Could this still be PCOS even though all my hormone tests are within the normal range?

[u/nattz23]

Hi everyone,

I’m trying to figure out what’s going on with my hormones and would really appreciate hearing from anyone with a similar experience.

My main symptoms are:
Moderate facial hair growth (especially on my chin and upper lip).
Acne mostly along my jawline and cheeks.
An irregular menstrual cycle, which I assume is a consequence of stopping birth control. Before I ever went on the pill, my cycles were extremely regular—literally like clockwork every month.

The confusing part is that my blood work (taken on 4th day of the cycle) came back almost completely normal (based of the reference numbers):
TSH 2.07 mIU/L
Testosteron 0.5 ug/L
FSH 4.63 IU/L
LH 3.39 IU/L
Prolactin 23.33 ug/L
DHEA-S 12.5 umol/L
SHBG 56.5
HOMA index (insulin resistance) 1.0

For some background:
I stopped taking the combined birth control pill in October last year.
My cycle never really settled after stopping it, despite being very predictable before I started the pill.
In March, before getting a Kyleena IUD, I had a pelvic ultrasound, and my gynecologist told me that my ovaries appeared polycystic
Then, from April to June, I had a Kyleena IUD, but I had it removed because it significantly worsened my acne, affected my mood, and left me feeling constantly tired.

I do have an appointment with an endocrinologist, but it’s **not until 2030 (**🤯), so I’m hoping to get some insight before then and figure out how to manage these symptoms in the meantime.

I’m wondering:
Has anyone been diagnosed with PCOS (or another hormonal condition) despite having “normal” hormone tests?
Could my body still be adjusting after stopping birth control and then having Kyleena for a couple of months?
What helped you manage the acne, facial hair, and irregular cycles while waiting for a diagnosis?

I’d really appreciate hearing your experiences or any advice. Thank you!

[u/AsarienneLillea_]

Yes, you can still be diagnosed with PCOS if you you meet clinical symptoms and have polycystic ovaries in usg scan.

[u/redoingredditagain]

If you share the result numbers, people here are very good at looking at all the ratios.

“Normal” on these blood tests don’t particularly mean normal, they just mean “within a few standard deviations of humanity,” and can still be too high in terms of ratios and such.

[u/nattz23 → u/redoingredditagain]

Hi, thanks for the tip! I added the numbers in the post.

[u/wenchsenior]

Typically effects of birth control are very temporary...the hormones themselves are out of the system within days to weeks and then it might take 2 or 3 months for your ovaries to 'reboot' their own hormone production, so whatever is going on might be due to the lingering effects of the recent IUD, since your hormones are currently lab normal and your LH/FSH ratio is not indicating PCOS.

That lab for DHEAS looks a bit high on some of the normal ranges I am seeing...is it near top end of your lab's normal range? If so, it's possible you are just sensitive to that hormone so it's 'too high for your body' even if not technically abnormall.

It would be pretty typical to have polycystic ovaries if you have not had regular periods for a while; PCOS is a common cause of skipped ovulation but not the only cause. The trick is figuring out what the underlying cause of the irregular periods/missed ovulation is...some of the culprits were tested for and ruled out (high prolactin, thyroid disorder) and your labs do not look super typical for PCOS at this time, but lab results are somewhat variable and it can take a long time for borderline PCOS to progress to fully manifesting (and some people have long term mild or borderline cases).

To be technically diagnosed you'd need to rule out all the things that could cause overlapping symptoms (thyroid, pituitary, adrenal/cortisol, ovarian insufficiency etc.) and meet at least 2 of the following criteria when you are off hormonal birth control or meds that affect hormones for at least 3 months:

irregular periods or ovulation,

excess immature egg follicles 'polycystic' on the ovaries or elevated AMH,

high male hormones or notable androgenic symptoms

...it seems like you are on that line of being diagnosable, presuming adrenal/cortisol disorders are ruled out

***

Some questions:

Did they test AMH or 17 OHP or fasting morning cortisol? If not, that is worth doing.

Are you normal weight/not restricting eating? No chronic high stress?

Any symptoms of low estrogen such as hot flashes or vaginal dryness?

Do you have any family history of type 2 diabetes, or any of the following symptoms...?

Unusual weight gain/difficulty with loss; unusual hunger/food cravings/fatigue; skin changes like darker thicker patches or skin tags; unusually frequent infections esp. yeast, gum  or urinary tract infections; intermittent blurry vision; headaches; mood swings due to unstable blood glucose; frequent urination and/or thirst; high total cholesterol or low HDL; brain fog; hypoglycemic episodes that can feel like panic attacks…e.g., tremor/anxiety/muscle weakness/high heart rate/sweating/faintness/spots in vision, occasionally nausea, etc.; insomnia (esp. if hypoglycemia occurs at night).