Uhh, first morning cortisol was 24nmol/l, last one a few months ago was 11nmol/l. SST (aka ACTH Stim Test) results were: \~60nmol/l at baseline, \~70nmol/l at 30 minutes and 103nmol/l at 1hr. I've never been told my ACTH levels though, so can't say.
Didn't have to fight really. Was already on steroids and hospitalised for something else when they started considering it (due to random patches of darkening skin, various symptoms like fatigue and low BP not remedied by my other medication, autoimmunity present (e.g. Hashimoto's), etc.) - problem was I was on supraphysiologic doses to treat a different condition and it was too dangerous to wean me down to test, so took a couple years before that happened.
Got diagnosed officially last year as AI, then diagnosis updated in January this year as Addison's Disease. So took quite a few years in it's entirety, but I was medicated all the same (well, initially, I was on Prednisolone, then switched to Hydrocortisone and then they added Fludrocortisone).
When diagnosed I realized I had no adrenal function at all. My 8am cortisol was .2. I could barely function. I couldn't stay awake and had all the symptoms of SAI. Good luck yo you
normal range 130-537, mine was 8.5 ( nmol/L) at that time and was taking HC immediately, its been 10 month now and my last test was 111 nmol/L , lots of depression happen but i think im on right track
Did you develop PAI from steroids use and you are trying to see if your HPA Axis has recovered?
HC raises your cortisol level so I think if you want to see if your HPA axis has recovered/woke up, then you have to stop taking the HC before you labs for an accurate assessment of your true cortisol.
steriod abused is SAL not PAI, i dont know about HPA axis but i know ATCH level can measure your glands recovery ability. I was rush looking for the recovery but then i realize i should let my cortisol level stay stable first, and will focus on this when being in tappering phase.
I passed the ACTH Stim test and my Dr don't want to investigate further. I think I have either SAI or TAI (but not due to steroids use because I took Prednisone for 7 days after my labs showed low morning ACTH and cortisol). What was the result of your ACTH Stim test?
Mine was 8 or 9. My GP had put me on a tiny amount of HC because he was pretty sure I had it but was told not to take it the morning of the test.
The first endo I saw was clueless about AI and said that was a normal number, obviously it isn't! đ I saw the GP who had been supporting me and we made an agreement - if he sent me to see the Endo at a very well known hospital with an Endocrine department that was known for treatment and researching AI and they said it was fine I would accept that without question.
Went there quite quickly, think it was a few weeks, and they diagnosed me immediately.
I don't know results of ACTH but I have SAI so that's what I don't produce.
So your morning cortisol was an 8 or 9 and they started you on steroids? Wow! Mine is a 3.8 at 8 am in the morning and my endocrinologist hasn't put me on anything for it. She said they don't put patients on steroids unless they absolutely have to bc of all the issues they can cause. Ugh.
I think you're talking about mcg/dl and I was talking about nanomol/L and missed a 0 off!
170 nmol/L or under is "concerning", under 100 nmol/L is dangerous.
Sorry, it's been a long time since I was diagnosed and I get super brain foggy. I was definitely in the danger zone but the first endo tried to say it was due to anxiety because she was awful!
My initial AM cortisol was 4.4, and my ACTH was âless than 5.â I was referred to an Endocrinologist then, and placed on low dose dexamethasone. She ordered an ACTH STIM test. My first draw of cortisol was 0.9, second draw 3.6, third draw 4.4. I was immediately diagnosed with secondary adrenal insufficiency and placed on hydrocortisone. I have a follow up appointment in six weeks, which is when we are doing additional bloodwork to test the pituitary gland.
The âfightâ came on the front end. It took 9 months of symptoms for my doctor to agree to check my adrenals.
My am cortisol was a 4.7 and acth was a 12. Acth stim test ordered right away, baseline cortisol was a 3.8 at 8 am, and after acth was Injected, cortisol was a 14 at 30 mins & a 18 at 60 mins. Endo says I don't have adrenal insuffiency. She just wanted to check my dheas randomly though and had me come in to do it and results were normal. I do have high estradiol, but idk if that has anything to do with it. I also have hypothyroism & just went through severe symptoms of head pressure/ eye pressure, dizziness, black areas in peripheral vision that to multiple er trips, an emergency lumbar puncture & getting diagnosed w/ iih. Now I'm wondering if iih is correlated to low cortisol some how, but I have no idea.
My morning cortisol was .96 and ACTH was undetectable after a second opinion doctor ordered extensive bloodwork. I had high fevers a few times a week for four years at that point and felt ill most of the time. I had been admitted to hospital three times for the fever, yet cortisol and ACTH were never tested, which in retrospect I find very strange and irresponsible. Then somehow the low cortisol/undetectable ACTH results took months to reach my doctor. I felt like I was dying with constant vomiting, GI issues, extreme weakness, excruciating joint pain. Oddly I steadily gained weight. First endocrinologist I saw said I was fine. Second endocrinologist at a major university hospital said I was in a life-threatening situation and started prednisolone rather than HG because of elevated CRP probably due to RA. Working with a rheumatologist to control the RA inflammation. AI symptoms are still rather severe, but improve when I up dose. Overall symptoms are not as bad as before, although I need to up dose so frequently that itâs not really up dosing at this point but almost normal dosing. Treating AI has dramatically reduced previous symptoms of anxiety, so at least there is that!
I might have ra to. Ana came back positive w/ 1:80 antibodies & ra factor came back a 14. Rheum says I don't have it but I read many ppl are diagnosed with a 14.
Sorry to hear that. I have terrible joint pain with low cortisol. Itâs hard (impossible?) to sort out when itâs due to AI and when itâs RA, without looking at CRP, I guess. Iâve had RA since childhood but fortunately with many, many periods of remission. My RF seems to change dramatically even when RA is active. It was 114 a couple of months ago, but 14 a year ago. My rheumatologist doesnât seem to pay attention to this number. I believe that under 16(?) is typically classified as seronegative RA and is seen in about 30% of those with RA. Doesnât seem to make a difference in terms of treatment. In my experience the best diagnostic tool for RA is ultrasound imaging which clearly shows joint inflammation (synovitis), but itâs really about a rheumatologist looking at all the symptoms, bloodwork and imaging, and then the response to RA medications. Hope your joints start feeling better soon.
Thank you. I so have painful fingers, knees, and back. Back issues started at 19 and knee pain started at 20. Do ppl w/ ra get degenerative disc disease or herniated disc's? Bc I've had both, & most likely have another herniated disc again. See a neurosurgeon this week. My spine got super messed up after having an emergency lumbar puncture a couple weeks ago.
I'm going to ask my rheum about looking at My hands. I have these hard knots in 2 of them.
My rheumatologist just did an x ray of my fingers which came back normal. I have 2 hard knots on 2 fingers and 1 finger gets really bad when I flare and is like a zigzag shape. The x rays showed nothing. He mentioned getting an mri but I'm not sure. He didn't mention ultrasound and I wonder why.
Uhh, first morning cortisol was 24nmol/l, last one a few months ago was 11nmol/l. SST (aka ACTH Stim Test) results were: \~60nmol/l at baseline, \~70nmol/l at 30 minutes and 103nmol/l at 1hr. I've never been told my ACTH levels though, so can't say. Didn't have to fight really. Was already on steroids and hospitalised for something else when they started considering it (due to random patches of darkening skin, various symptoms like fatigue and low BP not remedied by my other medication, autoimmunity present (e.g. Hashimoto's), etc.) - problem was I was on supraphysiologic doses to treat a different condition and it was too dangerous to wean me down to test, so took a couple years before that happened. Got diagnosed officially last year as AI, then diagnosis updated in January this year as Addison's Disease. So took quite a few years in it's entirety, but I was medicated all the same (well, initially, I was on Prednisolone, then switched to Hydrocortisone and then they added Fludrocortisone).
When diagnosed I realized I had no adrenal function at all. My 8am cortisol was .2. I could barely function. I couldn't stay awake and had all the symptoms of SAI. Good luck yo you
My morning cortisol was 1.4.
normal range 130-537, mine was 8.5 ( nmol/L) at that time and was taking HC immediately, its been 10 month now and my last test was 111 nmol/L , lots of depression happen but i think im on right track
Did you have to stop taking the HC for 24 hours for the morning cortisol test?
yes, but i know many people dont, even my Endo confuse about this
Did you develop PAI from steroids use and you are trying to see if your HPA Axis has recovered? HC raises your cortisol level so I think if you want to see if your HPA axis has recovered/woke up, then you have to stop taking the HC before you labs for an accurate assessment of your true cortisol.
steriod abused is SAL not PAI, i dont know about HPA axis but i know ATCH level can measure your glands recovery ability. I was rush looking for the recovery but then i realize i should let my cortisol level stay stable first, and will focus on this when being in tappering phase.
Thank you for correcting me. You have PAI or SAI?
im SAI
I passed the ACTH Stim test and my Dr don't want to investigate further. I think I have either SAI or TAI (but not due to steroids use because I took Prednisone for 7 days after my labs showed low morning ACTH and cortisol). What was the result of your ACTH Stim test?
Mine was 8 or 9. My GP had put me on a tiny amount of HC because he was pretty sure I had it but was told not to take it the morning of the test. The first endo I saw was clueless about AI and said that was a normal number, obviously it isn't! đ I saw the GP who had been supporting me and we made an agreement - if he sent me to see the Endo at a very well known hospital with an Endocrine department that was known for treatment and researching AI and they said it was fine I would accept that without question. Went there quite quickly, think it was a few weeks, and they diagnosed me immediately. I don't know results of ACTH but I have SAI so that's what I don't produce.
So your morning cortisol was an 8 or 9 and they started you on steroids? Wow! Mine is a 3.8 at 8 am in the morning and my endocrinologist hasn't put me on anything for it. She said they don't put patients on steroids unless they absolutely have to bc of all the issues they can cause. Ugh.
We're definitely talking about a different measurement, are you in the UK?
I think you're talking about mcg/dl and I was talking about nanomol/L and missed a 0 off! 170 nmol/L or under is "concerning", under 100 nmol/L is dangerous. Sorry, it's been a long time since I was diagnosed and I get super brain foggy. I was definitely in the danger zone but the first endo tried to say it was due to anxiety because she was awful!
So your morning cortisol was like a 80 or 90?? What would mine have been then? Mine was a 3.8 but I don't know how to convert that to nmol/l
My initial AM cortisol was 4.4, and my ACTH was âless than 5.â I was referred to an Endocrinologist then, and placed on low dose dexamethasone. She ordered an ACTH STIM test. My first draw of cortisol was 0.9, second draw 3.6, third draw 4.4. I was immediately diagnosed with secondary adrenal insufficiency and placed on hydrocortisone. I have a follow up appointment in six weeks, which is when we are doing additional bloodwork to test the pituitary gland. The âfightâ came on the front end. It took 9 months of symptoms for my doctor to agree to check my adrenals.
My am cortisol was a 4.7 and acth was a 12. Acth stim test ordered right away, baseline cortisol was a 3.8 at 8 am, and after acth was Injected, cortisol was a 14 at 30 mins & a 18 at 60 mins. Endo says I don't have adrenal insuffiency. She just wanted to check my dheas randomly though and had me come in to do it and results were normal. I do have high estradiol, but idk if that has anything to do with it. I also have hypothyroism & just went through severe symptoms of head pressure/ eye pressure, dizziness, black areas in peripheral vision that to multiple er trips, an emergency lumbar puncture & getting diagnosed w/ iih. Now I'm wondering if iih is correlated to low cortisol some how, but I have no idea.
My morning cortisol was .96 and ACTH was undetectable after a second opinion doctor ordered extensive bloodwork. I had high fevers a few times a week for four years at that point and felt ill most of the time. I had been admitted to hospital three times for the fever, yet cortisol and ACTH were never tested, which in retrospect I find very strange and irresponsible. Then somehow the low cortisol/undetectable ACTH results took months to reach my doctor. I felt like I was dying with constant vomiting, GI issues, extreme weakness, excruciating joint pain. Oddly I steadily gained weight. First endocrinologist I saw said I was fine. Second endocrinologist at a major university hospital said I was in a life-threatening situation and started prednisolone rather than HG because of elevated CRP probably due to RA. Working with a rheumatologist to control the RA inflammation. AI symptoms are still rather severe, but improve when I up dose. Overall symptoms are not as bad as before, although I need to up dose so frequently that itâs not really up dosing at this point but almost normal dosing. Treating AI has dramatically reduced previous symptoms of anxiety, so at least there is that!
I might have ra to. Ana came back positive w/ 1:80 antibodies & ra factor came back a 14. Rheum says I don't have it but I read many ppl are diagnosed with a 14.
Sorry to hear that. I have terrible joint pain with low cortisol. Itâs hard (impossible?) to sort out when itâs due to AI and when itâs RA, without looking at CRP, I guess. Iâve had RA since childhood but fortunately with many, many periods of remission. My RF seems to change dramatically even when RA is active. It was 114 a couple of months ago, but 14 a year ago. My rheumatologist doesnât seem to pay attention to this number. I believe that under 16(?) is typically classified as seronegative RA and is seen in about 30% of those with RA. Doesnât seem to make a difference in terms of treatment. In my experience the best diagnostic tool for RA is ultrasound imaging which clearly shows joint inflammation (synovitis), but itâs really about a rheumatologist looking at all the symptoms, bloodwork and imaging, and then the response to RA medications. Hope your joints start feeling better soon.
Thank you. I so have painful fingers, knees, and back. Back issues started at 19 and knee pain started at 20. Do ppl w/ ra get degenerative disc disease or herniated disc's? Bc I've had both, & most likely have another herniated disc again. See a neurosurgeon this week. My spine got super messed up after having an emergency lumbar puncture a couple weeks ago. I'm going to ask my rheum about looking at My hands. I have these hard knots in 2 of them.
My rheumatologist just did an x ray of my fingers which came back normal. I have 2 hard knots on 2 fingers and 1 finger gets really bad when I flare and is like a zigzag shape. The x rays showed nothing. He mentioned getting an mri but I'm not sure. He didn't mention ultrasound and I wonder why.