Endocrine Withdrawal Syndrome after stopping HRT

Posted by monarchbfly @monarchbfly, Jan 8, 2023

Hello,
I am wondering if anyone has experienced endocrine withdrawal syndrome after stopping hormone replacement therapy? I am 54 years old. Last June, I was prescribed Premarin .45 and 100 mg progesterone daily to combat hot flashes. I felt great the first month, then felt horrible by September, like I was overmedicated. I then stopped cold turkey. Two days later, I was awoken in the middle of the night by a heart rate of 155 and high blood pressure that lasted a few minutes. I went to ER and they couldn't find anything. A month later, I started having tachycardia episodes, high and low blood pressure episodes, shaking, extreme insomnia, feeling like I was wired, anxiety and dread, etc, all day and night. After 3 paramedic visits, 2 ER visits, an endocrinologist, rheumatologist, cardiologist, gynecologist and a PCP, all giving me a full workup and blood tests, they didn't find anything wrong with me. I felt like I was going to die. I ended up couch bound for 7 weeks. The endocrinologist thinks I may have had endocrine withdrawal syndrome that mimicked opioid withdrawal syndrome. Apparently this can be a thing after discontinuing estrogen. He put me on .25 divigel and no progesterone. I am slowly stabilizing, but still have occasional symptoms that are or mimic POTS (postural orthostatic tachycardia syndrome). I can function somewhat but am nowhere near my original energetic self and it is destroying my life. Has this happened to anyone else? How did you fix it? Thank you.

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Profile picture for achase311 @achase311

@nicscud22 Hi, it WILL pass. There are plenty of women on the FB group for whom it has passed, and we need to count on that. I recovered from benzos prescribed for anxiety in the wake of breast cancer 10 years ago so am doubly sensitive--would never have taken it if I had known how cross-tolerant progesterone was. I started in January with 100 mg. and after two months same thing--woke up one night like a bat out of hell, and then didn't sleep again for three nights. Since then sleep has been rough. Lots of night sweats, intrusive thoughts and depression in the day, and panicky feelings. I will hold us all in my prayers. Just keep holding on and knowing you are not crazy--this is the drug.

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@achase311 Yes, we will get through this one day at a time. I find comfort knowing many women, unfortunately, have experienced this hell and have recovered. Keeping you in my prayers for a speedy recovery. 💗

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Profile picture for nicscud22 @nicscud22

@achase311 Yes, we will get through this one day at a time. I find comfort knowing many women, unfortunately, have experienced this hell and have recovered. Keeping you in my prayers for a speedy recovery. 💗

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@nicscud22 Feel free to FB message me via the P group. xoxo

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Profile picture for meingan @meingan

@smr25
Wow! This is not what I want to hear. I just started HRT to combat sudden onset of anxiety disorder.

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@meingan

Are you having these symptoms or afraid you might have them?

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Profile picture for gravity3 @gravity3

@meingan

Are you having these symptoms or afraid you might have them?

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@gravity3 No, I don’t have these symptoms. How awful! My dosage is very low (40mg progesterone, 0.625) and it’s a topical cream. Actually I don’t know if it helps at all with my anxiety. I been doing it 6 months now. I need to follow up with my doctor.

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Profile picture for achase311 @achase311

@nicscud22 Feel free to FB message me via the P group. xoxo

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@achase311
Yes! And you the same.🩷

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Profile picture for achase311 @achase311

@nicscud22 Help! I am going through the same thing! Used a small low dose of cream for 6 years without issues then changed to oral and all hell broke loose.

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@achase311

Why oral? And what were you taking and at what dose? How old were you when you started?

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