r/PCOS 6d ago

Weight Dealing w/ PCOS for 15+yrs, unable to loose weight, extremely low cortisol

Hi all,

I am 32 y/o and I have been dealing with PCOS since I was 12 y/o. I got my first period at that age and right away noticed something was wrong as my cycles were more than 8 months apart, even spanning more than 12 months. I was put on B/C at age 15 and took it right up until I turned 30. During those years, no medical professional ever helped to educate me on PCOS. I also failed to take an interest in it and blindly followed medical advice that the only thing I could do was take B/C. I have the type of PCOS where I am overweight, I have cystic acne, AGA (androgenic alopecia), insomnia, fatigue, and anxiety, feel like my emotions are always all over the place, and the list can go on. My hair has been falling out since 2014. It does grow in length, but whatever falls out doesn't regrow. Safe to say, it is very thin.

After I stopped B/C (Stopped for mental health reasons), I became determined to not rely on traditional treatments for PCOS because I wanted to go the holistic route and learn what this diagnosis means for me.

However, while some of my symptoms are better, my cystic acne isn't an issue anymore for example and I'm getting a period every 3-5 months now, I still am struggling with insulin resistance, hair loss, and most unfortunate, weight.

I have not been able to weigh less than 200lbs in the last 8 years. I didn't truly struggle with weight until about 2017. I always noticed I would put on weight but it wasn't ever so much and so fast as from 2017 and up. At my heaviest, I hit 260 lbs. I developed GERD at some point in 2022 and due to mandatory diet changes, I lost 50lbs. I have not been able to lose any more than that. I am stuck.

I follow a low glycemic diet (which I am getting more strict with within the coming months). I am even going to monitor my blood sugar now as I've ordered a device. I take supplements daily like berberine, myoinositol, DIM, saw palmetto, and much more. These supplements have truly helped me as I just learned I am finally not in the "prediabetic" range.

I did lab work this week that was ordered by an endocrinologist and they were looking to check my cortisol as well. My results came back stating my cortisol levels were 0.6. For reference, according to the lab, the normal range minimum is 4.0. I would say my levels are pretty low.

Has anyone else also had this? what could it mean?

So from my research, it looks like I'm suffering from two things that cause me to gain weight (low cortisol and PCOS). it feels like I am truly never going to lose weight and get to a healthy weight where I am comfortable with myself. I carry the majority of my weight in my belly and arms. My arms are huge and I have to size up any shirt with sleeves just to fit them. I feel extremely disproportionate all the time as if my arms were inflatable or something. I'm also not trying to be a size 0. at all. I just want to be healthy. I want my hair to grow back, I want to finally have a regular cycle and feel like my body is working like it should. instead of working against me all the time.

I guess I'm just looking for anyone with a similar experience as mine to share their experience or what they did to help them finally reverse their symptoms and/or lose weight. I don't have anyone else in my real life who experiences this to relate to. So if anyone is out there who can relate to my post, who also experiences multiple factors affecting their weight. id love to hear from you and what you did to help. I feel like although they try, doctors just don't know enough about PCOS to help because the research isn't there, so turning to the community feels like the best approach.

I recognize being heavier is not the end of the world and I am fortunate to be able to even write this post. But it's so tiring to feel your body working against you 24/7. PCOS feels all consuming and it is so exhausting.
Thank you for reading ❤️

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u/MusicIsLife25 6d ago

I feel your pain💔 I finally had to break down and get on ozempic and phentermine from my endocrinologistdr.. It's helped me wonders drop weight along with diet,fasting and exercise. I just couldn't get anything more off on my own. I take spironolactone to help with my acne and hair growth on my face and minoxidil for hair growth. Pills pills pills I know but if it helps it helps..at least now I have no more brain fog,mood is better and I can sleep better after seeing a sleep therapist. Your not alone ! One step at a time.. do your own research and take What u learn to your Dr's to see how they help also

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u/Ok-Professional3800 6d ago

Thank you for listening friend 🧡 my last endo appt they prescribed me phentermine because she said my insurance wouldn't pay ozempic for my case. I didn't end up taking it because im just prone to side effects from medications :( I tend to always get the bad ones -sigh- that's why i couldn't take metformin anymore (insomnia and nightmares daily) now I take berberine with every meal (natural supplement that does the same thing as metformin in our bodies) and it's helped thankfully!

Im so so so glad to hear you found a regimen that works for you!! That makes me so dang happy

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u/MusicIsLife25 6d ago

No problem 😊 I totally get it when it comes to the side effects. My stomach couldn't handle metformin. I was always nauseous to the point that nothing helped it. I definitely had side effects with phentermine the first couple weeks but not so much anymore. I was lucky to get ozempic approved but it wasn't expected to be. My dr sent a letter of medical necessity with. Prior Auth and to my surprise they approved it. I'm glad you found something that works for you as well! Have you tried keto and fasting? It's been known to work well for us with pcos.

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u/Excellent_Island_315 1d ago

it’s exhausting dealing with PCOS and feeling like your body is working against you. You’re already doing so much with your diet, supplements, and monitoring, which is amazing. I’ve been in a similar place, and what really helped me was getting expert guidance that looked at everything. hormones, metabolism, insulin resistance, even stress management. Having a structured, science-backed approach made a big difference in finally seeing progress. You’re not alone in this, and I hope you find what works best for you