Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Menopause Support Group.
Connect
@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. 💗
@nicscud22 Feel free to FB message me via the P group. xoxo
-
Like -
Helpful -
Hug
1 Reaction@meingan
Are you having these symptoms or afraid you might have them?
@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.
@achase311
Yes! And you the same.🩷
@achase311
Why oral? And what were you taking and at what dose? How old were you when you started?
@marybhillman
I’ve been experiencing extreme nausea, dry heaving, scary mental health symptoms since removing the estradiol patch in early April. I tried cross taper with a much lower dose of compounding estrogen and it made things worse!
It’s taken me sometime to put the pieces of the puzzle together-I’m in estradiol withdrawl. Forums such as this are so needed. Reading this has truly been a saving grace (not that I wish this on any of us). Knowledge is power! With the uncertainty of what tomorrows symptoms may bring as my brain and body recalibrate, this information arms me with insight as to what my body I going through-which helps me to know that I’m not going crazy and over time the mind and body will heal.
I was considering going back on the 0.025 mg E patch due to not knowing what my body was going through and debilitating the symptoms are. Now I thinking I’ll hold off and try to get through the withdrawals w/out reinstating estrogen. I never felt right on the patch. While this experience is truly scary and debilitating, adding E back into the equation may lead me back to the not feeling quite right feelings I had while on the patch.
I am truly thankful for you all taking the time to spread awareness about this very real Endocrine disruptive state that one can find themselves in when going down the HRT road.
-
Like -
Helpful -
Hug
1 Reaction@miriza how are you doing? I am going through this, too, and it is awful. did you heal?
@plopez38
It was made very clear to me by my functional medicine provider that if I ever wanted to stop bhrt it should be done very gradually and with the guidance and support of my provider. Were you trying to do this w/o your physician?
@achase311 no, the akathisia is still pretty severe. Also got intermittent dystonia and dyskinesia, more than 100 symptoms. Recently read a story so similar to mine on Reddit, the post is something like “progesterone withdrawal nightmare” and it is the last comment there. I am seven months out like her and suffering from the same issues as her and many more. This is SO REAL! It is a brain injury but “modern” medicine doesn’t want to admit it. Many women having the same issue in “Progesterone withdrawal” FB group.