Cortisol deficiency, but with weight gain

I just read through this whole thread and THANK YOU for sharing your experiences and possible resolution. I have been to so many doctors over the last 2 years. So many blood draws, hormone panels, everything looks fine, maybe try taking vitamin D (heavy eye roll). I finally got in with an endocrinologist who gave me the overnight suppressions test (awakening response was very low but serum was normal, so again- nothing to be done). My levels were extremely low, but I have been struggling with weight gain when I’m not actively starving myself for years. I work out, I eat healthy and in high-protein macros, and if I don’t drop to 800 calories a day I just gain weight.

This has given me so much hope, and I feel like I can finally approach one of the doctors with a suggestion instead of dreading yet another telling me “wait and see”. Thank you!

I can't not thank you enough for the post!! It has been such a struggle getting docs to see or understand what I am feeling. This post changed everything for me!! I am scheduling an appt with an Endocrinologist today. God bless you!!

I am so happy for you. Jordan Peterson's daughter name is Mikhaila.

Has the Genotropin helped you lose weight ? I have the EXACT same issue, I have extremely low cortisol but I gained so much weight and I can’t lose any of it? I’ve done more cardio, strict diet, weightlifting, keto, NOTHING is working. I hope you see this 🙁

I don’t know if my cortisol levels have been checked, I will need to look through all my crazy blood work. It has been since COVID and I got so sedentary that I thought the weight was from that but it just keeps coming on. If one more person blames it on my age I’m going to scream! I went from 117 to 180 since 2020 but now I go back and forth with “slight” anemia, rheumatoid factor “low” but pain and fatigue high. I struggle to stay awake most days. I’m exercising off and on through the day. Seeing a physical therapist for my knee but she’s not too intense although I’ve noticed some improvement. People don’t want to hear how shitty you feel and how frustrated I am so it makes me feel pretty isolated. Photos then & now 😵‍💫

I’m so sorry you’re going through this. It’s hard to find doctors who will just listen, they all say the same thing but no one cares to actually dive deeper into the ROOT cause. It shouldn’t be this difficult to lose weight. People make it sound so easy. Just eat less and workout more! I wish it was that freaking easy!! It makes me feel pretty isolated too, I had to cry in my closet the other day because none of my clothes fits me the way it used to. But nothing in my diet or workout routine has changed !

I feel ya. I’m starting to record my food in fitness pal, maybe you can help me to be accountable. The main purpose is to illustrate to my doc. I had some kind of seizure last September and like I said, fall asleep without notice and so now they’re saying maybe it’s sleep apnea. Sure I have it because I gained weight but why! My legs and toes spaz out and sometimes my hands. The neurologist checks me for carpal tunnel, yes I have that too but it’s not giving me a seizure where I lay on the floor and every muscle inside and out is wrenching. I’m taking a bunch of gabapentin and arthritis pills and that helps the fire under my skin.

I’ve been unwell for over 25 years. My initial diagnosis was lupus, and I was treated accordingly for many years. But around 2015, I started to notice increasing swelling in my legs and stomach. I used to joke that I had a "wine belly" because the bloating would worsen after a glass of wine, but things soon got more serious. The water retention became persistent, and my GP attributed it to weight gain, advising me to eat healthily and exercise more.

I joined bootcamp, ate a protein-rich, balanced diet, and even tried Slimming World—but every week, the scales went up by another 1–2 lbs. People assumed I was in denial. But I wasn’t. I also began experiencing upper right quadrant pain, which was dismissed as gallstones (it wasn’t), along with constipation, anaemia, fatigue, and digestive issues.

By 2019, I had gained 4 stone, was deeply fatigued, in pain, and struggling with hormonal imbalances. By 2020, another stone. In 2021, I was almost double the weight I’d been in 2015. I eventually suffered heart failure due to fluid overload. Diuretics were prescribed, and I was discharged—but I was far from well. I could hardly walk or breathe, experienced chronic nausea, chills, severe fatigue, and tachycardia, and had stroke-like symptoms. After multiple hospitalisations with no clear answers, I was repeatedly sent home, with my health deteriorating further.

By this point, I couldn’t think clearly, my memory was failing, I struggled with speech, and could barely get out of a chair. In 2023, a blood vessel in my calf ruptured from pressure due to swelling—initially suspected to be a clot, but it wasn’t.

Desperate, I saw a private cardiologist who diagnosed me with dysautonomia and started me on high-dose diuretics, beta blockers, and BP meds. While there was some improvement, the disabling fatigue remained. My aldosterone and renin were elevated, and things escalated after a routine surgery—I became violently unwell with vomiting, diarrhoea, and near-total collapse. I was stabilised with IV fluids, then discharged.

Back at home, I crashed again. Assuming it was a lupus flare, I self-administered 10mg of steroids. Within minutes, I was up and hoovering the house. The fluid began to drain. I felt alive again. But doctors were angry about the steroid use and switched me to an immunosuppressant—which only made things worse. Eventually, my lupus consultant admitted: “I don’t think this is lupus.”

Finally, my cortisol was tested. The results showed severely low levels. By this point, I was so bloated and swollen that my facial features were barely recognisable. I was diagnosed with Adrenal Insufficiency and began cortisol replacement. Things started to improve—especially after combining cortisol with electrolytes. That was the turning point.

Now, my facial swelling has gone, and my weight is coming down. I still have a way to go, and a lot of the weight was due to immobility, but I’m gradually rebuilding my strength and function. I’ve joined the “Adrenal Insufficiency Day to Day” Facebook group, which has been an incredible source of support and knowledge. I’ve learned so much, especially about circadian dosing, which is helping me fine-tune my treatment.

Sadly, many doctors still know very little about this condition. It’s a dangerous illness and getting the treatment right is truly a matter of trial and error but also life and death - so please don't give up. But, finally, I’m on the right path—and I just want others to know they’re not alone.

Here is the exact name of the Facebook group... there are a lovely bunch of knowledgeable people on there who will help you to get answers. "Addisons Disease Adrenal Insufficiency One Day At A Time"