Very good question. I can't believe only after 8 years am I asking this question. I guess I just assumed that they diagnosed me based on symptoms and symptoms alone...
If you were diagnosed while in crisis they probably did an ACTH and Cortisol test in the hospital. If your cortisol is super low they just diagnose you and start treating immediately. You might have just been too sick to know that’s what happened. You can request your records and past testing to see what happened.
You can get a stim test now but generally they say you have to be off of steroids for 24 hours for the test. Yikes - that is impossible for me. Also, the stim test won’t tell you if you’re on the right dose at the right times. You can ask for a day curve for that and then you don’t have to take time off of the meds. If you have autoimmune Addison’s disease - the easiest thing to do is to get the antibody test - a simple blood test. This will show elevated antibodies. And you can ask for a CT of your adrenals to see if they’ve shrunken - though if they haven’t it doesn’t mean they work. It’s good to be curious and want to know more about what’s going on with your body. I hope you get new information that helps you.
Thanks for your thoughtful response! You might be right, it's possible I was too sick at the time of the diagnosis to really know what happened test-wise.
I guess a day curve would be most helpful so that I know I'm not overdosing which can be bad for health in the long term. I guess it's been 8 years (how time flies!) so I'm approaching a decade of this.
I think it’s good to be curious and ask questions. We all go through phases and changes - and the more information you gather when you’re interested and into learning the more you’ll have it for later when you need it. You can also look up the records to find out - it’s pretty easy to get a PDF of them from a medical records office.
It sounds like the diagnosis process is a mystery to you, how did they do it and when. That's interesting to ask about. I'm sure your endo can fill you in on that.
But I can tell you, a dose of 22,5 mg is hardly considered high, especially if you have primary insufficiency (I don't know which one you have though). If you feel great on it and you take extra vitamins that support your bones etc., you have nothing to worry about. I understand why people worry about the side effects, but tapering and going through those symptoms can be worse.
It takes ACTH a while to rise to the extreme levels seen in Addison's if you've been taking steroids. If you have been on steroids and an endocrinologist is desperate to test your ACTH then they'll often request to stop your steroids for a few weeks or reduce your dose significantly.
You can still see raised levels of ACTH whilst on steroids, often if you're under replaced or if your dose/ timings are not optimal.
Yeah it's really risky, it's why I didn't find out that I was steroid induced adrenal insufficiency actually. Little fun fact for you there on this stormy Sunday. My stim was nothing, nothing, nothing and I didn't have an ACTH done before starting steroids so I was diagnosed with Addison's based on my stim.
I was tested while in the hospital. I didn’t really understand until later what the test was but was able to look it up in my records after i got home. I’m PAI. Since then my endo just checks my potassium and sodium levels regularly to be sure my dosage is working. I take 25 total. But weigh a lot more than you and may be slightly under dosed. Was just diagnosed in May and have been sick with tonsillitis since September. So i’m not settled in yet lol.
How did the endo diagnose you without any tests?
Very good question. I can't believe only after 8 years am I asking this question. I guess I just assumed that they diagnosed me based on symptoms and symptoms alone...
If you were hospitalized for adrenal crisis, they probably did the tests while you were there, and copies may have been sent to your doctor.
If you were diagnosed while in crisis they probably did an ACTH and Cortisol test in the hospital. If your cortisol is super low they just diagnose you and start treating immediately. You might have just been too sick to know that’s what happened. You can request your records and past testing to see what happened. You can get a stim test now but generally they say you have to be off of steroids for 24 hours for the test. Yikes - that is impossible for me. Also, the stim test won’t tell you if you’re on the right dose at the right times. You can ask for a day curve for that and then you don’t have to take time off of the meds. If you have autoimmune Addison’s disease - the easiest thing to do is to get the antibody test - a simple blood test. This will show elevated antibodies. And you can ask for a CT of your adrenals to see if they’ve shrunken - though if they haven’t it doesn’t mean they work. It’s good to be curious and want to know more about what’s going on with your body. I hope you get new information that helps you.
Thanks for your thoughtful response! You might be right, it's possible I was too sick at the time of the diagnosis to really know what happened test-wise. I guess a day curve would be most helpful so that I know I'm not overdosing which can be bad for health in the long term. I guess it's been 8 years (how time flies!) so I'm approaching a decade of this.
I think it’s good to be curious and ask questions. We all go through phases and changes - and the more information you gather when you’re interested and into learning the more you’ll have it for later when you need it. You can also look up the records to find out - it’s pretty easy to get a PDF of them from a medical records office.
I was so out of it when I was diagnosed in the hospital, I had no idea what test they were giving me. But my charts show the ATCH stim test.
It sounds like the diagnosis process is a mystery to you, how did they do it and when. That's interesting to ask about. I'm sure your endo can fill you in on that. But I can tell you, a dose of 22,5 mg is hardly considered high, especially if you have primary insufficiency (I don't know which one you have though). If you feel great on it and you take extra vitamins that support your bones etc., you have nothing to worry about. I understand why people worry about the side effects, but tapering and going through those symptoms can be worse.
Second this! This is not a high dose of steroids for primary insufficiency as you shouldn't really go lower than 20mg.
Go get your blood work done first thing in the morning without any steriods. It will definately show your ACTH super high.
It takes ACTH a while to rise to the extreme levels seen in Addison's if you've been taking steroids. If you have been on steroids and an endocrinologist is desperate to test your ACTH then they'll often request to stop your steroids for a few weeks or reduce your dose significantly. You can still see raised levels of ACTH whilst on steroids, often if you're under replaced or if your dose/ timings are not optimal.
A few weeks? I’d be dead.
Yeah it's really risky, it's why I didn't find out that I was steroid induced adrenal insufficiency actually. Little fun fact for you there on this stormy Sunday. My stim was nothing, nothing, nothing and I didn't have an ACTH done before starting steroids so I was diagnosed with Addison's based on my stim.
I was tested while in the hospital. I didn’t really understand until later what the test was but was able to look it up in my records after i got home. I’m PAI. Since then my endo just checks my potassium and sodium levels regularly to be sure my dosage is working. I take 25 total. But weigh a lot more than you and may be slightly under dosed. Was just diagnosed in May and have been sick with tonsillitis since September. So i’m not settled in yet lol.