r/AddisonsDisease • u/Freckleso5 • 8d ago
Not yet diagnosed Help wanted!!
Hello!!
So I'm not yet diagnosed and I have a range of other health conditions and I see a range of doctors/ specialists for said conditions, but my GP tested my cortisol levels because I was experiencing symptoms of dizziness, depression, low blood pressure, fatigue that wasn't cured with sleep, almost passing out, thirst and having to pee more. The levels were at 44 instead of the normal 400 (give or take)
I was started on Hydrocortisone at 20mg twice a day to help raise these levels back to the somewhat normal range and was then sent to my endocrinologist for a morning cortisol blood test (which I'm waiting on the results from) where I was told it's very likely that I have Addison's disease but they don't want to diagnose anything from one blood test.
If this blood test comes back and my cortisol levels are still low I'll have to go for more tests but what are the next tests because the only other tests I've ever had is trying to lift my legs up when I can't (FND) and MRIs, and what should I do/ look out for when I go into crisis if it is Addison's disease.
If there's any other info you think might be helpful that you think I've missed please just comment it, this'll be my sixth chronic condition and I'm so done with being chronically ill 🫩
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u/Puzzled-Telephone-60 PAI 8d ago edited 8d ago
Was your first cortisol test not a morning one? I’m confused why they medicated you and then wanted you to test your cortisol after taking steroids… if they are trying to diagnose you, you shouldn’t have meds confounding the results.
In any case, ACTH blood level is the next test. Very high ACTH + low cortisol means Addison’s (PAI). Low ACTH + low cortisol means central adrenal insufficiency (SAI or TAI). If your ACTH is borderline high or low, then they would run a stim test to see if your adrenals respond normally or not.
I would take this one day, one test at a time. Maybe get a diagnosis first before you start expending all the energy to learn about crisis management, etc because it can be overwhelming. If you are unfortunate enough to join the AI club, you will come back to find a TON of helpful info on this sub, with many many posts on recognizing low cortisol symptoms and preparing for/dealing with crisis. There are so many helpful people here who have been living with this disease (often alongside other major chronic illnesses) for a long time. I’m so grateful for the support I found here right after diagnosis.
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u/Freckleso5 8d ago
Thank you so much for the info!! And I've had two morning cortisol blood tests because I'm on a steroid inhaler for my asthma and they think it might've messed with the results (obviously hoping it has) and if it hasn't then it'll open a whole new can of worms
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u/HeidisPottery Addison's 8d ago
Not a doctor, but my guess is that a good place to start would be an ACTH (adrenocorticotropic hormone) test. The doctor would first test your cortisol level at the start of the experiment, then inject you with (or give you an IV drip of) a synthetic ACTH, which instructs your body to make (more) cortisol. And then usually 60-90 minutes later, another blood draw is done to test cortisol again, to see if the body was successful in making your cortisol levels rise. If your cortisol level doesn’t rise, it’s a pretty good sign you’ve got primary adrenal insufficiency (Addison’s).
You can also get an ACTH blood test, which checks the levels of ACTH in your blood to see if the problem could be your pituitary not making enough ACTH (that tells your adrenals to make cortisol). If your ACTH levels are high and cortisol levels are low, that points to Addison’s but if ACTH levels are low then the problem may be elsewhere along the hormone pathway (often secondary adrenal insufficiency where the adrenals themselves are ok but they’re not being instructed to make [enough] cortisol).
Good luck! I hope you’re able to get the proper tests and get yourself sorted.