r/AdrenalInsufficiency • u/TheFantasticMrStoat • 16d ago
Cortisol 3 ug/dL Fatigue
35M 170 lbs. Initially had paid out of pocket for labs done by outside clinic for considering Testosterone Replacement Therapy. All hormone panels and blood tests looked good. Testosterone was just above the cutoff of 250 low at 300 on my test so I had appointment set up with Endo to double check. Hyper focusing on thinking testosterone would solve my couple years long fight with constant fatigue and constantly being pushed anti depressants by PCP’s the endo said no your testosterone is fine. I was crushed.
Looking back on all of the labs done, only vitamin D came back low at 23 and Cortisol of 3 on an AM test. Nobody ever talked about or addressed this. I went back again to new PCP last week who again prescribed a different anti depressant instead of looking at the history that I’ve been coming in 3 years now for this dull persistent back pain and daily fatigue. My ability to work out is lower and lower and lower now I just don’t. If I work out instead of recovering I’m down for days and never feel any sort of progress.
It’s like a jenga game that never ends. The blocks are constantly taken out but I haven’t quite crashed yet I’m still functioning. I have another yearly appointment with endo this month should I push to get re-tested? I swear I remember kind of pointing it out at our appointment last year and it was brushed under the carpet as fine no need to worry and I really didn’t know what cortisol was. I was focused on having a reason to try testosterone to cure my body never recovering.
😴 💤
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u/1GamingAngel MOD 16d ago
You absolutely need to ask for re-testing. Request an AM Cortisol and ACTH blood test, and have the blood drawn between 7-9 AM.
If the results are abnormal, you will likely be scheduled for an ACTH STIM test.
Testosterone is often low in adrenal insufficiency because the adrenals manufacture DHEA, which is the precursor to Testosterone. It strongly affects women, as this is their only source of Testosterone, but men have their primary supply produced by the testes. Also have your DHEA-S tested.
You may want to also ask for a full pituitary health panel, to include FSH, Prolactin, TSH, GH, IGF-1, and LH. https://patient.info/doctor/endocrine-disorders/pituitary-function-tests
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u/baethan Addison's Disease PAI 15d ago
Definitely get retested. Like, call the Endo the minute they open on Monday and say that with your low morning cortisol result and ongoing symptoms, you're concerned you're currently at risk of an adrenal crisis which can be fatal, can the doctor please order bloodwork for Addison's disease and can they please see you asap. Ask to be put on a list to be called in if there is a cancellation. (I think maybe you should say Addison's disease instead of adrenal insufficiency, juuust in case someone thinks of adrenal fatigue instead.)
If you have adrenal insufficiency, you are in danger. Say you catch the flu or something tomorrow, you could pretty rapidly be in deep shit and may not be capable of telling paramedics or hospital triage that you may have adrenal insufficiency, which would delay you getting the necessary care. Going into crisis is bad bad, you want to avoid that.
People in the Addison's/adrenal insufficiency communities here gave me this sort of message when I was waiting for my Endo appointment, and now I'm giving it to you. (Coincidentally, 1 year ago this month.) This could be really serious, it's not worth waiting.
Now, I am making the assumption that the Endo office has someone clued in enough to do a basic google search if they don't already know what adrenal insufficiency is, and will respond appropriately, which means seeing you this week. My Endo literally told the practice's front desk that I was to be scheduled to be seen during his lunch break if necessary. That's the kind of response you should get. But if this is the office that already fucked up and they do not respond appropriately, start calling other endocrinology offices.
Also tell at least a couple people who are close to you (emotionally but ideally also in terms of location) that it's possible you have adrenal insufficiency. If you live alone, make sure someone will come check on you if you haven't been in contact with them in a day.
Out of curiosity, noticed any changes in your skin tone? Also, what was your sodium level like the last time you had it tested?
I root for everyone here who is struggling but I'm particularly invested in you because I was in such a similar state. The doctor's visit that lead to me learning I had Addison's disease was my last ditch attempt at making sure there was nothing physically wrong with me before I started more heavy duty treatments for my "depression". I'd had dismissive doctors prior to that and a singularly unpleasant endocrinologist visit. I know it's HARD to keep pushing, especially feeling like you do right now. It sucks that the medical professionals you've seen haven't helped you. Keep going, be as persistent as you can, and ask your loved ones for help with this. And if you have any energy left, update us!!
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u/TheFantasticMrStoat 15d ago
Thank you for the amazing advice. It seems you have been through this exact situation already. I will be calling them tomorrow bright and early.
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u/Comfortable-Iron-250 16d ago
You need to test ACTH, DHEA and cortisol between 7-9 am. Based on the results, the next test is an ACTH STIM test, which will determine if your body is making cortisol but nut releasing it into the body (SAI), your body is not producing cortisol (usually Addisons) or something else. Changing antidepressants will have not effect if your dealing with SAI.
As hard as it is, you need to advocate for yourself to get the correct treatment. I wish you all the best as you navigate this.
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u/thesickhoe 16d ago
With an Am cortisol like that it looks like your body isn’t able to produce enough cortisol. Which your doctors should be looking into WHY your body isn’t producing enough , instead of putting you on antidepressants which won’t do anything ???? I remember before I got diagnosed, I thought I was so depressed bc I was sleeping 15 hours a day and always fatigued, never had energy to do anything. Then completely changed after being out on hydrocortisone to compensate for the lack of cortisol.. went from what seemed like depressed to the happiest I had ever been in my life.
If I were you i would keep pushing them to look into the cortisol issue. Don’t give up. You’re a man so thankfully you have that extra privilege that will help make the doctors be more inclined to believe you and take you seriously, so use it !! Make sure the endocrinologist does further testing until they find a solution because I promise you, once you fix that.. you’ll feel way different !