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 kap17 @kap17

My Experience With Progesterone Intolerance and Withdrawal

I wanted to share my experience in case it helps anyone else searching for answers. I was prescribed oral micronized progesterone (100 mg) along with an estrogen patch. Over nine months, I developed crushing fatigue, brain fog, anxiety, depression, and eventually nausea/dry heaves and chest tightness. I didn’t realize at first that the oral progesterone was the cause.

Oral progesterone is converted in the body to a neurosteroid (allopregnanolone) that acts on the GABA-A receptors in the brain. For most women this is calming, but for about 10–20% it causes the opposite: sedation, mood changes, anxiety, and eventually nervous system destabilization. That’s what happened to me.

When I stopped the oral progesterone, I experienced what I can only describe as an “endocrine withdrawal syndrome.” For weeks I woke at 4–5 am with chest tightness, nausea, and shakes. My digestion collapsed and I lost weight. It felt like my nervous system had no brakes.

The good news is that recovery is possible, but it takes time. I’m now about 10 weeks off and while mornings are still rough, the dry heaves are gone, my sleep is lengthening, and I am slowly regaining appetite and stamina. I’ve learned that symptoms differ from woman to woman — some develop POTS-like heart symptoms, others more gut and fatigue symptoms, like me.

I share this because I never knew progesterone intolerance was even a thing until I experienced it. If anyone else is struggling after stopping HRT, know you are not alone, and that what you’re going through may be part of a recognized pattern of withdrawal and recovery

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@kap17
Hi, I've been having the same exact symptoms. Insomnia is horrible. What makes this even worse is my doctors no nothing about progesterone sensitivity or withdrawal. PCP prescribed antidepressant and told me to find a psychotherapist. Gyno told me progesterone does not cause these symptoms. I'm at my wits end. Did you use any kind of meds to get you over this hump?

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According to my medical provider endocrine withdrawal syndrome can occur if hormones are stopped suddenly. She stressed that if I decide to stop it should be a slow and deliberate process with the help of a physician. Sorry you have suffered.

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Profile picture for gravity3 @gravity3

According to my medical provider endocrine withdrawal syndrome can occur if hormones are stopped suddenly. She stressed that if I decide to stop it should be a slow and deliberate process with the help of a physician. Sorry you have suffered.

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@gravity3 thank you,
Unfortunately I stopped cold turkey. Did try a bridge dose but that was horrible.

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Profile picture for nicscud22 @nicscud22

@kap17
Hi, I've been having the same exact symptoms. Insomnia is horrible. What makes this even worse is my doctors no nothing about progesterone sensitivity or withdrawal. PCP prescribed antidepressant and told me to find a psychotherapist. Gyno told me progesterone does not cause these symptoms. I'm at my wits end. Did you use any kind of meds to get you over this hump?

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@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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Profile picture for marybhillman @marybhillman

Yes, yes and yes. I've been to emergency room many times shaking, hot and vomiting. I started weaning in May 2025. Been totally off since September. I am very distressed, my sleep is bad I scream all night. I am hot cold hot cold and this cold thing is new. The hot flashes last all day depending on my stress level that day. I have no get up and go. This is not me. I am an achiever. I amscheduled to see my gyno soon.

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@marybhillman this is me right now. How are things now? How long did you take HRT? Was it the progesterone?

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Profile picture for lucip78 @lucip78

I found out the hard way that stopping cold turkey is a bad idea while on HRT. I was on Climera for about three months when I was removed abruptly because I still had my uterus. Soon after I was getting these bad migraines that lasted three days at a time I had to stay in bed during these episodes. I couldn't see any lights. I was totally incapacitated. And any pain killers didn't help. Being on Climera did help with the hot flashes but now I refuse to go on any HRT'S. I am now 73 and my menopause symptoms are more manageable. I found exercises, meditation have help me to greatly.

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@lucip78 how long were you on before this happened?

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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 I'm so sorry you're going through this...it's been torture. Check out FB Progesterone Withdrawal/Negative Effects Support Group. Many women like us are suffering. Most say it takes time and recovery does happen. Stay positive and hang tight and rely on your faith to get you through.

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Profile picture for nicscud22 @nicscud22

@achase311 I'm so sorry you're going through this...it's been torture. Check out FB Progesterone Withdrawal/Negative Effects Support Group. Many women like us are suffering. Most say it takes time and recovery does happen. Stay positive and hang tight and rely on your faith to get you through.

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@nicscud22 Hi, Nicole, I am already on that group :)! I am Alisia on there. I am just terrified 24-7. How long have you been on hormones and how did it go awry?

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Profile picture for achase311 @achase311

@nicscud22 Hi, Nicole, I am already on that group :)! I am Alisia on there. I am just terrified 24-7. How long have you been on hormones and how did it go awry?

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@achase311 Hi,
I started back in December for about 2 weeks. Originally on .075 estradiol patch and 200mg progesterone. Stopped because one night I woke up out of a deep sleep with a full blown panic attack. Dr. said maybe progesterone sensitivity but that its rare. Started again in mid January. Stopped patch mid March and progesterone mid April. I then tried 25mg bridge dose and it was horrible. Went over 24hrs without sleep. Just need to know this will pass. It day 20 and I'm still not feeling better.

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Profile picture for nicscud22 @nicscud22

@achase311 Hi,
I started back in December for about 2 weeks. Originally on .075 estradiol patch and 200mg progesterone. Stopped because one night I woke up out of a deep sleep with a full blown panic attack. Dr. said maybe progesterone sensitivity but that its rare. Started again in mid January. Stopped patch mid March and progesterone mid April. I then tried 25mg bridge dose and it was horrible. Went over 24hrs without sleep. Just need to know this will pass. It day 20 and I'm still not feeling better.

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@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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