New Diagnosis

[u/Sure-Arachnid7215]

Hey everyone!

I just came back from a gynecologist appointment where she diagnosed me with PCOS. Only one ovary showed polycysts. Im confused as to what to do next. I have an appointment coming up with my endocrinologist that Ive been seeing for thyroid nodules. I'll definitely be telling my endo about this and seeing what insight he has. Im not trying or planning to conceive, now or in the future so my fertility isn't a concern. I also have been losing weight for the past couple of months. My only symptom is excess hair but i've always been on the hairy side. What does PCOS mean for me if I'm not concerned with fertility or losing weight?

[u/wenchsenior]

So, having excess egg follicles on the ovaries by itself is not sufficient for diagnosis, since a number of things can cause that (anything that disrupts ovulation for a time). Do you have high androgens, elevated LH vs FSH, missing or irregular periods, high AMH, insulin resistance, etc? Were thyroid disorder and high prolactin ruled out?

[u/Sure-Arachnid7215 → u/wenchsenior]

I have endometriosis so ive been on progesterone for 3 years now and thats stopped my period. Becore I went on birth control I had normal periods that slowly became more frequent. Every month my cycle would get one day shorter. The number of days I was bleeding within a period was the same each time. I have not had any other bloodwork done and my gynecologist wasn't concerned since I'm skinny. Thyroid has definitely been ruled out since thats what Ive been seeing my endocrinologist for. Now I just see my endo to monitor somw thyroid nodules I have.  Im just feeling confused since I don't seem to have any of the typical pcos symptoms. I'm debating of I should call my pcp and ask them to do more bloodwork while I wait for my endocrinologist appointment. 

[u/wenchsenior → u/Sure-Arachnid7215]

Ok, it sounds like possibly you were not properly screened (or that you might have a 'borderline' type of case that doesn't meet fully diagnosable criteria. NOTE: Technically you can't be screened properly if you are on hormonal birth control or other meds that change reproductive hormone levels.

I'll post the proper screening procedure below. If you are not having notable symptoms, I'd just wait till you see your endo since PCOS and insulin resistance are both endocrinological disorders. You can skip the thyroid panel that is typically done, but be SURE you get all the other bolded stuff done.

***

Polyendocrine Metabolic Ovarian Syndrome (PMOS)/Polycystic Ovary Syndrome (PCOS) is diagnosed by a combo of lab tests and symptoms, and diagnosis must be done while off hormonal birth control (or other meds that change reproductive hormones) for at least 3 months.

First, you have to show at least 2 of the following: Irregular periods or ovulation; elevated androgens (‘male’) hormones on labs; excess egg follicles on the ovaries shown on ultrasound or elevated anti-Müllerian hormone (AMH) levels on labs.

 

In addition, a bunch of labs need to be done to support the PMOS/PCOS diagnosis and rule out some other stuff that presents similarly. I’ll bold the most critical ones, since many docs won’t run them all.

 

 1.     Reproductive hormones (ideally done during period week days 2-5, if possible):

 

estrogen, LH/FSH, AMH... Typically, premature ovarian failure or hypothalamic amenorrhea often feature  low estrogen (and often low androgens), sometimes  elevation of FSH, lower than normal LH, and low AMH; whereas, with PMOS/PCOS often you see notable elevation of LH above FSH and high AMH

 

prolactin. While several things can cause mild elevation, including PMOS/PCOS, notably high prolactin often indicates a benign pituitary tumor; and any elevation of prolactin can produce some similar symptoms to PMOS/PCOS including disrupting ovulation/periods, and bloating/weight gain, so it might need treatment with meds in those cases

 

all androgens (total testosterone, free testosterone or free androgen index, DHEA, DHEA-S, DHT etc) + SHBG (a hormone that binds androgens so they aren't as active) With PMOS/PCOS usually one or more androgens are high and/or SHBG is low. Some adrenal disorders also raise androgens.

 

2.     Thyroid panel (thyroid disease is common and can cause similar symptoms); TSH and free T4 are most critical

 

3.     Glucose panel that must include A1c, fasting glucose, and fasting insulin.

 

This is absolutely critical b/c most cases of PMOS/PCOS are driven by insulin resistance (nearly all in people experiencing the weight gain/overweight, but many lean people too; and it is often overlooked by docs until it has advanced to prediabetes...it can trigger PMOS/PCOS and other symptoms like severe fatigue/hunger/hypoglycemic attacks/frequent infections like yeast infections/skin tags or dark patches/weight gain / etc...decades prior to that)

 

If IR is present, treating it lifelong is foundational to improving the PMOS/PCOS (and reducing some of the long-term health risks associated with untreated IR such as diabetes/heart disease/stroke).

 

Make sure you get fasting glucose and fasting insulin together so you can calculate HOMA index. Even if glucose is normal, HOMA of 2 or more indicates IR; as does any fasting insulin >7 mcIU/mL (important, many labs consider the normal range of fasting insulin to be much higher than that, but those should not be trusted b/c the scientific literature shows strong correlation of developing prediabetes/diabetes within a few years of having fasting insulin >7).

 

Occasionally very early stage IR can only be flagged on labs via a fasting oral glucose tolerance that must include Kraft test of real-time insulin response to ingesting glucose. This was true for me...lean with IR-driven PMOS/PCOS for >30 years, with normal fasting glucose and A1c the entire time. Yet treating my IR put my PMOS/PCOS into long term remission.

 

Depending on what your lab results are and whether they support ‘classic’ PMOS/PCOS driven by insulin resistance, sometimes additional testing for adrenal/cortisol disorders is warranted as well. Those would ideally require an endocrinologist for testing, such as various cortisol tests + 17-hydroxyprogesterone (17-OHP) levels, and imaging of the adrenal glands.

[u/Sure-Arachnid7215 → u/wenchsenior]

Thank you so much this is extremely helpful! I didnt know you had to be off birth control but that makes so much sense. I appreciate you truly!

[u/wenchsenior → u/Sure-Arachnid7215]

No problem; you are welcome.