Endocrine Withdrawal Syndrome after stopping HRT
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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@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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1 ReactionAccording 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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1 Reaction@gravity3 thank you,
Unfortunately I stopped cold turkey. Did try a bridge dose but that was horrible.
@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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1 Reaction@marybhillman this is me right now. How are things now? How long did you take HRT? Was it the progesterone?
@lucip78 how long were you on before this happened?
@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.
@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?
@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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1 Reaction@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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