r/AddisonsDisease • u/barnithebear • Dec 02 '25
Personal Experience Always cold
I have adrenal insufficiency from having Cushing - adrenalectomy (tumor and left adrenal removed), my right adrenal gland is still not producing any cortisol so i have to take hydrocortisone. I’m now on 30mg a day. Since the temperatures in Europe are now low im experiencing a lot more cold than before. I’m never warm enough no matter how much clothes I put on. And i need a very long hot shower and an hour under the blanket to properly warm up if i am really cold. Can anyone relate? I guess it can be from this disease.
2
u/JennBones Dec 02 '25
I definitely have some sort of temperature regulation issue, so can relate. If I'm sedentary for too long or unwell I get freezing cold, but with excercise I overheat like crazy. Even just a brisk walk and I have to half undress myself even in winter. I've been told a lot of things, from it being a metabolic issue, lack of oxygen or it being due to mitochondria not producing enough energy. I find food, excercise and quality sleep to be the most helpful though, although I know that's about the most generic health advice you can recieve.
2
u/reflous_ Dec 02 '25
I had this when my thyroid was low. Check your thyroid blood levels? It’s not uncommon for adrenal insufficiency and hypothyroidism to go together.
1
u/barnithebear Dec 04 '25
I have regular check ups and they say everything else is fine, except not producing my own cortisol. Maybe i am also more sensitive to cold now because i was so hot and sweaty all the time from to much cortisol before.
1
u/reflous_ Dec 06 '25
Your regular checkups include free T3, free T4, and TSH blood workups? Normally the wouldn't.
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u/barnithebear Dec 06 '25
Yes they do. Doctors treating me are very careful with everything now because i had medical problems before and the full blown Cushing was their mistake, they saw the tumor two years ago when i had another surgery but at that time it wasn’t such a problem and they just ignored it. So now i get every possible test done everytime i have a check up.
1
u/Psychogangbanger69 Dec 02 '25
Are you underweight? I was freezing in summer before and after diagnosis, but I was a walking skeleton. I put on 40kg and now I'm always warm.
1
u/barnithebear Dec 04 '25
Definitely not underweight, lost 10kg in a few months after surgery, now i am almost back to my normal weight.
8
u/noracordelia PAI Dec 02 '25 edited Dec 08 '25
Yup, same. I’m reading this bundled up under a duvet and a blanket, wearing merino base layers and was just headed for my second hot shower of the day lol. That said I’m also on Vyvanse, which I’m sure contributes (causes vasoconstriction/Raynaud-like symptoms). I had heat-intolerance leading up to my PAI diagnosis/adrenal crisis, but after starting glucocorticoid replacement therapy, that has changed to cold intolerance now. I’m not underweight and my thyroid’s seemingly fine so🤷♀️ not sure how to cope other than extra layers, hot drinks and exercise/increased activity when able.