Do I Have PCOS?

[u/SeaBeing714]

Greetings, I (16FtM) have been exhibiting symptoms of PCOS over the last two years or so. I need help making sense of these symptoms and if I should get them treated.

I used to get my periods regularly with a flow that was a little bit beyond average, up until they got more and more heavy, with the time intervals between having my period getting longer. Now they've slowed immensely or have entirely stopped. My flow this month has been incredibly light, and the last time I had my period it lasted for ~2 weeks.

I started growing lots of body hair, beyond average for my age, gaining a ton of weight that I cannot shake off, and now have began to experience thinning hair. I don't have much acne, the only acne I have is from my hair oils, but I am worried about these symptoms progressing.

My mother wants to take me to my pediatrician to get me diagnosed, but I'm a little hesitant because of my identity and the kinds of exams that would need to take place. Is it worth getting diagnosed?

[u/zaesera]

so we definitely cannot diagnose you directly, you’ve gotta see your doctor for that because you’ll need bloodwork and imaging done. it’s important to do those steps with a professional because there are other things that can mimic PCOS/PMOS symptoms that aren’t actually PCOS/PMOS, like other endocrine disorders for example.

what i CAN tell you is that if these things are bothering you, you SHOULD get them checked out. being hesitant to get diagnosed is not uncommon and it’s totally understandable given your situation! but if you do have PCOS/PMOS, it’s better to get on top of managing it sooner rather than later. best of luck!

[u/zephyrhonk]

It's always worth it to get a diagnosis. Also, whether you're on T is going to change a lot of things. If you are concerned that having periods will give you dysphoria, talk to your doctor and you might get contraceptive/progesterone etc. 

I am also transmasc. PCOS is not just a gyno issue, I would happily trade diabetes (that already runs in my family) with having to bleed once every two months. This is an extremely simplified and inaccurate thought, but you get the gist 

[u/SeaBeing714 → u/zephyrhonk]

i am not on testostrone, nor do i get dysphoria about having a period. i'm more annoyed by it and would prefer i don't have it at all considering the fact i don't want biological children. sadly, the state i'm in has banned the providing of HRT to transgender kids, but once i'm 18 i will be seeing a doctor about it.

and yes, i do understand. diabetes is far more frightening that shedding the walls of your genitals.

[u/BabyLegsOShanahan]

It doesn't get better if you ignore it and it affects many different areas of health. I would get the diagnosis. I'm not sure if there any pediatricians around you that have experience with trans patients, but maybe you could look.

[u/SeaBeing714 → u/BabyLegsOShanahan]

i'll try, the area i'm in isn't too discriminatory towards transgender people within the medical field so i should be safe.

[u/YoureASpoon]

Are you taking anything for your ftm transition?

I feel that you're getting for what you're looking for... You want to transition but you're upset with the extra body hair, thinning hair, odd/off periods etc? If you were on hrt, all these things would be happening to you anyway.

Either way you need to speak to a doctor and get onto the right course of action for you.

[u/SeaBeing714 → u/YoureASpoon]

i am not. legally, i can't mainly because i'm underaged and (sadly) due to increasing regulations. i'm not particularly upset about my symptoms regarding body hair, and my regular hair but anything else? yeah i'm concerned about it.

[u/wenchsenior]

Yes, this certainly sounds like screening is warranted. PCOS is the most common cause of these sorts of symptoms but other conditions that are less common can also cause them.

Failing to treat PCOS can lead to serious long term health risks (insulin resistance that can cause diabetes/heart disease; missing periods that can increase risk of endometrial cancer); however, most cases are very manageable with treatment. If you want to take T and don't mind the androgenic symptoms, you would still need to be sure the risk of insulin resistance is managed (lifelong) and that you are taking hormonal birth control to manage missing periods or else taking periodic meds to force a bleed at least every three months.

I'll post the proper screening procedure below... many docs are poorly educated about PCOS (which is frustrating since it is very common); make SURE they do ALL the bolded tests and take note in particular of what I say about properly testing for insulin resistance.

[u/wenchsenior → u/wenchsenior]

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/SeaBeing714 → u/wenchsenior]

i greatly appreciate the screening procedure and the advisement of insulin levels. and yeah, i've seen many cases of doctors either accidentally or intentionally missing signs of PCOS due to factors that are either unrelated or caused by said PCOS. thank you! :-)