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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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nicscud22 | @nicscud22 | 1 day ago
In reply to @kap17 "My Experience With Progesterone Intolerance and Withdrawal I wanted to share my experience in case it..." + (show)
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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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gravity3 | @gravity3 | 1 day ago

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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nicscud22 | @nicscud22 | 1 day ago
In reply to @gravity3 "According to my medical provider endocrine withdrawal syndrome can occur if hormones are stopped suddenly. She..." + (show)
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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