Unfortunately I do have pcos. I have lean pcos and I was diagnosed twice by two different endocrinologists. I didn’t believe it and I still don’t fully ONLY because pcos is an umbrella term, so what causes one woman’s pcos will not be the same root cause in another woman and I believe something set off my hormone imbalance as opposed to being born with it as they claim women with pcos are. I was diagnosed with insulin resistance and impaired glucose tolerance after failing the OGTT and later diabetic postprandial blood sugar readings were discovered, so type 2. I was found to have polycystic ovaries on three different ultrasounds. And have had elevated total testosterone in the past. I also was diagnosed with adenomyosis, which is similar to endometriosis and is common in women with pcos. I also was diagnosed with Androgenetic Alopecia by my hair loss derm recently. I agree with the diagnosis and believe my loss is Androgenetic Alopecia as I can see miniaturized hairs and vellus hairs. Nothing grows back and it is balding just like my father’s. No women in my family have hair loss, but my father does.
I have already tried Rx strength nizoral/ketoconazole shampoo for a year. It doesn’t work for me. I no longer shed excessively but am still balding. I also get acquired progressive kinking of the hair, which is a feature of Androgenetic Alopecia. My hair is MUCH worse than it was when I posted this and the original photos attached. Unfortunately women can bald in a Norwood pattern and men in a Ludwig, it’s just not as common. For many women with pcos, like me, they often bald at the temples and lose their hairline. I wish my hair loss was CTE, but it unfortunately is not.
I use the term pcos very loosely because as I said it is an umbrella term, but that’s the best diagnosis that can currently be applied to my symptoms. Even though my SHBG is not low, I believe it is due to my elevated cortisol which is what spikes it. I’ve already seen two pituitary specialists at top clinics who had ruled out adrenal and pituitary tumors, and again I’m just left with the pcos diagnosis. I’m not hairy..yet, but I started developing darker and thicker body hair within the last few years back when my symptoms started. My armpit hair grows sooo thick and jet black now and multiple hairs will grow from one follicle, basically pili multigemini. I used to br able to not shave my pits for weeks, I was virtually hairless and now I have to shave at least once a day, if not twice because it grows back by the end of the day. Same with my legs and last summer my thighs started growing hair on them when I didn’t have any there before. My pubic hair extends well past my bikini area now and my face developed long peach fuzz all over it when I used to have none and I have a couple dark hairs I have to pluck from my upper lip now. My Dheas shoots up and down so I feel like my pcos is of adrenal origin and most likely related to my high cortisol.
I either had some type of mild pcos all of my life and it’s just hitting that tipping point where the symptoms are now becoming obvious after so much exposure to screwed up hormones or something triggered my hormones to go whacky. About three years back I had elevated total testosterone on multiple occasions. Like upper 70s out of a range topping at 45, but no one told me anything about it. Now it’s in range and my free T has never tested out of range, but my total T likes to bounce around and even though endos tell me it’s the free that affects your tissues, I’m always symptomatic when my total T is elevated. My last test in May showed my total T was at the top of the range at 45, but SHBG was 118 which was high end normal and free T was up from 1.4 to 2.8, which I swear I am more symptomatic when my free T starts to stray closer to the top of the range.
Sorry for the long post, but the reason women like me with “lean pcos” often go so long undiagnosed and end up developing things like adenomyosis which can develop from unbalanced hormones, and end up shockingly with diabetes is because not many people/drs are educated on pcos and they don’t realize that you don’t have the be obese or excessively hairy to have it. Everyone metabolizes hormones differently and the level of sensitivity to androgens varies from person to person. Genetics also plays a role in how you present with pcos. It’s exactly why some people bald and some people don’t. Same even goes for something like Cushing’s Disease/Syndrome. One of the pituitary/Cushing’s specialists I used to see told me she has had patients who don’t look cushingoid at all, it all depends on how your body metabolizes cortisol.
I’ll post some pics of my hair, but it’s getting to the point where it’s embarassing to post now, honestly. Lol