My Cushings Journey
I am a male in my early 40s. In 2010 a >1cm mass was discovered in an MRI on my right adrenal gland. From 2010 to 2020, I gained a lot of weight. In 2020, I determined that I was going to do something about it.
I went from about 230lbs down to 175 through diet and exercise. I could not lose the abdominal fat no matter what I did. I was meticulous and religious in my weight loss program. But still could not get results.
After a ton of criticism from forums and Reddit saying I couldn’t be in a calorie deficit like I thought I was, I eventually gave up because it wasn’t working. Guess what? I was in a calorie deficit. It was Cushings causing that central fat to be so stubborn and my last 10lbs to refuse to melt.
About 4 months ago I had a routine mri that incidentally found the mass on my right adrenal gland had increased to 4cm. The doctors did some tests and within months I was diagnosed with clinical cushings.
I had never even heard of cushings until the endocrinologist diagnosed me. I had surgery on Tuesday this week to remove the mass. The difference is night and day.
My cushings was from a more rare source than pituitary. It was my adrenal. My ACTH levels were low because the tumor was overproducing cortisol. As a result, my body didn’t need to signal my adrenal system to make cortisol.
My pituitary system should be generating ACTH now, but my remaining adrenal gland is in remission. I have to take hydrocortisone supplements. I nearly passed out last night. The adrenal insufficiency is real.
The way I feel is weird. A lot of folks in here talk about cushings like it just makes you fat. That’s just one of the symptoms and it is possible to lose weight with cushings. I proved that.
What’s weird now is how calm everything around me is. My libido is waking back up. I haven’t had much of a sex drive in years. I no longer crave foods either. In fact, I have post operative anorexia.
I have lost 10 pounds in less than a week because I simply don’t want to eat. We all know that’s water weight. However, the anorexia is real. I feel the hunger, but don’t want the food.
The cortisol withdrawal is the most real part for me. I am so sick even though I’m supplementing with double the normal amount. And the adrenal crisis is real too. I nearly fell into it last night. I even had to get a medical bracelet so emts know to give me hydrocortisone so I don’t die.
Sleep has been a huge impact for me. My sleep schedule is very messed up. The doctor told me I basically have not had a circadian rhythm since I contracted cushings. Now I am starting to feel that rhythm, and I simply don’t know how to handle it. The world is so slow now.
The doctor equated the feeling I’m having to this: imagine if you are driving 135 mph on the highway and now you suddenly pulled off on an exit that’s 35mph. That’s what my body is doing right now.
Time is passing so slowly. Things that used to stress me out are kinda whatever now. I’m curious to see how I am going to feel when I reduce my hydrocortisone even further. I’m supposed to taper down to a normal human being dose on Sunday.
Thanks for reading. I just wanted to share. Mainly because I’m bored sitting here with nothing to do.
Edit: if anyone is curious what tests I had done, DHEA-S twice, 24h urine, dexamethasone suppression, late night saliva, ACTH, aldosterone and something else. Every cortisol test came back abnormal every time. The other hormones were not abnormal.