Diagnosed with POI at 36. Could it be linked to my son’s severe autism and intellectual disability? (Fragile X?)
▲ 12 r/fxPremutationCarriers+3 crossposts

Diagnosed with POI at 36. Could it be linked to my son’s severe autism and intellectual disability? (Fragile X?)

Hi everyone,
I am 36 years old and was recently diagnosed with POI (Primary Ovarian Insufficiency). I have three children. I originally agreed to genetic testing to see if my 18-year-old daughter might inherit this, so she could consider freezing her eggs.
However, after a stressful call with my doctor, I started researching and am now completely overwhelmed.
My youngest son (11) has an intellectual disability and Level 3 Autism. He does not have the typical facial features often described online for Fragile X. My middle son (16) also has autistic traits and a split profile (high verbal, lower performance). I myself have ADHD and anxiety. [1]
I just found out that being a Fragile X premutation carrier can cause POI in mothers and can expand into the full Fragile X mutation in sons, causing intellectual disabilities and autism. [1, 2, 3, 4]
How likely is it that my POI and my son’s disability are just a coincidence?
Has anyone else gone through this exact realization after a POI diagnosis?
Is it common for children with Fragile X not to have the typical facial features at a young age?
I’m currently in a lot of emotional distress and honestly terrified of what the genetic test might reveal. I would love to hear your experiences or insights. Thank you.

u/Gloomy-Telephone6086 — 4 days ago
▲ 4 r/POIsupport+1 crossposts

Diagnosed with POI at 37. Are these HRT lab results normal? Looking for advice on Estrogen, Ferritin, and Testosterone.

Hi everyone,
I’m 37 and was recently diagnosed with POI. Before starting HRT, I hadn’t had a period for 9 months and felt awful: severe mood swings, feeling emotionally flat, back pain, vaginal dryness, insomnia, and hot flashes.
In May, my FSH was around 70, and Estrogen fluctuated between 73 and 196. I started HRT: a 50 mcg Estradiol patch (twice a week) and 100 mg Progesterone nightly.
While my symptoms improved, I still struggled with heavy mood swings. At my second appointment, my doctor increased my patch to 75 mcg and ordered more blood work to rule out autoimmune diseases.
I just got my new lab results back, and I’m a bit confused:
Estrogen: 810 (Is this not incredibly high while on HRT, especially since it was 810 on the 50 mcg patch before updating to 75 mcg?)
FSH: 14.6 (dropped from 70)
LH: 10.6 (dropped from 32)
AMH: 0.56
Prolactin: 252
Testosterone: 0.9
Vitamin D: 81.8
Ferritin: 23
I still don’t feel great (better, but not super). I have a few questions for those with more experience:
Estrogen level: Is 810 normal or too high for a 50 mcg patch? Is moving up to a 75 mcg patch wise given this number?
Ferritin (23): Where I live, anything above 20 is considered "normal," but I keep reading that 23 is actually quite low and can cause fatigue/mood issues. Thoughts on this regarding POI?
Testosterone (0.9): What is your opinion on this value? Could a low level be contributing to my low mood and lack of well-being?

reddit.com
u/Gloomy-Telephone6086 — 22 days ago

Poi? Menopause at 37 ? How can this happen?

I’m 37 and very confused about my hormone results and possible POI/perimenopause. I’d really appreciate hearing other people’s experiences.

I had a hormonal IUD for about 15 years (with replacements in between) and had my youngest child 10 years ago. I always still had light but regular periods. In 2024 my cycle became less predictable, and in early 2025 everything changed. I suddenly bled for 4 weeks straight, then stopped for a week, then bled again for 2 weeks. It kept changing: light pink, then very heavy with clots, then dark red. After that, my periods stopped completely for the last 10 months.

During this time I became extremely exhausted and felt unlike myself. I had insomnia, hot flashes, muscle pain, felt emotionally flat, overstimulated, disconnected, and couldn’t enjoy things anymore. I also have ADHD and this felt very different from “normal” burnout or stress.

In January my doctor ordered an ultrasound because I had pain during sex. It showed my IUD was sitting low, so it was removed. Since I still had no period, we waited 3 months to see if my cycle would return.

Last week I asked for more blood tests because I still felt awful.

First results:
FSH: 62.30
LH: 32
Estradiol: 72

My doctor discussed it with a gynecologist and said because of my symptoms I can already start estrogen patches after repeat bloodwork.

Second results 6 days later:
FSH: 66.70
Estradiol: 196

Now I’m confused because my estradiol suddenly seems more “normal,” and Google is making me anxious. Does this still sound like POI/perimenopause? Can hormone levels fluctuate this much? We still have a child wish, so this is emotionally very hard.

Has anyone had similar blood results or symptoms?

reddit.com
u/Gloomy-Telephone6086 — 3 months ago

Can someone help me?

I’m 37 and very confused about my hormone results and possible POI/perimenopause. I’d really appreciate hearing other people’s experiences.

I had a hormonal IUD for about 15 years (with replacements in between) and had my youngest child 10 years ago. I always still had light but regular periods. In 2024 my cycle became less predictable, and in early 2025 everything changed. I suddenly bled for 4 weeks straight, then stopped for a week, then bled again for 2 weeks. It kept changing: light pink, then very heavy with clots, then dark red. After that, my periods stopped completely for the last 10 months.

During this time I became extremely exhausted and felt unlike myself. I had insomnia, hot flashes, muscle pain, felt emotionally flat, overstimulated, disconnected, and couldn’t enjoy things anymore. I also have ADHD and this felt very different from “normal” burnout or stress.

In January my doctor ordered an ultrasound because I had pain during sex. It showed my IUD was sitting low, so it was removed. Since I still had no period, we waited 3 months to see if my cycle would return.

Last week I asked for more blood tests because I still felt awful.

First results:
FSH: 62.30
LH: 32
Estradiol: 72

My doctor discussed it with a gynecologist and said because of my symptoms I can already start estrogen patches after repeat bloodwork.

Second results 6 days later:
FSH: 66.70
Estradiol: 196

Now I’m confused because my estradiol suddenly seems more “normal,” and Google is making me anxious. Does this still sound like POI/perimenopause? Can hormone levels fluctuate this much? We still have a child wish, so this is emotionally very hard.

Has anyone had similar blood results or symptoms?

reddit.com
u/Gloomy-Telephone6086 — 3 months ago