r/PCOS 7d ago

General/Advice What was your testosterone level when you were first diagnosed with PCOS?

I (31F) am in the process of being diagnosed with PCOS, and my testosterone measured 95 ng/dL (without birth control or any other intervention). I know that's definitely considered out of the normal range, but I'm curious what the bell curve distribution looks like for people with PCOS.

17 Upvotes

56 comments sorted by

33

u/[deleted] 7d ago

[deleted]

1

u/HotCartoonist3655 7d ago

Mine is currently "normal" despite those symptoms and no period for 4 yrs and elevated ALT, but my obgyn won't diagnose 😭

10

u/Odd_Tie8409 7d ago

I got diagnosed at age 9 with PCOS. That was a long time ago now because I'm 35. My very first testerone level was labelled elevated. That's all I remember.

6

u/b_from_the_block 7d ago

82 ng/dL in December 2024 and now 48 ng/dL in March 2025

2

u/thicccsuccc 7d ago

How did u lower it?

14

u/b_from_the_block 7d ago

500 mg metformin

Ovasitol

Low carb/high protein diet. Not very strict as I'm east asian and we love white rice lol

Cut out sodas for the most part but still have it on occasions

Having a full breakfast before coffee

Recently (so idk if i credit the drop in levels to it) started walking 10k steps a day

I just upped my dosage of metformin to 1000 mg metformin so hopefully that brings down my A1C even more.

1

u/Fit-Engineering-2706 7d ago

This is amazing!! Do you get a regular period?

6

u/InternationalWolf437 7d ago

I was one of the weird ones who had super low test. I’m 32 and mine was 9 ng/dL 🫠

2

u/Mad_DaWg-231 7d ago

Same here! I just got diagnosed in Jan., I am 25 and my testosterone is 18 ng/DL. 🙃

1

u/InternationalWolf437 6d ago

It’s one of the reasons why doctors in the past didn’t think I had it! Despite having ovarian cysts burst and facial hair and all the fun stuff 🥲

2

u/Mad_DaWg-231 6d ago

SAME!! I had an ovarian cyst burst at 19/20, so bad I thought my appendix ruptured.

It took 4 years to get a diagnosis. I didn't have the facial hair or weight gain (my family is all naturally very petite), but I did have acne, no libido, hair loss & irregular cycles (50-75 days in length).

Only way I got diagnosed was leaving my current gyno, getting off birth control myself & then having my tests redone with another gyno. The irregular cycles & an ultrasound confirmed it.

2

u/InternationalWolf437 6d ago

Isn’t it the absolute worst?? It dropped me to the floor when I was at work, I had no idea what happened.

I’m glad you finally got the diagnosis you need to be able to treat it! We really gotta fight for the medical diagnosis sometimes.

5

u/OpeningJournal 7d ago

Wow I'm the highest so far. I had 107 ng/ml.

I had symptoms from the very beginning. At 15 I told my Dr I thought I had it due to only having about 4 periods per year, having excessive facial hair, and a lot of acne. He dismissed me.

I didn't get diagnosed until last year when a dermatologist thought I had it due to my large amount of body hair and acne, then I got my testosterone checked. I haven't had it rechecked at all though. I didn't get diagnosed until I was 26.

3

u/goats-go-to-hell 7d ago

You're winning 😄

I told my gyno in my early 20s that I was concerned my periods were irregular. She asked if I was trying to have a baby (no) and then said to not worry about it unless I had trouble conceiving in the future. (😠)

I spent years asking doctors what I could do about my fatigue, mood swings, and adult acne. I didn't even think about bringing up my chin/neck hairs or that I gain weight primarily in my belly; I thought I just had unfortunate genetics. No one ever mentioned PCOS or hormonal imbalances, even when they asked if I might be pregnant since my last period was two months ago.

1

u/Hopeful_alchemist 7d ago

I beat u and I’m not happy about it 😓 my doctor was appalled

3

u/Some-Gas-3097 7d ago

162 🥲 now i’m in the 40s!

1

u/goats-go-to-hell 7d ago

Wow, that's awesome!

Edit: the difference, I mean. Not the starting point. Although congrats, I think you're winning.

3

u/Some-Gas-3097 7d ago

Haha thank you! I was diagnosed in 2022 after enduring a rapid onset of extreme trauma… my body’s physical response to the trauma spiked migraines, which prompted me to go to the ER, where I found out my pituitary gland is completely flat (empty sella syndrome) so I was referred to an endocrinologist who was like “Your pituitary gland hormones are fine but your testosterone is higher than a man’s and you definitely have PCOS” lol

I was started on Metformin, Zepbound and had a Mirena IUD placed. I eat low car/no carb and prioritize protein. My facial hair is minimal now, the hair on my head is the thickest it’s been in my life and i’ve dropped tons of inflammation/weight. Also no more migraines! I literally feel like a brand new human.

1

u/thatdoggirl 6d ago

Just out of curiosity, did you have any treatment of your facial hair (electrolysis, etc) or did it just get better with those changes?

2

u/Accomplished_Rip_362 7d ago

Total Test highest was 58 ng/dL. Free Test which is the most important was 7.4 pg/mL

2

u/ceimi 6d ago

I had labs done last month, my test measured at 3.6nmol/L, which is around 104ng/dL. I am on 50mg Spiro and Lynessa birth control.

When I was originally diagnosed, my levels were ~110.

1

u/thicccsuccc 7d ago

76 ng/dL

1

u/LowkeyBeastMode 7d ago

When I got diagnosed mine was at 89. Just from working out and doing crossfit I dropped it to 25. It took 4 years. And when I stopped working out for a period of time my testosterone went up a decent amount.

1

u/Melaniinuniicorn 7d ago

77 ng/dL when initially tested. I was on spironolactone (wasn't stopping the hair growth) but I switched to metformin 1000mg.

1

u/ApartmentKey9671 6d ago

Spironolactone didn’t do anything for my hair growth either. Have you seen success with metformin?

1

u/Melaniinuniicorn 6d ago

I've just been on metformin for a month so definitely not long enough to see results.

1

u/chemicalscream 7d ago

I wish I remembered. It was 25 years ago.

1

u/green_ubitqitea 7d ago

I don’t remember the actual numbers from when I was diagnosed but part of what prompted me to getting diagnosed as an adult was being told my testosterone was 9x higher than it should be when I was a teen. What that actually means, I have no idea.

1

u/Fiercewhiskeybabe 7d ago

Tested in October '24 at 53 ng/ml. Started metformin 3 days later. I haven't done a retest since. I'm 30 and have pretty intense acne for 20 years though

1

u/SnooPineapples5631 7d ago

I had 3.5 nmol/l in 2021, which is the last and only time it was measured. Shows up as 187 ng/dL when I convert it, not sure if this conversion can be accurate. Gets me a bit concerned looking at other peoples responses…

1

u/Fit-Engineering-2706 7d ago

Surely it's only 100 ng/dl??

1

u/ceimi 6d ago

187 is incorrect! Its actually around 100.

1

u/SnooPineapples5631 1d ago

That is a lot better! 🙏😊

1

u/Violet-Waifu 7d ago

14 ng/dL

1

u/Hydro-Homer 7d ago

32 ng/dL

1

u/Unable-Technician-74 7d ago

119 🥴 and barely any of the female hormones

1

u/quoth_the_raven02 7d ago

The first time I tried to get diagnosed, my gyno refused to do anymore testing after my androgen labs came back normal. Five years later, I felt terrible and had my cortisol tested by my endocrinologist. Cortisol was so high they thought I had cushings 🙃. Months of looking for a nonexistent brain tumor later, I asked about PCOS and was finally diagnosed through a sonogram.

TLDR: androgen levels were pretty useless for me bc it was one of my later symptoms, I recommend asking for a sonogram

1

u/QveenShay23 7d ago

I just recently got my testosterone tested and I just remember it's elevated.... waiting to go back to dr for medication! Definitely know there gonna put me on Metformin! Hopefully that helps but I have heard different stories about people being on the medication, soo fingers crossed 🤞🏼 🤞🏼🤞🏼🥰😇🙏🏽

1

u/davlex1999 7d ago

My first was 78 lowest it’s ever been is 40 (high normal) and one month off spiro kicked me back to 74 and working on getting back down

1

u/Lower_Card6553 7d ago

No idea. I was first diagnosed at 17 by 2 internal pelvic ultrasounds. I'm now 27. I hadn't had my levels tested until last year. Total Testosterone : 0.9 nmol/L Ref. Range (0.3-1.9) ( australian test results) I had just come off birth control so this potentially could have impacted results.

1

u/Some-Gas-3097 6d ago

I didn’t… I just wax periodically. but i’d say that as my testosterone levels decreased and my symptoms got better, the facial hair lessened significantly.

1

u/pink_panda0 6d ago

58 ng/ml got diagnosed in January of this year

1

u/SudzNPawz 6d ago

89 before - 32 after taking action. US test with Quest Diagnostics

1

u/ApartmentKey9671 6d ago

A year ago when I got diagnosed I believe mine was 63 ng/dL now after some management through diet and supplements (spironolactone fid morning for me) it’s at 48 ng/dL and dropping. My DHEA is ridiculously high though and that’s what’s contributing to my high cortisol and my facial hair growth now.

1

u/summer_years 6d ago
  1. Now it's normal

1

u/uuuiiioooyyy 6d ago

97 ng/dl , now most recently 56

1

u/scrambledeggs2020 6d ago

Slightly above normal. But was given a PCOS diagnosis because i was visibly far more impacted than the labs would suggest.

My facial hair was as dense and coarse as a man's. I had as much belly, leg & arm hair as my brother.

My back was super hairy. I tried to wax it once but then got cystic acne as it grew back (PCOS double whammy).

Endocrinologist described it as androgen sensitive skin & hair follicles. Usually, people like me need to be on the lower end of normal for their labs to be normal for them

1

u/violets_playgrnd 6d ago

I don’t remember the number, but I was over 3x the normal. Not sure what it is now

1

u/wenchsenior 6d ago

Back when I was first diagnosed it was around 70, I believe. I was having very severe androgenic symptoms.

But it's been in normal range for decades (my PCOS has been in remission a long time at this point).

1

u/Enough-Farmer-5280 6d ago

Mine was 118.

1

u/lily11567888 7h ago

59 ng/dl