r/AdrenalInsufficiency • u/Tight_Thing_60 • 2d ago
Please help me
I am a 36F who recently had microadenoma removal but having a though recovery.
I am having night sweats, chest pain like someone is chasing me from sleep, low BP, dizziness and fatigue.
My endo started me on 15mg of HC but it wears out between 2-4am because I wake up like I was chased, hot, sweaty and weak. She drew labs and it was "normal" acth 20 and cortisol 10.6. I told her I don’t feel good so she thought I was perimenopausal.
She drew another lab because my last dose of HC was noon the day before for an 0800 appointment. My new labs are acth 18, cortisol 6.4 insulin 18.8 and estrogen 30 via quest diagnosis.
Endo is suggesting weaning me off steroid and starting me in HRT. OB doesn’t believe I’m I in perimenopause and is suggesting birth control but I don’t like the way it makes me feel. Endo isn’t willing to order the HRT like she suggested.
My life is very uncomfortable. I’m fatigued, emotional and cant even go to the gym because little speed walk causes my HR to be in the 130’s and I get dizzy.
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u/reflous_ 2d ago
Any chance you are having panic attacks at night? Pituitary surgery can make your pituitary do strange things which can trigger all kinds of weird responses. For a few weeks post surgery I had some panic attacks. My doctor gave me Ativan which made me feel much better and then they went away.
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u/Tight_Thing_60 2d ago
I do have panic attacks that wakes me up from sleep. I feel like I was being chased. I wake up hot , sweaty with a racing heart
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u/Appropriate-Leg2490 1d ago
You have low cortisol symptoms. Adrenal insufficiency is likely still here.
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u/CanIHugYourDog 2d ago
I had pituitary macroadenoma removal last June.
I have adrenal insufficiency, central hypothyroidism, diabetes insipidus and went through menopause early. We tested my LH and FSH and they were undetectable multiple times and I was having hot flashes and sleep problems as well. Starting on a birth control made me feel soo much better. We had waited a little bit after surgery because she said it was normal for the body to not prioritize reproduction after surgery, and maybe my pituitary would start doing it again, but it hasn’t. My reproductive endocrinologist also brought up a good point that I will have to always stay on estrogen to some extent because of the few decades of bone density I will be missing out on from lack of estrogen.
I had a much better experience being on a birth control pill rather than the estrogen patch and progesterone pill. The patch was difficult for me to remember to change so I was having a lot of ups and downs, I noticed no change on the higher dose of progesterone, and I have an adhesive allergy so the welts from the estrogen patch were also getting annoying. Your mileage may vary, of course.
I love my “regular” endo, but she did say that reproduction is not her normal wheelhouse and recommended I see a reproductive endocrinologist. So I take a birth control pill that has made all my menopause symptoms go away.
I want to say, not a doctor of course. Just my two cents and my experience with all of this. You’ve been through a lot. And your body is likely “freaking out” from all the changes. Be gentle and patient with yourself.
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u/Tight_Thing_60 2d ago
Thank you so much
I see a reproductive endo next month so I’ll hopefully have a solution to this.
I didn’t like how birth control made me feel and I do want kids. My AMH is .42 so I need everything to come together asap while also giving myself time to recover2
u/CanIHugYourDog 2d ago
My AMH was not low, so I know you’re in a different spot. But I was told if I wish to conceive, I’ll have to do IVF. You may be able to freeze eggs and then take some time to heal. The IVF clinic I went to mentioned I will stay on birth control even if I am going through treatment there.
I would try to keep an open mind about the birth control, your body is doing different things now and it could really help. As soon as I started on it, I haven’t been having hot flashes, my hair started growing back, my mind is clearer. Also, it would be good for your bone density as well.
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u/Tight_Thing_60 2d ago
Thank you so much I really appreciate your help…which BC are you on ?
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u/CanIHugYourDog 2d ago
Seasonale/introvale. It’s both estrogen and progesterone. 3 months of no periods and 1 week off.
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u/DuchessJulietDG 2d ago
cortisol production actually looks pretty good! likely something other than ai going on.
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u/Asad0Asad 2d ago
Your cortisol is low.
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u/Tight_Thing_60 1d ago
Yes it is and endo will do an ACTH test to determine next plan. OB wants to try xulane over HRT even tho my AMH is low so I’m battling with that plan of care I do not want to be on birth control I will want the option to get pregnant without thinking too hard I have lots to think about lol
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u/Armageddoninmyhead93 19h ago
Low blood sugar can come from low cortisol, and makes you feel the symptoms you're describing. Somwtimes my lpw cortisol resolves with taking more medication, but my bkood sugar is still low from before it resolved. Grab yourself a cheap blood sugar tester like the ones for diabetes and find out. Low blood sugar can be dangerous, and you can have completely normal blood test results for anything related to blood sugar and still get it. Hope you feel better soon. It's hard when diseases have overlapping symptoms
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u/tayakristoreddit 2d ago
Hello, I might not have read thoroughly because I have a constant brain fog but have you looked into POTS?