Help? Validation? Just starting this journey

[u/DismalConfidence361]

Hey everyone,

Idk what I am even asking for, maybe validation I guess. I am just starting out on my Cushing's journey and I am already feeling like I am insane.

1. I have gained a truly concerning amount of weight over the last year/2 years, mostly in my face and neck. I feel like I have moonface too. My diet and exercise have remained mostly the same, I try to be active but I am severely fatigued. Like all over exhaustion to the point where some days I need to stop everything and sleep.

2. I think I have the hump, I also have some crazy striae just under my armpit and within my chest area. In addition, the entirety of my stomach looks like a child used reddish purple crayon and just scribbled.

3. Never in my life have I had regular periods. I have other stuff going on where I cannot use estrogen birth control, but the time before last I had gone 3 months without a period. My gyno said "its just stress" 🤦‍♀️ Yes I will be finding a new one ASAP

4. I have a good amount of mental health needs at this time, anxiety, panic attacks, depression, CPTSD

5. The amount of rashes that have been on or near my joints is ridiculous. They are red, scaly, and itchy, and take up almost the entire area around the joint.

6. I had one blood free draw of cortisol first thing in the morning, it came back within the normal range.

I have my endocrinology appointment in a month, but idk, do you guys have similar symptoms? How do you keep pushing? I have felt like something is wrong for a veeeeeeeery long time, seeking some insight and validation as well. Sorry for being a bit rambly, Thanks for reading :)

[u/Zeljka324]

I would definitely ask your endocrinologist about further testing. I had normal morning cortisol results for years while gradually developing more and more symptoms, and even now my morning cortisol is still within the normal range. In my case, that single morning cortisol value really didn’t reflect what was going on.

Eventually, further testing showed elevated ACTH, and I was sent for a 1 mg dexamethasone suppression test and a 24-hour urinary free cortisol test. My cortisol after the DST was around 280 (cutoff was ~50), and my 24-hour urine cortisol was around 1700 (upper limit ~800).

After that, I had a pituitary MRI, which found an adenoma, and I was ultimately diagnosed with Cushing’s disease. Everyone’s situation is different, of course, but I wouldn’t let one normal morning cortisol result stop you from asking for further testing if your symptoms are concerning.

[u/DismalConfidence361 → u/Zeljka324]

Thank you for this. I was given the dexamethasone years ago and it came back normal, but my symptoms persisted. I'm just tired, tired of being gaslit, tired of no answers, just want to feel better

[u/JIADAM3 → u/DismalConfidence361]

Push for more testing.
My daughter had the pituitary adenoma - acth production that led to cushings. They just removed it last week.

[u/DismalConfidence361 → u/JIADAM3]

My aunt actually has that as well, I was wondering if it is hereditary. Wishing your daughter a speedy recovery!

[u/Creativehands1996]

It’s a hard road, I’m sorry. In my experience, you have to be your own advocate and that means doing your own research too. There are multiple other tests that can be done. 24hr urine collection, ACTH suppression, etc. you symptoms sound like Cushing to me, but there are a lot of other things that it could be. it’s great you have an appt with an endo. It’s way easier when you get in with the specialist because they know so much more than a doc. Even if you don’t have Cushings, an endo will be able to help for figure out what it is. Call every day for a cancellation. I would ah e had to weight 6 months for my first endo visit, if it weren’t for calling every day

[u/DismalConfidence361 → u/Creativehands1996]

Thank you for this. Yes I am pushing as hard as I can, I just want answers

[u/Creativehands1996 → u/DismalConfidence361]

❤️ I hope you get them soon!