u/No-Victory481

hi everyone

I've been wondering for a longgggg time whether I could have cyclical Cushing's and would really like to hear from anyone who's been through something similar to my story. And before i get in to it i just wanna say im sorry for everyone who finds themselves here seeking answers and support... going through this is the most isolating and infuriating process!!!

Ok, so I've had a complicated relationship with weight since childhood, this sadly led to severe anorexia when I was younger, so unfortunately a lot of my later weight gain has automatically been attributed to eating/mental health. immensely triggering to be told "you just need to eat less and move more" when you're trapped in a broken body!

I've had several periods over the years where I've gained a really significant amount of weight very quickly (up to around 10–14 kg over a few months) followed by periods of being relatively stable again. It definitely hasn't felt like a straightforward gradual weight gain.

The first major episode was around 2011/12, when I also had things like headaches and sweating. I had a pituitary MRI because of this. Apparently one side of the pituitary initially looked slightly enlarged, although it was ultimately considered normal.

I've since had more episodes of substantial weight gain, despite dieting and exercising A LOT including another really bad period a few years ago (2020-22) I gained a huge amount of weight rapidly and at the same time my mental health completely fell apart. I became extremely anxious and depressed and eventually had a nervous breakdown. I was suicidal and ended up moving into my grandma's empty house because I couldn't cope with being around people and basically wanted to disappear for a while.

The whole thing was horrible because I felt like people were watching what I ate and assuming I must be overeating. before I moved into my grandmas house I even had flatmates monitoring whether I was eating at night or something. Given my history with anorexia, it was incredibly distressing.

I've also since been diagnosed with ADHD, but medication hasn't really changed any of this or explained the episodes.

i stabilised 2023-2025 at the same weight but now I'm noticing the pattern again. I've gained around 4 kg since March, although it seems to have stabilised for the moment. I went to PT in my worst flare up and as the weight rose he asked if was secret eating 🤦🏻‍♀️

I've had various cortisol investigations over the years, including a 24-hour urinary free cortisol of 202 nmol/24h, a previous serum cortisol of 609 nmol/L, and several dexamethasone suppression tests which suppressed to around 21–28 nmol/L.

My pituitary imaging has also been a bit confusing. One of my later MRI reports described the pituitary as significantly thinned, which seems quite different from the original scan. I've had different things said about the imaging over the years.

After two unhelpful and invalidating endos (male) I've now finally seen a woman pituitary specialist. She said I'm not currently Cushingoid, which is reassuring, but she also said that cyclical Cushing's could still be a possibility, and that the difficulty is catching the abnormal cortisol when I'm actually in a cycle.

She's going to ask her mdt if my previous MRI can be reviewed by the pituitary team and may arrange further imaging. My recent bloods also showed raised TSH with low FT4, so thyroid disease is now being investigated as well, including thyroid antibodies.

i would be interested to hear your thoughts!

main issues

• big episodes of weight gain followed by periods of stability
• extreme mental health issues / anxiety / dark ideations
• normal cortisol tests between episodes
• little Cushingoid appearance
• confusiom between abnormal and normal pituitary MRIs

How did you eventually manage to catch a cycle on testing if u caught it?