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HRT and autism
My nonverbal 50 yr old autistic, epileptic daughter started 0.025 estradiol 3 months ago along with progestin she's been on many years to prevent period but she's been having bizarre behaviors and we are used to unusual with her but now not sleeping tho that's been forever!
Dr said at 3 mos if she wasn't back to baseline we should stop the estradiol
Is it safe to go off this very low dose without weaning? Can't cut and it's lowest dose available
thought please?
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Does the doctor think she will adjust to the estradiol within 6 months? Would the benefits be worth it to wait to see?
I understand that you’d like to reduce the effects of menopause which can be poorly understood by an autistic and so difficult to manage.
Some info that might help?
“Sensory Overload:
Estrogen plays a major role in how the brain filters sensory information. A sudden or unacclimated spike of estrogen can make the brain's sensory filter less effective, making the environment feel overwhelmingly bright or loud.
Neurotransmitter Spikes:
Estrogen modulates dopamine and serotonin, which regulate focus, mood, and impulse control. Sudden changes can cause overstimulation, mimicking severe premenstrual dysphoric disorder (PMDD) symptoms.”
If I had to make a similar decision for my sister, who is developmentally disabled but not AU, and wanted to take her off the estradiol, I think I’d just stop the low dose med. But I’d notify the doctor before doing so just in case I missed a complication.
You might also ask if there is a med you can temporarily add, while staying on the estradiol, that would help calm the higher sensory input and overstimulation possibly caused by the estrogen. Anti-anxiety? Or nerve calming Neurontin?
If I can correlate this at all to my own experience with tamoxifen (which adjusted available estrogen in my body), at 3 months I had hit the highest level of side affects but my body adjusted after that and in the next few months I had less problems.
These decisions, that rarely have one good solution, never come easy.
Thank you for your excellent insight.. and your experience with your sister is important as you understand some of this population
We agreed to give the estradiol 4 months, if she's not back to " baseline" with behavior issues, gonna stop, no weaning etc
There are risks too with estrogen, she has been on progestin many years as she had no idea how to take care of periods but while in hospital for several weeks the staff forgot to give it, she had awful mood swings, laughing crying and did bleed ..
She has been on Seroquel and buspar since seizures began as she had extreme behaviors , both very low doses
We are doing a CT abdominal scan next week to make sure another impaction hasn't formed, which initially led to a sigmoidectomy end of 2024..
Epilepsy drug is lamictal, also ordered for bipolar so I do not plan to increase doses or add any new if possible..
Soon as we think she's doing okay, two steps backwards..
I just don't think increasing estradiol the answer, neuro isn't a great help..
Thank you so much for your reply
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1 ReactionYes, two steps back. You mention she does not know how to take care of herself during her period, I can understand how that would be a huge problem.
When I try to explain what my sister’s daily functioning is like, friends just don’t understand. Sometimes its the simplest things that need constant reminders for her to take care of.
Today I got a notice that her health care coverage has dropped the pharmacy for her meds, its now out of network. Not really a big issue, but still something that needs follow up.
Hope the CT scan goes smoothly, with a good report!