Connect
Cortisol deficiency, but with weight gain
Has anybody experienced unexplained weight gain when your cortisol levels are low? I recently had a two day stem test, which resulted with low cortisol levels that my adrenal glands are not producing correctly.. but I have unexplained weight gain. Usually when your cortisol levels are low, you lose weight.
I went back to all my test results from 2016 when I started to gain weight and feel drained and just sick. They gave me so many tests, and they claimed everything was normal. I did not have MyChart at the time, so I never could see the test results until recently when I scrolled all the way back to that time and seen my cortisol levels were extremely low. I don’t understand why nothing was ever done.
Last year, I started getting the same exhaustion and fatigue and weight gain for no reason and then I got Covid at the beginning of this year and then everything became severe. 24/7. That’s when I went back to the endocrinologist and thought it was my thyroid because I do have Graves’ disease, which is supposed to be in remission right now, but they said everything looked good in the normal levels, except my cortisol levels were low for that time of day and that’s when I took the stem test.
When I ask why I’m gaining weight, nobody knows. They want me to take steroids for the low cortisol levels, but I know I’m going to blow up once I start taking them.
I am also having muscle and joint pain and weakness in my whole body which I think might be related, but I don’t know… I just know I’m getting very frustrated.
Does anybody know or have any autoimmune disease that causes low cortisol levels, but unexplained weight gain instead of weight loss with fatigue and muscle and joint pain?
I’m getting tired of going from doctor to doctor when all they do is take blood tests and come into the room for less than five minutes to say blood tests are fine, nothings wrong. Ughhhhh I need answers!!!
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
I forgot to add that Lymphnodes all checked out under ultrasound. And along with low cortisol and extreme weight gain, I’m feeling muscle aches and pains and like if I try to stretch, (until recently I was very limber from being a male University cheerleader) I feel like my muscle (and now fat) would rip and my joint socket would pop out. Like the muscle is about to tear. I also had COVID fairly recently. For the first and I hope only time. It took a long time to recoup but this was happening beforehand and only exasperated it. Thank you for any insight but like I said, so relieved I’m not alone.
-
Like -
Helpful -
Hug
1 Reaction@mh10
OMG, this is the story of my life. I'm almost 50 & I've been BEGGING doctors to help me since my 20s, but my labs are "normal" (they're not really, but I've been told the results that are abnormal, like low cortisol or albumin & abnormal red blood cells, are okay to be "abnormal", that it's actually normal) so even if the doctor is shocked by my symptoms when I go in, when my labs come back, all my symptoms get dismissed. Worse yet, my mother died suddenly before 50, my aunt died suddenly in her early 70s...neither with any sign it was coming other than these symptoms I share with them...and now my 29 year old daughter is developing symptoms!!!! It's been one thing to lose hope, to resign myself to a shorter life than my grandmother, (my mother & aunt's mother), her sisters & mother, who lived into their late 80s to over 100, but the just as futile desperation to save my child is another thing entirely. I don't know what to do next. I've tried going to universities like the University of Pittsburgh with even worse results. I find myself wondering if I need to go to someplace like Cleveland Clinic or Mayo Clinic or Emory University or Stanford University...or if the extra expenses of seeking out these & similar institutions, including the costs of travel & lodging, would just end up wasted on more of the same. 😭
-
Like -
Helpful -
Hug
3 Reactions@zmcarver I struggled with the same problem for years until I insisted on seeing an endocrinologist. They ordered an ACTH test, which finally helped identify the underlying issue. I strongly recommend finding an endocrinologist or seeking care at a nearby university clinic, as they often have more experience with complex or overlooked cases.
Here is some information on high or low cortisol: https://swaresearch.blogspot.com/2023/10/cortisol-endocrine-system-hypothalamic.html
-
Like -
Helpful -
Hug
2 ReactionsHave you have a complete body PET SCAN, also fasting cortisol blood test plus complete hormonal panel and complete thyroid panel ?@zmcarver
-
Like -
Helpful -
Hug
1 ReactionIf no help from current Endo get a new one, NEVER ACCEPT A DOCTOR WHO WON'T LISTEN TOO YOU@zmcarver
-
Like -
Helpful -
Hug
2 ReactionsHas anyone mentioned adrenal insufficiency to you or Addisons disease? I have that. The danger with this disorder is if you go into adrenal crisis. You need to carry with you always an emergency injection kit with steroids if that happens.
-
Like -
Helpful -
Hug
3 Reactions@zmcarver In my experience, conventional medicine does not allow for the time or resources to solve chronic issues. The only time I've made progress is with a functional or holistic MD. Functional medicine offers so many more detailed tests, that can show so much more than standard bloodwork. My functional medicine doctor ordered the DUTCH complete test and NutrEval test through Rupa after my first appointment, and the answers to decades of symptoms were right there. I would suggest finding a functional medicine practitioner in the state that you live in, so they can also prescribe medication if needed. In some states NPs and PAs can also write scripts. Genetic testing has also provided answers for me and my daughters, and their future children. I used sequencing. My functional medicine doctor uses dnasupplementation.
-
Like -
Helpful -
Hug
2 Reactions@progressfinally
and
@zmcarver
I agree. I suggest adding a written page to the emergency kit: one side listing medications and allergies, and the other a short version of the Addison’s crisis protocol.
The reason for this is:
Personal Experience Report No. 1
(Six additional reports detailing instances of misdiagnosis are available upon request.)
My first serious medical experience after I moved from the US to Germany occurred when my general practitioner referred me to a regional hospital due to severe lower abdominal pain, restricted mobility, and suspected inflammatory disease. Upon admission, I informed the hospital staff about my diagnosed adrenal insufficiency and explicitly emphasized the urgency of a cortisol test. At that time, I was already severely weakened and showed clear signs of cognitive impairment.
During the inpatient admission process, several failed attempts were made to insert a venous line in my arm, until a vein in my hand was finally used. The nurse commented, “You have bad veins”. My mention of having Von Willebrand Syndrome Type 2 and 5 was met with no understanding or response.
After 12 hours of saline infusion, my hand was noticeably swollen. A nurse hit my swollen hand to wake me and remarked: Your hand is swollen – you need to press the call button. The noticeably confused state I was in went unrecognized.
On the second day, a CT scan was performed, which revealed diverticulosis – a diagnosis that had been known for over 35 years. During the morning ward round, I was then advised to undergo colon surgery, without any further investigations or discussion. Once again, I strongly emphasized the need for a cortisol test – again, there was no response from the medical staff.
On the third day, the infusion therapy had slightly stabilized my condition. I remembered my emergency kit in my suitcase, injected myself intramuscularly with hydrocortisone, and was able to stabilize myself temporarily. During the subsequent ward round, the attending physician remarked, “You have recovered very well here – so now we can talk about the colon surgery”. At that point, it became clear to me that I was on the verge of becoming the victim of a serious medical error. I immediately demanded to be discharged.
Despite multiple notes that I react with anaphylactoid responses to sulfate-based medications and fluoroquinolones, my discharge papers included a prescription for ciprofloxacin, a drug from precisely this substance group.
My case clearly illustrates the risks of inadequate, standardized, and poorly patient-centered medical treatment. Chronically ill and complex patients, in particular, need careful, individualized, and evidence-based care—supported by expertise, attentiveness, and genuine, respectful communication. The current system has serious shortcomings that not only cause suffering on a personal level but also increase national economic costs in the long run.
It is my wish to draw more attention to this issue and to work together to find solutions that sustainably improve the quality of care.
-
Like -
Helpful -
Hug
2 Reactions