to @ladyaceintx1 "I only take Estradiol as a HRT and have been on that for 24 years. No..." + (show)
@ladyaceintx1

I only take Estradiol as a HRT and have been on that for 24 years. No other symptoms except sometimes when I'm in bed under my 6 blankets, I start an involuntary shivering and feel like I'm in a blizzard. As I mentioned, have not brought this to my PCPs attention because this last year we were focused on my pancreatic issues.

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Just a note about Estradiol. I was on it for 12 years and it was my pharmacist who told me it should not be taken for longer than five years. I just told him the benefits of it outweighed the risks.

Have you heard anything like this?
I finally did go off and it worked out okay for me thankfully.

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bmisenti | @bmisenti | Dec 19, 2023

I have never had covid but I have MS and I’m always too warm or too cold. The only thing I can do is take clothes off or put more on. And I sweat even if I’m cold. I hate it.

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lkgavin59 | @lkgavin59 | May 11 10:50am

I am post-menopausal. In February I got Covid and my body temps kept going up and down. Three months later and I am still having issues with my body temp regulating. It’s not the same as hot flashes. I’ve had blood tests since the Covid and the results were that everything is normal. It’s so frustrating!

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3 replies
ladyaceintx1 | @ladyaceintx1 | May 11 1:45pm
In reply to @lkgavin59 "I am post-menopausal. In February I got Covid and my body temps kept going up and..." + (show)
@lkgavin59

I am post-menopausal. In February I got Covid and my body temps kept going up and down. Three months later and I am still having issues with my body temp regulating. It’s not the same as hot flashes. I’ve had blood tests since the Covid and the results were that everything is normal. It’s so frustrating!

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Have you had your thyroid and pituitary labs checked?
Most body temperature related conditions are found with these two.

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